Individuals and their families who experience a medical/physical illness often find the use of psychoeducational or support groups helpful as they navigate the illness/disease process. This assignment provides students the opportunity to visit a support group of your choosing (DBT skills group for patients with Bipolar,depression and anxiety and other personality disorders). Your observations will serve as the basis for a paper that will critically consider clinical practice concepts pertinent to health care social work presented in this course and related to the specific diagnosis of your chosen support group. That is, the support group serves as your clinical “observation” and should focus on the medical/physical diagnosis and its impact on patients and families, and notion any particular attendees of the support group. For the purpose of this assignment, any analysis of patients’ and family members’ experiences (e.g., adjustment to diagnosis, coping, etc.) should be discussed in aggregate form and not in terms of unique individuals.
Task:
- Preliminary Tasks:
- Select a patient/family support group. (Outpatient open to the public is most feasible, however, Inpatient is also acceptable)
- Contact the group facilitator for permission to attend one meeting.
- Submit “Support Group Prospectus” to the instructor for approval
- Attend One Meeting. (If the group facilitator expects an introduction, then state the following: “My name is ___, and I am a graduate student at Rutgers University’s School of Social Work. I am taking a course in health care, and need to attend a support group for one of my assignments. I am interested in understanding more about____ (diagnosis) and I am grateful to you and to ____ (group facilitator) for allowing me to attend.”
- Write an analysis that explicitly integrates course concepts as instructed below.
Instructions:
- Papers will comprise no more than 4 total pages, with 3 “analysis” pages:-
Cover page (page 1)-
Analysis (pages 2-4): four pages typed, double-spaced, 12 pt font, one-inch margins. *
Content should include:
Cover Page (Page 1):
~ Your name, course, and date due.
~ Diagnosis, (outpatient) and purpose of the group (DBT SKILLS FOR PATIENTS WITH BIPOLAR AND PERSONALITY DISORDERS) DBT skills group for patient’s at an outpatient and intensive outpatient program; Outpatient Behavioral Health at Overlook Medical Center
.~ To promote a strong culture of academic integrity, Rutgers has adopted the following honor pledge to be written and signed on examinations and major course assignments submitted for grading. Please type and sign on your cover page the following: On my honor, I have neither received nor given any unauthorized assistance on this assignment. Signed by ________. (the typed name is acceptable for electronic papers)
~ Anonymity/confidentiality footnote/acknowledgement
Analysis Pages (Pages 2-4):
~ This paper will view your chosen diagnosis and the experience of patients and families through the lens of course concepts only from our Gehlert & Browne textbook Chapter 13 “Families, Health and Illness” by John S. Rolland. Explicitly integrate (cite) course concepts throughout your analysis.
That is, avoid merely “telling the story” of what happened during the support group session, but link information observed at a group to specific Ch. 13 concepts.
*Note: Include the patient in the “Family Illness Model” (p. 319) and other chapter concepts.
Use concepts from the entire Chapter 13 in your discussion/analysis of the following:
** Psychosocial Types of Illness (p. 320)
A .Onset
- Course
- Outcome
d .Incapacitation
** Phases of Illness Developmental Tasks (p. 322; Table 13.1)
–Note: Explicitly connect your analysis to the three specific phases and the numeric tasks and as relevant to your group/diagnosis (i.e., identify which phase and which numbers within each phase that your case examples/analysis links to).
For the paper: It is essential that you protect the anonymity of others (e.g., use pseudonyms in place of actual names of persons and organizations and geographic locations); protect the confidentiality of others (omit any identifying or highly sensitive information that could link individuals and agencies with the content of this paper). [Modify and cut/paste this verbiage onto the cover page, which acknowledges you have done so]
Excellent papers address relevant course concepts and are well-written, well-organized, informal English, demonstrate a masterful ability to analyze the participants in terms of clinical practice concepts learned in Ch. 13, use of verbatim quotes and paraphrasing participant (including group facilitator) statements that serve as “case material” and “information” to support your analysis, and show evidence of critical thinking and client strengths. [Analytic depth: state/identify concepts, define & cite, provide an example, discuss/analyze how example illustrates the concept, integrate/cite course materials—yet, avoid stringing together quotes from the literature. I want to hear your voice, your analysis.
Because this paper draws only from Chapter 13, use only page numbers for in-text citations (only for the purpose of this paper, and to save space). However, be sure to use quotation marks when quoting the textbook verbatim (which should be kept to a minimum).
~ First-person voice is preferred.
HERE ARE SOME LINKS TO HELP YOU WITH THE PAPER!!!
Book pdf is attached so you can use the appropriate pages listed above
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3191933/
https://www.psychiatrictimes.com/special-reports/dialectical-behavior-therapy-skills-training-effective-intervention
https://www.researchinpsychotherapy.org/index.php/rpsy/article/view/219/191
fmatter.indd iifmatter.indd ii 9/21/11 7:56 PM9/21/11 7:56 PM
Praise for Handbook of Health Social Work, Second Edition
“The major strength is the organization and comprehensive content of the book. This is a book that
can serve as a reference book in any social worker’s library, regardless of whether they are practic-
ing in a health-care setting. There are no other books on this topic that are as comprehensive in
scope as the Handbook of Health Social Work, Second Edition.”
— Deborah Collinsworth, LAPSW, NSW-C,
Director of Nephrology Social Work Services,
Dialysis Clinics, Inc., West Tennessee
“I’m quite impressed by the comprehensive nature of this revision. It’s the enduring kind of text that
serves an immediate purpose for social work instruction while also providing a reference for future
practice. This is a book that you’ll want to keep on your shelf.”
— Kevin Lindamood,
Vice President for External Affairs at Health Care for the Homeless,
Adjunct Professor of Health Policy at the University of Maryland SSW
“Sarah Gehlert and Teri Browne have thoughtfully covered the topics. The readers of this book
will be empowered to deal with the daily challenges. It’s simple but far reaching, a rich knowledge
bank of social workers’ interventions, and will benefi t even policy makers in planning strategies to
improve patients’ quality of life.”
— Sujata Mohan Rajapurkar, PhD,
Medical Social Worker and Transplant Coordinator,
Muljibhai Patel Urological Hospital, Gujarat, India
“The book’s strengths include the high quality of writing and the expertise of its contributors. It
covers the fi eld of health social work in signifi cant depth and is sure to leave readers well informed.”
— Mary Sormanti, PhD, MSW,
Associate Professor of Professional Practice,
Columbia University School of Social Work
“Quite simply, this is the defi nitive volume for Health and Social Work. The fi rst edition was well-
executed, well-written, and comprehensive. In this second edition, Gehlert and Browne and their
expert contributors have confi dently managed to keep pace with current theory and empirical re-
search across a wide range of subject matter that will be of interest to practitioners, educators, and
researchers.”
— Michael Vaughn, PhD,
Assistant Professor, School of Social Work,
School of Public Health,
and Department of Public Policy Studies, Saint Louis University
fmatter.indd ifmatter.indd i 9/21/11 7:56 PM9/21/11 7:56 PM
fmatter.indd iifmatter.indd ii 9/21/11 7:56 PM9/21/11 7:56 PM
HANDBOOK OF HEALTH
SOCIAL WORK
SECOND EDITION
Edited by
SARAH GEHLERT and
TERI BROWNE
John Wiley & Sons, Inc.
fmatter.indd iiifmatter.indd iii 9/21/11 7:56 PM9/21/11 7:56 PM
This book is printed on acid-free paper. o
Copyright © 2012 by John Wiley & Sons, Inc. All rights reserved.
Published by John Wiley & Sons, Inc., Hoboken, New Jersey.
Published simultaneously in Canada.
No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means,
electronic, mechanical, photocopying, recording, scanning, or otherwise, except as permitted under Section 107 or 108
of the 1976 United States Copyright Act, without either the prior written permission of the Publisher, or authorization
through payment of the appropriate per-copy fee to the Copyright Clearance Center, Inc., 222 Rosewood Drive, Danvers,
MA 01923, (978) 750-8400, fax (978) 646-8600, or on the Web at www.copyright.com. Requests to the Publisher for
permission should be addressed to the Permissions Department, John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ
07030, (201) 748-6011, fax (201) 748-6008.
Limit of Liability/Disclaimer of Warranty: While the publisher and author have used their best efforts in preparing this
book, they make no representations or warranties with respect to the accuracy or completeness of the contents of this book
and specifi cally disclaim any implied warranties of merchantability or fi tness for a particular purpose. No warranty may be
created or extended by sales representatives or written sales materials. The advice and strategies contained herein may not
be suitable for your situation. You should consult with a professional where appropriate. Neither the publisher nor author
shall be liable for any loss of profi t or any other commercial damages, including but not limited to special, incidental,
consequential, or other damages.
This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It
is sold with the understanding that the publisher is not engaged in rendering professional services. If legal, accounting,
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Designations used by companies to distinguish their products are often claimed as trademarks. In all instances where John
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Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available
in electronic books. For more information about Wiley products, visit our Web site at www.wiley.com.
Library of Congress Cataloging-in-Publication Data:
Handbook of health social work / edited by Sarah Gehlert and Teri Browne. — 2nd ed.
p. cm.
Includes bibliographical references and index.
ISBNs 978-0-470-64365-5; 978-1-118-11589-3; 978-1-118-11591-6; 978-118-11590-9
1. Medical social work—Handbooks, manuals, etc. I. Gehlert, Sarah, 1948- II. Browne, Teri.
HV687.A2H36 2012
362.1‘0425—dc22
2011010997
Printed in the United States of America
10 9 8 7 6 5 4 3 2 1
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http://www.copyright.com
http://www.wiley.com
v
Contents
Foreword viii
Suzanne Heurtin-Roberts
Acknowledgments x
List of Contributors xi
Introduction xiii
PART I FOUNDATIONS OF SOCIAL WORK IN HEALTH CARE 1
1 ⏐ Conceptual Underpinnings of Social Work in Health Care 3
Sarah Gehlert
2 ⏐ Social Work Roles and Health-Care Settings 20
Teri Browne
3 ⏐ Ethics and Social Work in Health Care 41
Jared Sparks
4 ⏐ Public Health and Social Work 64
Marjorie R. Sable, Deborah R. Schild, and J. Aaron Hipp
5 ⏐ Health Policy and Social Work 100
Julie S. Darnell and Edward F. Lawlor
6 ⏐ Theories of Health Behavior 125
Sarah Gehlert and Sarah E. Bollinger
fmatter.indd vfmatter.indd v 9/21/11 7:56 PM9/21/11 7:56 PM
vi Contents
PART II HEALTH SOCIAL WORK PRACTICE: A SPECTRUM OF CRITICAL
CONSIDERATIONS 141
7 ⏐ Community and Health 143
Christopher Masi
8 ⏐ Physical and Mental Health: Interactions, Assessment, and Interventions 164
Malitta Engstrom
9 ⏐ Social Work Practice and Disability Issues 219
Rebecca Brashler
10 ⏐ Communication in Health Care 237
Sarah Gehlert
11 ⏐ Religion, Spirituality, Health, and Social Work 263
Terry A. Wolfer
12 ⏐ Developing a Shared Understanding: When Medical Patients Use
Complementary and Alternative Approaches 291
Penny B. Block
13 ⏐ Families, Health, and Illness 318
John S. Rolland
14 ⏐ Human Sexual Health 343
Les Gallo-Silver and David S. Bimbi
PART III HEALTH SOCIAL WORK: SELECTED AREAS OF PRACTICE 371
15 ⏐ Social Work With Children and Adolescents With Medical Conditions 373
Nancy Boyd Webb and Rose A. Bartone
16 ⏐ Social Work With Older Adults in Health-Care Settings 392
Sadhna Diwan, Shantha Balaswamy, and Sang E. Lee
17 ⏐ Substance Use Problems in Health Social Work Practice 426
Malitta Engstrom, Colleen A. Mahoney, and Jeanne C. Marsh
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Contents vii
18 ⏐ Nephrology Social Work 468
Teri Browne
19 ⏐ Oncology Social Work 498
Daniel S. Gardner and Allison Werner-Lin
20 ⏐ Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart
Disease, and HIV/AIDS 526
Wendy Auslander and Stacey Freedenthal
21 ⏐ Social Work and Genetics 557
Allison Werner-Lin and Kate Reed
22 ⏐ Pain Management and Palliative Care 590
Terry Altilio, Shirley Otis-Green, Susan Hedlund, and Iris Cohen Fineberg
23 ⏐ End-of-Life Care 627
Yvette Colón
Afterword 643
Candyce S. Berger
About the Editors 649
Author Index 651
Subject Index 677
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Foreword
It is both an exciting and a challenging time
to be a social worker in the fi eld of health. A
diversity of roles is available for social work-
ers. Areas of practice and opportunities for
inter- and transdisciplinary collaborations are
unprecedented in the history of the profession.
Social workers along with other professionals
are on the cutting edge of new health-relevant
programs and practices, with social workers
frequently in top leadership roles in these ef-
forts. To note just a very few examples, social
workers are providing genetic counseling and
mental health treatment, coordinating hospice
and palliative care, working with communities
to develop better access to cancer care and clini-
cal trials, advocating for and writing improved
health-relevant policies, developing health pro-
grams and practices, and conducting research
that provides an evidence base for effective
practice in social work and other professions.
A number of events and trends have come
to bear on this blossoming of social work in
health. The Patient Protection and Affordable
Care Act of 2010 (PPACA), itself the result of
decades of advocacy and study on the part of
many, including social workers, will radically
change the context in which health care is de-
livered in the United States. This change will
require profound and unsurpassed expertise
in complex systems and their relationships to
users of health care that is the domain of so-
cial workers. Effective implementation of the
PPACA will require social work expertise at
all levels, from front-line practitioner to policy
maker and executive.
The evidence-based practice movement in
social work and other health professions also
has been integral to the rising importance of
social work in health. From fi rst-level, or T1,
translation of research fi ndings to cultural and
community tailoring and dissemination and
diffusion, social work has a principal role to
play in getting health knowledge and knowl-
edge-based practice to the populations that
most can use it. Indeed, social work has been
and will continue to be a key source of research
producing such knowledge. As the profession
is focused on improving people’s well-being
through practice that targets interrelationships
among systems and people, social work re-
search is of great consequence for knowledge
production on which to base health-care re-
form and other efforts to improve health care
in the United States. Thanks to the concerted
and strategic efforts of academic social work
and professional social work organizations,
health social work research is growing and be-
ginning to fl ourish.
The growth of the social determinants per-
spective on health has fostered a crucial place
for social work in health. As a profession, so-
cial work has long understood the importance
of multiple life dimensions and experiences as
they affect human well-being across the life
cycle and has built its practice on such a per-
spective. As other health professions catch up
in this area, social work’s contributions can be
very infl uential in helping to prevent reinven-
tion of the wheel in both health care and dis-
ease prevention.
viii
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Foreword ix
I have noted just a few of the phenomena
leading to social work’s rich contributions to
health and great potential for even more. As a
postdoctoral fellow in applied anthropology, I
once worked in a hospital setting on a geriatric
consult team. Repeatedly I went to social work
staff for information and advice. Indeed, my
team (which included physicians, a nurse, and
a pharmacologist) held to the mantra of “go
ask a social worker, they know everything!”
The breadth and depth of social work exper-
tise in health is refl ected in and supported by
the material in the current work.
This volume is a crucial addition to the
libraries of seasoned practitioners as well as
an essential foundation for fl edgling social
workers ready to enter health as a practice
and research area. Both editors are respected
leaders in the fi eld of health and social work
with an abundance of experience, knowledge,
and passion for their work. They have brought
together a multiplicity of impressive contribu-
tors, all authorities in their respective areas,
who share their knowledge and wisdom. The
Handbook’s contributors address multiple
theoretical foundations, models, issues, and
dilemmas for the social worker in health.
Included are descriptions of skill sets and other
expertise needed for direct practice clinicians,
community workers, planners, policy makers,
researchers, advocates, and administrators.
The volume covers practice and research areas
ranging from chronic disorders to infectious
disease, from physical to mental disorders, and
all the gray areas in between.
However, the book is not simply a how-to
manual. Rather, it assesses the current state
of the fi eld while suggesting important new
directions and developments for the future of
social work in health. The ideas in this vol-
ume suggest that, perhaps, there is some truth
to the sentiment that “social workers know
everything.” Certainly they know a great deal
about working to improve health and about
what will be needed in the future to improve
the nation’s health. At a time of great change
in the United States in regard to facilitating the
production of better health for populations and
individuals, a ny social worker engaged in this
area would be well advised to have this out-
standing resource at hand.
Suzanne Heurtin-Roberts
Bethesda, Maryland
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Acknowledgments
The preparation of the second edition of this
Handbook involved the efforts of a number of
people. First and foremost was Jerrod Live-
oak, a very talented young man who again
helped us organize and edit the Handbook.
We could not have done it without his as-
sistance. Rachel Livsey and Kara Borbely of
John Wiley & Sons’ behavioral science divi-
sion were supportive throughout the process.
We join them in mourning the loss of Lisa
Gebo, a gifted member of the John Wiley
& Sons team who worked with us on the
fi rst edition and lost her life to breast can-
cer on June 14, 2010. We also would like
to thank these colleagues who reviewed the
book and provided valuable feedback: Gary
Rosenberg, Mount Sinai School of Medicine;
Mary Sormanti, Columbia University; Judy
Howe, Mount Sinai School of Medicine;
Kevin Lindamood, University of Maryland;
Deborah Collinsworth, Union University;
and Michael Vaughn, St. Louis University.
The 36 contributors to the Handbook, some
of whom were friends and others known to
us only by reputation prior to the collabora-
tion, worked hard and were patient with this
revision. Finally, we would like to thank our
spouses, Roy Wilson and Lyle Browne, who
were always willing to listen to our ideas and
to provide feedback and support.
x
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xi
List of Contributors
Terry Altilio, MSW, ACSW
Beth Israel Medical Center
New York, New York
Wendy Auslander, PhD
Washington University
St. Louis, Missouri
Shantha Balaswamy, PhD
Ohio State University
Columbus, Ohio
Rose A. Bartone, MSW, LCSW-R
New York Medical College
Valhalla, New York
Candyce S. Berger, PhD
Stony Brook University
Stony Brook, New York
David S. Bimbi, PhD
LaGuardia Community College
Long Island City, New York
Penny B. Block, PhD
Block Center for Integrative Cancer Care
Evanston, Illinois
Sarah E. Bollinger, MSW, LCSW
Washington University
St. Louis, Missouri
Rebecca Brashler, MSW, LCSW
Rehabilitation Institute of Chicago
Chicago, Illinois
Teri Browne, PhD
University of South Carolina
Columbia, South Carolina
Yvette Colón, PhD, ACSW, BCD
American Pain Foundation
Baltimore, Maryland
Julie S. Darnell, PhD
University of Illinois at Chicago
Chicago, Illinois
Sadhna Diwan, PhD
San Jose State University
San Jose, California
Malitta Engstrom, PhD
University of Chicago
Chicago, Illinois
Iris Cohen Fineberg, PhD
Lancaster University
Lancaster, United Kingdom
Stacey Freedenthal, PhD
University of Denver
Denver, Colorado
Les Gallo-Silver, MSW, ACSW, CSW-R
LaGuardia Community College
Long Island City, New York
Daniel S. Gardner, PhD
New York University
New York, New York
Sarah Gehlert, PhD
Washington University
St. Louis, Missouri
Susan Hedlund, MSW, LCSW
Hospice of Washington County
Portland, Oregon
fmatter.indd xifmatter.indd xi 9/21/11 7:56 PM9/21/11 7:56 PM
xii List of Contributors
Suzanne Heurtin-Roberts, PhD, MSW
United States Department of Health and
Human Services
Bethesda, Maryland
J. Aaron Hipp, PhD
Washington University
St. Louis, Missouri
Edward F. Lawlor, PhD
Washington University
St. Louis, Missouri
Sang E. Lee, PhD
San Jose State University
San Jose, California
Colleen A. Mahoney, PhD
University of Wisconsin
Madison, Wisconsin
Jeanne C. Marsh, PhD
University of Chicago
Chicago, Illinois
Christopher Masi, MD, PhD
University of Chicago
Chicago, Illinois
Shirley Otis-Green, MSW, ACSW, LCSW
City of Hope National Medical Center
Duarte, California
Kate Reed, MPH, ScM
National Coalition for Health Professional
Education in Genetics
Lutherville, Maryland
John S. Rolland, MD
Chicago Center for Family Health
Chicago, Illinois
Marjorie R. Sable, DrPH
University of Missouri
Columbia, Missouri
Deborah R. Schild, PhD
Public Health Social Worker
Ann Arbor, Michigan
Jared Sparks, PhD
Ozark Guidance
Springdale, Arkansas
Nancy Boyd Webb, DSW, LICSW, RPT-S
Fordham University (retired)
New York, New York
Allison Werner-Lin, PhD
New York University
New York, New York
Terry A. Wolfer, PhD
University of South Carolina
Columbia, South Carolina
fmatter.indd xiifmatter.indd xii 9/21/11 7:56 PM9/21/11 7:56 PM
xiii
Introduction
In a faculty meeting a few years ago, a col-
league from another profession referred to the
“lower-level skills” of social workers in health
care. She distinguished these skills from the
“higher-level skills” of social workers in men-
tal health settings. I addressed her comment
by citing the broad array of information that
social workers in health care must possess and
be able to access quickly in order to assess cli-
ent situations and devise optimal plans in the
limited time available to them in health-care
settings. I characterized the process as highly
challenging, requiring skills at least as well
developed as those of social workers in other
arenas. This exchange between my colleague
and me made me realize two things. First of
all, health social work is not well understood
by those working in other subfi elds of social
work and other disciplines. Second, it would
behoove health social work scholars to better
defi ne and represent the subfi eld.
As health care becomes increasingly more
complex, social workers have much to know.
We have yet to fully understand what the Pa-
tient Protection and Affordable Care Act that
was enacted in March 2010 means for the
health of the nation or what it means for so-
cial work practice and research. We do know
that current federal approaches to addressing
complicated health conditions like HIV/AIDS
and cancer argue strongly for simultaneous
attention to factors operating at the social,
psychological, and biological levels (see, e.g.,
Warnecke et al., 2008). As members of health-
care teams that take these approaches, social
workers must possess suffi cient knowledge at
the social, psychological, and biological lev-
els to converse productively with other team
members and to work in concert with them
constructively. In addition, to be effective, so-
cial workers must be aware of how these fac-
tors operate with individuals, families, groups,
communities, and societies. This awareness is
best accomplished by engaging community
stakeholders at many levels in research.
The Handbook of Health Social Work was
developed to prepare students to work in the
current health-care environment in which
providers from a number of disciplines work
more closely together than was ever the case
in the past. Health care in the United States
has moved from being multidisciplinary to
being interdisciplinary, with the ultimate
goal of being transdisciplinary. In multidisci-
plinary environments, professionals from dif-
ferent disciplines work on the same projects
but speak their own languages, view health
care through their own disciplinary lens, and
often share knowledge with one another after
the fact. Interdisciplinary teams interact more
closely, but each discipline continues to op-
erate within its own boundaries. Because an
interdisciplinary approach almost never pro-
vides a broad enough view of health-care
conditions to capture their inherent complexi-
ties, transdisciplinary teamwork has become
the exemplar. Here health-care professionals
work so closely together that they must de-
velop a shared language and pool the best of
their separate disciplinary theories. Absent this
fmatter.indd xiiifmatter.indd xiii 9/21/11 7:56 PM9/21/11 7:56 PM
xiv Introduction
new, more interdependent approach, the team
is reminiscent of the old cartoon of a roomful
of blindfolded people touching different parts
of an elephant, with each describing the beast
based only on the part that she is touching.
One might base his description on the trunk,
another on the ears, and a third on the tail. To
address complex health conditions like HIV/
AIDS effectively, we must recognize the el-
ephant in the room.
In 2009, my coeditor, Teri Browne, and I
were asked by John Wiley & Sons if we would
be interested in revising the Handbook. A good
deal has changed on both the national and in-
ternational fronts in the 4 years since the fi rst
edition was published. The mapping of the
human genome in 2004 continues to change
how we view and approach the treatment of
disease. Our ability to treat some disorders has
increased markedly. Over the four years be-
tween the fi rst and second editions, increasing
numbers of people lost their health-care cov-
erage. Although health-care reform holds the
potential to ensure that citizens have cover-
age, this is not true for those who are undocu-
mented immigrants, and exactly how reform
will impact the nation’s steadily increasing
health disparities remains a question.
These changes will continue, and require a
great deal of fl exibility on the part of health so-
cial workers. As was the case with the fi rst edi-
tion of the Handbook of Health Social Work,
the second edition considers social workers in
health care to be active problem solvers who
must draw from a variety of germane bodies
of information to address the issues and prob-
lems faced by individuals, families, groups,
communities, and societies. We believe that
this approach allows fl exibility and thus posi-
tions health social workers to deal optimally
with a changing health-care environment. The
authors and layout of the second edition re-
fl ect this approach. Learning exercises at the
end of each chapter are designed to stimulate
discussion and help readers process the infor-
mation provided and consider it analytically.
The book’s chapters are sandwiched between a
foreword by Suzanne Heurtin-Roberts and an
afterword by Candyce Berger, both of whom
have broken ground as social work leaders
in health-care practice and research and done
much to raise the profi le of the profession.
The book is divided into three sections. Part
I, Foundations of Social Work in Health Care,
provides information that we consider basic
and central to the operations of social workers
in health care. In Chapter 1, “Conceptual Un-
derpinnings of Social Work in Health Care,”
Sarah Gehlert again discusses the principles
that underlie the development of social work
in health care and follows its course through
time to discover any changes in principles and
activities that may have occurred. Chapter
2, “Social Work Roles and Health-Care Set-
tings,” by Teri Browne, carefully outlines the
wide array of roles performed by social work-
ers in health-care settings today. After provid-
ing a framework for ethical decision making,
Chapter 3, “Ethics and Social Work in Health
Care,” by Jared Sparks, again considers some
key issues confronting social workers in health
care in a variety of arenas, from practice with
individuals to policy development. All three
chapters take into account the unique chal-
lenges facing health care in the United States.
Public health social work recently was
named as one of the top 50 professions by U.S.
News & World Report, and training programs
that combine the two continue to grow. Be-
cause of this, and because social work has for
a long time played an integral role in the pub-
lic health of the United States and other parts
of the world, Chapter 4, titled “Public Health
and Social Work,” is an essential component
of the Handbook, to orient readers to the pub-
lic health perspective. J. Aaron Hipp, a com-
munity psychologist who works in a school
of public health, joined health social workers
Marjorie R. Sable and Deborah R. Schild in
revising the chapter. The chapter introduces
readers to the concepts of primary, secondary,
and tertiary health care and considers health
from a wider lens than is often used, including
global patterns of health and disease. Chapter
5, “Health Policy and Social Work,” written
by Julie S. Darnell and Edward F. Lawlor, is
almost totally revised from the fi rst edition.
It presents basic information on the interplay
fmatter.indd xivfmatter.indd xiv 9/21/11 7:56 PM9/21/11 7:56 PM
Introduction xv
among clinical, administrative, and policy is-
sues in health care. Although it is beyond the
scope of this book to cover all possible health
policies and considerations, an overview of
the most pertinent policies and issues is pro-
vided. The authors address the likely sequelae
of health care reform. Chapter 6, “Theories of
Health Behavior,” by Sarah Gehlert and Sarah E.
Bollinger, outlines fi ve key theories and meth-
ods that can help guide social work practice and
research in health care. Empirical evidence for
their use in certain situations is provided.
Part II is titled Health Social Work Prac-
tice: A Spectrum of Critical Considerations.
Although cases and questions confronted by
social workers in health care vary widely,
certain critical issues should always be con-
sidered. The eight chapters in this part repre-
sent critical issues that should be considered
in approaching cases or pursuing the answers
to health-care questions, even though in time
they may not prove to be germane to those
cases or questions. Failing to consider issues
such as religion, sexuality, or substance use
may lead to incomplete understandings of
cases or consideration of health-care ques-
tions. It was only after considering health
beliefs, for instance, that Matsunaga and col-
leagues (1996) were able to understand why
native Hawaiian women did not participate in
breast cancer screening despite their high rates
of breast cancer.
Because individuals and families do not
operate independently but rather as parts of
communities, an overview of the relationships
between health and community factors is in-
cluded in Part II. In Chapter 7, “Community
and Health,” Christopher Masi again reviews
signifi cant evidence-based data and provides
information about how knowledge about com-
munity factors can be accessed and included
in social work activities in health care. The
complex interplay of physical and mental
health is addressed in Chapter 8, “Physical and
Mental Health: Interactions, Assessment, and
Interventions.” The chapter, again prepared
by Malitta Engstrom, carefully outlines how
to assess for mental health concerns and re-
views a variety of interventions. In Chapter 9,
“Social Work Practice and Disability Issues,”
Rebecca Brashler again carefully frames so-
cial work practice with individuals and groups
with disabilities and provides suggestions for
practice. Because communication is central
to the effective provision of heath care as it
changes through time, the revised chapter
titled “Communication in Health Care” is in-
cluded as Chapter 10 in Part II of this Hand-
book. The chapter provides a basic framework
for understanding the dynamics of health-care
communication; reviews interventions for im-
proving communication; considers the effect of
culture, gender, race, and other salient factors
on patient and provider communication; and
provides guidelines for the use of interpreters.
It also addresses the dynamics of health-care
teams and social workers’ positions on teams.
In Chapter 11, “Religion, Spirituality,
Health, and Social Work,” author Terry A.
Wolfer, who is new to the Handbook, reviews
the ways in which religion and spirituality af-
fect health and individual and group responses
to health care. Ways of incorporating religious
and spiritual considerations into practice and
policy are reviewed. Complementary and al-
ternative treatments are reviewed in Chapter
12, “Developing a Shared Understanding:
When Medical Patients Use Complementary
and Alternative Approaches.” Author Penny B.
Block provides information on the extent of al-
ternative and complementary treatments in the
United States and reasons for their use. She
reviews a number of treatments and their his-
tories and addresses the importance for social
workers of being familiar with complementary
and alternative techniques. Chapter 13, “Fami-
lies, Health, and Illness,” again written by John
S. Rolland, presents a framework for under-
standing the interplay between family struc-
ture and dynamics and health and addresses
its implications for social work practice and
policy in health care. Chapter 14, “Human
Sexual Health,” addresses the relationship be-
tween sexuality and health and discusses ways
to incorporate sexual and other intimate con-
siderations into practice and policy. Authors
Les Gallo-Silver and David S. Bimbi make the
point that sexual and other intimate issues are
fmatter.indd xvfmatter.indd xv 9/21/11 7:56 PM9/21/11 7:56 PM
xvi Introduction
more likely to be faced by social workers in
health care than in other areas of practice.
Part III, Health Social Work: Selected Areas
of Practice, contains nine chapters by social
workers with extensive practice and academic
experience. Selecting the areas to include was
diffi cult, and the list is not meant to be exhaus-
tive. Our aim was to present a range of examples
of good social work practice in suffi cient detail
to provide a reasonable overview of social work
practice in health care. The second edition of
the Handbook includes a new chapter devoted
to health social work practice with young pa-
tients: Chapter 15, “Social Work With Children
and Adolescents With Medical Conditions,” by
seasoned authors Nancy Boyd Webb and Rose
A. Bartone. Chapter 16, “Social Work With
Older Adults in Health-Care Settings,” outlines
the issues central to practice with older adults
and the challenges faced by social workers.
Sang E. Lee joins Sadhna Diwan and Shantha
Balaswamy as an author of the revised chap-
ter. Because substance use is widespread today
and can negatively affect health and response
to treatment, it is important that social workers
consider the topic in practice and policy. The
revised Chapter 17, titled “Substance Use Prob-
lems in Health Social Work Practice,” again
written by Malitta Engstrom, Colleen A.
Mahoney, and Jeanne C. Marsh, carefully out-
lines the importance of considering substance
use and abuse and provides guidelines for in-
corporation into practice and policy.
After providing background on end-stage
renal disease and its psychosocial sequelae, in
Chapter 18, “Nephrology Social Work,” Teri
Browne reviews evidence-based social work
interventions, policies and programs, and
resources and organizations available to ne-
phrology social workers. In Chapter 19, “On-
cology Social Work,” Daniel S. Gardner joins
Allison Werner-Lin as an author in the revised
chapter. The chapter reviews psychosocial is-
sues faced by patients with cancer and their
families. Practice considerations are outlined
and suggestions for interventions provided.
Issues of chronic illness are addressed by
Wendy Auslander and Stacey Freedenthal in
the revised and retitled Chapter 20, “Adher-
ence and Mental Health Issues in Chronic
Disease: Diabetes, Heart Disease, and HIV/
AIDS.” Chronic conditions present a number
of unique challenges to social workers, such
as how to improve adherence to treatment
recommendations. The authors outline these
challenges and make suggestions for practice.
Chapter 21, “Social Work and Genetics,” has
been revised in light of myriad advances in our
understanding of genetics and health that have
occurred in the last several years. Kate Reed,
from the National Coalition for Health Pro-
fessional Education in Genetics, joins Allison
Werner-Lin as an author of the chapter, which
considers the role of social workers in helping
patients and families learn and make decisions
about genetic testing and cope with its results.
The management of pain in acute and
chronic illness increasingly has become the
domain of social workers in health care.
Chapter 22, “Pain Management and Palliative
Care,” orients readers to the effect of pain on
behavior and functioning and reviews roles
for social workers in pain management and
palliative care teams. Terry Altilio, Shirley
Otis-Green, Susan Hedlund, and Iris Cohen
Fineberg are authors of the chapter. Finally,
Chapter 23, “End-of-Life Care,” again by
Yvette Colón, discusses how social workers
can assist patients and families in dealing with
these end-of-life issues effectively.
Our aim in preparing the Handbook of
Health Social Work has been to provide a
source of information that would help social
workers to be active problem solvers rather
than followers of routines and existing proto-
cols. The book enables social work students to
learn the foundations of practice and policy in
health care (Part I), critical considerations in
implementing practice and policy (Part II), and
the ways in which social work is practiced in a
number of arenas and with a number of health
conditions (Part III).
We hope that the book will continue to be
useful in professional education, allowing those
already in practice to learn about issues such as
pain management and alternative and comple-
mentary medicine that they might not have been
exposed to while in school or had the opportunity
fmatter.indd xvifmatter.indd xvi 9/21/11 7:56 PM9/21/11 7:56 PM
Introduction xvii
to learn after graduation. It also is a valuable
source of information on evidence-based prac-
tice in a variety of areas of health care.
Social workers in health care today face a
number of challenges, some new and some
that have always been with the profession. We
hope that readers will use the 23 chapters of
the Handbook of Health Social Work as a set of
tools to help them better address the health-care
needs of the individuals, families, groups, com-
munities, and societies with whom they work.
Sarah Gehlert
St. Louis, Missouri
Teri Browne
Columbia, South Carolina
REFERENCES
Matsunaga, D. S., Enos, R., Gotay, C. C., Banner, R.
O., DeCambra, H., Hammond, O. W., . . . Tsark, J.
(1996). Participatory research in a native Hawaiian
community: The Wai’anae Cancer Research Project.
Cancer, 78, 1582–1586.
Warnecke, R. B., Oh, A., Breen, N., Gehlert, S., Lurie,
N., Rebbeck, T., . . . Patmios, G. (2008). Approaching
health disparities from a population perspective:
The NIH Centers for Population Health and Health
Disparities. American Journal of Public Health, 98,
1608–1615.
fmatter.indd xviifmatter.indd xvii 9/21/11 7:56 PM9/21/11 7:56 PM
fmatter.indd xviiifmatter.indd xviii 9/21/11 7:56 PM9/21/11 7:56 PM
PART I
Foundations of Social Work
in Health Care
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JWBT514_ch01.indd 2JWBT514_ch01.indd 2 9/21/11 7:41 PM9/21/11 7:41 PM
3
1
Conceptual Underpinnings
of Social Work in Health Care
SARAH GEHLERT
The writing of the fi rst edition of this text co-
incided with the centennial of the hiring of
the fi rst medical social worker in the United
States, Garnet Pelton, who began working at
Massachusetts General Hospital in 1905. The
writing of the second edition fi ve years later
comes at another key point for health social
work, namely the passage of the Patient Protec-
tion and Affordable Care Act in March 2010,
which will radically increase health insurance
coverage for U.S. citizens over the next de-
cade. It seems an appropriate time to consider
the history of social work in health care and
to assess the degree to which the vision of its
founders has been met in its fi rst 100 years. Ida
Cannon (1952), the second social worker hired
at Massachusetts General Hospital, whose ten-
ure lasted for 40 years, wrote: “[B]asically, so-
cial work, wherever and whenever practiced
at its best, is a constantly changing activity,
gradually building up guiding principles from
accumulated knowledge yet changing in tech-
niques. Attitudes change, too, in response to
shifting social philosophies” (p. 9). How, if at
all, have the guiding principles of social work
in health care changed over the century?
This chapter focuses on the development of
the profession from its roots in the 19th cen-
tury to the present. This longitudinal examina-
tion of the profession’s principles and activities
should allow for a more complete and accurate
view of the progression of principles through
time than could have been achieved by sam-
pling at points in time determined by historical
events, such as the enactment of major health-
care policies.
Chapter Objectives
• Discuss the historical underpinnings of the
founding of the fi rst hospital social work
department in the United States.
• Describe the forces and personalities
responsible for the establishment of the
fi rst hospital social work department in the
United States.
• Determine how the guiding principles of
social work in health care have changed
from the time of the founding of the fi rst
hospital social work department to the
present time.
• Determine how the techniques and
approaches of social work in health care
have changed from the time of the founding
of the fi rst hospital social work department
to the present time.
Frequent references to other chapters in this
book capture the current conceptual frame-
work of social work in health care.
HISTORICAL FOUNDATION
OF SOCIAL WORK IN
HEALTH CARE
Social work in health care owes it origins to
changes in (a) the demographics of the U.S.
population during the 19th and early 20th cen-
turies; (b) attitudes about how the sick should
be treated, including where treatment should
occur; and (c) attitudes toward the role of so-
cial and psychological factors in health. These
three closely related phenomena set the stage
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4 Foundations of Social Work in Health Care
for the emergence of the fi eld of social work
in health care.
A number of events that began in the mid-
1800s led to massive numbers of people im-
migrating to the United States. In all, 35 to
40 million Europeans immigrated between
1820 and 1924. The Gold Rush, which began
in California in 1849, and the Homestead Act
of 1862 added to the attractiveness of immi-
gration (Rosenberg, 1967).
About 5.5 million Germans immigrated to
the United States between 1816 and 1914 for
economic and political reasons. Over 800,000
arrived in the 7-year period between 1866 and
1873, during the rule of Otto von Bismarck.
The Potato Famine in Ireland in the 1840s re-
sulted in the immigration of 2 million people
during that decade and almost a million more
in the next decade. Between 1820 and 1990,
over 5 million Italians immigrated to the
United States, mostly for economic reasons,
with peak years between 1901 and 1920. A
major infl ux of Polish immigrants occurred be-
tween 1870 and 1913. Those arriving prior to
1890 came largely for economic reasons; those
after came largely for economic and political
reasons. Polish immigration peaked again in
1921, a year in which over half a million Pol-
ish immigrants arrived in the United States.
Two million Jews left Russia and Eastern Eu-
ropean countries between 1880 and 1913 and
traveled to the United States.
The United States struggled to adapt to the
challenge of immigration. The Ellis Island Im-
migration Station opened in 1892 to process
the large number of immigrants entering the
country. By 1907, over 1 million people per
year were passing through Ellis Island. The
massive waves of immigration presented new
health-care challenges, especially in the north-
eastern cities, where most of the new arrivals
settled. Rosenberg (1967) wrote that 723,587
persons resided in New York City in 1865,
90% on the southern half of Manhattan Island
alone. Over two thirds of the city’s popula-
tion at the time lived in tenements. Accidents
were common, sanitation was primitive, and
food supplies were in poor condition by the
time they reached the city. One in 5 infants in
New York City died prior to their fi rst birth-
day, compared to 1 in 6 in London (Rosenberg,
1967). Adding to the challenge, the vast ma-
jority of immigrants had very limited or no
English language skills and lived in poverty.
Immigrants brought with them a wide range of
health-care beliefs and practices that differed
from those predominant in the United States
at the time.
In the late 1600s and early 1700s, people
who were sick were cared for at home. A
few hastily erected structures were built to
house persons with contagious diseases dur-
ing epidemics (O’Conner, 1976, p. 62). These
structures operated in larger cities and were
fi rst seen before the Revolutionary War. As
the U.S. population grew, communities de-
veloped almshouses to care for people who
were physically or mentally ill, aged and ill,
orphaned, or vagrant. Unlike the structures
erected during epidemics, almshouses were
built to operate continuously. The fi rst alms-
house, which was founded in 1713 in Phila-
delphia by William Penn, was open only to
Quakers. A second almshouse was opened to
the public in Philadelphia in 1728 with mon-
ies obtained from the Provincial Assembly by
the Philadelphia Overseers of the Poor. Other
large cities followed, with New York open-
ing the Poor House of the City of New York
(later named Bellevue Hospital) in 1736 and
New Orleans opening Saint John’s Hospital in
1737 (Commission on Hospital Care, 1947).
Although called a hospital, Saint John’s was
classifi ed as an almshouse because it primar-
ily served people living in poverty who had
nowhere else to go.
By the mid-1700s, people who became ill
in almshouses were separated from other in-
habitants. At fi rst they were housed on sepa-
rate fl oors, in separate departments, or in other
buildings of the almshouse. When these units
increased in size, they branched off to form
public hospitals independent of almshouses.
Hospitals eventually became popular among
persons of means, who for the fi rst time pre-
ferred to be treated for illness by specialists
outside the home and were willing to pay for
the service.
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Conceptual Underpinnings of Social Work in Health Care 5
A number of voluntary hospitals were es-
tablished between 1751 and 1840 with various
combinations of public and private funds and
patients’ fees (O’Conner, 1976). The fi rst vol-
untary hospital was founded in Philadelphia in
1751 with subscriptions gathered by Benjamin
Franklin and Dr. Thomas Bond and funds from
the Provincial General Assembly of Philadel-
phia. The New York Hospital began admitting
patients in 1791 and the Massachusetts Gen-
eral Hospital in 1821. In 1817, the Quakers
opened the fi rst mental hospital, which began
admitting anyone needing care for mental ill-
ness in 1834.
A third type of medical establishment, the
dispensary, began to appear in the late 1700s.
Dispensaries were independent of hospitals
and fi nanced by bequests and voluntary sub-
scriptions. Their original purpose was to dis-
pense medications to ambulatory patients. In
time, however, dispensaries hired physicians
to visit patients in their homes. The fi rst four
dispensaries were established in Philadelphia
in 1786 (exclusively for Quakers), New York
in 1795, Boston in 1796, and Baltimore in
1801.
19th-Century Efforts Toward Public
Health Reform
The last half of the 19th century saw efforts
to reform hospitals and dispensaries, many
of which were led by women physicians.
Dr. Elizabeth Blackwell, unable to fi nd em-
ployment in hospitals because of her gender,
established a dispensary for women and chil-
dren in New York’s East Side in 1853. The East
Side had seen a massive infl ux of immigrants
from Europe and was becoming increasingly
crowded. Blackwell’s dispensary provided
home visits and by 1857 had secured a few
hospital beds for its patients. The dispensary,
which later became the New York Infi rmary
for Women and Children, provided home visits
to 334 African American and White American
patients in 1865 (Cannon, 1952). The follow-
ing year, Dr. Rebecca Cole, an African Ameri-
can physician, was hired as a “sanitary visitor.”
When visiting families, Cole discussed topics
such as hygiene and how to select and cook
food and addressed issues of education and em-
ployment. In 1890, Mrs. Robert Hoe provided
funds to the New York Infi rmary for Women and
Children to employ a full-time home visitor to
work under the direction of Dr. Annie Daniels.
Daniels kept records of family size, income, and
living expenses in the manner of social workers
of the time, such as Jane Addams, who founded
Hull House in Chicago in 1889.
The fi rst medical resident to work with
Dr. Blackwell in New York, Marie Zakrzewska,
moved to Boston and in 1859 became the fi rst
professor of obstetrics and gynecology at
the New England Female Medical College.
Dr. Zakrzewska established a dispensary and
10-bed ward in Boston in 1862, the New Eng-
land Hospital for Women and Children. It was
the fi rst hospital in Boston and the second in
the United States (after the New York Dispen-
sary for Women and Children) to be run by
women physicians and surgeons. As had the
New York Dispensary for Women and Chil-
dren, the New England Hospital for Women
and Children featured home visiting, with
increased attention to social conditions. For
many years, home visits were part of the edu-
cation of nurses and physicians in training.
In 1890, Dr. Henry Dwight Chapin, a pe-
diatrician who lectured at the New York Post-
graduate Hospital and the Women’s Medical
College of the New York Infi rmary for Women
and Children, established a program in which
volunteers visited the homes of ill children to
report on conditions and to ensure that medi-
cal instructions had been understood and im-
plemented. In 1894, he appointed a woman
physician to do the job but soon replaced her
with a nurse. Chapin’s efforts led to a foster-
care home for ill and convalescing children
whose parents were unable to care for them
adequately (Romanofsky, 1976). He founded
the Speedwell Society in 1902 to encourage
foster care. The Speedwell Society would have
ties to the social work departments later estab-
lished in New York hospitals.
A close partnership between the Johns
Hopkins Hospital and Baltimore’s Charity
Organization Society at the turn of the 20th
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6 Foundations of Social Work in Health Care
century served as a breeding ground for ideas
about how to merge social work and medi-
cine. Four people involved in these discus-
sions were instrumental to the establishment
of formal social work services in hospitals.
Mary Richmond, Mary Wilcox Glenn, Jeffrey
Brackett, and Dr. John Glenn, who became the
director of the Russell Sage Foundation, were
actively involved in the application of social
work to medicine.
Hospital Almoners in London
The fi rst social worker, called a hospital
almoner, was hired by the Royal Free Hospital
in London in 1895. This occurred when the
Royal Free Hospital came together with the
London Charity Organization Society through
Charles Loch. Loch was a very religious man
who had served in the Secretarial Depart-
ment of the Royal College of Surgeons for
three years. He was appointed secretary of
the London Charity Organization in 1875 and
brought with him a strong interest in the so-
cial aspects of health. While a member of the
Medical Committee of the Charity Organiza-
tion Society, Loch addressed a growing con-
cern that patients might be misrepresenting
their situations to receive free care. In 1874,
the Royal Free Hospital asked the Charity
Organization Society to screen patients to de-
termine how many were indeed poor. They
found only 36% to be truly eligible for ser-
vices. Loch thought that individuals request-
ing care should be screened by “a competent
person of education and refi nement who could
consider the position and circumstances of the
patients” (Cannon, 1952, p. 13). Loch fought
for many years to have an almoner appointed.
He addressed the Provident Medical Associa-
tion in 1885 and was called to testify before a
committee of the House of Lords in 1891. In
1895, Mary Stewart was hired to be the fi rst
social almoner at the Royal Free Hospital.
Prior to assuming the position, Stewart had
worked for many years for the London Char-
ity Organization Society. She was stationed
at its entrance because her principal function
at the hospital was to review applications for
admission to the hospital’s dispensary and ac-
cept those that were deemed suitable for care.
Her secondary duties were to refer patients for
services and determine who should be served
at dispensaries (Cannon, 1952).
Stewart was given 3 months of initial fund-
ing by the London Charity Organization So-
ciety. Although by all accounts her work was
considered productive, the Charity Organiza-
tion Society refused to renew her contract until
the Royal Free Hospital agreed to pay at least
part of her salary. Ultimately, two of the hospi-
tal’s physicians agreed to pay half of Stewart’s
salary for a year, and the Charity Organization
Society covered the other half. From that point
on, social almoners were part of hospitals in
England. By 1905, seven other hospitals had
hired almoners.
In 1906, the Hospital Almoners’ Council
(later the Institute of Hospital Almoners) took
over the training of almoners. The Institute for
Hospital Almoners was responsible for the ex-
pansion of the almoner’s repertoire to include
functions such as prevention of illness. The
fi rst years of its operation saw the develop-
ment of classes for prospective fathers, a hos-
tel for young women with socially transmitted
diseases, and other programs (Cannon, 1952).
First Social Service Department in the
United States
Garnet Pelton began work as a social worker
in the dispensary of the Massachusetts Gen-
eral Hospital 10 years after Mary Stewart was
fi rst hired to work at the Royal Free Hospital
in London. Ida Cannon, who replaced Pelton
after she became ill six months into her ten-
ure and who held the position for 40 years,
described “a special bond of fellowship be-
tween the English almoners and the medical
social workers of our country” (Cannon, 1952,
p. 20). She also described her own 1907 visit
with Anne Cummins, an almoner at London’s
St. Thomas Hospital.
Garnet Pelton, Ida Cannon, and Dr. Richard
Cabot were central to the establishment of the
social work department at Massachusetts Gen-
eral Hospital. Relatively little has been written
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Conceptual Underpinnings of Social Work in Health Care 7
about Pelton or her short tenure at the hospi-
tal. Cannon (1952) briefl y described Pelton’s
nurse’s training at Massachusetts General
Hospital and her contribution to the Denison
House Settlement. While at the settlement, she
brought Syrian immigrants from her South
End Boston neighborhood to the hospital for
treatment. Pelton was hired by Cabot to work
at Massachusetts General Hospital and began
on October 2, 1905. She worked from a desk
located in a corner of the corridor of the outpa-
tient clinic at Massachusetts General Hospital
and resigned after six months when she devel-
oped tuberculosis. The poor received treatment
for tuberculosis in the outpatient department
because they could not afford sanitarium treat-
ment. There is some question about whether
Pelton contracted tuberculosis through her
work in the outpatient department. At any rate,
Cabot arranged for her treatment at Saranac
Lake, New York, and later at Asheville, North
Carolina.
Pelton was succeeded by Ida Cannon, who
published two books and several reports on
medical social work and about whom a fair
amount of biographical information is avail-
able. Cannon was born in Milwaukee into a
family of means. She was trained as a nurse at
the City and County Hospital of St. Paul and
worked as a nurse for 2 years. She then stud-
ied sociology at the University of Minnesota,
where she heard a lecture by Jane Addams and
became interested in social work. She worked
as a visiting nurse for the St. Paul Associated
Charities for three years prior to enrolling in
Simmons College of Social Work. Cannon
met Richard Cabot through her older brother,
a Harvard-educated physiologist, as Cabot was
organizing social services at Massachusetts
Hospital. She was hired to replace Pelton in
1906, began working full time after graduat-
ing from Simmons College in 1907, and was
named the fi rst chief of the Social Service De-
partment in 1914. She retired from Massachu-
setts General Hospital in 1945.
Dr. Richard Cabot was an especially pro-
lifi c writer and has himself been the subject
of scholarship over the years (see, e.g., Dodds,
1993; O’Brien, 1985). Cabot was a Harvard-
educated physician who had a great deal to
do with the establishment of social work and
other helping professions in U.S. hospitals.
He was active professionally from the 1890s
through most of the 1930s, a time when pro-
fessions were being defi ned (see, e.g., Flexner,
1910) and medicine was the standard for what
it meant to be professional.
Cabot’s paternal grandfather, Samuel (1784
to 1863), made his fortune in trading after fi rst
going to sea at 19 years of age. Samuel Cabot
married Eliza Perkins, daughter of Boston’s
most successful trader, and eventually took
over his father-in-law’s fi rm. He is described
as a practical man who believed primarily in
action and hard work and favored commerce
over culture (Evison, 1995).
Cabot’s father, James (1821 to 1903), stud-
ied philosophy in Europe, trained as a lawyer,
taught philosophy at Harvard, and was a bi-
ographer and friend of Ralph Waldo Emerson.
He considered himself a transcendentalist,
holding that, “the transcendental included
whatever lay beyond the stock notions and
traditional beliefs to which adherence was ex-
pected because they were accepted by sensible
persons” (Cabot, 1887, p. 249). The transcen-
dentalists questioned much of the commer-
cialism of their parents’ generation and were
particularly critical of slavery. The Civil War,
which began when James Elliott Cabot was
40 years old, was waged in part due to the
sentiments of this generation. Cabot’s mother,
Elizabeth, bore most of the responsibility of
raising the couple’s seven sons and shared
with her husband the transcendentalist’s ques-
tioning of stock notions and traditional beliefs.
Elizabeth Cabot said of women: “[I]t seems to
me that very few of us have enough mental
occupation. We ought to have some intellec-
tual life apart from the problems of educa-
tion and housekeeping or even the interests
of society” (Cabot, 1869, p. 45). O’Brien de-
scribes Elizabeth Cabot as “warmly maternal
and deeply religious” and “tirelessly philan-
thropic” (O’Brien, 1985, p. 536).
The Civil War demoralized the nation and
spawned a new conservatism and materialism.
The publication of The Origin of the Species by
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8 Foundations of Social Work in Health Care
Charles Darwin in 1859 (1936), which brought
an appreciation of the scientifi c method, and
growing concern about the number of immi-
grants arriving in the country added to a shift
to realism from the idealism of James Elliott
Cabot’s generation. In the wave of social Dar-
winism that ensued, charity was seen as naive
and potentially harmful to its recipients. It was
into this posttranscendentalist atmosphere that
Richard Cabot was born in 1868.
The tension between his generation and that
of his parents shaped Richard Cabot’s vision. He
took a radical centrist position based in philo-
sophical pragmatism, taking two opposing views,
and helped to locate a middle ground between
them. Rather than considering either side as
right or wrong, he held that a greater truth could
emerge through creating a dialogue between the
two sides. Throughout his career, Cabot saw
himself as an interpreter or translator, able to fi nd
the middle ground between extremes.
Cabot fi rst studied philosophy at Harvard
and then switched to medicine. He rejected
philosophers who observed rather than acted
and for that reason was drawn to the philoso-
phy of John Dewey. Evison (1995), a Cabot
biographer, writes: “[A]ction drew him; Jane
Addams and Teddy Roosevelt appealed to him
because they did something” (p. 30). Cabot
held that knowledge was gained through prob-
lem solving, even when hypotheses were not
supported. Like Addams before him, he be-
lieved that people can learn from failure.
Cabot’s senior thesis used epidemiologic
methods to examine the effi cacy of Christian
Science healing (Dodds, 1993). By the time
he had completed medical school in 1892, the
germ theory of the 1870s and 1880s had taken
hold, and the roles of technology and labora-
tory analysis had gained in salience. Cabot
initially followed the trend by completing
postgraduate training in laboratory research
and a Dalton Research Fellowship in hematol-
ogy. He turned down an appointment as the
fi rst bacteriologist at Massachusetts General
Hospital and in 1898, four years after com-
pleting his fellowship, accepted a much less
prestigious appointment in the outpatient de-
partment.
Patients were treated in the outpatient de-
partment at Massachusetts General Hospital
rather than in the wards when their cases were
considered uninteresting or hopeless (Evison,
1995). Because no treatment existed for condi-
tions such as tuberculosis, typhus, and diabe-
tes, patients with these conditions usually were
treated in the outpatient department, especially
if they were poor. Medicines prescribed were
largely analgesic. (Antibiotics were not devel-
oped until the 1940s.) Many patients were im-
migrants who presented with language barriers
and infectious diseases such as typhus. Add-
ing to the bleakness of the situation was the
depression of 1893, the worst that had been
experienced to that date.
Cabot described the speed with which
physicians saw patients when he fi rst arrived
in the outpatient department: Referred to by
some physicians as “running off the clinic”
(Evison, 1995, p. 183), a physician pulled a
bell to signal a patient to enter the room. The
physician would shout his questions while the
patient was still moving and have a prescrip-
tion written by the time the patient arrived at
his desk. He would then pull the bell for the
next patient.
Cabot began to see that social and mental
problems often underlaid physical problems
and that purely physical affl ictions were rare
(Cabot, 1915). He held that it was not possible
to restore patients to health without consid-
ering what he called the nonsomatic factors,
such as living conditions. He described one
case in this way:
One morning as I was working in the out-
patient department, I had a series of knotty
human problems come before me . . . that
morning I happened to wake to the fact that
the series of people that came to me had pretty
much wasted their time. I had fi rst of all to
deal with a case of diabetes. That is a disease
in which medicine can accomplish practically
nothing, but in which diet can accomplish a
great deal. We had worked out very minutely
a diet that should be given such patients. We
had it printed upon slips which were made up
in pads so that we could tear off a slip from
one of these pads and give the patient the best
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Conceptual Underpinnings of Social Work in Health Care 9
that was known about diabetes in short com-
pass. I remember tearing off a slip from
this pad and handing it to the patient, feel-
ing satisfaction that we had all these ready
so that the patient need not remember any-
thing. . . . The woman to whom it had been
given did not seem satisfi ed. I asked her
what was the matter. . . . She looked it over
and among the things that she could eat she
saw asparagus, Brussels sprouts, and one or
two other things, and she called my attention
to the fact that there was no possibility of her
buying these things. We had, in other words,
asked her to do things that she could by no
possibility do. (Cabot, 1911, pp. 308–309)
Cabot’s exposure to social work came fi rst
from his relationship with Jane Addams. In
1887, he took a course at Harvard entitled “Ethi-
cal Theories and Social Reform” from Francis
Greenwood Peabody. Many who took the course
went on to work for the Boston Children’s Aid
Society, as did Cabot when he became a director
there in 1896. It was there that he was exposed to
the case conference approach.
Cabot viewed the relationship between
medicine and social work from his radical cen-
trist perspective. He thought that each profes-
sion possessed the element that the other most
needed. For medicine, this was empiricism,
and for social work, it was breadth. Cabot
thought physicians’ enthusiastic acceptance of
empiricism had made them far too narrow in
scope, ignoring social and psychological fac-
tors in health. Social workers possessed the
breadth that physicians lacked but relied too
heavily on good intentions. They needed to
become more scientifi c and systematic to en-
sure that their methods were effective and to
develop a theoretical base for their work. Each
profession could gain from association with
the other.
Cabot set about reforming the treatment
process in the outpatient clinic. He hired
Garnet Pelton to fulfi ll three functions: (1) to
critique while helping to socialize medicine,
(2) to act as a translator between the physi-
cian and patient and family, and (3) to provide
information on social and mental factors.
Cabot described the critical role by saying
[S]he will not be there primarily as a critic,
but nevertheless she will be far better than the
average critic because she will be part of the
institution and will be criticism from the inside,
which I think is always the most valuable kind.
(Cabot, 1912, pp. 51–52)
Pelton kept records of every case, which were
used for instruction and to identify trends that
would be published in regular reports. Prior to
Pelton, no records of patient visits to the out-
patient department were kept at Massachusetts
Hospital.
Cabot viewed social workers as translators
of medical information to patients and families
in a way that they could understand. He said,
[T]he social worker . . . can reassure patients
as to the kind of things that are being done
and are going to be done with them. There
is no one else who explains; there is no other
person in the hospital whose chief business is
to explain things. (Cabot, 1912, p. 50)
Cabot also saw social workers as trans-
lators of information about patients and
families to physicians. Social work’s role in
providing social and psychological informa-
tion to physicians is described in a quote from
Ida Cannon:
While she must have an understanding of
the patient’s physical condition, the physical
condition is only one aspect of the patient to
which she must take account. As the physi-
cian sees the disease organ not isolated but
as possibly affecting the whole body, so the
hospital social worker sees the patient not
merely as an isolated, unfortunate person
occupying a hospital bed, but as a member
belonging to a family or community group
that is altered because of his ill health. Physi-
cian and nurse seek to strengthen the general
physical state of the patient so that he can
combat his disease. The social worker seeks
to remove those obstacles, either in the pa-
tient’s surroundings or in his mental attitude,
that interfere with successful treatment, thus
freeing the patient to aid in his own recovery.
(Cannon, 1923, pp. 14–15)
Cabot thought that social work could best fulfi ll
this role because nurses had “lost their claim
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10 Foundations of Social Work in Health Care
to be a profession by allowing themselves to
become mere implementers of doctor’s or-
ders” (Evison, 1995, p. 220). He defi ned social
work’s expertise as diagnosis and “treatment
of character in diffi culties,” which he saw as
encompassing expertise in mental health.
The hospital did not initially support
Pelton’s hiring, so Cabot paid her salary with
his own funds. To convince the hospital’s su-
perintendent, Frederic Washburn, that Pelton
was a good addition, Cabot set about docu-
menting that her hiring was cost effective. He
calculated that the hospital had spent $120 on
a baby with gastrointestinal problems whose
mother brought her to the hospital on four oc-
casions over a short period of time because
the family was unable to provide the nutrients
prescribed for her. Cabot did not want admin-
istrators to view social work’s primary role as
preventing misuse of hospital services but in-
stead to save money by helping to make treat-
ment more effective. He viewed medical social
workers as distinct from hospital almoners.
Ida Cannon took over for Garnet Pelton in
1906 when Pelton went to Saranac Lake, New
York, to receive treatment for pulmonary tu-
berculosis. Cannon was named the fi rst chief
of social work in 1914. She shared status with
the chief of surgery and the chief of medicine.
Cannon developed training programs for so-
cial workers at Massachusetts General Hos-
pital, including medical education. Cannon
hired Harriett Bartlett to be the fi rst educa-
tional director in the Social Work Department.
Other programs begun during her tenure in-
cluded a low-cost lunch counter for patients
and staff; a committee to investigate the social
correlates of tuberculosis, which produced the
fi rst comprehensive analysis of tuberculosis
in the United States; interdisciplinary medical
rounds with social workers; and clay model-
ing classes for psychiatric patients. Cannon
and Cabot together developed systems for
evaluating the effectiveness of social work in-
terventions and included this information in
medical records.
Cannon did not take the same radical views
of hospital social work that were espoused by
Pelton and Cabot, with whom she clashed
often during their fi rst years of working to-
gether. Cannon thought social workers should
accommodate hospital mechanisms rather
than being critics or reformers of medicine,
as Cabot had advocated. Nevertheless, the
two worked together until Cabot accepted a
commission of major in the Medical Reserve
Corps in 1917 during World War I. He re-
turned to the outpatient department of Massa-
chusetts General Hospital in 1918, but he then
left to chair Harvard’s Department of Social
Ethics in 1919. Shortly before he left the hos-
pital, its board of directors voted to make the
Social Service Department a permanent part
of the hospital and to cover the full cost of its
functioning. Prior to that, Cabot had covered
the cost of up to 13 social workers with his
personal funds.
Ida Cannon was named director of the new
Social Work Department in 1919. By the time
she retired from Massachusetts General Hos-
pital in 1945, the hospital employed 31 social
workers. Several former social workers at Mas-
sachusetts General Hospital went on to direct
departments in other hospitals, such as Mary
Antoinette Cannon (the University Hospital of
Philadelphia) and Ruth T. Boretti (Strong Me-
morial Hospital of the University of Rochester
School of Medicine and Dentistry).
GROWTH OF HOSPITAL
SOCIAL WORK
DEPARTMENTS
In 1961, Bartlett described the course of so-
cial work in health care as spiraling, “in which
periods of uncertainty and fl uidity alternated
with those of clarity and control” (p. 15). She
said that in its fi rst 30 years, growth was lin-
ear as social work spread from one hospital to
another. Methods were simple because social
work in hospitals “almost alone carried the re-
sponsibility for bringing the social viewpoint
into the hospital.”
The success achieved at Massachusetts
General Hospital eventually drew the attention
of the American Hospital Association and the
American Medical Association. Johns Hopkins
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Conceptual Underpinnings of Social Work in Health Care 11
Hospital hired Helen B. Pendleton, who had
worked with the Charity Organization Society
as its fi rst social worker in 1907. As had been
the case with Garnet Pelton at Massachusetts
General Hospital, Pendleton remained on the
job for only a few months. The position re-
mained vacant for four months, then she was
replaced by a graduate nurse. At Johns Hop-
kins, social workers initially were housed in
a room that was also used for storing surgical
supplies. They were not allowed on the wards,
which were controlled by nurses (Nacman,
1990). Social workers, however, controlled
access to medical records by physicians and
nurses and had to approve all free medical care
and prescriptions for medicine that was to last
longer than one week (Brogen, 1964). The de-
partment prospered, as had the department at
Massachusetts General Hospital, and by 1931
had a staff of 31.
Garnet Pelton completed a survey of so-
cial service in hospitals in the United States
in 1911 at the behest of John M. Glenn, the
fi rst director of the Russell Sage Foundation
and a strong proponent of social work in health
care. She was able to locate 44 social service
departments in 14 cities, 17 of which were in
New York City alone. These departments pro-
vided a range of services, all focused on the
provision of assistance to the patient (Cannon,
1952).
New York City, which housed nearly 40%
of the country’s hospital social service depart-
ments, organized the fi eld’s fi rst conference in
1912, which was called the New York Confer-
ence on Hospital Social Work. The conference
was held regularly between 1912 and 1933.
A quarterly report entitled Hospital Social
Service documented conference fi ndings and
highlighted the progress of various hospital so-
cial service departments.
By 1913, 200 U.S. hospitals had social
workers. Ruth Emerson, who left Massachu-
setts General Hospital in 1918, established the
social service department at the University of
Chicago. Edith M. Baker, who left Massachu-
setts General Hospital in 1923, established the
social service department at Washington Uni-
versity in St. Louis.
PROFESSIONALIZATION OF
THE FIELD
The fi rst training course in medical social work
was held in 1912. Cannon (1932) wrote that the
growth of such courses was slow and lacked
coordination until 1918, when the American
Association of Hospital Social Workers was
established in Kansas City. The association,
which employed an educational secretary, had
a twofold purpose: to foster and coordinate
the training of social workers in hospitals and
to enhance communication between schools
of social work and practitioners. Although
the American Association of Hospital Social
Workers was the fi rst national organization of
social workers in health care, it was preceded
by local organizations in St. Louis, Boston,
Philadelphia, Milwaukee, and New York. Mary
A. Stites, the author of History of the Ameri-
can Association of Medical Social Workers
(1955) says that prior to the establishment of
the American Association of Hospital Social
Workers, medical social workers in health care
for some time had congregated at meetings of
the National Conference of Social Work (for-
mally called the National Conference of Chari-
ties and Corrections). The burning question at
the fi rst meeting of the American Association of
Hospital Social Workers in 1918 was whether
the group should orient more closely with so-
cial work or medicine. Eight of the 30 women
who signed the association’s fi rst constitution
were graduate nurses.
The American Association of Hospital So-
cial Workers published a study of 1,000 cases
from 60 hospital social work departments in
1928. According to the report:
The social worker’s major contributions to
medical care, gauged by frequency of perfor-
mance, are: (1) the securing of information
to enable an adequate understanding of the
general health problem of the patient; (2) in-
terpretation of the patient’s health problem to
himself, his family and community welfare
agencies; and (3) the mobilizing of measures
for the relief of the patient and his associates.
Briefl y then, the basic practices of hospital
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12 Foundations of Social Work in Health Care
social work exhibited in the study under con-
sideration can be described as discovery of
the relevant social factors in the health prob-
lems of particular patients and infl uencing
these factors in such ways as to further the
patient’s medical care. (p. 28)
This description does not differ appreciably
from the way that hospital social work was
conceptualized by Cannon and Cabot at Mas-
sachusetts General Hospital.
A survey of schools of social work pub-
lished in 1929 (Cannon, 1932) listed 10 schools
that offered formal courses in medical social
work and 18 that were in the process of plan-
ning medical social work curriculum:
1. Washington University
2. University of Chicago
3. New York School of Social Work
4. Tulane University
5. University of Indiana
6. University of Missouri
7. Simmons College
8. Western Reserve University
9. Pennsylvania School of Social and
Health Work
10. National Catholic School of Social Work
In all, medical social work was considered
to be graduate-level work. A second survey
that year was sent to social service department
heads in hospitals asking them to query their
workers about their training and experience.
Of the 596 respondents, 70% had taken at least
one course in general social work, and 48%
of those had received a diploma or certifi cate
between 1899 and 1930. Interestingly, 38% of
respondents had completed at least one course
in nursing, and 86% of those had received a
certifi cate or diploma in nursing. The survey
listed six activities of medical social workers:
1. Medical social case management
2. Securing data
3. Health teaching
4. Follow-up
5. Adjustment of rates
6. Medical extension of transfer to convales-
cent home, public health agency, or medical
institution
In 1954, the year before the American As-
sociation of Medical Social Workers merged
with six other specialty organizations to form
the National Association of Social Work-
ers, 2,500 people attended its annual meet-
ing. The American Association of Medical
Social Workers was the largest of all social
work membership organizations. The current
major specialty organization for social work-
ers in health care on the national level, the
Society for Leadership in Health Care, boasts
700 members (Society for Social Work Lead-
ership in Health Care, 2011, January 2). This
organization, which changed its name from
the Society for Social Work Administrators
in Health Care in the 1990s and is affi liated
with the American Hospital Association, was
founded in 1965. Other current national or-
ganizations include the American Network of
Home Health Care Social Workers, the Asso-
ciation of Oncology Social Work, the Council
of Nephrology Social Workers, the National
Association of Perinatal Social Workers, and
the Society for Transplant Social Workers.
DEFINING MEDICAL
SOCIAL WORK
By 1934, the American Association of Medi-
cal Social Workers (the American Associa-
tion of Hospital Social Workers changed its
name that year) published a report prepared
by Harriet Bartlett. The report defi ned medical
social work as a specifi c form of social case
work that focuses on the relationship between
disease and social maladjustment. Bartlett
wrote, “[I]t is an important part of the social
worker’s function to concern herself with the
social problems arising directly out of the na-
ture of the medical treatment. In this way, she
facilitates and extends the medical treatment”
(p. 99). Emphasis was placed on surmounting
social impediments to health, “providing some
occupation or experience for the person jolted
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Conceptual Underpinnings of Social Work in Health Care 13
out of his regular plan of life by chronic dis-
ease, to offset what he has lost and to make
him feel that he has still a useful place in the
world” (p. 99).
The 1934 report highlighted a series of
problems as requiring particular attention.
They were: (a) the integration of psychologi-
cal concepts, defi ned in part as needing to
know more about human motivation in gen-
eral and in relation to illness; (b) problems
of functional and mental disease, specifi cally
the need to integrate the study of the organism
with that of the personality; and (c) problems
of methods of thinking, which had to do with
balancing the study of personality with a con-
sideration of the person in his social situation.
This competition for attention between
personality and social environment gained
salience with the advent of psychiatry and
psychoanalysis in the United States. Although
popular in Europe in the 1880s and 1890s,
mental treatment in hospitals did not take hold
in the United States at fi rst. Courses in psycho-
therapy began appearing in medical schools
in 1907, and Freud made his fi rst tour of the
United States two years later.
The emergence of psychiatry and psycho-
analysis into medicine had two major effects
on social work in health care. First, psychia-
try’s emergence into medicine is tied to the
appearance of other professionals in hospi-
tals, such as psychologists and social scien-
tists. Their presence meant that the social and
mental domains of health were no longer ex-
clusive to social work and that medical social
work for the fi rst time had signifi cant competi-
tion for a role in health care.
A second effect of psychiatry’s emergence
into medicine was the impact of psychoana-
lytic theory on how social workers in health
care approached cases, namely, from a more
person-centered perspective. The confusion
between a focus on personality and on social
environment remained after psychiatric social
work separated from medical social work. The
separation often is attributed to 1919, when
Smith College developed a course for psy-
chiatric aides attached to the U.S. Army dur-
ing World War I (Grinker, MacGregor, Selan,
Klein, & Kohrman, 1961), although the Psy-
chiatric Social Service Department was not
established at Massachusetts General Hospital
until 1930. Mary Jarrett (1919), the associate
director of the Smith College Training School
for Social Work, argued for a more psychiatric
approach to case work in her address to the
Conference of Social Work in 1919:
One by-product of the psychiatric point of
view in social case work is worth consid-
eration in these days of overworked social
workers, that is, the greater ease in work
that it gives the social worker. The strain of
dealing with unknown quantities is perhaps
the greatest cause of fatigue in our work. . . .
More exact knowledge of personalities with
which we are dealing not only saves the
worker worry and strain but also releases
energy which can be applied to treatment. . . .
Another result is that impatience is almost
entirely eliminated. No time is wasted upon
annoyance or indignation with the uncoop-
erative housewife, the persistent liar, the re-
peatedly delinquent girl. . . . I know of social
workers who looked with suspicion upon
the careful preliminary study of personal-
ity, because they feared that all the worker’s
interest might go into the analysis, and that
treatment might be neglected. I believe that
fear has been something of a bugaboo in so-
cial work. (p. 592)
The implication of Jarrett’s address is that a
focus on personality allows the social worker
to get at the client’s problem with ease, thus
saving time for treatment.
Another possible source of social work’s at-
traction to psychoanalytic theory was Abraham
Flexner’s 1915 address to the National Con-
ference of Charities and Corrections, in which
he said that social work was not a profession.
Flexner defi ned professions as: (a) involving
essentially intellectual operations, (b) having
large individual responsibility, (c) deriving
their raw material from science and learning,
(d) working up their material to a practical
and defi nite end, (e) possessing educationally
communicable techniques, (f) tending to self-
organization, and (g) becoming increasingly
altruistic in motivation. He said that although
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14 Foundations of Social Work in Health Care
social work had a professional spirit, it failed
to meet all of the criteria for a profession be-
cause its members did not have a great deal of
individual responsibility and lacked a written
body of knowledge and educationally com-
municable techniques. Flexner’s address had
a profound effect on the fi eld. Some social
workers viewed medicine as a model profes-
sion and an intrapersonal approach as more
professional than one focused on social and
environmental factors.
Nacman (1990) notes that, by the 1940s,
psychosocial information was increasingly
being used by medical social workers to
make medical diagnoses and treatment
plans. This was in contrast to its use, in Ida
Cannon’s words, “to remove those obstacles,
either in the patient’s surroundings or in his
mental attitude, that interfere with success-
ful treatment, thus freeing the patient to aid
in his own recovery” (1923, pp. 14–15). The
work of Helen Harris Perlman countered the
tendency to use information primarily to
make medical diagnoses and plans by em-
phasizing social science concepts over psy-
choanalytic ones and refocusing on society
and environment. A focus on environment
was reinforced in the 1950s by the commu-
nity mental health and public health move-
ments (see Chapter 4 of this text) and the
civil rights movement of the 1960s.
SOCIAL WORK IN HEALTH
CARE: BEYOND THE
HOSPITAL
After World War II and the passage of the
Social Security Act, social work in health
care began to branch out from its hospital
base. Social work programs were established
in the U.S. Army and Navy and the Veter-
ans Administration. The advent in the mid-
1960s of Medicare and Medicaid, and titles
XVIII and XIX of the Social Security Act,
provided coverage for people who might
otherwise not have been treated. These two
programs further increased the need for so-
cial work services.
The number of social workers in health care
increased with the variety of work settings.
Between 1960 and 1970, the number of social
workers in health care nearly doubled (Bracht,
1974). By 1971, social workers were employed
in a wide range of settings. A Medicare report
from that year reported 11,576 social workers
in 6,935 participating hospitals, 2,759 in 4,829
extended-care facilities, and 316 social workers
in 2,410 home health agencies (U.S. Department
of Health, Education, and Welfare, 1976). Social
workers also could be found in state and local
health departments and in federal agencies, such
as the Department of Defense. Social workers
entered new health-care arenas, such as preven-
tive and emergency services. Techniques were
added to the social work repertoire to address
these new settings and arenas. Interventions ap-
peared based on behavior, cognitive, family sys-
tems, crisis, and group work theories. Because
health costs were growing at an alarming rate,
the federal government began to institute mea-
sures to control costs. In 1967, utilization review
measures were enacted that required Medicare
providers to demonstrate that care was neces-
sary and that its costs were reasonable. In 1972,
Congress enacted the Peer Standards Review
Act, which required the peer review of medical
billing to ensure that services had been utilized
appropriately.
Neither utilization review nor peer stan-
dards review proved as effective as was hoped.
Another attempt to control costs took its cues
from a long history of prepaid health-care ar-
rangements provided to workers around the
country, the fi rst of which was a rural farm-
ers’ cooperative in Elk City, Oklahoma, in
1929. The best known of these arrangements
was the Kaiser Permanente Health Plan. In
1973, the Health Maintenance Organization
(HMO) Act was passed by the Nixon admin-
istration. The act authorized $375 million in
federal grants to develop HMOs. Initially, em-
ployers saw HMOs as a less expensive way
of providing insurance to their employees.
In recent years, state governments have used
managed care in their Medicaid programs. By
1993, 70% of Americans with health insurance
were enrolled in some form of managed care.
JWBT514_ch01.indd 14JWBT514_ch01.indd 14 9/21/11 7:41 PM9/21/11 7:41 PM
Conceptual Underpinnings of Social Work in Health Care 15
Cornelius (1994) distills the perils of managed
care for social workers by saying that
the social worker becomes an agent of man-
aged care and agrees to serve the public
within the corporate guidelines and not nec-
essarily according to the assessed needs of
the client. . . . If the social worker practices
outside the protocols, . . . the client is denied
coverage and the social worker is denied re-
imbursement; money becomes the carrot and
the stick. (p. 52)
Another major cost containment effort had
a profound effect on hospital care. The pro-
spective payment system, based on a set of 500
diagnostic-related groups (DRGs), each with
its own specifi c payment rate, was instituted
in 1983 to replace traditional retrospective re-
imbursement for hospital care. The rates were
developed based on the nature of the illness,
accepted treatment procedures, whether the
hospital was a teaching facility, local wage
scales, and the hospital’s location (Reamer,
1985, p. 86). This standardization was in-
tended to provide an incentive for hospitals to
become more effi cient.
Under DRGs, patients entered the hospital
sicker and left sooner (Dobrof, 1991). This
impacted hospital social work services in two
major ways:
1. Hospitalization was seen as a failure of the
system, and every effort was made to avoid
it; thus, those who were admitted were
quite ill.
2. Because hospitals were paid a specifi ed
rate, it was in their best interests to keep
stays as short as possible. Because patients
entered more ill and stayed for a shorter
time, less comprehensive care could be pro-
vided in hospitals.
Although there is debate about the extent to
which social workers were cut from hospitals
(see, e.g., Coulton, 1988), many social work
forces in hospitals were downsized or recon-
fi gured during this period. Some were merged
with other departments, others self-governed,
and, in other cases, social workers and other
professionals were organized by service rather
than by department.
It is clear that hospital social workers found
less opportunity to spend time with patients
because patients were there for less time, and
much of the social worker’s time was taken
by helping to prepare sicker patients and their
families for recuperation at home or in other
facilities, such as extended-care facilities. Do-
brof (1991) describes “hospital-based social
workers confronting larger caseloads of sicker
patients with increased need for home care ser-
vices or placement in nursing homes” (p. 44).
Both HMOs and DRGs affected how so-
cial workers in health care practiced. HMOs
restricted social workers’ ability to practice
based on their own assessment of needs. DRGs
limited the time that social workers in hospi-
tals had to work with patients and forced an
emphasis on discharge planning. This limited
social workers’ ability to perform in the man-
ner outlined by its founders, such as Bartlett,
“to concern herself with the social problems
arising directly out of the nature of medical
treatment” (1934, p. 99), or Cannon, “to re-
move those obstacles . . . that interfere with suc-
cessful treatment” (1923, pp. 14–15).
New techniques have been developed in
response to time limits on treatment. Task-
centered case work (Reid & Epstein, 1972)
emphasizes the goals of treatment, and a num-
ber of brief treatment techniques have been
developed (see, e.g., Mailick, 1990). Social
workers have helped to adapt intervention the-
ories for use in health settings, such as stress
inoculation from cognitive theory (see, e.g.,
Blythe & Erdahl, 1986).
Claiborne and Vandenburgh (2001) defi ne a
new role for social workers as disease manag-
ers. As patients live longer with disease con-
ditions or survive conditions once considered
fatal, such as cancer, issues of quality of life
arise. Survivors of cancer, previously expect-
ing to die, need assistance with learning how to
live. Those with long-term health conditions,
such as rheumatoid arthritis, require guidance
on how to live a full life with their condition.
As a rule, disease management entails “a team
of professionals that integrates and coordinates
JWBT514_ch01.indd 15JWBT514_ch01.indd 15 9/21/11 7:41 PM9/21/11 7:41 PM
16 Foundations of Social Work in Health Care
care across an array of services to maintain op-
timal patient functioning and quality of life”
(Claiborne & Vandenburgh, 2001, p. 220).
These teams often operate across facilities.
Claiborne and Vandenburgh see social work-
ers as key members of disease management
teams due to their ability to work across health
systems and managed care settings. Chapters 8
and 20 of this text discuss mental health issues
in chronic illness.
The Patient Protection and Affordable Care
Act (PPACA), which was enacted in March
2010, represents a radical change in how health-
care services are constructed and delivered. Al-
though its course and impact are yet to be seen,
Darnell and Lawlor (in Chapter 5 of this text)
argue that the PPACA will change the land-
scape of health social work practice for the fore-
seeable future and heighten its importance, for
a number of reasons. Although the PPACA in-
cludes provisions to extend insurance coverage,
for example, it falls short of universal coverage.
Darnell and Lawlor estimate that 23 million
people will remain uninsured in 2019, includ-
ing undocumented immigrants, who except
for emergency situations are excluded from
Medicaid coverage. Health social workers will
be important advocates for those who remain
uninsured. Also, despite improved affordabil-
ity of insurance coverage, the coordination of
care will remain a challenge (Gorin, Gehlert, &
Washington, 2010). Health social workers will
play a crucial role in connecting patients to ap-
propriate services and maintaining the safety
net for those who do not qualify for services.
CHANGES IN TECHNIQUE
AND APPROACH THROUGH
TIME
The settings in which social work is practiced
in health care have changed through time.
From 1905 until 1930, medical social work-
ers practiced almost entirely in hospitals. Har-
riet Bartlett (1957) described the course of
change during that period as linear, with the
number of social service departments increas-
ing steadily and their claim to the social and
mental domains largely unchallenged by other
disciplines. With the advent of psychotherapy,
however, professionals such as psychologists
and other social scientists began to work in
hospitals, and for the fi rst time social workers
had to compete for roles.
The period of linear growth was followed
by an expansion into previously unimagined
settings. Federally imposed cost containment,
beginning in the late 1960s, posed challenges
to social workers in health care and forced a
great deal of fl exibility and creativity. In some
respects, competition with other disciplines
that social work experienced in its most recent
70 years in health care, and its failure to defi ne
a niche that was exclusively its own since that
time (see, e.g., Lister, 1980), prepared social
workers to remain viable in a changing health-
care environment. They have adapted well to
these changing environments.
How do the visions of Ida Cannon and Rich-
ard Cabot hold in the current health environ-
ment in which social workers practice? At a time
when the changing demographics pose prob-
lems of communication in health care, Cabot’s
idea of social worker as translator or interpreter
seems modern and as salient today as it was in
1905. In 2000, 1 in 10 U.S. residents, over 28.4
million people, was born outside the country
(Lollock, 2001). These fi gures do not include
an estimated 10.9 million undocumented immi-
grants (Camarota & Jensenius, 2009).
The current 10% of U.S. residents who
were born outside the country compares to a
high of 15% between 1890 and 1910, the years
during which Mary Stewart was hired in Lon-
don and Garnet Pelton and Ida Cannon were
hired in Boston. The percentage born outside
the country in 2000 is higher than it was for
the decades that immediately preceded 2000.
According to U.S. Census Bureau records, 7%
of the population was born outside the United
States in the 1950s, 5% in the 1970s, and 8%
in the 1990s (Lollock, 2001).
As outlined in Chapter 10 of this text, com-
munication is the key to the provision of ef-
fective health care. Clinical encounters are
more problematic when providers and patients
are from different racial or ethnic groups or
JWBT514_ch01.indd 16JWBT514_ch01.indd 16 9/21/11 7:41 PM9/21/11 7:41 PM
Conceptual Underpinnings of Social Work in Health Care 17
different socioeconomic statuses. A report by
the Institute of Medicine (2002) implicated
physician behavior in health disparities in
the United States, and researchers (see, e.g.,
Johnson, Roter, Powe, & Cooper, 2004) have
noted different communication patterns among
White American physicians when they are
dealing with African American versus White
American patients. It is unlikely, however,
that these biases are limited to physicians. Al-
though empirical studies to date have centered
on the behavior of physicians as the time that
providers are able to spend with patients de-
creases, the opportunity for mental shortcuts
that can lead to bias increases (Burgess, Fu, &
von Ryn, 1990). Clearly, the translator or in-
terpreter role fi rst defi ned by Richard Cabot in
1905 remains important in health care today.
Likewise, the idea that social workers are in
the best position among professionals in health
care to interpret information from patients and
families to providers and to interpret and ex-
plain information from providers to patients
and families holds true.
Cannon’s dictum that the social worker see
the patient “as a member belonging to a family
or community group that is altered because of
his ill health” (1923, p. 15) also seems ger-
mane to the current challenge of disease man-
agement. Cannon was writing at a time prior to
the development of treatment advances, such
as antibiotics, chemotherapy, and radiation
therapy, when patients did not live for long pe-
riods of time with chronic health conditions.
Her words seem even more salient today when
a growing number of patients face living with
chronic conditions.
Cabot’s belief that social workers should
become more scientifi c and systematic was
evidenced with the advent of research in so-
cial work in the late 1960s and early 1970s. He
and Cannon would be heartened by the success
of evidence-based practice and the active in-
corporation of research in social work practice
in health care. Social workers with health-care
backgrounds now head research teams and
serve as program directors and other key posi-
tions at the National Institutes of Health and
other federal agencies.
Although they initially disagreed about the
role of social workers as critics or agents of
socialization within hospitals, both Cabot and
Cannon doubtless would be impressed by the
growing number of social workers who serve
as administrators of hospitals and health-care
agencies and institutions across the United
States.
Ida Cannon’s statement that social work,
when practiced at its best, “is a constantly
changing activity, gradually building up guid-
ing principles from accumulated knowledge
yet changing in techniques” (1923, p. 9), still
holds true. Social work in health care has
been through a great deal in 100 years and has
weathered seemingly insurmountable chal-
lenges through time. As noted by Darnell and
Lawlor in Chapter 5 of this text, health social
workers now face a role as policy implemen-
tors and advocates for the health-care delivery
systems changes that come from the 2010 Pa-
tient Protection and Affordable Care Act. De-
spite these never-ending challenges, however,
the guiding principles of social work in health
care remain in force and are as strong today as
they were in 1905.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 1.1
The people involved in establishing the fi rst
Social Service Department at Massachusetts
General Hospital (Ida Cannon, Garnet Pelton,
and Richard Cabot) were all White Americans
and came from families without fi nancial dif-
fi culties. Cabot was from a very privileged
background. Cannon’s father was a railroad
administrator in Minnesota. That Pelton was
able to obtain nurses’ training at the turn of the
century suggests that she had means. The sub-
sequent century of social work’s involvement
in health care has seen the inclusion of many
people from a number of racial, ethnic, and
socioeconomic backgrounds. In small groups,
indicate how you think the diverse nature of
the health social work today might infl uence
JWBT514_ch01.indd 17JWBT514_ch01.indd 17 9/21/11 7:41 PM9/21/11 7:41 PM
18 Foundations of Social Work in Health Care
the professions’ ability to advocate for the
23 million people whom Darnell and Lawlor
(see Chapter 5 of this text) estimate will re-
main uninsured in 2019, despite the passage
of the 2010 Patient Protection and Affordable
Care Act.
Learning Exercise 1.2
The fi rst hospital almoner in England (Mary
Stewart) and the fi rst hospital social worker in
the United States (Garnet Pelton) were women
whose hiring was championed by men with in-
fl uence in medicine (Charles Loch and Rich-
ard Cabot). Who should be credited for the
development of social work in health care? To
what extent do you think that the development
of social work in health care is attributable to
the vision of Loch and Cabot? Were Loch and
Cabot necessary catalysts for the development
of social work in hospitals rather than its pio-
neers? In other words, to what extent to you
think that the vision and actions of women like
Pelton and Cannon contributed to the devel-
opment of health social work? What does this
all say about gender roles and relationships in
the United States and within the profession of
social work?
Learning Exercise 1.3
Despite improvements in our ability to treat
serious disease and improvements in the af-
fordability of health insurance, health dis-
parities by race, ethnicity, and socioeconomic
status in the United States have continued to
rise. Do you think that the enactment of the
Patient Protection and Affordability Act will
(1) decrease health disparities or (2) do you
think that, while it will decrease the number
of people who are at risk for adverse health
outcomes, it will widen the gap between those
who do and do not have access to adequate and
appropriate health care, and thus increase dis-
parities? Divide into two groups and develop
arguments for each position. How might health
social work help to ameliorate health dispari-
ties in the United States?
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20
2
Social Work Roles and Health-
Care Settings
TERI BROWNE
Necessarily, the role of health social workers
through time has changed to accommodate
federal, state, and local policy changes; trends
in health and disease; and the changing roles of
other health-care professionals. As discussed
in Chapter 1, however, the basic function of
social work remains, and social workers’ roles
today refl ect their responsibility for treating
the whole person by taking a biopsychosocial
approach to outreach, assessment, interven-
tion, and care.
Health social workers operate in a variety
of environments and assume numerous roles
in the design, delivery, and evaluation of care.
Social workers facilitate linkages across orga-
nizational systems and professions to improve
health care for both individuals and popula-
tions. This occurs in myriad settings, in a num-
ber of different ways, and with various levels
of transdisciplinary collaboration. Health so-
cial workers need to be aware of these factors
to most effectively provide services to individ-
uals and communities.
Chapter Objectives
• Describe a biopsychosocial approach to
health care and the professionals who
deliver it.
• Defi ne the role of the social worker on the
health-care team.
• Outline the tasks of health social workers
related to the delivery and design of health
care.
• Discuss professional issues and challenges
related to teamwork and recommendations
for effective collaboration.
SOCIAL WORK’S
BIOPSYCHOSOCIAL
APPROACH TO
HEALTH CARE
Increasingly, the recommended approach for
health-care service delivery today is biopsy-
chosocial. Proposed by Engel in 1977, the
biopsychosocial model addresses the biologi-
cal, social, environmental, psychological, and
behavioral aspects of illness. This model ex-
pands the traditional medical model of health
care that focuses primarily on the biological
causes of disease. The biopsychosocial model
considers the nonmedical determinants of
disease in collaboration with the purely bio-
logical components. For example, a biopsy-
chosocial model of health service takes into
account patients’ ability to purchase recom-
mended medicine for diabetes when creating a
treatment plan for patients rather than focusing
only on laboratory results and physical status,
as a medical-model approach would do. Lin-
dau, Laumann, Levinson, and Waite’s (2003)
interactive biopsychosocial model expands
Engel’s model to include general health status
Note: The author would like to thank her Uni-
versity of South Carolina College of Social Work
research assistants, Sonya Davis-Kennedy, Les-
ley Jacobs, Olivia Jones, Derrick Jordan, Cassidy
Shaver, Valerie Stiling, Felix Weston, and Jennifer
Worthington, for reviewing this chapter and making
suggestions for added content.
JWBT514_ch02.indd 20JWBT514_ch02.indd 20 9/21/11 7:42 PM9/21/11 7:42 PM
Social Work Roles and Health-Care Settings 21
rather than illness alone and consideration
of the important role of social networks and
cultural contexts in health. For the purposes of
this chapter, the term biopsychosocial is used
to indicate an approach to health service deliv-
ery that addresses the psychological and social
aspects of health and treatment that includes
behavioral and environmental factors.
Intervention that considers biopsychosocial
issues related to health requires the use of a
transdisciplinary team of professionals to ad-
dress medical problems and concerns in a va-
riety of settings. In addition to social workers,
professionals may include physicians, physi-
cian assistants, and residents; nurses and nurse
practitioners; dietitians; psychologists; patient
care technicians; nurse and home health aides;
physical, occupational, and speech therapists;
administrators; chaplains; and pharmacists. In-
dividual patients and members of their social
support network are also increasingly recog-
nized as critically important members of trans-
disciplinary teams (McWilliam, 2009).
Limits of the Medical Approach:
Psychosocial Issues Related to Health
Before the introduction of Engel’s biopsycho-
social model, Nason and Delbanco (1976) rec-
ommended that providers of medical services
attend to patients’ psychosocial issues and
advocated for the inclusion of social workers
on health-care teams. Health social workers
directly address the social, behavioral, and
emotional concerns of individuals and their
social support network as well as develop and
administer policies and programs and conduct
research that are attuned to the psychosocial
needs of individuals.
On an individual level, people may not be
able to understand illness and recommended
treatment because of developmental disabili-
ties; low literacy levels; or language, hearing,
or vision barriers. Many medical conditions
and treatments are very complex, and social
workers may be required to explain these is-
sues to patients and their families. Socio-
economic disadvantage can greatly impact
a patient’s ability to receive medical care. If
she lacks adequate health insurance, transpor-
tation to medical appointments, prescription
coverage, or money to buy nutritional supple-
ments and special dietary products, her health
may be compromised. Patients may need
myriad services from a number of agencies,
such as meal delivery, homemaker services,
or physical therapy. Arranging and coordi-
nating community services can be confusing
or overwhelming for patients, especially for
those with additional social, psychological, or
medical burdens. Environmental factors also
directly impact individuals’ social function-
ing and health status (see Chapters 4 and 7 for
models of how environmental factors infl uence
health and functioning).
Emotional problems can be caused by and
result from health problems (see Chapter 8).
After a major medical procedure such as open
heart surgery, a patient’s anxiety may increase
(Ben-Zur, Rappaport, Ammar, & Uretzky,
2000). Among people with cardiovascular dis-
ease, untreated depression has been found to
increase the risk of a heart attack (Monster,
Johnsen, Olsen, McLaughlin, & Sorenson,
2004). A person who is depressed may be less
motivated to follow up with medical appoint-
ments. If he is not coping well with his diag-
nosis and treatment regimen, he may do less
well physically (Livneh, 2000). Effective cop-
ing, enhanced self-effi cacy, and optimism have
been associated with enhanced quality of life
in people with chronic illnesses (Rose, Fliege,
Hildebrandt, Schirop, & Klapp, 2002).
Patients’ social support networks can in-
fl uence their health status signifi cantly. As
discussed in Chapter 13, families can provide
important support and assistance during times
of health crisis, or they can represent barriers
to optimal care. For example, the husband of
a breast cancer patient who does not support
the doctor’s recommendation for a double
mastectomy may confound and even further
harm the patient’s health status by causing her
to become reluctant to have the necessary sur-
gery. Family structure and the availability of
social support impacts the health of patients
across their life course (Thompson, Auslander,
& White, 2001).
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22 Foundations of Social Work in Health Care
Conversely, illness may exacerbate exist-
ing psychosocial problems; for example, a
woman in a troubled marriage who becomes
ill may lose her primary social support when
her partner leaves because he cannot cope with
the stress of her illness and its treatment. This
may leave her with no transportation to medi-
cal appointments in addition to coping with is-
sues related to role adjustment and loss, both
of which can negatively impact her health.
If a child has supportive family members to
help him with the challenges of medical prob-
lems and hospitalizations, he will likely fare
better than a child who does not. Likewise, a
woman recovering from heart surgery who has
neighbors or family to help with household
chores and child care may recuperate better
and be more likely to attend weekly cardiac
rehabilitation appointments than someone who
has no help. Psychosocial issues like these,
which occur outside hospitals and doctors’ of-
fi ces, greatly infl uence individuals’ abilities to
maintain their health.
Many individuals who seek medical care
also have what Rehr (1982) refers to as “social
illnesses and problems.” These illnesses and
problems are psychosocial rather than bio-
logical in nature, such as child or elder abuse,
violence (including sexual assault and fam-
ily violence), substance use, other harmful
behaviors such as “cutting” or bulimia, and
suicide attempts. All are factors that require
social work attention and intervention to im-
prove biopsychosocial status and, consequen-
tially, health status. For example, Sormanti and
Shibusawa (2008) found that 5.5% of women
ages 50 to 64 years seen at emergency depart-
ments and primary care clinics were victims
of intimate partner violence. This and other
fi ndings suggest a need for social workers in
medical settings to intervene with patients who
are burdened with these “social illnesses and
problems” in addition to medical illnesses.
The current health-care environment in the
United States (see Chapter 5) emphasizes cost
containment through shorter hospital stays,
briefer medical interventions, and the provi-
sion of fewer comprehensive services with
fewer personnel. For example, decades ago,
individuals may have spent a number of weeks
in a hospital recuperating from hip replace-
ment or liver transplant surgery. Many surgical
procedures that were once done on an inpatient
basis are now performed in outpatient, same-
day facilities. Lengthy hospital stays are now
the exception rather than the rule because of
fi xed reimbursement for medical procedures,
and an individual who has a hip replaced or
receives a liver transplant may be discharged
from the hospital a few days after her surgery.
The trend toward shorter hospital stays and
greater reliance on outpatient care may exacer-
bate patient psychosocial problems. Bateman
and Whitaker (2002) assert that social workers
are needed in medical settings to address in-
creased home care needs in part because they
can provide discharge planning that links pa-
tients to necessary home health services. The
authors also suggest that social workers should
play a greater role in primary care settings, ad-
dressing medical issues on a preventive level
to decrease morbidity and the need for hospi-
talization. (See Box 2.1.)
Related to an emphasis on medical cost
containment is an increase in community
health programs. Aimed at preventing illness
or health issues, programs that confront issues
such as prenatal care and cancer screening em-
ploy social workers in their orchestration and
day-to-day functioning.
Health Settings and the Social Worker’s
Place Within Them
Direct health services are provided in various
settings and include public and private hospi-
tals, outpatient clinics, neighborhood health
centers, ambulatory surgery centers, physi-
cian’s offi ces, mobile care units, skilled nurs-
ing facilities, military settings, correctional
facilities, schools, and health maintenance or-
ganizations. Care may be provided in centers
devoted to specifi c diseases, such as kidney
failure (dialysis centers), cancer (chemother-
apy clinics), and human immunodefi ciency
virus (HIV)/acquired immunodefi ciency syn-
drome (AIDS) (community health clinics),
or in multipurpose organizations that address
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Social Work Roles and Health-Care Settings 23
local, state, and federal agencies; community
organizations; government offi ces; or schools
and research institutions. Health is considered
across the life course in micro- and macrolevel
settings, from prenatal and infant care to older
adult and end-of-life care.
Health is a critical practice area for all so-
cial workers, both on clinical levels and macro
levels, and social workers play an important
role in each of these care settings. U.S. News &
World Report (2010) ranked medical and pub-
lic health social work as one of their 50 best
careers of 2011. In 2010, 22% of all social
workers were employed as medical and pub-
lic health social workers, and it is projected
that between 2008 and 2018 the number of
health social workers in the United States will
increase by 22% (U.S. Department of Labor,
2010).
Regulatory standards for social work in
health care vary by state in the United States,
with each state having a different set of li-
censing rules for social workers. Health orga-
nizations also differ in how they recommend
and regulate the inclusion of social workers
on health-care teams. As noted in Chapter 1,
social workers have been involved in medical
settings for over a century and are essential to
the implementation of biopsychosocial models
of health service delivery.
Empirical evidence indicates that ap-
proaches to health care that include social
workers and nurses in addition to physicians
result in better patient outcomes than ap-
proaches involving physicians alone; such
evidence also suggests that social worker
and nurse interventions are less costly. For
example, Sommers, Marton, Barbaccia, and
Randolph (2000) conducted an experimen-
tal research study on the effectiveness of an
interdisciplinary team model in the provision
of primary care. In this study, the interven-
tion group received care from a primary care
physician, registered nurse, and social worker
while the control group received care from the
primary care physician alone. The researchers
found that the group cared for by the multi-
disciplinary team experienced signifi cantly
lower rates of hospitalization and hospital
Box 2.1 Health Social Work Profi le
Mildred Williamson, MSW, PhD, is the
director of programs and research for
the Ambulatory and Community Health
Network of the Cook County Bureau of
Health Services in Chicago, IL. In this
capacity, she creates health programs based
on the community’s needs. She previously
was the administrator of the Woodlawn
Health Center in Chicago and the Women
and Children HIV Program at the Cook
County Hospital. Williamson is a recipient
of many local, state, federal, and private
foundation grants for health research. She
has served as a member of the Centers for
Disease Control and Prevention’s Advisory
Council on HIV/AIDS Prevention and
Care and is on the boards of directors of
two Chicago HIV-related organizations:
Vision House and the Families’ and
Children’s AIDS Network. Williamson
currently serves on the board of the AIDS
Alliance for Children, Youth, and Families,
a national organization of HIV family- and
youth-centered care providers, advocates,
and consumers that she helped found
in 1994. She served as president of the
organization’s board from 1997 to 2001.
numerous health issues. For example, Rock
and Cooper (2000) describe possible social
work activities in a primary care clinic. These
activities include patient assessment; screen-
ing and treatment for alcoholism, depression,
and anxiety; case management; cognitive-
behavioral therapy to improve patient self-
management of the treatment regimes; and
bereavement counseling.
Other practice settings might specifi cally
treat acute medical needs (including outpa-
tient services or services provided on an ad
hoc basis) or chronic medical needs where pa-
tients are admitted and receive services for a
period of time. Indirect health services, such
as program and policy planning and health
programming, may be overseen by profes-
sionals working on transdisciplinary teams via
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24 Foundations of Social Work in Health Care
readmission, fewer follow-up physician visits,
and increased participation in social activities.
They estimated that the interdisciplinary ap-
proach saved at least $90 per patient (includ-
ing the cost of the additional personnel), not
including the savings from fewer physician
visits.
Additional research supports the notion that
social work services are needed by patients in
health-care settings. McGuire, Bikson, and
Blue-Howells (2005) distributed self-adminis-
tered surveys to 684 patients receiving primary
care services at four Veterans Affairs clinics.
These surveys were completed anonymously
and offered to every patient seen at the clin-
ics during data collection. They measured pa-
tients’ psychosocial needs such as fi nancial
assistance, housing, and counseling. Almost
two-thirds of patients reported experiencing
psychosocial barriers. Sixty-three percent re-
ported fi nancial problems, and 62% reported
personal stress. More than one third (38%) of
the patients had problems such as unemploy-
ment, poor transportation, and relationship
issues. About a quarter of the patients were
homeless (28%) or needed home health care
(21%). Only 15% of those surveyed reported
experiencing no psychosocial barriers to fol-
lowing primary care recommendations, and
most of the patients (74%) had more than one
social problem.
SOCIAL WORKER’S ROLE ON
HEALTH TEAMS
Social workers are essential to the delivery and
design of optimal health care. Social work-
ers contribute via direct clinical contact with
patients and their families as well as through
roles in macrolevel settings. They work on
health teams comprised of direct patient-care
professionals and as administrators oversee-
ing program planning and implementation.
Health social work tasks are congruent with
the goals of the profession of social work and
include helping clients problem solve and
cope with life stressors; linking individuals
with resources, services, and opportunities;
promoting effective and humane service sys-
tems; and developing and improving social
policy (Gambrill, 1997).
Hands-On Practice: Social Workers
as Part of Health-Care Delivery
A wide variety of health social work tasks
exist in direct patient-care settings. These in-
clude interventions with patients and members
of their social support networks, collabora-
tions with members of transdisciplinary teams,
coordination of services within the community
and entitlement agencies, advocacy with gov-
ernmental bodies for patient needs, and super-
vision or administration in health facilities.
Activities of the health social worker in direct
patient-care settings include careful assess-
ment of patient situations and the design and
implementation of interventions.
Health Social Work Assessment
Social workers conduct an evaluation of the
strengths and needs of individuals and mem-
bers of their social support network as part
of a social work assessment to identify assets
and potential barriers to care. These efforts are
specifi c to practice settings and infl uenced by
organizational or regulatory requirements and
the type of services offered by the organiza-
tion. For example, a hospital may have a stan-
dard social work assessment tool used in all
departments. Oncology social workers may
use a standardized tool that is specifi c to the
needs of cancer patients, whereas rehabilita-
tion social workers likely will use a different
type of assessment tool. Such assessment tools
are not limited to disease, and social workers
also help health-care teams assess psychologi-
cal and social issues, such as domestic violence
(Danis, 2003) and socioeconomic barriers to
the attainment of quality health care, among
other issues.
Health Social Work Intervention
Based on a careful assessment of needs, social
workers provide assistance and develop and
implement interventions to address identifi ed
needs. This process may include explaining
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Social Work Roles and Health-Care Settings 25
the disease and its treatment to patients in a
manner that is sensitive to their literacy levels;
developmental stages; and language, visual,
or hearing barriers. Facilitating communica-
tion between providers and patients is a key
health social work role further discussed in
Chapter 10. (See Box 2.2.)
Social workers are familiar with the eligi-
bility requirements of local and federal entitle-
ment programs and can help patients and their
families access and learn more about these re-
sources. Social workers are the health profes-
sionals who possess “the knowledge necessary
to assess social services needs [and] to secure
and coordinate community-based services”
(Berkman, 1996, p. 545). Health social work-
ers can help patients gain needed resources by
providing case management services that refer
and link patients and their families to services
and other resources.
Furthermore, health social work has a
dual focus of enhancing social institutions’
responses to human needs and enhancing the
Box 2.2 Health Social Work Profi le
Kay Ammon, MSW, LCSW, QSW, is a
social worker in the intensive care nursery
at Santa Clara Valley Medical Center in
San Jose, CA. Working with critically ill
infants and their families, Ammon orients
families to the nursery, which is highly
technical and can be overwhelming, and
discusses its policies and procedures.
Ammon provides emotional support, grief
counseling, coping with guilt and anxiety,
end-of-life care and information, referral,
and linkages to resources for ill children
and their families. As a Spanish-speaking
health-care provider working with many
Hispanic families, she considers herself a
“key link” between families and the health-
care team. She translates sophisticated
medical communications for patients’
families and coordinates family care
conferences. She helps families understand
complex medical terminology and
discharge recommendations.
social functioning of individuals (Dhooper,
1994). Health social workers use their clini-
cal skills to help patients and their families
cope with illness and treatment recommenda-
tions. Many diagnoses, such as amyotrophic
lateral sclerosis (ALS; also called Lou Geh-
rig’s disease), are very diffi cult for patients to
accept. ALS is a progressive neuromuscular
disease that is very debilitating and ultimately
fatal. A person given an ALS diagnosis may
be depressed, angry, and fearful. A health so-
cial worker is trained to provide counseling
to assist the patient cope with his diagnosis,
provide grief counseling for the losses that he
will experience as a result of his disease, and
encourage him to follow up with medical care
to maximize his quality of life.
In addition, recommended treatment regi-
mens can be diffi cult for patients to follow.
A teenage boy diagnosed with diabetes may
fi nd that the need to test his blood glucose lev-
els several times a day, self-administer insu-
lin shots while at school, and avoid sugar is
very cumbersome. He may choose to not fol-
low medical advice because it confl icts with
his preferred lifestyle. A health social worker
can help him by empathizing with the intru-
siveness of the diabetic treatment regime, pro-
viding supportive counseling, and helping him
fi nd ways to cope with the diffi cult aspects
of his treatment regimen. She also may col-
laborate with the school nurse to explore the
possibility of the boy testing his blood glucose
level and self-administering insulin in her of-
fi ce. This would afford him greater privacy
than if he were to use a public space. Another
lifestyle intervention might include the social
worker discussing with the boy’s parents the
types of food or refreshments served at home
or at parties to ensure that these foods con-
form to his diet. Some children and adoles-
cents face stigma or misunderstanding about
their illness from their peers and classmates,
and in this case the social worker might offer
a class presentation to educate the patient’s
peers about his disease and dispel any myths
or misinformation about diabetes that they
may possess, making them more familiar with
the disease and demystifying the boy’s unique
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26 Foundations of Social Work in Health Care
diet requirements and need for insulin injec-
tions during the school day.
For older adults, social workers in health
care are able to provide couples and family
counseling. A couple grieving over the death
of their newborn daughter may see the hos-
pital social worker for grief counseling. The
social worker may work with an entire fam-
ily to discuss their adjustment after a father’s
leg amputation. Likewise, interventions re-
lated to end-of-life care often require family
conferences and intervention using a range of
theory- and evidence-based intervention strat-
egies. Health social workers often run sup-
port groups for patients and their families to
provide education and support on a variety of
health issues.
Health social workers may see patients re-
ferred by other professionals. Patients may be
referred because of psychosocial issues that
represent a barrier to effective treatment. For
example, a hospital social worker may not
see all patients who come to the emergency
room but will be called to assess and provide
services to victims of sexual assault or family
violence or refer these victims to appropriate
services. A social worker employed in a pri-
mary care setting may be asked to work only
with patients and families who have identifi ed
psychosocial needs, such as problems coping
with vision loss that preclude follow-up with
recommended referrals or a lack of insurance
to pay for needed medications. Likewise, a so-
cial worker employed by a hospital emergency
department may be asked to work with a pa-
tient who comes to the department frequently
for what essentially are primary-care needs.
The referral might be to assess barriers to re-
ceiving and using preventive care and refer the
patient for community services.
Conversely, some social workers see every
patient who passes through their particular
setting. For instance, transplant social work-
ers evaluate the psychosocial issues that af-
fect every patient in need of a transplant.
The goal of the evaluation is to help the team
decide if the patient should be accepted into
the program. The social worker addresses the
psychosocial issues that might interfere with a
successful transplant and that must be resolved
before a patient is scheduled for transplant sur-
gery. Case management services are provided
by social workers to patients while they are
being worked up for transplant. Such services
include referrals for community resources, fi –
nancial counseling, and family and caregiver
preparation and education for their posttrans-
plant caregiving roles.
A common phenomenon in health social
work practice is having patients, their families,
and community members actively participate
on health teams or act as advisors to programs
and research. Underlying this trend is the idea
that patients have a voice equal to that of pro-
fessionals in their health-care planning and
health research. The Center for Interdisciplinary
Health Disparities Research at the University of
Chicago, led by Sarah Gehlert, PhD, MSW, is
part of a multisite federal program to develop
centers for the study of population health and
health disparities. Each project includes com-
munity members as stakeholders along with
scientifi c investigators with specialties in the
biological, social, and psychological aspects of
health. Gehlert’s team conducted 49 intensive
focus groups with 503 community residents
to determine community beliefs, concerns,
and attitudes about breast cancer and its treat-
ment. Social workers in clinical, administrative,
and research roles are instrumental in help-
ing health-care teams incorporate community
members and consumers in planning and serve
as advocates for them throughout the process.
On a health-care team or in an administra-
tive role, social workers ensure that the social
context of health is addressed in patient care
and program planning. Miller and Rehr (1983)
refer to social workers in health care as media-
tors between the health-care system and con-
sumers. This work also involves advocating
at the systems level for improvements in the
delivery of care.
Social Work as Part of the Design
of Health Care
The profession of social work has a dual
focus on enhancing the social functioning of
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Social Work Roles and Health-Care Settings 27
individuals and the responses of social insti-
tutions to human needs (Dhooper, 1994). A
wide variety of health social work tasks exist
in nondirect patient-care settings, such as
community, university-based, and government
agencies. These tasks might include public
health social work, policy development, pro-
gram planning, community education and
screening, or research. In these macrolevel
settings, social workers collaborate with other
professionals and with policy makers, elected
offi cials, and university faculty, administra-
tors, and community members.
Health social workers design and imple-
ment community health programs and initia-
tives. For example, a social worker may work
on a team that is planning a program to im-
prove prenatal care. The social worker must
then ensure that psychosocial barriers to pre-
natal care, such as a lack of child care at a
prenatal clinic, are addressed as part of the ini-
tiative. Social workers also may provide edu-
cation to individuals, groups, and communities
on different health issues. Health social work-
ers are involved in preventive services, such as
health screening and immunizations. They can
help identify individuals in need of services
and providing linkages to such services via
outreach programs. (See Box 2.3.)
At an even broader level, many social work-
ers are involved in research that directly and
indirectly infl uences policy, community and
public health, and clinical practice. Routinely
health social workers perform quality assur-
ance and outcome measurement on the ser-
vices they provide to track psychosocial issues
and the impact of social work intervention on
alleviating these issues. Social workers also
perform research at the community or univer-
sity level with individuals and communities,
or as it relates to health-care issues in general.
For example, Caroline Jennette, MSW, is
a social work research specialist at the Uni-
versity of North Carolina Kidney Center. The
mission of the Kidney Center is to reduce
the burden of chronic kidney disease through
research, clinical care, and community out-
reach. Jennette maintains a variety of roles
in her position, including study coordination,
community education, and conducting re-
search on health policy and state policy diffu-
sion. She also acts as the legislative liaison for
the Kidney Center and keeps her colleagues
current on policy issues affecting the nephrol-
ogy community and patient access to care.
Jennette coordinates a large research registry
of patients with glomerular disease and en-
sures that investigators abide by the rules gov-
erning ethical practice of research with human
subjects. She is a member of the American So-
ciety of Nephrology’s KidneyNews editorial
Box 2.3 Health Social Work Profi le
Rose Popovich, MSW, LCSW, is the
2001 recipient of the Ida M. Cannon
Award for Distinguished Leadership
from the Society for Social Work
Leadership in Health Care. She is the
executive director of the performance
improvement program for Community
Health Network in Indianapolis, IN.
The network consists of fi ve acute care
hospitals, outpatient surgery centers,
a home care agency, a rehabilitation
center, integrated physician services, a
family medicine residency, outpatient
clinics in schools, wellness services for
employers, as well as other services.
Her team applies the methodologies of
performance improvement to a variety
of issues confronting the system from
throughput to electronic order entry,
patient falls, frequent emergency room
patient visitors, physician credentialing
processes—anything and everything, both
administrative and clinical. Popovich
says that her social work background is
essential to the creation of the community
health program she oversees in that it
helps her to better understand the needs
of the population served. Her social
work background also was essential to
understand and assess customer needs,
helping teams defi ne their goals and
metrics and facilitating the change
process.
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28 Foundations of Social Work in Health Care
board, of which she is a regular contributor
of policy articles. A typical day for Jennette
may include consulting with an investigator
on a research project, scanning for policies in
sessions pertaining to kidney disease, editing
patient education materials, going over in-
formed consent with a participant for inclu-
sion in a research registry, and working on an
independent research project.
Social workers have an active voice in
large funding organizations such as the Na-
tional Institutes of Health (NIH) and make
sure that psychosocially relevant research is
conducted. Many social work scholars have
received funding from the NIH for health
research, and social work research has been
made a priority at NIH. In 2003, NIH cre-
ated a social work research working group
to promote NIH-funded social work research
(see http://obssr.od.nih.gov/pdf/SWR_Report
for more details). Since then, several
NIH institutes have promoted social work
research funding and conducted an NIH sum-
mer training course on topics of interest to
social workers and others (such as genet-
ics and community-based participatory re-
search). Organizations such as the Society for
Social Work Research and the Social Work
Policy Institute provide information and re-
sources for social workers who are interested
in health research.
SURVEY OF SOCIAL WORK
PROFESSIONALS
Social workers’ roles are diverse and aspire to
achieve total patient health as well as to pro-
vide community and public service to bring
about positive health status on a larger scale.
Social workers entering the fi eld today have
innumerable opportunities to affect the qual-
ity of individual patients’ lives, the health of
myriad communities, and the fi eld in general.
To illustrate the many and varied responsibili-
ties and opportunities with which social work-
ers are faced as they prepare to enter the fi eld
today, consider actual professionals currently
contributing to the fi eld.
Case Management and
Patient Advocacy
In her former role as a hospital social worker at
MedCenter One Health Systems in Bismarck,
ND, Jennifer Schlinger, MSW, LCSW, primar-
ily worked in the rehabilitation department,
collaborating daily with physicians, physical
and occupational therapists, dietitians, nurses,
and other professionals. Although most of her
patients were adults, she occasionally worked
with pediatric patients and provided services to
all individuals who were admitted to the reha-
bilitation department. Patient stays are limited
to 6 weeks while patients receive medical
treatment and are assisted with recuperation
surgery or medical crises. Schlinger performed
case management activities on a daily basis,
helping patients plan their discharge and ar-
range follow-up care. This was particularly
challenging for patients living in rural areas
of the state in which no local home health or
other health-care services are available. Sch-
linger spent a great deal of time advocating
for patients, especially those on Medicaid who
are burdened with an annual 30-day limit for
rehabilitation services. Schlinger helped pa-
tients obtain entitlements, access community
resources, and create and nurture social sup-
port systems. She acted as a liaison between
patients and the medical team as well as com-
munity organizations. Schlinger currently
works as a civilian social worker/case manager
with the North Dakota Army National Guard.
She works with soldiers to ensure that they are
medically ready to deploy and meet retention
standards. She serves as a liaison between the
soldier and the state medical detachment phy-
sicians and the soldier’s unit.
Health social workers also may serve as
supervisors in their practice settings by pro-
viding clinical supervision, or they may hold
a position as a liaison between the department
of social work and the administration of the
agency or organization for which they work.
Sharon Mass, PhD, MSW, is the director of
case management and palliative care at Cedars-
Sinai Medical Center in Los Angeles. In
this position she oversees a cross-disciplinary
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http://obssr.od.nih.gov/pdf/SWR_Report
http://obssr.od.nih.gov/pdf/SWR_Report
Social Work Roles and Health-Care Settings 29
group of over 120 staff members (50 social
workers, 35 nurse case managers, 8 home care
coordinators, 3 physicians, 2 advanced prac-
tice nurses, 6 administrative support staff, and
other per diem staff). She is president-elect
of the American Case Management Associa-
tion, an organization of 3,000 nurses and so-
cial workers who provide case management in
acute-care hospital settings. She is a founding
member of the board of directors of the Ameri-
can Case Management Association. Mass has
published in the areas of case management and
end-of-life care. She is an adjunct professor at
the School of Social Work at the University
of Southern California and has received many
awards for her work in social work in health
care. Mass attends daily administrative and
medical staff meetings about health-care deliv-
ery in which she advocates for patients from
the social work and case management services
departments. She provides supervision for so-
cial work licensure and guides social workers’
professional development at the hospital. She
also is active in committees on patients’ rights
and is a member of the institutional review
board.
Assessment of Need: The First Step
of Care
Some social workers in health care see all
patients in the clinical settings in which they
work. Jeff Harder, MSW, LICSW, is a trans-
plant social worker at the University of Wash-
ington Medical Center in Seattle. In his work
with the kidney and pancreas transplant pro-
gram, Harder conducts psychosocial evalua-
tions on all patients referred for a kidney or
pancreas transplant. Harder assists patients
and their caregivers with fi nding needed re-
sources, such as local housing for follow-up
outpatient care after transplant, if necessary.
He provides counseling, education on what to
expect after a transplant, and discharge plan-
ning. Harder assists patients and their families
with coping, information, referrals, assessment
of further needs, and vocational rehabilitation.
He continues to assist patients who previously
received transplants when they lose insurance
coverage or have questions about returning to
work.
Needs-Based Care: Assisting the
Client in Need
Some health social workers see only those pa-
tients in their health-care setting who require
their services. In addition, other health social
workers may work on a freelance basis. For
example, Mary Raymer, MSW, ACSW, is a
psychiatric social worker and licensed mar-
riage and family therapist who has worked
with terminally ill patients and their families
for 25 years. An early hospice leader, she was
the social work section leader for the National
Hospice and Palliative Care Organization and
is one of the originators of the Social Work
End-of-Life Education Project. She has her
own private practice and specializes in com-
plicated grief reactions, stress, and terminal
illness. The majority of her practice involves
counseling individuals and families who are
coping with grief.
Public Health Social Work
Marvin R. Hutchinson, MSW, LISWAP, CP,
is the recently retired director of public health
social work for the South Carolina Department
of Health. He participated regularly in legisla-
tive, policy, and program meetings (ensuring a
psychosocial emphasis to the proceedings) and
oversaw the public health social work program.
His staff included regional public health social
work directors and state program public health
social work consultants with whom he worked
to develop new initiatives for more than 225
master’s-level public health social workers.
These social workers are employed in clinical,
community, and management positions across
the state in programs such as maternal health,
child health, family planning, tuberculosis
treatment, school health, children’s rehabilita-
tive services, AIDS, and home health services.
Hutchinson taught at the College of Social
Work of the University of South Carolina. He
directed violence and suicide prevention initia-
tives and oversaw the MSW/master’s in public
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30 Foundations of Social Work in Health Care
health internship program. He presented work-
shops and papers to interagency staff as well
as to audiences at state, regional, national,
and international conferences. In addition,
Hutchinson serves on national-level commit-
tees (representing the Association of State and
Territorial Public Health Social Workers, the
National Council on Aging, the Public Health
Foundation, and the National Association of
Social Workers) and legislative committees re-
garding issues such as school health, violence,
systems, and integration. He received recog-
nition from the Surgeon General for public
health services and is the 2005 South Carolina
NASW Social Worker of the Year.
Multilevel Intervention:
Diversifying Responsibility
Social workers can intervene both on an in-
dividual and a systems level in health care.
Patricia Ann Gibson, MSW, ACSW, is direc-
tor of the Comprehensive Epilepsy Program at
the Wake Forest University School of Medi-
cine in North Carolina. She is involved in nu-
merous organizations, including the American
Epilepsy Society, the Epilepsy Foundation, the
International Bureau of Epilepsy, and Interna-
tional Epilepsy Congress. Gibson also is on
the professional advisory board of the National
Tuberous Sclerosis Alliance and has authored
numerous publications for patients and profes-
sionals. In 1976, she developed and continues
to run a nationwide telephone information line
for epilepsy. She speaks with patients and their
families about their concerns. After learning
of parents’ inability to afford their children’s
medicine, she spent 8 years developing an
epilepsy medication fund for the state of North
Carolina and supplements this fund with a va-
riety of fundraising efforts (including a chili
cook-off, yard sales, and offering snacks at her
offi ce for donations). Gibson sees patients for
education as well as individual, family, and
group counseling. Much of her time is spent
speaking and conducting workshops, confer-
ences, and symposia. These include educa-
tion on epilepsy for primary and secondary
schools, parents, physicians, nurses, medical
students, hospitals, and community organi-
zations. She also organizes several national
conferences, such as Advances in the Man-
agement of Epilepsy, the Pediatric Neurology
Symposium, and the International Conference
on Epilepsy Care. In these trainings, she pres-
ents a transdisciplinary approach to the treat-
ment of epilepsy.
John Q. Gowan, MSW, is the coordinator
of consumer relations and community de-
velopment for the End-Stage Renal Disease
(ESRD) Network 7 of Florida and is another
example of a health social worker involved in
direct patient- and community-level service. A
major part of his job is organizing and present-
ing workshops for dialysis unit staff members
about challenging patient situations and in-
creasing staff sensitivity to patient needs. At
the ESRD Network, Gowan also provides as-
sistance to renal patients and their families, as-
sists with rehabilitation promotion for ESRD
patients, and facilitates the state’s Patient Ad-
visory Committee, which addresses dialysis
patient concerns and encourages patient in-
volvement in their care.
Administration and Social Work
in the Design of Health Care
Social workers play an important role in the
design of health-care delivery through admin-
istrative roles in clinical settings, overseeing
both social workers and other professionals.
Polly Jones, MSW, MSM, LCSW, CPHQ, is
the director of clinical excellence for Ascen-
sion Health in Burlington, IN. She is respon-
sible for the coordination of accreditation
activities for the more than 70 Ascension
hospitals, including educational initiatives,
individual consultations, and quality im-
provement activities, and for facilitating the
Joint Commission on Accreditation of Health
Care Organizations system survey each year.
She also oversees programming and projects
for all of the hospitals. In these capacities, she
advocates for the social work profession by
encouraging social work involvement in activ-
ities, programs, and teams at a local level. On
a daily basis, she travels to different hospitals
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Social Work Roles and Health-Care Settings 31
across the country to work with transdisci-
plinary teams on various projects. As a project
manager, she facilitates team interaction and
promotes improved patient outcomes. She re-
ports that her social work training is invaluable
as it relates to knowledge of group dynamics,
change theory, and how systems work. Jones
frequently publishes and speaks about various
topics related to health social work and was
the 2005 president of the Society of Social
Work Leadership in Healthcare. As president
of this organization, she networked with social
work leaders across the country to provide ed-
ucation, advocacy, and other support to social
workers in myriad health-care settings.
Filling the Health-Care Void: Social
Work’s Myriad Responsibilities
Social workers sometimes have health-care–
specifi c responsibilities. Others, however, are
responsible for a variety of roles within the
setting in which they work. Douglas Kirk,
MSSW, LCSW, for example, is the program
director for mental health intensive case man-
agement at the Veterans Hospital in Madison,
WI. He works with veterans at the hospital
who require intensive mental health case man-
agement. In describing his various tasks in this
role, Kirk stated:
On any one day, I might be in with a client
in a medical examination for hepatitis, help-
ing both the physician understand the patient
(not all doctors have patience for the men-
tally ill) and the patient to understand the
doctor. I might then be on the phone with the
district attorney [DA] advocating for proba-
tion rather than jail, helping the DA under-
stand that jail may be counterproductive for
this mentally ill person or explaining to the
group home how to care for the edema in this
man’s legs. Later that day, I might be show-
ing someone else how to operate a washing
machine and observing him to see if the re-
cent increase in medication has resulted in
any side effects. While doing the wash, we
might discuss how to cope with his voices.
Afterward, we may rework his budget to re-
fl ect his wish to have more money for fun
on the weekends. Later that day, I might be
meeting with the family of a patient who are
trying their best but instead are enabling the
patient to be stuck and not move forward. I
help them see that their son has skills and
strengths and is more than his mental illness.
I might take that patient to the store to teach
him how to shop more independently and eat
more nutritiously. Earlier I cleaned diarrhea
off the fl oor for a dehydrated person who
lives alone, hugged another who is having a
particularly lonely day, and spent time with a
very psychotic person who has exercised his
right to decline medication but is suffering
as a result. (personal communication, March
25, 2005)
In treating each individual case, Kirk is
faced with an unusual collection of responsi-
bilities that fall under his area of expertise as a
health social worker. In this role, he must work
multilaterally in order to provide the best care
for his patients, addressing microlevel needs
for one patient and macrolevel issues in order
to ensure that another is treated appropriately
and in his or her best interest.
Dawn Romano, MSW, LMSW, LCSW,
is a clinical social work supervisor at Chil-
dren’s Mercy Hospitals and Clinics in Kan-
sas City, MO. She is another example of a
social worker who performs a multitude of
tasks. Her daily clinical responsibilities in-
clude crisis intervention, child abuse and
neglect assessment, and trauma counseling
to patients and families. As a supervisor, she
oversees the hospital’s social workers, pro-
viding child abuse orientation and clinical
supervision. She serves on a variety of com-
mittees, including the trauma and domestic
violence committees. The majority of her
work centers on child abuse and neglect as-
sessments, and she meets with children and
families to complete psychosocial assess-
ments for child abuse and neglect. Work-
ing closely with her team, she completes
hotline reports and works with the child
protection services agencies to assess the
immediate safety of children. She advises
law enforcement offi cials on the reporting
and investigation of child abuse and neglect,
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32 Foundations of Social Work in Health Care
provides support and education to families,
and connects families to community sup-
port services. She provides case manage-
ment services and is a part of the trauma and
hospital emergency response teams. She is
the social worker representative on a team
including a chaplain and nursing supervisor
that provides crisis intervention, education,
emotional support, and grief counseling to
families whose children have been injured in
motor vehicle accidents, shootings, drown-
ings, falls, suicides, and other tragedies.
COLLABORATING WITH
OTHER PROFESSIONALS
In the various health settings described, social
workers are called on to collaborate with other
health-care professionals. Social workers may
work on teams that are multidisciplinary (each
professional works autonomously with little
interaction), interdisciplinary (professionals
interact with one another to provide services
but maintain clear professional boundaries
dictated by distinct terminology and interven-
tive preferences), or, ideally, transdisciplinary
(close collaboration among the professionals,
including sharing a common language and ap-
proach to programming and intervention plan-
ning).
The level of collaboration within a team is
specifi c to individual health settings and their
norms and practices. At one end of the spec-
trum, collaborating with other professionals
might occur indirectly. For example, physi-
cians may read social work notes in a patient’s
chart yet never discuss the patient’s care di-
rectly with the social worker. Social workers
may be employed at health settings on a per
diem or consultant basis and not be active
members of teams. At the other extreme, pro-
fessionals may work directly with one another
on a daily basis, confer frequently about pa-
tient issues, visit patients as a team, and make
all care planning decisions based on group
meetings and group feedback, with all mem-
bers having an equal voice in the process.
Challenges to Professional
Collaboration
Professional collaboration can be challenging
in a health setting. Even if the team interacts
frequently, professionals may not have equal
voices in the care planning process, profes-
sional roles may not be clear, and professional
perspectives and ethics may clash. The execu-
tion of team collaboration varies signifi cantly.
At care planning meetings, the social worker
may be a passive observer and not encouraged
to participate unless necessary. Alternatively,
social workers may organize and run such
meetings.
Workplace change represents a signifi cant
challenge to health social workers. Health-care
provision increasingly is focused on reducing
costs and decreasing hospital stays. Profes-
sional departments, including counseling ser-
vices and community education, have been
reduced in size or eliminated (Sulman, Savage,
& Way, 2001). Another challenge to health so-
cial work is the co-opting by other professions
of tasks that historically have fallen under the
rubric of social work. This is notably true in
case management, with nurses and other profes-
sionals performing case management activities.
Hospital social work departments are being re-
placed by nurse-led case management depart-
ments, and nursing professionals increasingly
are supervising health social workers (Alveo,
2001; Globerman, White, & McDonald, 2003).
In a study of discharge planners, Holliman,
Dziegielewski, and Teare (2003) found that
nurse case managers are paid more than so-
cial work case managers. The authors found
that private hospitals were more likely to hire
nurses as discharge planners, although federal
and state hospitals were more likely to hire so-
cial workers as discharge planners.
Collaboration may be hampered by am-
biguity of roles and tasks, and different dis-
ciplines may not understand one another’s
lexicon and procedures. Health professionals
have unique training, education, and perspec-
tives toward practice. Physicians, nurses, and
social workers (along with the other members
of the transdisciplinary team) view and frame
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Social Work Roles and Health-Care Settings 33
patient problems and their solutions to those
problems through separate lenses. Carlton
(1984) wrote: “[S]ocial work is a profession
whose purpose, logic, and underlying ratio-
nale differ from those of other professions”
(p. xiii). Rolland (1994) asserts:
Clinicians from different disciplines bring
their own assets and liabilities to the interac-
tion of family and illness and disability. Phy-
sicians and nurses have a surplus of technical
medical information. They can have trouble
seeing the psychosocial forest through the
technological lens they need to use to help
the patient medically. And if they can switch
lenses, often they have trouble deciding
which trees in the medical forest are psycho-
socially important. They may have diffi culty
taking the 1,001 facts about diabetes and dis-
tilling from them the essence of the psycho-
social meaning of the disorder. (pp. 20–21)
Social workers are both trained and ethically
obligated to advocate for their patients. This
may lead to interprofessional strain because
other professionals may be annoyed by patient
and family behavior that does not fi t neatly with
the policies and procedures of health-care agen-
cies or institutions. Physicians and nurses may
get frustrated with the parents of an infant in
an intensive care nursery who visit only late at
night. They may view the parents as negligent
because they do not spend the entire day with
the ill child and awaken the baby when they do
visit. While empathizing with the staff’s need
to cope with visitation beyond the “normal”
visiting hours, the social worker can inform the
team about the parents’ work schedules that
preclude daytime visits. The social worker also
can advocate for these parents, pointing out that
despite working during the day, the parents visit
every day, spending several hours with the in-
fant, and are indeed very devoted parents. So-
cial work advocacy also can play a role when
issues arise regarding nontraditional families.
In situations in which the medical team does
not view a same-sex partner as legitimate, so-
cial workers can advocate for inclusion of such
partners in care planning.
Health Social Work Recommendations
Many recommendations can be made to maxi-
mize health team collaboration. Professional
differences in health settings can be reframed
as assets rather than liabilities. A biopsycho-
social model of health requires the perspec-
tives of a number of professionals to most
effectively deliver health services. In terms of
training transdisciplinary health profession-
als, Headrick and Khaleel (2008) suggest that
students should be offered a curriculum that
integrates theory and practice content from
each discipline and that students should have
interprofessional learning and training op-
portunities. An example of a transdisciplinary
education model is the Institute for Healthcare
Improvement’s Open School, which offers
students from social work, medicine, nurs-
ing, pharmacy, physical therapy, public health,
dentistry, and other schools transdisciplinary
learning opportunities online and at chapter
meetings across the country (see www.ihi.org/
ihi for more details).
Cowles (2003, p. 21) lists specifi c objec-
tives that are essential to maximal team col-
laboration:
• Role clarity and fl exibility
• Mutual respect and trust
• Consensus on group norms, values, com-
mitment, and purpose
• An egalitarian attitude; a sense of equal im-
portance
• A sense of group bond and interdependence
rather than autonomy
• Open communication and sharing
• Flexible leadership and decision making;
shared power
• Flexible membership composition based on
case needs
• A stable core membership
• A sense of both group and professional
identity
• Ability to negotiate and reach consensus
• Goal focus and goal clarity
• Record keeping of meetings
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http://www.ihi.org/ihi
http://www.ihi.org/ihi
34 Foundations of Social Work in Health Care
• Attention to both the task and maintenance
functions of the team
• A systems perspective
Health social workers need to remember
that clients do not normally present to the
health-care system for social work services
specifi cally; rather, they present with medical
needs that have psychosocial components. As
such, it is the social worker’s responsibility to
be familiar with the biological aspects of the
biopsychosocial care model. Social workers
should enhance their understanding of medical
issues and terminology so that they are knowl-
edgeable when talking to patients and their
families and can participate fully on health-
care teams.
Bronstein (2003) suggests a model of trans-
disciplinary collaboration grounded in the
frameworks of collaboration theory, role the-
ory, and ecological systems theory. Bronstein’s
model proposes that transdisciplinary teams
should include interdependence of the individ-
ual team members, newly created professional
activities, fl exibility, collective ownership of
goals, and process refl ection. In this model,
interdependence refers to frequent communi-
cation, interaction, and mutual respect among
team members. Newly created professional
activities represent collaborative opportunities
that take advantage of team members’ indi-
vidual expertise to achieve team outcomes that
would be diffi cult to accomplish if team mem-
bers worked alone.
Health social workers can support and re-
inforce other team members’ roles rather than
engage in turf wars and provide staff education
on psychosocial issues to other team mem-
bers (Nason & Delbanco, 1976). Globerman,
White, Mullings, and Davies (2003) recom-
mend that social workers minimize role con-
fl ict with other members of the health team
by proactively defi ning and promoting their
unique roles and tasks, continuously updating
their knowledge base related to the relevant
practice area, and acknowledging the exper-
tise of other professionals. They also advise
that social workers evaluate and track the im-
pact of their services. Doing this allows social
workers to identify areas in which they spe-
cialize, establish a niche on the team, and show
the effectiveness of their unique contribution
to health care. Social workers should play an
active role on quality assurance or continuous
quality improvement committees.
As Kayser, Hansen, and Groves (1995) state:
[T]o obtain resources and the commitment
from hospital administrations to provide
comprehensive services, social work depart-
ments need to continually collect the data
that substantiates that they are the profes-
sionals best trained for such responsibilities
and can deliver the services in the most cost-
effective manner. (p. 498)
This is particularly true in the era of managed
care, for which medical spending is limited
and cost containment is mandated by health
organizations (Segal, 2002). If social work-
ers can show that they reduce medical costs
by reducing hospital stays, increasing patient
satisfaction and quality of life, and reducing
morbidity and mortality, they can maintain
their presence in health organizations. Social
workers also need to equip themselves with
the skills to intervene effectively with patients
on a short-term or ad hoc basis.
Simmons (1989) reviewed the fi scal advan-
tage of social work services in health-care set-
tings and noted that social workers conserve
institutional resources in several ways. They
link patients with insurance and resources and
thus increase reimbursement, reduce hospital
stays through effective discharge planning and
linkages to outpatient resources, increase ser-
vice provision through outreach and program
planning and mediating confl icts between pa-
tients and providers, enhance revenue through
the creation of new programs and services, and
improve the productivity of the medical team
by participating in employee assistance pro-
grams that support team members.
Health social workers also must advocate
for themselves as active members of health
teams. Lee (2002) and Globerman (1999)
recommend that health social workers cre-
ate literature that informs other professionals
and consumers about the role of health social
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Social Work Roles and Health-Care Settings 35
workers, provide team training about the social
work activities and roles, provide evidence
of the effectiveness of social work services,
and be visible parts of health settings by vol-
unteering to be part of task forces and com-
mittees. Social workers must document their
interventions with patients and their families.
Brief, quickly completed forms may suffi ce to
achieve this aim if social workers are burdened
by large caseloads and time constraints.
Changes in health-care delivery and or-
ganizational constraints affect all members
of the health team. Just as they help cli-
ents cope with illness, its treatment, and the
changes that illness entails, social workers
can use those skills to help the health-care
team adapt to hospital and program restruc-
turing (Globerman, 1999). Social workers
can provide professional support to their
colleagues when they face challenging pa-
tient situations, such as when patients die
(Roberts, 1989). These efforts allow health
social workers to help minimize role confl ict
with other team members as well as demon-
strate that social work is effective.
TREATING THE WHOLE
PERSON: SOCIAL WORK’S
PRIMARY ROLE
Health social workers fi ll various roles, work
in myriad settings, and perform a broad collec-
tion of tasks on the clinical and administrative
levels. Social work fulfi lls a critical function
in the biopsychosocial approach to health care.
As Romano (1981) wrote:
[S]ocial work occupies a unique position
in that it has its feet in health and mental
health, its hands in the social sciences, its
viscera in clinical intervention skills, and its
head and heart in a commitment to the issues
of the quality of life of disabled persons in
society. (p. 15)
Although fi scal, organizational, and profes-
sional challenges exist in providing health
services that fully incorporate the biologi-
cal, social, and psychological determinants
of health, social work is a vital component
to health teams to explain and signifi cantly
affect the complex pathways through which
variables at different levels infl uence health
(Keefl er, Duder, & Lechman, 2001).
SUGGESTED LEARNING
EXERCISES
Learning Exercise 2.1
As a group, compile a list of questions to ask a
health social worker based on what you learned
in this chapter. You may want to ask about the
social worker’s role or roles, tasks, and ethical
challenges as well as if the social worker is
part of an transdisciplinary health-care team.
Find a health social worker in your commu-
nity and arrange an individual interview, using
the list of questions your group creates for this
exercise. Be sure that your group interviews
social workers working in a variety of health-
care settings, including those who work with
individuals and families and those who work
on a community level or in a research institu-
tion. Either by an oral presentation or a written
synopsis, report back to the group the informa-
tion that you obtain.
Learning Exercise 2.2
Using the profi les of health social workers
throughout this chapter and information that
your group gathers from the interviews in Ex-
ercise 2.1, compare and contrast the different
roles in health-care settings. What is it exactly
that health social workers do? How are the
roles in different settings similar? How are
they different? What types of transdisciplinary
teams and ethical challenges do different so-
cial workers encounter? What are the differ-
ences and similarities between clinical health
social workers and those who work in an ad-
ministrative or policy-level capacity?
Learning Exercise 2.3
Using information from this chapter and the
interviews from Learning Exercise 2.1, discuss
the differences between social workers and the
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36 Foundations of Social Work in Health Care
other members of the health-care team. What
are some fundamental differences? What does
social work uniquely bring to the care of pa-
tients? What are differences in the codes of
ethics of different professions? How can these
differences manifest themselves in health set-
tings at various levels? What are some ex-
amples of professional challenges or clashes?
How can social workers collaborate most ef-
fectively with other professionals on a team-,
agency-, and policy-level setting? How might
you as a health social worker make a case for
why social work, social services, case manage-
ment, or patient education is your domain and
not that of another discipline? (You also may
incorporate content from Chapter 1 and so-
cial work history course(s) in answering these
questions.)
Learning Exercise 2.4
Richard is a 38-year-old, married African
American male who previously was diagnosed
with type 1 diabetes. Recently, Richard was
diagnosed with kidney failure. He is married
with three children, ages 5, 10, and 12, and
just started a job as an electrician. Richard is
an only child and has limited social support
network members. Although his wife is an ac-
tive member of a Baptist church, Richard does
not consider himself to be religious and does
not attend church services with his family. He
is the sole income provider for his family. Be-
cause Richard is in a probationary period for
his new job, he will not qualify for employee
group health insurance for two more months
and thus cannot miss a day of work without
risking termination. Richard’s health problems
and new job have caused him a signifi cant
amount of stress and increased marital discord.
This is exacerbated by long work days and fre-
quent overtime work. Richard’s acute kidney
failure condition has progressed to the point at
which he will have to start dialysis, and he has
been referred to a kidney transplant program
for an evaluation by the transdisciplinary team
that includes a transplant social worker. The
team will interview Richard and determine if
he is a candidate for a kidney transplant.
As mentioned in this chapter, psychosocial
barriers can impact whether a patient will be
considered for a transplant. Considering the
biopsychosocial approach, identify factors
that the transplant social worker may consider
when assessing Richard. If possible, role-play
a screening assessment of Richard with another
member of your group. (This can be done by
several dyads of group members.) Discuss as
a group what items should be included in this
social work assessment and why. Should the
social worker recommend that Richard receive
a kidney transplant, based on his biopsycho-
social assessment? What are the benefi ts of a
transdisciplinary approach in the kidney trans-
plant center?
Learning Exercise 2.5
Using information from this and other chapters
in this book, pick a setting that may employ a
health social worker. Create a brochure or hand-
out for clients or customers of that setting that
describes the role of the social worker in that
organization. Be sure to include information
about the different services and tasks that the
social worker is responsible for in that setting.
SUGGESTED RESOURCES
The National Association of Social Work
(www.socialworkers.org) has numerous re-
sources for health social work, including a
health specialty practice section, social work
summits that include health social work or-
ganizations, continuing education modules
(available online) regarding social work and
various health-care settings (such as oncology
and end of life), and social work clinical indi-
cators for various health settings.
Additional Resources for Social Workers
American Case Management Association—
www.acmaweb.org
The goal of the American Case
Management Association is to pro-
vide the highest quality professional
developmental services such as mentor-
ing, resource information, educational
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http://www.socialworkers.org
http://www.acmaweb.org
Social Work Roles and Health-Care Settings 37
forums, and new opportunities for net-
working.
American Lung Association—www.lungusa
.org
The American Lung Association is
the leading organization working to save
lives by preventing lung disease and im-
proving lung health through education,
advocacy, and research. The main goals
of the organization are to stop tobacco
use and tobacco-related lung disease,
improve the air we breathe, and reduce
the burden of lung disease on patients
and their families.
American Network of Home Health
Care Social Workers—www.homehealth
socialwork.org
This network is a professional asso-
ciation organized for the benefi t of so-
cial workers in health-care settings. Its
Web site has an abundance of resources
related to health-care issues.
American Public Health Association—
www.apha.org
The American Public Health Asso-
ciation is made up of and represents a
diverse group of health professionals
and others who are concerned about
their health or the health of their com-
munities. The association aims to protect
families and communities from prevent-
able, serious health threats and to ensure
accessible education within the commu-
nity regarding health services and dis-
ease prevention.
Association of Oncology Social Work—
www.aosw.org
The Association of Oncology Social
Work (AOSW) is a not-for-profi t organi-
zation geared toward improving the psy-
chosocial services of clients with cancer
and their families. AOSW strives to im-
prove services through education, advo-
cacy, networking, research, and resource
development.
Association of Pediatric Oncology Social
Workers—www.aposw.org
The mission of the Association of
Pediatric Oncology Social Workers is to
enhance pediatric psychosocial oncol-
ogy care through clinical social work
practice, advocacy, research, education,
and program development. Some of their
goals include advocating for both na-
tional and international policies that will
improve the lives of children with cancer
and their families as well as promote the
ethical standards of social workers work-
ing in pediatric oncology.
Association of State and Territorial Public
Health Social Workers—www.astho.org
The Association of State and Ter-
ritorial Public Health Social Workers is
a not-for-profi t organization that repre-
sents the public health agencies of the
United States, U.S. territories, the Dis-
trict of Columbia, and its own public
health employees. The agency’s main
focus is to create and infl uence sound
public health policies as well as ensure
excellence in state-based public health
practice.
Council of Nephrology Social Work—
www.kidney.org/professionals/CNSW/
index.cfm
The Council of Nephrology Social
Work works within the National Kidney
Foundation as a professional member-
ship council while also networking with
other agencies, the government, and pri-
vate groups. Its purpose is to aid patients
and their families with the various psy-
chosocial stressors of kidney disease and
to support federal regulations governing
standards of nephrology social work
practice.
Council on Social Work Education—www
.cswe.org
The Council on Social Work Educa-
tion is a partnership of educational and
professional institutions, social welfare
agencies, and individual members. It is
the only recognized accrediting agency
for social work education in the country.
Epilepsy Foundation—www.epilepsyfound
ation.org
The Epilepsy Foundation is a voluntary
agency dedicated solely to the welfare of
JWBT514_ch02.indd 37JWBT514_ch02.indd 37 9/21/11 7:42 PM9/21/11 7:42 PM
http://www.lungusa.org
http://www.homehealthsocialwork.org
http://www.apha.org
http://www.aposw.org
http://www.astho.org
http://www.kidney.org/professionals/CNSW/index.cfm
http://www.epilepsyfoundation.org
http://www.lungusa.org
http://www.homehealthsocialwork.org
http://www.kidney.org/professionals/CNSW/index.cfm
http://www.cswe.org
http://www.cswe.org
http://www.epilepsyfoundation.org
38 Foundations of Social Work in Health Care
patients and their families with epilepsy.
The agency strives to ensure that people
with seizures are able to engage in all life
experiences, to improve how people with
epilepsy are viewed within society, and to
promote research.
National Association of Children’s Hos-
pitals and Related Institutions—www
.childrenshospitals.net
The National Association of Chil-
dren’s Hospitals and Related Institu-
tions is a not-for-profi t agency made up
of children’s hospitals, large pediatric
units in medical centers, and related
health systems. This agency is a voice
for health-care systems and ensures chil-
dren’s access to services and hospitals’
ability to provide services that are needed
by children.
National Association of Perinatal Social
Workers—www.napsw.org
This organization provides support
and a forum to communicate for perina-
tal social workers and the unique situa-
tions in which they work, sharing knowl-
edge as well as ensuring excellence in
social work practice regarding families
and individuals during pregnancy and
the fi rst year of life.
National Hospice and Palliative Care
Organization—www.nhpco.org
This organization is dedicated to en-
hancing end-of-life care and expanding
access to hospice care with the goal of
profoundly improving quality of life for
people dying in the United States and
their families.
National Multiple Sclerosis Society—
www.nationalmssociety.org
The National Multiple Sclerosis
Society helps individuals throughout
the nation fi ght the challenges associ-
ated with living with multiple sclero-
sis (MS). The society funds research
to prevent, treat, and cure MS and
provides advocacy and education for
communities as well as services for
individuals and their families dealing
with MS.
Social Work Policy Institute—www
.socialworkpolicy.org
The Social Work Policy Institute is
a think tank created under the National
Association of Social Workers (NASW).
Their main ideals are to strengthen social
work’s voice in public policy, to educate
policy makers through the collection
and disbursement on the effectiveness
of social work, and to create a forum to
discuss issues in health care and social
service delivery.
Society for Social Work Leadership in
Health Care—www.sswlhc.org
This organization is committed to pro-
moting the universal availability, acces-
sibility, coordination, and effectiveness of
health care in regard to the psychosocial
components of health and illness.
Society for Transplant Social Workers—
www.transplantsocialworker.org/index
.cfm
This organization is dedicated to pro-
moting and ensuring ethical social work
practice and encourage research and
publication on psychosocial issues re-
lated to transplants.
Veterans Health Administration—www1
.va.gov/health
The Veterans Health Administration
serves the needs of U.S. veterans by pro-
viding primary care, specialized care,
and related medical and social support
services.
INTERNATIONAL SOCIAL
WORK ORGANIZATIONS
International Federation of Social Work-
ers—www.ifsw.org
The International Federation of So-
cial Workers is a worldwide organization
striving for social justice, human rights,
and social development through the
growth of social workers, ethical prac-
tices, and the international cooperation
and communication of social workers
and their professional organizations.
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http://www.napsw.org
http://www.nationalmssociety.org
http://www.transplantsocialworker.org/index.cfm
http://www.ifsw.org
http://www.socialworkpolicy.org
http://www.socialworkpolicy.org
http://www.childrenshospitals.net
http://www.childrenshospitals.net
http://www.transplantsocialworker.org/index.cfm
http://www1.va.gov/health
http://www1.va.gov/health
Social Work Roles and Health-Care Settings 39
The countries listed have Web sites for their
national social work organizations.
Asian and Pacifi c Association for Social
Work Education—www.apaswe.info
Australian Association of Social Workers—
www.aasw.asn.au
Austria—www.sozialarbeit.at
Brazilian Congress of Social Workers—
www.cfess.org.br/_ingles/home.php
British Association of Social Workers—
www.basw.co.uk
Canadian Association of Social Workers—
www.casw-acts.ca
Danish Association of Social Workers—
www.socialrdg.dk
Finland Union of Professional Social Work-
ers—www.talentia.fi
France Association of Social Workers—
www.anas.fr
Ghana Association of Social Workers—
www.gasow.org
Hellenic Association of Social Workers—
www.skle.gr
Hong Kong Social Workers Association—
www.hkswa.org.hk/chi
Icelandic Association of Social Workers—
www.felagsradgjof.is
India: National Association of Profes-
sional Social Workers in India—www
.napswionline.org
Irish Association of Social Workers—www
.iasw.ie
Israel Association of Social Workers—
www.socialwork.org.il
Italy—www.assnas.it
Japanese Association of Psychiatric Social
Workers—www.japsw.or.jp
Japanese Association of Social Workers—
www.jasw.jp
Korea Association of Social Workers—
www.welfare.net/site/global/globalEng
.jsp
Kyrgyz Republic: Association of Social
Workers of the Kyrgyz Republic—http://
asw.gratis.kg
Luxembourg—www.anasig.lu
New Zealand: Aotearoa New Zealand As-
sociation of Social Workers—http://
anzasw.org.nz
Portugal—www.apross.pt
Romanian Association for the Promotion of
Social Work—www.fnasr.ro
Singapore Association of Social Workers—
www.sasw.org.sg
Spain—www.cgtrabajosocial.es
Sri Lanka Association of Professional So-
cial Workers—www.slapsw.org/index
.html
Sweden—www.akademssr.se
Swedish Union of Local Government
Offi cers—www.sktf.se/Default.aspx
Switzerland—www.avenirsocial.ch
Social Workers’ Association of Thailand—
www.nontapum.com
Uruguay—www.adasu.org/menu.htm
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41
3
Ethics and Social Work in
Health Care
JARED SPARKS
If this is the best of all possible worlds, what are the others
like?
—Voltaire, 1759
When confronted with the harsh reality of
illness and suffering that existed in the 18th
century, the French author and philosopher
Voltaire expressed his feelings of incredulity
that such conditions were tolerated. Even now,
as the tools of science and technology have ad-
vanced society’s understanding of biology and
the human condition, humankind continues to
feel a sense of astonishment and vulnerability
in the face of unresolved modern health-care
issues and ethical dilemmas.
Today lives are increasingly infl uenced
by human invention even prior to conception
through genetic counseling and intervention.
As a person progresses through each devel-
opmental stage of life, choices must be made
regarding available health options. These can
be especially diffi cult at the end of life.
The purpose of this chapter is to facilitate
discussion and understanding of health social
work ethics in a changing health-care environ-
ment. Toward this end, some of the philosophi-
cal foundations of ethics are reviewed and the
history of social work ethics is discussed, as
are decision making, theoretical frameworks,
and other special topics.
Chapter Objectives
• Discuss the development of social work
ethics, medical ethics, and bioethics within
a historical and cultural context.
• Defi ne ethical terminology and theory as
these relate to the social work code of ethics.
• Outline decision-making models and theo-
retical applications as they relate to social
work ethics in health care.
• Discuss particular ethical issues related to
dual relationships, managed care, and re-
search ethics.
• Outline ethical challenges in the 21st cen-
tury and beyond.
OVERVIEW OF ETHICAL
ISSUES IN SOCIAL WORK
Within each chapter of this book and the con-
comitant practice areas in social work reside
compelling ethical issues and questions. Social
workers play an important role in addressing
these issues and answering these questions.
In health social work, practitioners inform pa-
tients of their treatment and discharge options,
advocate for patients within a transdisciplinary
team, serve on ethics committees, and shape
policy. These experiences provide a unique and
valuable opportunity to gain both a micro- and
macro-level perspective of health social work
ethics. The ability to articulate a position clearly
and effect change depends on understanding
the ethical issues involved. Today more than at
any time in history social workers must have a
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42 Foundations of Social Work in Health Care
working knowledge of ethical dilemmas in
health care and how health social work ethics
may be employed to address these dilemmas.
Social workers and other health-care pro-
fessionals may prefer to think of themselves
discretely as completely homogeneous groups,
each profession holding a unique value system
and set of beliefs. All social workers may have
an idea of what health social work ethics con-
stitute and suggest. In reality, however, not
everyone shares the same concept of exactly
what that may be. The 18th-century French
author Diderot described an appreciation of
differences in understanding from person to
person in his work D’Alembert’s Dream.
For the obvious reason that no two of us are
exactly alike, we never understand exactly and
are never exactly understood. There is always
an element of “more or less”—our speech falls
short of the real sensation or overshoots it. We
realize how much variety there is in people’s
opinions, and “there is a thousand times more
that we don’t notice and fortunately cannot no-
tice” (Diderot, 1769/1976, p. 222).
Diderot reveals some unease in considering
the possibility of understanding exactly how
someone else experiences or interprets a cer-
tain phenomenon. It does seem fortunate that
individuals experience life differently. In the
study of health social work ethics, consensus
may be reached fairly easily. That will not al-
ways be the case, and care should be taken to
respect different opinions.
Throughout the course of a career, most so-
cial workers encounter situations for which no
completely desirable solutions can be found,
because each alternative has its own set of un-
desirable outcomes. Proctor, Morrow-Howell,
and Lott (1993) further defi ne ethical dilem-
mas as situations “when a social worker can-
not adhere to professional values or when
adhering to one ethic requires behaving coun-
ter to another” (p. 166).
Reamer (1987, pp. 801–809) identifi ed
eight areas of importance when considering
ethical dilemmas in social work: (1) confi –
dentiality and privileged communication; (2)
truthfulness; (3) paternalism and self-determi-
nation; (4) laws, policies, and regulation; (5)
whistle-blowing; (6) distributing limited re-
sources; (7) personal and professional values;
and (8) ethical decision making. Some of these
topics are discussed throughout this chapter.
In contemplating ethical dilemmas, the point
of ethical discourse is not necessarily to arrive
at an immutably “right” solution. Value lies in
thoughtful review and discussion. Through the
process of ethics discourse, a more complete
understanding may be reached, and alternative
courses of action may appear; if not, there may
be at the very least an appreciation that what-
ever decision was reached was the result of in-
formed and thoughtful consideration rather than
the singular expressed preference of a party in-
volved in the patient’s care.
Ethics codes provide some direct guidance
for practice. Lowenberg and Dolgoff (1996)
identifi ed four other purposes of codes of
ethics:
1. Protect the public.
2. Protect the profession. (Self-regulation is a
hallmark of a profession and ideally more
effective than governmental involvement.)
3. Prevent internal strife.
4. Protect practitioners from lawsuits. (The ra-
tionale for why a specifi c course of action
was taken provides some defense against
lawsuits.)
Before we discuss individual cases in which
some of the purposes of codes of ethics may be
made clear, we review the philosophic founda-
tion of social work ethics. This review should
not be considered comprehensive. You are en-
couraged to read on your own in this area to
develop a more complete understanding and to
prepare yourself to use the code of ethics in
your social work practice.
ETHICS TERMINOLOGY
AND THEORY
Most social workers do not have formal train-
ing in philosophy as it relates to ethics. Sepa-
rate classes in professional ethics seldom are
JWBT514_ch03.indd 42JWBT514_ch03.indd 42 9/21/11 7:42 PM9/21/11 7:42 PM
Ethics and Social Work in Health Care 43
present in a social work curriculum. In prac-
tice, many social workers will fi nd that their
state social work boards require ongoing ethics
education as a condition of licensure. Formal
training and continuing education help develop
ethical thought and practice in the profession.
However, regardless of how little or how much
of an ethics background social workers have,
when in practice, they frequently engage in
ethical discourse.
A basic understanding of terminology helps
clarify thought and decision making in eth-
ics. The National Association of Social Work
(NASW) code of ethics provides some useful
content. In an effort to supplement this content,
special attention is paid in this chapter to vocab-
ulary in the form of defi nition and distinction.
Words like values, morals, and even ethics often
are used interchangeably, yet their distinctions
are important to social work practice.
Values
A discussion of values is fundamental to the
study of professional ethics. Although they
have specifi c meaning as they relate to social
work ethics, values exist in personal, profes-
sional, and societal contexts. Confusion may
arise from explanations of this notion because
a multitude of defi nitions for the term values
exists depending on the branch of philosophy
or social theorist making reference to it. Fur-
thermore, the term values has been co-opted
by a variety of political infl uences, each claim-
ing to have a more correct grasp of what values
are. Nonetheless, through all this contention,
values have specifi c and signifi cant meaning
in a code of ethics.
The word value is derived from the Latin
word valere, which means “be worthy, be
strong” (Angeles, 1992). The Harper Col-
lins Dictionary of Philosophy defi nes value
as “worth; the quality of a thing that makes it
desirable, desired, useful, or an object of in-
terest,” as well as “of excellence; that which
is esteemed, prized or regarded highly, or as
a good.” As value relates to human behavior,
Rokeach (1973) provided this defi nition: “an
enduring belief that a specifi c mode or end
state of existence is personally or socially pref-
erable to an opposite or converse mode or end
state of existence” (p. 23). Values serve as ide-
als of what is right. Within professions, values
constitute what is unique and good that sets
one profession apart from others.
As a profession, social work holds these
core values: service, social justice, dignity and
worth of the person, importance of human re-
lationships, integrity, and competence (NASW,
2000). According to Reamer (1995), “Social
work is among the most value-based of all
professions” (p. 3).
Before attempting to identify, understand,
and comment on ethical dilemmas, health social
workers should examine their personal values.
Each person has personal values that have been
shaped by family, friends, culture, and prior life
experiences. These personal values infl uence
how dilemmas are viewed and whether a prac-
titioner accepts the profession’s core values.
Understanding differences in individual value
bases has special relevance as practitioners in-
teract with patients operating from value posi-
tions different from their own. Hodge (2003)
underscored this in an article providing data to
suggest that the values of master’s level social
workers “were more to the left of working and
middle class clients” (p. 107).
Morals
Morals is a term derived from the Latin word
moralis, meaning custom, manners, or char-
acter. Morals have been defi ned as consisting
of “principles or rules of conduct which de-
fi ne standards for right behavior” (Lowenberg
& Dolgoff, 1996, p. 22). Morals encompass
widely accepted notions of right and wrong.
Although morals are not necessarily outlined
in the NASW Code of Ethics, they do shape
how social workers develop professional and
personal values.
Laws
Laws also has been defi ned in different ways.
Some defi nitions point to concerns with pro-
tection from abuses of power by authorities
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44 Foundations of Social Work in Health Care
as well as individuals. Other defi nitions refer
more to social control and welfare, and still
others emphasize more consideration of social
justice.
Laws, ethics, and values all have unique
meanings. Simply passing legislation does not
change individuals’ deep-seated beliefs and
ideas regarding a particular issue. For exam-
ple, passing laws proscribing assisted suicide
will not change people’s personal perspectives.
Simply attending to the law does not protect
social workers from behaving in a profession-
ally unethical way. When laws are passed that
are unjust, social workers have an obligation
to work through the courts to address social
injustice. For example, NASW is active in ad-
dressing legislation affecting health-care is-
sues such as prescription drug coverage.
Principles and Standards
Principles in a code of ethics may be thought
of as a stage in the formation of values. In
their own right, principles can serve as an
ideal, of sorts. Principles inform social work
practice (Reamer, 1995) and offer a reference
point for the development of even more spe-
cifi c standards. Standards in a code of ethics
specifi cally outline how social workers should
conduct themselves.
Ethics
Ethics is a term derived from the Greek word
ethos, which means a person’s character or
disposition (Angeles, 1992). There are several
ways of defi ning ethics. For the purposes of
this chapter, ethics will be divided into three
branches: metaethics, normative ethics, and
applied ethics.
Metaethics
Metaethics asks the questions “What does
something really mean?” or “What does it re-
ally mean to be ‘good’ or ‘bad’?” The term
metaethics refers to the study of the “methods,
language, logical structure, and reasoning used
to arrive at and justify moral decisions and
knowledge” (Angeles, 1992, p. 183).
Normative Ethics
In contrast to metaethics, normative ethics is
concerned with identifi cation of the morals,
values, principles, or standards that might be
relevant in addressing a dilemma. In developing
a normative ethical response to such a situation,
several values and principles might be relevant.
The NASW 2000 Code of Ethics wisely re-
fl ects that there are situations in which values,
standards, and principles confl ict. In these situ-
ations, two reasonable and informed practitio-
ners may disagree on what constitutes an ethical
response to a clinical situation.
Applied Ethics
Applied ethics is a third branch of ethics and
is concerned with the application of normative
ethics (a relevant set of morals, values, princi-
ples, and standards) to specifi c situations. This
would be the stage at which decisions actually
are made. Social workers should consider if
the ethical standard regarding legal obliga-
tions supersedes the principles of autonomy
and self-determination or if they feel that they
should act to have the law changed.
Ethics can be defi ned within each of the
three contexts—metaethics, normative ethics,
and applied ethics. That is, ethics can be con-
sidered: (a) a branch of philosophy interested in
value-based reasoning and human conduct; (b)
a framework of morals, values, principles, and
standards; or (c) the actual decision-making
process derived from that specifi c framework.
As it relates to social work in health care,
Joseph and Conrad (1989) provide a defi nition
of ethical behavior as “social workers’ profes-
sional behaviors in relation to biomedical ethi-
cal choices” (p. 23). The next section provides
a discussion of ethical issues related to a topic
that health social workers may encounter re-
lated to end-of-life care.
End-of-Life Care
The right-to-die debate resurfaced in 2005
with the case of Terri Schiavo, whose husband
had her feeding tube and hydration removed
against her parents’ wishes. This case provides
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Ethics and Social Work in Health Care 45
an example of just how divisive ethical dilem-
mas can become. Schiavo’s case was not the
fi rst to capture national attention. Two other
women, Karen Quinlan and Nancy Cruzan,
similarly faced the court’s involvement in their
right-to-die cases. Both women suffered brain
damage and never regained consciousness to
the point that they were able to verbalize their
wishes. Karen Quinlan’s breathing tube ulti-
mately was removed, but she lived another 10
years. Nancy Cruzan’s parents won a lengthy
court battle to have her feeding and hydra-
tion stopped. Cruzan died two weeks after her
feeding tube was removed. Both Quinlan and
Cruzan died in the 1980s. Amid even more
controversy, Schiavo died on March 31, 2005,
13 days after her feeding tube was removed.
These cases all refl ect fundamental moral,
ethical, and religious differences in this coun-
try. They also point to a strong need for health
social workers to be attentive to their patients’
wishes and advocate for completing advance
directive documents specifying such wishes.
When responding to challenging situations
such as the ones just described, the practitioner
should fi rst examine his or her own values as
they relate to the wishes of the patient. A social
worker’s values may differ from the patient’s
and interfere with the ability to engage in a
meaningful discussion. In a study of 110 hos-
pice social workers, Csikai (2004) found that
among the least discussed issues in hospice
care were those of euthanasia and thoughts
of suicide by a patient even though 34% of
the social workers had been approached by
their patients about assisted death. Under no
circumstance should the social worker fail to
address the patient’s concerns. In situations in
which a social worker’s values confl ict with
those of a patient, it may be necessary to refer
the patient to a colleague.
One of the fi rst responses to a patient who is
requesting to die should be a careful screening
for depression and a review of any other possi-
ble health treatment modalities. It may be that
after careful consideration and review of op-
tions the patient will still wish to die. However,
it also may be that he would like reassurance
from his family that he will be cared for and
will not be a burden or abandoned (Csikai,
1999). The patient also might be concerned
about what options his life could hold. After
these issues are addressed adequately, the pa-
tient might not continue to wish for euthanasia
or assisted death.
Metaethics may be relevant in situations
in which social workers believe that suicide
is wrong. Questions considered in metaethi-
cal analysis include why it is wrong and if it
is wrong in all situations. The defi nition of
suicide infl uences any subsequent conversa-
tion. Metaethics would be involved in under-
standing whether suicide is wrong in the case
of a suffering patient. Metaethics also would
be concerned with questions about what sui-
cide is. Is it suicide when it is physician as-
sisted—that is, a doctor gives a competent
patient the medications or other means to end
his life? Is suicide somehow different from ac-
tive voluntary euthanasia when a physician in-
jects a competent patient who requests a lethal
amount of an opiate-based painkiller? Is forgo-
ing recommended medical treatment suicide?
In contrast to metaethics, normative ethics
is concerned with the identifi cation of the mor-
als, values, principles, or standards that might
be relevant in addressing a dilemma. A nor-
mative ethics dilemma may be whether one
should support assisted death or euthanasia.
Normative ethics also is concerned with as-
sembling a framework out of those identifi ed
morals, values, principles, and standards that
could be used in contemplating a specifi c in-
stance of assisted death or euthanasia.
From a medical standpoint, the principles
of benefi cence and nonmalfeasance apply. The
principle of benefi cence basically instructs the
practitioners to “do good.” The principle of
nonmalfeasance instructs the practitioner to
“do no harm.” From the social work code, the
value in question could be dignity and worth
of the person. The principles of autonomy and
self-determination also seem to have bearing.
However, the ethical standard of commit-
ment to clients takes into account that social
workers may have legal obligations falling into
the realm of standards that would preclude fa-
cilitating euthanasia or assisted death. Also
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46 Foundations of Social Work in Health Care
relevant would be evaluating whether patient
autonomy supersedes preserving life in such
a case.
A variety of broad philosophical theories
exists within an ethics code to inform and in-
fl uence decision making. Both social work and
medicine have been infl uenced by a number
of philosophies over the years. Modern medi-
cine as a profession owes more to the positiv-
ist model than does social work. Positivism is
the notion that reality exists, is based on fi xed
laws, and is thus understandable (Guba, 1990).
Science in this framework is the mechanism
by which we can determine what constitutes
this reality and ultimately manipulate it in
our interest. This thought came about during
the Enlightenment period in the late 17th and
throughout the 18th centuries, when the world
was being viewed more in the context of a
clockwork universe that was ultimately under-
standable and subject to our control (Spurlin,
1984).
At times health social work may be seen as
a profession struggling to emulate the positiv-
istic approaches that have led medicine to its
present status in society. However, it would be
diffi cult to argue that social work has not paid
heed to a constructivist model. In contrast to
a clockwork universe, constructivism proposes
that society is not “a system, a mechanism, or
an organism” (Parton, 2003, p. 5) but rather
a symbolic construct relying on collaboration
between the observer and observed, together
creating a novel and fl uid meaning.
As it relates to social work in health care,
constructivism asks that a practitioner step
outside the imposed work environments (in
thought) and engage his patient on her own
terms in order to develop a more thorough un-
derstanding of the patient, what she is experi-
encing, and what she would desire. The social
work injunction to “start where the patient is”
and not where the social worker is or where
the social worker wants the patient to be would
be a step in the right direction toward con-
structivism. Social workers may better provide
relevant services if they understand the mean-
ing imposed by a patient on her disease and the
available treatments.
BASIC NORMATIVE
THEORIES
Some ethics theories are more concerned with
outcomes of actions. Others are more con-
cerned with identifying principles, standards,
and rules that can guide behavior before any
action is taken. Hence, most normative ethical
theory falls into the category of deontological
or teleontological.
Deontological and Teleontological
Theories
Deontological theory places primacy on the
ethical value, standard, or principle in deter-
mining the correct action without consider-
ation of the outcome. For example, with the
principle of confi dentiality, deontological the-
ory would dictate that a social worker should
under no circumstances violate the principle.
Teleontological theory is more concerned
with the outcome of a particular action than
with values, principles, or standards. The word
teleontological comes from the Greek word
telos, which means “end or goal” (Angeles,
1992, p. 369). For example, a teleontological
consideration of confi dentiality would be more
concerned with what would happen if this con-
fi dentiality were violated.
Deontology and teleontology often clash,
as do the values, principles, and standards of
an ethical code. One example of this is the
1976 case of Tarasoff v. Board of Regents of
the University of California (Kagle & Kopels,
1994). In this case, a patient informed his psy-
chologist at the University of California that
he was having homicidal ideations with Ta-
tiana Tarasoff as the target. The patient even
went so far as to inform his psychologist of
his plans. The psychologist contacted the cam-
pus police, who detained the patient for a brief
time and later released him with a warning not
to go near Tarasoff.
Later, the psychologist’s supervisors told
him to destroy his case notes surrounding this
incident, which by law is illegal and by the
NASW standards would be a clear violation
of the principles surrounding client records,
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Ethics and Social Work in Health Care 47
deception, and fraud. Several months later,
the patient murdered Tatiana. Tarasoff’s par-
ents ultimately successfully sued the univer-
sity. The California Supreme Court indicated
that the university had a duty to protect,
which superseded the patient’s privacy and
confi dentiality.
This controversy falls within the realm of
“duty to protect” or “duty to warn.” The de-
ontological consideration in this case would
be to attend to the ethical standard of con-
fi dentiality regardless of the outcome. This
consideration obviously falls apart when the
outcome seems much more harmful than the
violation of confi dentiality, as was affi rmed
by the court. A teleontological consideration
to protect the intended victim ultimately may
have more of a positive benefi t in the sense
that a life is saved.
In addition to framing ethical dilemmas via
teleontological and deontological perspectives,
other concepts such as utilitarianism, Kantian
ethics, ethics of care, and virtue ethics can be
applied in health social work.
Utilitarianism
Utilitarianism was strongly infl uenced by Brit-
ish philosophers Jeremy Bentham and John
Stuart Mills. This theory is premised on the
principle of utility. Utility is the doctrine that
a person ought to do that which brings about
the greatest happiness to the greatest number
of people or to the community as a whole. The
determination of right or wrong is teleonto-
logical in utilitarianism.
Utilitarianism has two main divisions: act
and rule. Act utilitarianism focuses exclusively
on the outcome. A classic example would be
the experiments conducted by the Nazis dur-
ing World War II. This “research” violated a
host of ethical considerations and resulted in
the torture and death of many. The question
an act utilitarian might pose would be: “Could
the research have some utility in providing us-
able data?” The act utilitarian might insist that
the data be made available to provide insight
into certain human conditions, treatments,
or diseases because there might be value in
these data.
Rule utilitarianism, however, defers to es-
tablished standards within an ethical frame-
work to make the decision of what produces
the most good. Research ethics has informed
consent as a cornerstone for its foundation.
This was clearly violated by the Nazi experi-
ments. With regard to these experiments, a rule
utilitarian would suggest that the use of these
data might generate more harm than good by
setting a precedent for using data obtained
unethically.
Ethics of Duty (Kantian Ethics)
In contrast to most utilitarian thought, espe-
cially act utilitarianism, stands ethics of duty.
This concept was espoused by the German
philosopher Immanuel Kant, who felt that the
outcome of an act was not relevant to deter-
mining whether it was right or wrong. Kant
believed that actions were right only if they
were consistent with a particular standard, fi t-
ting within a categorical imperative. One way
of determining what a categorical imperative
was would be to pose the question “Would
everyone benefi t if everyone participated in a
particular act?”
Kant believed that there were basically two
types of duties: perfect and imperfect. Perfect
duties are duties of omission, or clear duties
of things one should not do, such as steal, lie,
or kill. These duties are primarily “black and
white” in terms of conduct. Imperfect duties
are not as clearly defi ned. They are duties of
commission, such as be a good person. These
duties are more diffi cult to identify because
they are diffi cult to clearly extrapolate in every
instance.
Ethics of Care
Gilligan’s (1982) study of morality and pur-
ported differences in male and female moral
reasoning brought Kant’s arguments to a new
audience. She believed that there were differ-
ences, but they were not necessarily indicative
of moral superiority. Gilligan held that females
attended more to the ethics of care than the
ethics of rights and justice. The ethics of care
dictates that a more constructivist approach
might be taken in speaking to patients and
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48 Foundations of Social Work in Health Care
their families. Carse (1991) identifi ed seven
applications of care ethics in health settings:
1. A shift from principle-ism and institutional
rules and emphasis on a more responsive
relationship with the patient
2. An emphasis on self-awareness as a part
of understanding others
3. Placing value on ethical discourse and not
focusing exclusively on outcomes
4. A review of gender-based differences in
health care
5. An emphasis on the nature and dynamics
of relationships as particularly important in
ethical deliberation
6. Acknowledgment of the reality of moral
ambivalence
7. Consideration of what traits or virtues one
should develop to further competence in
ethical decision making.
Virtue Ethics
Virtue is a translation of the Greek word arete,
which means “excellence” (Lacey, 1996).
Both ethics of care and virtue ethics have been
referred to as “theories without principles” be-
cause they do not arise from specifi c principles
(Munson, 2000). Although the ethics of care
theory may use principles during application,
virtue ethics may rely on principles even less.
Virtue ethics refers to the positive attributes of
a particular type of person. Carse (1991) con-
sidered virtue ethics valuable in the sense that
contemplating a virtue may result in a better-
developed sense of professional self as it re-
lates to others.
Virtue ethics may be problematic. For in-
stance, ideas about what attributes a virtuous
doctor must possess may vary from person to
person. They might include patience, empathy,
and intelligence. It may be more diffi cult to
come up with an agreed-on defi nition of what
attributes a virtuous social worker might have,
especially as it relates to particular practice
areas, even within health social work. For ex-
ample, a hospital-based social worker in a case
management department might be perceived
as virtuous because she is able to contain costs
by discharging patients quickly. Another hos-
pital-based social worker may be perceived as
virtuous because he advocates for longer hos-
pitalizations for his psychiatric patients.
DEVELOPMENT OF
MEDICAL ETHICS, SOCIAL
WORK ETHICS, AND
BIOETHICS
Medical Ethics
If anyone conceal more than a single
lunatic without a license, he becomes
liable to a penalty of fi ve hundred pounds.
—Percival, 1803
Western medical ethics can be traced to
477 bce and the Oath of Hippocrates. How-
ever, Thomas Percival’s 1803 code of ethics
will serve as the starting point of this review.
Although the language and perspective of this
code may seem antiquated, as evidenced in the
preceding passage, it intimates modern dilem-
mas. For example, licensing and credentialing
of health-care institutions and practitioners
continue to be relevant today.
Percival was a physician in England during
the late 18th and early 19th centuries. In addition
to being a physician, he was a writer of morality
stories for the middle class. People sought his
help resolving disputes at the local Manchester
Hospital. He was also familiar with larger soci-
etal forces causing unrest in England, namely
the introduction of spinning mills, the English
slave trade, and treatment of the poor (Baker,
Porter, & Porter, 1993). Much of his aware-
ness of larger societal concerns can be seen in
his 243-page Medical Ethics (Percival, 1803),
which was progressive and thorough. Unfor-
tunately, the publication has been criticized
as more involved with professional etiquette
than professional ethics. This criticism seems
to miss the mark because topics covered are
cogent even by today’s standards and include
abortion, rape, medical malpractice, and the
purpose of charity. To be fair, the codes of both
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Ethics and Social Work in Health Care 49
medicine and social work have components of
trade etiquette as well as more value-based
considerations. Percival’s code eventually ap-
peared in America in the early 1800s in a much
abridged version of the original and infl uenced
the American Medical Association’s (AMA)
fi rst code of ethics in 1847.
Social Work Ethics
Abraham Flexner (1915) may have provided
some impetus for the fi eld of social work de-
veloping a unique code of ethics by posing the
question of whether social work was, in fact,
a profession. Flexner was one of the most in-
fl uential fi gures of his day in medical educa-
tion, and he imposed many changes in how
education was conceptualized and delivered
(Bonner, 2002). Flexner also commented on
the profession of social work in his 1915 ar-
ticle, “Is Social Work a Profession?” published
by the New York School of Philanthropy. In
this article, he outlined the necessary criteria
for a profession. According to Flexner, social
work had not yet met all the criteria of a pro-
fession, but he posited that in some ways it
was closer to doing so than law and medicine.
One of the most important requirements of a
profession, according to Flexner (1915), was
that it should have “spirit” or values:
In so far as accepted professions are pros-
ecuted at a mercenary or selfi sh level, law and
medicine are no better than trades. . . . In the
long run, the fi rst, main and indispensable cri-
terion of a profession will be the possession of
a professional spirit, and that test social work
may, if with will, fully satisfy. (p. 24)
The social work community began a conversa-
tion about ethics shortly after Flexner’s report.
Reamer (1998) identifi ed four distinct periods
of development for the social work code of
ethics: the morality period, the values period,
the ethical theory and decision-making period,
and the ethical standards and risk management
period (p. 488).
The morality period for social work oc-
curred in the late 19th century and lasted until
the 1950s. Individuals receiving care from so-
cial workers often were viewed as defective
in some way. In the early 20th century, social
workers began to attend more to social justice
concerns. External infl uences of society, such
as poverty, disease, and educational opportu-
nities, were appreciated. The settlement house
movement refl ected this concern with attempts
to provide newcomers to the United States
with some basic skills and understanding of
how to better integrate into their new country.
Mary Richmond has been credited with
drafting an early social work code of ethics
in the 1920s (Reamer, 1987). This was during
what was likely the beginning of the end of
the morality period. During this time, articles
were written on the need for social work eth-
ics, and in 1923, the American Association for
Organizing Family Social Work (AAOFSW)
began work on a code of ethics (Lowenberg &
Dolgoff, 1996). The American Association of
Social Workers adopted a formal code of ethics
in 1947, 100 years after the AMA’s code was
adopted (Reamer, 1999). AAOFSW merged
with others to form the National Association
of Social Workers (NASW) in 1955. NASW
published its fi rst code of ethics in 1960, con-
sisting of a set of 15 “I” statements, such as
“I respect the privacy of the people I serve.”
Shortly after the interest in settlement houses
declined, social work focused more on devel-
oping a domain-specifi c knowledge base and
area of practice that would set it apart from
other professions. In the 1940s and 1950s, so-
cial work moved into the values period (lasting
until the 1980s), during which there continued
to be a shift away from focusing on the cli-
ent’s morality to identifying ethical standards
and guidelines.
In social work, the 1980s ushered in the ethi-
cal theory and decision-making period. In both
the medical and social work communities, this
period was largely infl uenced by conferences
and center and commission work in develop-
ing a normative ethical response to bioethical
dilemmas. Lowenberg and Dolgoff (1996) and
Reamer (1995) wrote about the importance of
ethical theory and decision-making models in
resolving health-care and social justice issues.
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50 Foundations of Social Work in Health Care
Malpractice concerns as well as the introduc-
tion of managed care also helped direct ethics
in this period.
Social work ethics is now in a period of
ethical standards and risk management, ac-
cording to Reamer (1998). The 1990s through
the beginning of the 21st century have seen a
number of increasingly public scandals. Com-
panies have been caught engaging in ethi-
cally unsound accounting practices that have
impacted thousands. The Catholic Church
has been beset as inappropriate sexual rela-
tionships have been made public. Also, as a
consequence of some new homeland security
initiatives, concern regarding confi dentiality
and privacy has increased. Social work has a
role in treating and advocating for the victims
of abuses by powerful organizations. Clearly
understanding the ethical principles involved
allows practitioners to more easily identify and
address misconduct.
At the time of publication of this book, over
20 countries have developed codes of ethics
for social work to address challenges at mul-
tiple levels of practice. For example, torture
and terrorism, both increasingly a part of our
global awareness, are mentioned specifi cally
in the principles of the 2004 International Fed-
eration of Social Work Code of Ethics (www
.ifsw.org/f38000032.html).
Recent abuses of power by large corpora-
tions, institutions, and the government suggest
an ongoing need to set clearer standards for
social work practice in more ethically unam-
biguous situations, such as when social work-
ers enter into dual relationships with patients.
Because standards for behavior in ethically
challenging situations may prove elusive, so-
cial workers need to continue to update their
knowledge base and learn decision-making
skills that will protect their clients against
harm and themselves against litigation. As a
consequence of a litigious society and chal-
lenging practice environments, many social
work ethics experts agree that all social work-
ers should purchase malpractice insurance.
The touchstone for guiding practice, however,
remains the latest code of ethics. The revised
1999 NASW Code of Ethics clearly articulates
social work’s mission and values base. This
code is the best developed and refi ned to date
and refl ects an increasing sophistication in so-
cial work theory and practice.
Bioethics
During the late 1940s and early 1950s, there
were signifi cant advances in medical technol-
ogy (Jonsen, 1998). In 1949, the polio vac-
cine was discovered. In 1950, antihypertensive
medications were discovered. In 1952, an-
tipsychotic medications for the treatment of
schizophrenia were developed. Medical ethics
at that time echoed a sense of accomplishment
and security that the profession was respected.
In what may have been medicine’s self-satis-
faction, thoughtful review and analysis of ethi-
cal dilemmas may not have seemed necessary.
This self-assuredness waned in the 1960s as
biotechnology ushered in unforeseen diffi cul-
ties. Albert Jonsen (1998) traces the birth of
bioethics to the point in time at which technol-
ogy made hemodialysis available on a chronic
basis with the development of the Scribner
shunt, which allowed for external access to the
bloodstream. This marked the fi rst time that
a terminal illness—end-stage renal disease—
moved from 100% fatal to 100% treatable by
mechanical means. The ethics relevance of
this was the subsequent development of di-
alysis selection committees. These commit-
tees had to make decisions regarding what
nonmedical criteria should be used in deter-
mining who lives and who dies, which called
into question individual social worth and what
this constitutes. On the social front, the 1960s
and 1970s were a period of growth in aware-
ness and activism. The Nixon administration’s
Watergate scandal and the unpopular Vietnam
War together brought ethics and social justice
concerns to the public consciousness. Biotech-
nological realities and consequent real-life di-
lemmas presented the public with seemingly
impossible ethical situations.
The 1960s also bore witness to conferences
in the United States and other countries that
addressed bioethical issues. These conferences
acknowledged and reviewed dilemmas in areas
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Ethics and Social Work in Health Care 51
such as genetics, eugenics, and transplantation.
In addition to dialysis, heart transplantation
became a feasible intervention. The discus-
sion at the conferences ultimately resulted in
the generation of scholarly papers on ethics.
As these collections began to develop and sev-
eral bioethics centers appeared to house these
collections, further bioethical conversations
developed. Some of these centers were the
Hastings Center, the Kennedy Institute of Eth-
ics at Georgetown, and the Society for Health
and Human Values.
As bioethics centers were developing, the
bioethical conversation moved to the realm of
government. The Mondale Hearings of 1968,
for example, raised important questions about
end-of-life issues, behavior control, and ex-
perimentation with human participants. Ulti-
mately the hearings gave birth to the National
Bioethics Commission that exists today. The
2003 Commission was made up of 17 indi-
viduals appointed by the president. These in-
dividuals include scientists, doctors, ethicists,
social scientists, lawyers, and theologians. The
purpose of this committee is to advise the pres-
ident and help shape policy.
As discussed in the research ethics section
that follows, the Tuskegee story fi rst appeared
in the media in July 1972. Peter Bruxton, who
had training as a social worker, was essen-
tial in exposing this story. He learned of the
study from colleagues after he was hired to
work with patients who had venereal disease.
He attempted to work within the system to
intervene by contacting superiors. Ultimately
he became a “whistle-blower” and went to
the press in 1972 to expose the study (Jones,
1981). Partly in response to the public outrage,
the Commission for the Protection of Human
Subjects of Biomedical and Behavioral Re-
search was established in 1974. As its name
suggests, the commission’s imperative was to
develop guidelines for protecting participants
in research. This commission was one of the
fi rst governmental bodies to consider ethics
and develop recommendations for policy and
legislation. The Commission for the Protec-
tion of Human Subjects of Biomedical and Be-
havioral Research consisted of 12 individuals
from science, law, ethics, and the public. Its
mandate was to publish guidelines for medi-
cal research, an example of which is the 1975
Recommendations on Research with the Fetus
(National Commission for the Protection of
Human Subjects of Biomedical and Behav-
ioral Research, 1975). Several other important
documents followed: the 1976 report Research
Involving Prisoners (National Commission for
the Protection of Human Subjects of Biomedi-
cal and Behavioral Research, 1976) and in
1979 the Report and Recommendations on In-
stitutional Review Boards (National Commis-
sion for the Protection of Human Subjects of
Biomedical and Behavioral Research, 1979).
Finally in 1979, the National Commission is-
sued the Belmont report in an effort to fulfi ll
its mandate to identify basic ethical principles
that could guide research. Albert Jonsen, who
served on the commission, later wrote:
As a commissioner I participated in the for-
mulation of that [Belmont] Report. Today, I
am skeptical of its status as serious ethical
analysis. I suspect that it is in effect a prod-
uct of American Moralism prompted by the
desire of congressmen and of the public to
see the chaotic world of biomedical research
reduced to order by clear and unambiguous
principle. (Jonsen, 1991, p. 125)
His commentary on the commission he was
part of foreshadows the diffi culty to fi nd clear
guidelines in right-to-die cases. Following the
Belmont Report, the President’s Commission
for the Study of Ethical Problems in Medicine
and Biomedical and Behavioral Research was
established in 1979. This commission had a
broader mandate than the National Commis-
sion for the Protection of Human Subjects.
It addressed topics such as how death should
be defi ned. One of the important documents
to come out of this commission was Deciding
to Forego Life-Sustaining Treatment, which
suggested that a competent patient should
have priority over others in decision mak-
ing (President’s Commission for the Study of
Ethical Problems in Medicine and Biomedi-
cal and Behavioral Research, 1983). Before
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52 Foundations of Social Work in Health Care
disbanding in 1983, the commission recom-
mended that ethics committees should have a
role in dilemmas involving life-or-death care
and reviewed the concept of durable power of
attorney. These committees are appointed to
fulfi ll a specifi c mandate and are appointed for
a specifi c period of time.
The Los Alamos National Laboratory, Law-
rence Livermore National Laboratory, and
Department of Energy Laboratories began
producing DNA clone libraries of single chro-
mosomes in 1983, marking the beginning of
a process that ultimately would result in the
mapping of the human genome. The Human
Genome Project began in 1990, and by April
2003, the human genome had been mapped.
The National Bioethics Advisory Commis-
sion (1996–2001) and the President’s Council
on Bioethics (2001–2009) have both had to
address the implications of human genome re-
search. In addition to the governmental over-
sight in the form of commissions, the Human
Genome Project also developed its own ethics
program. This is the world’s largest bioethics
program, and it is a model for other programs
throughout the world. Beginning in 2010,
President Obama directed the Presidential
Commission for the Study of Bioethical Issues
to examine issues surrounding biosynthetic
technology. This technology goes beyond
the genetic manipulation of existing systems
and proposes to create new systems entirely,
namely those not found in nature.
DECISION-MAKING MODELS
Social workers routinely make key deci-
sions in a variety of settings. One of the
most visible settings for social work deci-
sion making is on health-care policy and eth-
ics committees. Social work presence may
have changed somewhat with the advent of
managed care, but organizations historically
have felt that social work input is essential
(Mulvey, 1997). As these decisions become
more transparent and subject to scrutiny,
it becomes increasingly important to make
them in an orderly and informed fashion.
This is in contrast to what Goldmeier (1984,
p. 46) believes was in the recent past a “ten-
dency to resolve ethical dilemmas on a case-
by-case basis without systematic grounding
in ethical principles.”
Developing a sound ethical decision can
be a daunting task, and currently a variety
of models exist to help guide decision mak-
ing. These models assume various geometric
shapes—some square, some triangular, some
two-dimensional, others three-dimensional. It
is not the appearance of the model, however,
that is important. Rather, it is the number of
elements and complexity of ties that is impor-
tant. Sound decision making involves consid-
eration of a variety of factors and variables
and not necessarily in a formulaic or linear
fashion. For an informed decision to be made,
the practitioner must be aware of many factors,
such as:
• Personal values and collegial, institutional,
and societal infl uences
• Ethical theory and decision-making models
• Social work theory, research, and practice
standards
• Social work ethical codes, as well as other
professional codes
• Relevant agency policy
• Federal and state laws and other regulations
• Impact on patients and, in some cases, impact
on practitioner (as in whistle-blowing)
Identifying and attending to all of these
factors is challenging. For example, Mattison
(2000) refl ects that identifying specifi cally
what social work practice standards are may be
somewhat diffi cult because a standard of prac-
tice often is not well defi ned. Also, most social
workers in health care do not work in isolation.
Rather, they are part of larger transdisciplinary
teams. In considering institutional infl uences,
the relationships with and perspectives of oth-
ers on the health-care team have a signifi cant
impact on the contribution social workers have
in ethical decision making (Landau, 2000).
After the social worker has developed un-
derstanding of the dilemma, he or she should
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Ethics and Social Work in Health Care 53
fi rst look to the social work code of ethics
to identify values, principles, and standards
that may be relevant in resolving the prob-
lem. In addition to the areas identifi ed pre-
viously, there should be an added effort to
identify sources of feedback. These may be
colleagues, agency committees, local state
boards of social work examiners, profes-
sional social work organizations including
NASW, or legal counsel.
Models of decision making often share
components. They may differ at times in some
fundamental areas, such as how principles
are ordered hierarchically. In this sense, mod-
els may represent different schools of thought
in much the same way that models of treat-
ment in health care vary and treatment theories
differ from one another. Netting, Kettner, and
McMurtry (1993), Murdach (1995), Lowen-
berg and Dolgoff (1996), Jonsen, Seigler, and
Winslade (1997), and Mattison (2000), all
review different models and decision-making
approaches relevant to health social work
practice.
According to Netting and colleagues (1993,
pp. 411–412), the steps to decision making are:
1. Recognize the problem.
2. Investigate the variables.
3. Get feedback from others.
4. Appraise the values that apply to the
dilemma.
5. Evaluate the dilemma.
6. Identify and think about possible
alternatives.
7. Weigh the pros and cons of each alternative.
8. Make your decision.
Part of the diffi culty in completing the last
task in the list, actually making the decision,
is weighing one principle against another or
even rank-ordering a series of principles
(such as freedom over well-being). Reamer
(1990) proposes comparing principles to one
another and deciding which one is more im-
portant. For example, “an individual’s right
to freedom takes precedence over his or her
own right to well-being” (Reamer, 1990,
p. 63). In the case of a patient’s decision to
continue to engage in self-destructive behav-
iors, however, this ordering would allow a
person with alcoholism to continue to drink.
In considering other principles, Reamer does
make provision for an attempt at intervention
to determine “voluntariness and informed
choice” as well as preventing harm to oth-
ers (p. 63). However, in this example, the
ontological considerations of freedom su-
persede the teleontological considerations,
such as impact on family, friends, and work
as well as long-term health consequences,
such as cirrhosis. In other words, protecting
individual freedom may be seen as a more
important principle than forcing someone to
live a healthy lifestyle.
Lowenberg and Dolgoff (1996, p. 414) pro-
pose a rank-ordering of principles from which
an individual should be able to:
• Exist with basic needs.
• Receive treatment that is fair and equal.
• Have free choice and freedom.
• Have injury that is minimal or nonexistent.
• Cultivate a good quality of life.
• Secure privacy and confi dentiality.
• Understand the truth.
• Receive available information.
SPECIAL TOPICS RELATED
TO HEALTH SOCIAL WORK
ETHICS
Dual Relationship
Dual relationship continues to be an area of
challenges for many social workers. Dual re-
lationship in health social work practice may
be loosely defi ned as a type of violation of
the practitioner and patient relationship. In-
junctions against dual relationships in health
care have been in evidence since the time of
Hippocrates. “Whatever houses I may visit, I
will come for the benefi t of the sick, remain-
ing free of all intentional injustice, of all mis-
chief and in particular of sexual relations with
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54 Foundations of Social Work in Health Care
both female and male persons, be they free or
slaves” (Hippocratic Oath, 400 bce).
In a 2009 study, Boland-Prom surveyed 27
state social work regulatory boards and exam-
ined 874 complaints that resulted in actions.
The most frequently occurring complaint con-
cerned inappropriate dual relationships. After
another examination of NASW code viola-
tions, Strom-Gottfried (2000) found most to
be boundary violations in dual relationships.
The most frequently occurring violations were
sexual relationships and nonsexual dual rela-
tionships.
Current defi nitions of dual relationships are
varied. Craig (1991) describes them as “am-
biguous relationships in which the goals and
boundaries are tailored to meet the needs of
the counselor” (p. 49). Hill and Mamalakis
(2001) defi ne dual relationships as “any con-
current or sequential relationship between a
therapist and client that is distinct from the
therapeutic relationship” (p. 200).
Early work on the topic of dual relationships
focused on absolute contraindications in dual
relationships, such as a practitioner having sex
with a client. However, a variety of nonsexual
dual relationships exist. Recently the paradigm
has shifted to consideration of when dual rela-
tionships are appropriate. Reamer (2003) has
divided dual relationships into those that are
boundary crossings and those that are bound-
ary violations.
Boundary crossings may not be inap-
propriate in all cases but remain controver-
sial. One example might be a hospital social
worker serving on a fundraising board with
a current or former patient. The appropriate-
ness of this situation greatly depends on the
social worker’s ability to make appropriate
judgments in what could potentially become
an ethically compromising environment.
Some would caution social workers to avoid
these potentially dangerous and libelous situ-
ations completely.
We could argue, however, that failing to
collaborate with the patient would result in
more harm than good for him. Health social
workers may be cautioned not to engage in
dual relationships with patients no matter
what the situation. This certainly seems an
outdated and perhaps alarmist position that
might place patients at greater risk if it jeop-
ardized potential collaborations between so-
cial workers and patients. Threatening the
ability to collaborate on boards or planning
committees, for example, might mean that so-
cial workers and patients would not engage in
dialogues to establish the needs of end-stage
renal patients.
How would one go about ordering princi-
ples and standards in this instance? Does the
“slippery slope” argument have the fi nal say
in whether to proscribe potentially benefi cial
interactions? The slippery slope metaphor is a
very prominent argument in the fi eld of ethics.
It is also called the “thin edge of the wedge”
or “wedge” argument (Pence, 2004, p. 111).
According to Pence, these arguments are most
prominent at the beginning of end-of-life ethi-
cal dilemmas. Although colloquial in com-
mon parlance, the term does speak to some
important considerations, such as conceptual
or empirical trajectories. Would allowing dual
relationships to occur in this area result in an
ongoing reduction of standards in more clearly
defi ned inappropriate relationships (concep-
tual)? Is there something about human nature
that ultimately will take advantage of these
situations (empirical)?
Lazarus (1994) would respond by saying
that “one of the worst professional violations
is that of permitting current risk management
principles to take precedence over humane in-
terventions” (p. 260). This is not a new idea.
Miller and Rollnick (1991) and Carl Rogers
(1959) all support the idea that relationships
account for much of the changes that occur
in treatment. Current literature echoes this
sentiment by providing evidence to support
a relationship between the quality of rapport
between provider and client and outcome.
These “clinical encounters and relationships
may even be perceived by clients as more like
‘friendships’” (Green et al., 2008, p. 9).
The careful consideration of the appropri-
ateness of potential dual relationships is es-
pecially relevant to rural social workers who
may encounter multiple dual relationships. In
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Ethics and Social Work in Health Care 55
response to the misleading information pro-
vided by continuing education providers, the
author of this chapter contacted by phone the
Louisiana State Board of Social Work Exam-
iners, NASW, and the Council of Nephrol-
ogy Social Workers for input. In addition, the
NASW Code of Ethics was consulted for guid-
ance. No board expressly prohibited all dual
relationships. However, it was suggested by
the state board that guidelines be developed to
address this issue.
Boundary violations, alternatively, are
clearly inappropriate. These involve “exploit-
ative, manipulative, deceptive, or coercive”
actions (Reamer, 2003, p. 122). The 2000
NASW Code of Ethics proscribes social work-
ers’ engagement “in dual or multiple relation-
ships with clients or former clients in which
there is a great risk of exploitation or potential
harm to the client” (Standard 1.06).
Clear dangers are inherent in the example
of a social worker serving on a board or com-
mittee with a patient. If the social worker was
not sensitive to the dynamics of the situation,
the board role could devolve, and several un-
toward outcomes could be possible. For in-
stance, the relationship could devolve into a
more collegial or friendship-type relationship
(and even possibly a sexual relationship), or
the patient might feel he has more access to the
social worker and attempt to use this time to
address more clinical concerns. This access to
the health-care provider beyond the provider-
patient relationship may become increasingly
problematic as social workers are responsible
for more and more patients with less time to
provide clinical services.
The issue of confi dentiality could pose a
problem if the social worker was not careful.
For example, one scenario that conceivably
could cause problems might be if the patient
was sick and other board members asked the
social worker about specifi cs of his illness.
The social worker could abuse power in the
relationship to stifl e the patient’s voice on the
board or in the patient’s health-care environ-
ment. Furthermore, the social worker and pa-
tient could manipulate decisions and available
resources for economic or other gain.
Another potential danger is possible serv-
ing on boards with patients. In applying utili-
tarianism to this example, it becomes apparent
that both courses of action may be defensible.
Act utilitarian thought and care ethics may dic-
tate that the potential benefi ts take precedence
over the risks. Rule utilitarianism or Kantian
ethics might suggest that more harm would be
done to the profession if these rules were not
maintained.
Arguments for considering dual relation-
ships in light of the service provided also may
be relevant. For example, Hardinia (2004)
points out that direct clinical social work prac-
tice is substantively different from community
social work. With this in mind, some would
argue that collaboration takes on more of an
ethical imperative in community work than it
does in clinical work. Does this hold true for
social work in health care? Strom-Gottfried
(2003) provides data to suggest that private
practitioners have a higher rate of ethical vio-
lations than do social workers in agencies. This
was measured by reviewing 894 of 901 eth-
ics complaints fi led with NASW for the time
period 1986 to 1997. More work should be
undertaken to determine why this is the case,
because the study questions how the data were
gathered. One possible explanation would be
that there is more oversight and thus fewer
opportunities for violation in agency settings,
such as hospital social work, compared with
private practice. Another explanation might be
that the nature of the client-social worker re-
lationship is different in nonpsychotherapeutic
settings and therefore lends itself less easily
to abuse.
When inappropriate dual relationships do
occur, they may have less to do with the nature
of the relationship and more with intrapsychic
features of the practitioner. Schoener (1995)
suggests that clinicians who engage in sexual
or other inappropriate relationships with cli-
ents may have underlying mood or personality
disorders. In addition, Simon (1999) identifi ed
the egregious occurrence of impairment (as
may occur in substance use) and incompetence
as possible triggers of inappropriate dual rela-
tionships.
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56 Foundations of Social Work in Health Care
Managed Care and Whistle-Blowing
As discussed in Chapter 5 of this book, man-
aged care has changed the dynamics of health-
care provision in the United States dramatically.
Neuman (2000) describes the new environ-
ment as one with decreased reimbursement
for health-care providers, decentralization of
services, a decrease in staff credentialing and
expertise, and the emergence of standards of
care. These conditions increase the possibility
that ethical violations will occur.
Possible abuses that might occur more fre-
quently in a managed care environment in-
clude the exaggeration of patient symptoms
in order to ensure or increase reimbursement.
This exaggeration may be well intentioned
from the practitioner’s perspective. It may as-
sume the form of changing diagnoses from an
adjustment disorder to a more severe psychiat-
ric illness in order to secure or extend needed
treatment in a psychiatric hospital. Employees
may be encouraged to seek treatment from in-
network providers. These providers, especially
in health care, also may be the patient’s col-
leagues, vendors, or own clients. This places
an employee in a potential dual relationship
with the provider.
Historically managed care has threatened
informed consent through facilities’ use of
nondisclosure, or gag, clauses. These gag
clauses prevented social workers or other prac-
titioners from discussing the limits of services
available as mandated by third-party payers or
of discussing other available options beyond
those offered by a particular managed care
organization (Strom-Gottfried, 1998). Social
work, specifi cally through NASW, was one of
the fi rst professions to address specifi cally the
ethics involved in informed consent as it re-
lates to nondisclosure clauses.
Confi dentiality also may be more threatened
in a health-care environment that relies on out-
sourcing services. The availability of electronic
data and transfer of data from one facility to
another may pose an ethical risk. However,
this may be more a function of technology than
managed care specifi cally. With the vast amount
of data available electronically, this information
has become a target of computer hackers and
other criminals. There have been recent cases
where criminals have accessed personal credit
information of tens of thousands of individu-
als. It is not inconceivable for this to happen
to personal health information. Personal health
information in the wrong hands could affect a
person’s employment potential, fi nances, and
interpersonal relationships.
Practitioners in managed care and other
health-care environments may witness un-
ethical practices. One decision is whether to
inform authorities of these practices. Whistle-
blowing refers to the act of notifying authori-
ties of harmful deviation from standards of
care or unethical practices within an organiza-
tion. From a micro-level perspective, this may
take the form of notifying superiors of a col-
league’s malpractice in terms of violations of
the NASW Code of Ethics, law, or agency poli-
cies. From a macro-level perspective, this may
involve a practitioner notifying people outside
the agency of problems within the agency. Al-
though the best policy generally is to follow a
chain of command within an agency, this may
not provide the appropriate results. For exam-
ple, retaliation is a real concern in a corporate
work environment.
If the identifi ed problem is with the policies
made by the management, and these have been
brought to the attention of the management with
no effect, it may be necessary to pursue other
options outside the company. For example, in
the past, whistle-blowers have accessed local
media and the American Civil Liberties Union.
However, Reamer (1999, p. 162) recommends
that, before notifying authorities within or out-
side an agency of ethical violations, a practitio-
ner should take time to consider the:
• Severity of harm and misconduct involved
• Quality of evidence of wrongdoing
• Effect of the decision on colleagues and
agency
• Viability of alternative courses of action
It may be important to realize that no agency
is perfect, and employees cannot be functional
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Ethics and Social Work in Health Care 57
if they whistle-blow every time they encounter
a problem. If a social worker comes across a
problem with a colleague or an agency, there
should be an effort to directly address the
colleague or follow the chain of command.
Careful documentation of the event and the
efforts taken by the social worker to resolve
the problem should be made.
The NASW Code of Ethics includes sev-
eral references to situations in which report-
ing violations might be appropriate. However,
lock-step or formulaic responses to this type of
dilemma, as in all other ethical dilemmas, may
prove incomplete. Decision making during the
reporting process should be made in a refl ec-
tive and orderly fashion, and documented. For
any claim to be taken seriously, documentation
must be provided. Documentation also serves
to protect the social worker, especially if a
court becomes involved.
Consideration should be made to what ef-
fect any accusations by the reporter might
have. The accusations could ruin the reputa-
tion of a coworker or undermine the mission
of an agency. As a consequence, clients could
be harmed if there is an interruption or end to
services. Finally, great care should be taken
to consider other options. There are some
governmental guidelines protecting people
who report possible wrongdoing, but they are
placed at great risk from the beginning. This
may result in damage to their reputation. Still,
when it is clear that there is harm to others, all
reasonable efforts should be taken to remedy
the situation.
SOCIAL WORK RESEARCH
ETHICS
The ethics of social science are situation
ethics.
—Humphreys, 1975, p. 170
This quote from Humphreys can be seen as
morally ambiguous. Fortunately, safeguards
exist today that protect ethical analysis from
devolving into an argument used to justify a
desired protocol (Lacey, 1996). For example,
all universities and health-care facilities should
have their own institutional review boards
(IRBs) that provide some safeguard against
potentially harmful research and ensure that
research does not exploit human participants.
IRBs ensure that there is informed consent,
confi dentiality consideration, policies regard-
ing data storage, and other safeguards.
Unfortunately, problems occur even with
these safeguards in place. While conducting
research, social workers may deviate from
ethical practice for a variety of reasons. One
of the most seductive motives may be that the
researcher believes the benefi t from the results
or knowledge accrued by bending rules for re-
search on human subjects or other deviations
from research protocols outweigh any harm
done to participants. Deviations from ethically
sound research, regardless of how seemingly
innocuous or, conversely, compelling, can
have serious consequences to the researcher,
participants, and society at large. Within the
realm of research, the areas of most impor-
tance are:
• Voluntary participation or consent
• No harm to participants or nonmalfeasance
• Anonymity and confi dentiality
• Deception
• Analysis and reporting
• Justice and benefi cence
Many people trace the development of re-
search ethics to the Nuremburg Code. Follow-
ing World War II, in 1946, the United States,
France, the United Kingdom, and Russia par-
ticipated in an eight-month trial in which 16
German physicians were convicted of crimes
against humanity. These physicians had par-
ticipated in research on prisoners without their
consent, often infl icting great pain and death.
Some of this wartime research in Nazi Ger-
many involved shooting prisoners to study
wounds and purposefully injecting prisoners
with live viruses to study disease.
The Nuremberg Code was developed in
response to these violations. Attention to vol-
untary consent was at the center of the Code
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58 Foundations of Social Work in Health Care
(Trials of War Criminals Before the Nurem-
berg Military Tribunals Under Control Coun-
cil Law 10, 1950). In all, the Nuremberg Code
identifi ed 10 principles designed to protect
research participants. This was a great step
forward in research ethics, but its principles
have not always been followed. In a sense, the
publication of the Nuremberg Code marks the
beginning of a cyclical phenomenon in which
a crisis involving research occurs, a response
is made in the form of legislation addressing
the crisis, and the conditions preceding the cri-
sis eventually reappear.
The United States was not immune from this
phenomenon. In 1929, the U.S. Public Health
Service with the local departments of health
of Mississippi, Tennessee, Georgia, Alabama,
North Carolina, and Virginia were involved in
what is called the Tuskegee Study, the aim of
which was to control syphilis. In 1932, syphi-
lis treatment was withheld from approximately
400 African American men in Macon County,
GA. The fact that African American men were
used exclusively was refl ective of the racist at-
titudes of the time. The ensuing study spanned
some 40 years, despite the fact that penicillin
became available to treat syphilis in the 1940s
(Jones, 1981). The study was made public in
the 1970s as an example of misuse of research
on human subjects. In 1997, President Clin-
ton made a formal public apology to the sur-
viving participants of the study, and in 1999,
the National Center for Bioethics and Health
Care was established at Tuskegee University.
Recently, Susan Reverby uncovered additional
information about syphilis experiments that
were sponsored by the U.S. government (Mc-
Neil, 2010).
In 2010, Secretary of State Hillary Rodham
Clinton and Health and Human Services Sec-
retary Kathleen Sebelius made a public apol-
ogy to the government of Guatemala related to
the actions of the U.S. Public Health Service
from 1946 to 1948. Seven hundred Guatema-
lan prisoners were purposefully infected with
syphilis using prostitutes, direct exposure to
the virus, and spinal injection.
A common theme in both the Nazi atrocities
and the Tuskegee and Guatemalan studies is
the use of vulnerable populations, which often
consist of the disenfranchised, minorities, and
women. In all these cases, one of the primary
violations of research ethics was in the lack of
voluntary participation. The Guatemalan pris-
oners were a vulnerable population by virtue
of being incarcerated. By today’s standards,
prisoners are considered a vulnerable popula-
tion and require full IRB deliberation before
any study is sanctioned. Many of the Guatema-
lan prisoners also had mental illnesses.
Informed consent also may be related to
privacy concerns as outlined in the discussion
of Henrietta Lacks (see Box 3.1). Cells labeled
with her name were disseminated throughout
the world without her understanding that she
was providing tissue for research.
Millgram’s obedience study provides an-
other example of violation of the “no harm to
participants” principle (Miller, 1986). Mill-
gram conducted this study in the early 1960s.
He was researching the phenomenon of obe-
dience. For this study, he recruited partici-
pants via a newspaper advertisement. He then
instructed the participants to assume the role
of a teacher who would infl ict punishment
through an electric shock to a learner. An actor
assumed the role of the learner and had an
electrode strapped to his arm. The teacher was
instructed to give the learner a shock with each
incorrect response. The teacher was then in-
structed to increase the voltage incrementally.
The actor would respond to each shock.
Disturbingly, the teachers continued to
administer the shocks even when the voltage
meter indicated that the shocks registered in
the dangerous and severe range. Throughout
this experiment, the teachers appeared to suf-
fer psychological trauma while administer-
ing the shocks, yet they continued to follow
Millgram’s commands. A common criticism
of Millgram is that he relied on the ends to
justify the means, or attended to only teleonto-
logical considerations. This experiment did re-
veal valuable information. It has been viewed
by some as shedding light on why people were
able to commit violent acts while under the di-
rection of an authority, such as in Nazi Ger-
many. However, his study still is considered
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Ethics and Social Work in Health Care 59
Box 3.1 Henrietta Lacks and the First
Immortal Cell Line
As health-care professionals, we often
assume that we have a good understanding
of the ethical issues revolving around
informed consent, especially as it relates
to medical procedures and research. Is that
always the case? Are you aware of what
happens to your blood or tissue when it is
drawn or biopsied for diagnostic purposes?
You might be surprised. General consent
forms, in addition to consent for the tests,
often contain a brief provision for saving a
sample for research. Over the years, this and
other collection consents have resulted in
the storage of tissue from over 307 million
samples from 178 million people (Eiseman
& Haga, 1999) in the United States alone.
In her 2010 book The Immortal Life of
Henrietta Lacks, Rebecca Skloot brings
awareness to the issues revolving around
informed consent and stored tissue samples
by focusing her attention on the woman
who generated the fi rst immortal cell line.
Henrietta Lacks was an African American
woman who, at age 30, was diagnosed with
an especially aggressive form of cervical
cancer. She was treated at Johns Hopkins in
1951. In April of that year, after she signed
a basic consent form that did not mention
donating a sample, tissue was scraped from
her cervix and sent to the hospital lab. The
radium procedure used to treat her was
then administered. She died that October.
Since then, Lack’s cells have been used all
over the world in research ranging from
Parkinson’s disease to the fl u, and they
continue to be used today.
Enough of her cells have been grown to
weigh “50 million metric tons . . . wrap around
the earth at least three times, spanning more
than 350 million feet” (Skloot, 2010, p. 2).
They are commonly referred to as HeLa
cells. In 2000, around the time of the fi rst
cloning of a mammal, Christine Borland, a
Scottish artist, drew from this Lack’s legacy
by displaying a microscope examining HeLa
cells and the magnifi ed image of those cells.
The work was titled HeLa HOT to refl ect
the “hot topic” of genetic research and was
part of a larger exhibit commenting on the
ambiguities and sometimes dehumanizing
impact of genetic research.
The Health Insurance Portability and
Accountability Act of 1996 would no longer
allow the name of the donor of a tissue
sample to be widely known. It does little to
mitigate the effects of HeLa research and
notoriety on Lack’s family, a family who has
benefi ted little from the immense amount of
money generated by discoveries made using
the HeLa cell line.
an egregious violation of research ethics for a
variety of reasons, including the possible long-
term psychological trauma to the participants.
Project Camelot was an attempt by the U.S.
government in the 1950s to investigate how
governments were overthrown and re-formed
in Latin America (Horowitz, 1967). The under-
lying intent was to gain information that would
allow some control over how governments in
volatile political climates developed. This type
of research has clear problems. Although this
example may come from macro-level practice,
it serves to illuminate the misuse of research
in politics. This type of research immediately
calls into question justice and benefi cence.
It also speaks to a clouded purpose of the re-
search. The danger that health social workers
should remember from this is that the true
nature of research is not always apparent.
Health social workers involved in their own
and institutional research endeavors are wise
to refl ect carefully on the previously discussed
research considerations. Many social workers,
especially those working in teaching hospi-
tals, either will be approached to participate
in research or will have patients who are in
research studies. Learning the funding source
and the premise behind the research will help
social workers assess its value to the patients
and better inform them.
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60 Foundations of Social Work in Health Care
ETHICAL CHALLENGES IN
THE 21ST CENTURY
As is apparent in some of the examples in this
chapter, ethical challenges evolve in ways that
at once demand and escape satisfying solu-
tions. In the 21st century and beyond, ethical
dialogue is inexorably tied to science. Health
social work has an obligation to provide a
voice to individuals and to existing culture
as sciences provide an ever broadening array
of ethically ambiguous choices. Health social
workers providing direct care to patients, serv-
ing on ethics committees, shaping policy, and
acting in the legislative arena must all have the
ability to redirect attention to ethical and in-
terpersonal considerations. From a micro-level
to a macro-level perspective, this will be chal-
lenging because new health-care dilemmas
have profound societal meaning.
Compelling health dilemmas have the po-
tential to draw reasonable discourse and action
away from the issue at hand. These dilemmas
may be used as rallying cries for agendas far re-
moved from the welfare of the patient. An inad-
equate and depersonalizing health-care industry
further threatens ethical care in this country.
Health social workers can effect change, how-
ever. By remaining grounded in an understand-
ing of the profession’s mission, values, and
ethics, health social workers have the ability to
avoid losing focus. With a clear sense of pur-
pose, health social workers can help redirect
health care to an ethical best fi t with patients.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 3.1
Heather recently completed the requirements
for her social work license. She was hired by
a hospital’s psychosocial rehabilitation cen-
ter as its program coordinator. This program
provides services to patients with a serious
mental illness (SMI). With her social work
license, Heather can now provide individual
and group therapy and bill third-party payers,
such as Medicare and Medicaid. She also can
supervise paraprofessionals who provide psy-
chosocial rehabilitation day services to pa-
tients. These services are defi ned by her state
Medicaid manual but encompass a broad array
of needs, including social-skill development
and community integration. One of Heather’s
new roles is to plan, supervise, and sign off
on all of these services as the mental health
professional. This is appropriate and required
by Medicaid.
Within her fi rst week, Heather learns that
the most popular rehabilitation day program is
taking clients to a casino. Usually two to four
paraprofessionals accompany the clients to the
casino. Clients spend the day there, and some
gamble. They interact with community mem-
bers, eat, and often see a show. The point of the
program as it was explained to Heather was to
promote social skills in a natural environment.
As a new MSW graduate, Heather remembers
that community-based social learning is essen-
tial for the SMI population. Clients who have
cognitive defi cits from a mental illness have a
better chance of learning skills in a natural set-
ting. This all makes perfect sense to Heather,
but something about this whole situation both-
ers her.
What should Heather be concerned about,
if anything? If Medicaid only considers active
interventions as billable services, is it ethical
to bill Medicaid to take clients to a casino?
How should she go about fi nding some direc-
tion in this situation? What can Heather do in
this situation?
Learning Exercise 3.2
Sam was a transplant candidate at liver trans-
plant center where you are employed. His liver
disease is due to hepatitis C virus and polysub-
stance dependence. About a year ago, Sam was
denied a transplant because of medical contra-
indications and ongoing alcohol abuse. He was
advised to lose weight and stop drinking before
he would be reconsidered for transplant. Sam
is well known regionally for his art and poetry,
but he is best known for his charisma and over-
the-top lifestyle. Several employees at the liver
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Ethics and Social Work in Health Care 61
transplant center are fond of him. Sam brings
paintings to the center every month or so, and
the staff hang them in the waiting room.
Sam’s health continues to deteriorate, but
he tells everyone that he just knows that he
will get a transplant soon. Sam’s family and
fans take some comfort in this information. As
a social worker on this transplant team, your
role has been to conduct a psychosocial evalu-
ation and provide education and counseling.
When it was clear that he was not going to en-
gage in treatment with you or at your center,
you made attempts to refer Sam elsewhere for
counseling and then hospice care. He refused
both. Multiple relational and ethical issues are
involved in this scenario. What is the implicit
message or messages that Sam is sending by
gifting his paintings to the center? What is the
message the offi ce manager is sending back to
Sam by accepting them? How is this impacting
his care? More important, what is your role in
his care now?
Learning Exercise 3.3
Kimberly has been a very effective spokes-
person working as a social worker for a local
hospice. She also is known for her good thera-
peutic work with patients. A local producer
has heard lots of positive things about the hos-
pice and has approached Kimberly with the
idea of a documentary series to increase pub-
lic awareness and support. They would fi lm in
the hospice and interview friends and family
members in the community. This would all be
tastefully done with the informed consent of
patients and families.
Kimberly is familiar with this type of
media. She has seen similar reality shows with
prisoners, pregnant teens, hoarding, substance
dependence and abuse, and mental disorders.
There is even a local broadcast of drug court.
Sometimes licensed therapists, including so-
cial workers, take part in these shows, and the
actual treatment is recorded and broadcast.
Kimberly realizes that this presents privacy is-
sues but decides that, with a thorough review
of the potential risks and benefi ts in the con-
sent process, the clients can make informed
decisions. She also thinks it is inappropriate
and infantilizing to assume that people make
these choices for themselves. She also believes
that there will be broader benefi ts to society.
Even though reality shows have become
the norm, they present numerous ethical chal-
lenges. In this example, what are the risks and
benefi ts to the clients? Is a documentary on
hospice any different from broadcasting a local
drug court? How would the informed consent
be impacted if the drug court participants were
given the choice of prison or televised drug
court? Are prisoners and people with serious
mental illnesses vulnerable populations that
warrant special consideration in the consent-
ing process for television broadcasts? Is spe-
cial consideration for informed consent just
an issue for research? How does incentivizing
participation by offering to pay for treatment
impact the informed consent process?
SUGGESTED RESOURCES
The Genome Project—http://genomics.energy
.gov/
This is a gateway site for the project.
The Hastings Center—www.thehasting
scenter.org
The center is a nonpartisan research
institution dedicated in part to bioethics.
Human Genome Project Information Ethi-
cal Legal and Social Issues—www.ornl
.gov/sci/techresources/Human_Genome/
elsi/elsi.shtml
International Federation of Social Workers
Ethics in Social Work Statement of Prin-
ciples—www.ifsw.org/p38000324.html
This site includes links to approxi-
mately 20 countries with national codes
of social work ethics.
National Association of Social Workers Of-
fi ce of Ethics and Professional Review—
www.socialworkers.org/nasw/ethics/
default.asp
National Institutes of Health Bioethics
resources and links—http://bioethics
.od.nih.gov
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http://genomics.energy.gov/
The Hastings Center — Health, Science, and Technology Ethics
http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml
http://www.ifsw.org/p38000324.html
http://www.socialworkers.org/nasw/ethics/default.asp
http://bioethics.od.nih.gov
http://genomics.energy.gov/
The Hastings Center — Health, Science, and Technology Ethics
http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml
http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml
http://www.socialworkers.org/nasw/ethics/default.asp
http://bioethics.od.nih.gov
62 Foundations of Social Work in Health Care
Presidential Commission for the Study of
Bioethical Issues—www.bioethics.gov
The Rand Corporation—www.rand.org/
This not-for-profi t organization con-
ducts research in numerous areas includ-
ing health and health care.
Tuskegee University National Center for
Bioethics in Research & Health Care—
www.tuskegee.edu/Global/category
.asp?C=35026&nav=menu200_14
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64
4
Public Health and Social Work
MARJORIE R. SABLE, DEBORAH R. SCHILD, AND J. AARON HIPP
In his seminal 1920 piece “The Untilled Fields
of Public Health,” Charles-Edward Amory
Winslow, professor of public health at the Yale
School of Medicine from 1915 to 1945, de-
fi ned public health as:
the science and the art of preventing disease,
prolonging life, and promoting physical
health and effi ciency through organized
community efforts for the sanitation of the
environment, the control of community
infections, the education of the individual in
principles of personal hygiene, the organiza-
tion of medical and nursing services for the
early diagnosis and preventive treatment of
disease, and the development of the social
machinery which will ensure to every indi-
vidual in the community a standard of living
adequate for the maintenance of health. (In-
stitute of Medicine [IOM], 1988, p. 39)
The core functions of public health agen-
cies at all levels of government are assessment,
policy development, and assurance (IOM,
1988; Schneider, 2000). Assessment refers to
the regular collection, analysis, and sharing of
information about health conditions, risks, and
resources in a community. Policy development
uses assessment data to develop local and state
health and social welfare policies and to direct
resources toward those policies. Assurance fo-
cuses on the availability of necessary health
services throughout the community. It includes
maintaining the ability of both public health
agencies and private providers to manage day-
to-day operations as well as the capacity to
respond to critical situations and emergencies.
Public health is a fi eld of practice with a spe-
cifi c orientation and framework for the various
professionals who work within the public health
arena. The professionals include both clinical
practitioners, such as clinical social workers,
nurses, health educators, occupational health
and safety professionals, and physicians and
nonclinical professionals, such as epidemiolo-
gists, administrators, and policy makers.
Social workers are well prepared to work
within public health and with other public
health professionals because they share many
of the same values, theories, and practice meth-
ods. Shared values include a commitment to
enhance social, economic, and environmen-
tal justice and a focus on eliminating dispari-
ties between and among various populations.
Furthermore, social work and public health
interventions primarily focus on oppressed, vul-
nerable, and at-risk groups (Wilkinson, Rounds,
& Copeland, 2002). Theoretical approaches to
develop interventions are, in social work, the
ecological approach of person in environment
(Germain, 1984; Germain & Gitterman, 1980;
Kondrat, 2008) and, in public health, social epi-
demiology (Berkman & Kawachi, 2000; Oakes
& Kaufman, 2006). Each is unique, but both
rely on an understanding of how social systems
relate to health status.
Social workers who work in public health
serve as members of transdisciplinary teams,
share many of the same skills as their col-
leagues, and participate in public health inter-
ventions. The unique approach that public health
social workers bring to public health practice is
grounded in social work theory, especially the
person-in-environment approach to practice.
The practice methods particular to social work-
ers—family centered, community based, cultur-
ally competent, coordinated care—have been
JWBT514_ch04.indd 64JWBT514_ch04.indd 64 9/21/11 7:42 PM9/21/11 7:42 PM
Public Health and Social Work 65
integrated into public health practice and ad-
opted by various other providers of public health
services (Bishop & Arango, 1997).
This chapter explores public health social
work fi rst by examining its history and then
by exploring its intersection with social work
practice, current practices, research, and future
directions.
Chapter Objectives
• Review the history of public health social
work and introduce Healthy People 2020,
the U.S. national public health goals and
objectives.
• Discuss shared values and common ap-
proaches in public health and social work
practice.
• Describe levels of practice and components
of prevention.
• Review public health interventions for
health promotion and disease prevention.
• Identify emerging issues for public health
social work practice and research.
HISTORY OF PUBLIC
HEALTH SOCIAL WORK
An early public health intervention in the
United States was an immunization campaign
to prevent smallpox (World Health Organiza-
tion [WHO], 1998). Public health interven-
tions occurred before the modern era, but the
combination of increasing sophistication in
the medical sciences and the efforts of so-
cial reformers helped establish modern public
health. The roots of the modern institution of
public health in the United States are almost
indistinguishable from the roots of social work
itself. Social reformers established settlement
houses, proposed legislation, and succeeded
in establishing programs that had far-reaching
impacts on the health status of Americans.
The efforts of early social reformers led to
the development of settlement houses and even-
tually to the establishment of the Children’s
Bureau in the U.S. Department of Health and
Human Services (DHHS) (Gordon, 1994). The
Children’s Bureau campaign to investigate and
reduce infant mortality provided the impetus
for the passage of the Maternity and Infancy
Protection Act, also known as the Sheppard-
Towner Act of 1921 (Margolis, Cole, & Kotch,
2005). The Sheppard-Towner Act was the pre-
cursor to Title V of the Social Security Act of
1935, which established the role of the federal
government in providing and regulating mater-
nal and child health services, crippled children’s
services, and child welfare services (Gordon,
1994; Margolis et al., 2005). Title V, also re-
ferred to as the Maternal and Child Health
Services Block Grant, is administered by the
Maternal and Child Health Bureau (MCHB) in
DHHS. More information about the history and
programs of Title V can be found on the MCHB
Web site (http://mchb.hrsa.gov).
Although public health social work had its
roots in maternal and child health, the prac-
tice of public health social work has expanded
into a number of areas (see Box 4.1). These in-
clude participation in transdisciplinary teams
working on such issues as pandemic infl uenza,
physical activity and obesity, tobacco cessa-
tion, human traffi cking, and disaster prepared-
ness for both natural and man-made disasters.
Settlement Houses and Social Reform
Movements
In the late 1890s, residents of settlement
houses worked to improve the health of the
Box 4.1 Brief Defi nition of Public Health
Social Work
A public health social worker is a graduate-
prepared social worker whose primary
practice fulfi lls core public health func-
tions within a public or private agency.
Although it includes all of the 10 essential
public health functions, public health social
work practice focuses on interventions to
strengthen communities, families, and indi-
viduals to promote health, well-being, and
functioning and minimize disability and
institutionalization.
Source: Adapted from Public Health Social Work
Standards and Competencies (2005).
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66 Foundations of Social Work in Health Care
communities in which they lived. For exam-
ple, Jane Addams, a cofounder of Hull House
in Chicago, ran for and was elected to be the
public sanitarian in her ward. She worked to
establish rubbish removal, clean water, and
sewage management. At Hull House and at
the Henry Street Settlement in New York,
founded by Lillian Wald (1887–1940), resi-
dents taught hygiene and other health-pro-
moting behaviors to the community (Gordon,
1994). These social reform movements, which
provided one of the foundations for the social
work profession, served to inspire areas within
public health such as community health, pub-
lic health nursing, occupational health, and
environmental health.
One resident of Addams’ Hull House was
Alice Hamilton, a professor at the Woman’s
Medical School of Northwestern University.
While a professor of pathology and living at
the Hull House, Hamilton became interested
in the working conditions and occupational
exposures of low-income residents. Her work
in industrial hygiene led to the creation of the
Occupational Disease Commission of Illinois
and her position as the fi rst female professor
at Harvard University. Hamilton was a pioneer
in the emerging fi eld of toxicology.
Healthy People 2020
Beginning in 1980 and continuing through
each subsequent decade, DHHS has developed
successive sets of national health promotion
and disease prevention goals and objectives,
the most recent of which is Healthy People
2020. The goals of Healthy People 2020 are
to (a) eliminate preventable disease, disabil-
ity, injury, and premature death; (b) achieve
health equity, eliminate disparities, and im-
prove the health of all groups; (c) create social
and physical environments that promote good
health for all; and (d) promote healthy devel-
opment and healthy behaviors across every
stage of the life cycle (Healthy People 2020,
n.d. a). Figure 4.1 displays the Action Model
Innate individual
traits: age, sex,
race, and
biological
factors
Interventions
Determinants of Health
Assessment, Monitoring,
Evaluation, and Dissemination
Action Model to Achieve Healthy People 2020 Overarching Goals
• Policies
• Programs
• Information
Outcomes
• Behavioral outcomes
• Specific risk factors,
diseases, and conditions
• Injuries
• Well-being and health-
related Quality of Life
• Health equity
Across life course
Ind
ivid
ual behavior
So
ci
al,
fa
mil
y, an
d community networks
Liv
ing
and
working conditions
Bro
ad s
ocial, e
conomic, cultural, health, and environm
ental conditions and policies at the glob
al, n
atio
na
l, s
ta
te
, a
nd
lo
ca
l l
ev
el
s
Figure 4.1 Action Model to Achieve Healthy People 2020 Overarching Goals (Healthy People 2020, n.d. a.).
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Public Health and Social Work 67
to Achieve Healthy People 2020 Overarching
Goals (Healthy People 2020, Phase I Report).
The objectives for meeting these goals are di-
vided into a broad spectrum of 38 topic areas.
These objectives can be accessed through
the Healthy People 2020 (n.d. b) home page
(www.healthypeople.gov/hp2020).
The goals and objectives of Healthy People
2020 are guidelines for policy and prevention
strategies. Many if not most of the topic areas
and their objectives are arenas in which pub-
lic health social workers practice and provide
unique expertise to the development and im-
plementation of public health prevention poli-
cies and programs.
Although it is widely accepted that social
factors are major determinants of health, the
current Healthy People 2020 initiative has
only proposed social determinants of health
as an objective area. As of this writing, any-
one can create an online profi le and propose a
social determinant of health objective. With-
out set objectives, social objectives to reduce
the number of children in poverty, reduce the
number of children who go to bed hungry, and
decrease the number of people who are un-
employed are missing from the nation’s pub-
lic health objectives, yet all are recognized as
social determinants of health care. Examples
of current social determinant–associated
objectives are provided in Box 4.2. As the
primary providers of psychosocial interven-
tions, public health social workers should
take the lead in advocating for inclusion of
social objectives in subsequent versions of
Healthy People.
Box 4.2 Example Healthy People 2020
Objectives Associated With Social
Determinants of Health
Access to Health Services
• Increase the proportion of people with
health insurance.
• Reduce the proportion of individuals
who experience diffi culties or delays in
obtaining necessary medical care, dental
care, or prescription medicines.
Adolescent Health
• Increase educational achievement of
adolescents and young adults.
• Increase the percentage of adolescents
who are connected to a parent or other
positive adult caregiver.
Early and Middle Childhood
• Decrease the percentage of children who
have poor-quality sleep.
• Increase the proportion of children who
are ready for school in all fi ve domains of
healthy development.
Educational and Community-Based
Programs
• Increase high school completion.
• Increase the proportion of elementary,
middle, and senior high schools that
provide comprehensive school health
education to prevent health problems
in these areas: unintentional injury;
violence; suicide; tobacco use and
addiction; alcohol or other drug
use; unintended pregnancy, human
immunodefi ciency virus (HIV)/acquired
immunodefi ciency syndrome (AIDS),
and sexually transmitted disease
infection; unhealthy dietary patterns; and
inadequate physical activity.
Environmental Health
• Reduce the proportion of occupied
housing units that have moderate or
severe structural problems.
• Increase the proportion of the population
in the U.S.–Mexico border region
that has adequate drinking water and
sanitation facilities.
Family Planning
• Increase the proportion of females at
risk of unintended pregnancy who used
contraception at most recent sexual
intercourse.
• Increase the proportion of adolescents
who received formal instruction on
reproductive health topics before they
were 18 years old.
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68 Foundations of Social Work in Health Care
INTERSECTION OF SOCIAL
WORK AND PUBLIC HEALTH
As discussed in the introduction to this chapter,
public health provides a specifi c orientation and
framework for the various professionals who
practice within the public health arena. Public
health social workers fi ll many different posi-
tions, including: case managers; health educa-
tors; program planners and evaluators; grant
writers; administrators and program directors at
the federal, regional, state, and local levels; and
executive directors of not-for-profi t agencies.
Social workers now work in a variety of areas
that once would have been considered the pur-
view of public health, such as wellness, obesity
prevention, physical activity, and smoking ces-
sation (Curry et al., 2007; Lawrence, Hazlett, &
Hightower, 2010; Leung et al., 2007; Thomas,
Supiano, Chasco, McGowan, & Beer, 2009)
The public health arena has expanded to defi ne
issues important to social work, such as domes-
tic violence and sexual assault, as signifi cant
public health problems (Kimerling et al., 2010;
Saftlas et al., 2010; Silverman et al., 2010).
Beginning in 1996, a group of public health
social workers convened to develop a useful
defi nition of public health social work. They
debated whether public health social workers
are defi ned by training, job, or a combination
of both. What, they asked, are the common
attributes of the person and the job? The de-
bate led to a brief and a longer defi nition and
a philosophy for public health social work.
The defi nitions, philosophy, and model prac-
tice standards and core competencies can be
found online at http://oce.sph.unc.edu/cetac/
phswcompetencies_may05
Social work practice in public health dif-
fers from clinical social work practice in two
distinct ways:
1. Public health social work practice emphasizes
health promotion, protection from environ-
mental harms, and disease prevention.
2. Public health social work practice targets
populations rather than individuals and
groups (Watkins, 1985).
Social workers bring to public health practice
skills, such as community assessment, and social
work values, such as the promotion of social jus-
tice, a focus on the most vulnerable populations,
recognition for the need of cultural competence,
and sensitivity to race and ethnicity. For example,
public health social workers understand the need
to tailor interventions to specifi c populations.
Interventions developed for White, middle-class
populations may not be effective with lower-in-
come, minority populations.
The need for tailoring interventions to spe-
cifi c populations has been supported by several
researchers (Chin, Walters, Cook, & Huang,
2007; Green & Glasgow, 2006; Klesges,
Dzewaltowski, & Glasgow, 2008). Chin and
colleagues noted that few interventions work
at the population level (are generalizable) and
that interventions must be culturally tailored
to work with each social, cultural, or racial/
ethnic group. Green and Glasgow developed
review criteria to assess the external validity
and potential generalizability of interventions.
Elements of the criteria include descriptions
of representativeness of participants and set-
tings, extent of program adaptation and im-
plementation of intervention content, and
maintenance of intervention effects and long-
term sustainability of programs. Klesges and
colleagues applied the Green and Glasgow
model to review the external validity of child-
hood obesity prevention studies. They found
that there remains a need for researchers to
include external validity measures in their
studies. They specifi cally identify three main
criteria: “(1) representativeness of participants
at the child, setting, and staff levels; (2) ro-
bustness of intervention effects across differ-
ent subgroups, delivery staff, and conditions;
and (3) replicability of results across settings
and under different contexts” (Klesges et al.,
2008, p. 222).
Epidemiology and the Determinants
of Health
The foundation of public health research is
epidemiology, the study of the distribution and
determinants of disease in populations. Public
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Public Health and Social Work 69
health uses evidence-based interventions—
those that are developed and verifi ed through
research—to control and prevent epidemics
and disease outbreaks.
A focus of epidemiological studies has
been to examine the determinants of health
and well-being. As stated in Healthy People
2020:
[H]ealth determinants are the range of per-
sonal, social, economic, and environmental
factors that determine the health status of in-
dividuals or populations. They are embedded
in our social and physical environments. So-
cial determinants include family, community,
income, education, sex, race/ethnicity, geo-
graphic location, and access to health care,
among others. Determinants in the physical
environments include our natural and built
environments. (n.d. a)
Lung cancer is a useful example to dem-
onstrate the interactions of health determi-
nants. Biologically, lung cancer is caused by
a manifestation of malignant cells. Some in-
dividuals may have a genetic predisposition
to developing cancer, but other, nonbiologic
causes of lung cancer exist. The most impor-
tant additional determinant of lung cancer is
the behavior of an individual. Cigarette smok-
ing is the leading cause of lung cancer and is
associated with 87% of cases (National Can-
cer Institute [NCI], n.d). Secondhand smoke,
or passive smoking, is an example of a physi-
cal environmental cause of lung cancer. Bars
where smoking is accepted and where people
often socialize are another physical environ-
ment that leads to lung cancer. Although not
as powerful a factor in the development of
lung cancer as smoking, exposures to indoor
and outdoor airborne toxins, such as ash, dust,
asbestos, and particulate matter, represent an-
other cause.
These latter correlates with lung cancer
also are associated with social determinants of
health. In developing nations, it is common for
women to cook over open stoves, using wood-
or dung-fueled fi res. The women and their
young children have direct exposure three
times per day, as meals are prepared. Likewise,
asbestos has been linked causally to mesothe-
lioma, a specifi c type of lung cancer. Asbestos
is any of several silicate minerals mined for
their fl ame-retardant and insulating properties.
Many people in developed nations have been
exposed during building renovations involv-
ing old insulation. Asbestos has been linked
to some of the lung conditions currently being
experienced by fi rst responders to the World
Trade Center on September 11, 2001. In de-
veloping nations, the mining of these silicate
minerals continues, usually by impoverished
workers using little or no airway protection.
Lung cancer rates, like those of many dis-
eases, vary by race and socioeconomic status
(SES). In the United States, lung cancer rates
in the African American community are higher
for both males and females compared with the
White American community (NCI, 2010). The
rate ratios for both men and women were higher
among those with less than a high school edu-
cation than for those with a college education
(3.01 and 2.02, respectively), and incidence
rates were 1.7 times higher among those with
incomes below $12,500 than for those with
incomes above $50,000 (Clegg et al., 2009).
A number of social factors promote smoking.
When smoking is acceptable in one’s peer
group, the social environment promotes that
activity (Lakon, Hipp, & Timberlake, 2010).
An example of a social factor is the placement
of bright and colorful cigarette advertisements
at children’s eye level in stores, thus enticing
the next generation to become smokers (Havi-
land & Sember, 2004). Public health efforts
were effective in eliminating the use of mar-
keting strategies directed at children, such as
cartoons in advertising (Schooler, Feighery, &
Flora, 1996).
Two overarching determinants of health are
the macrolevel issues of policies and interven-
tions and access to quality health care. Public
health policies address health promotion and
disease prevention. Some prevention policies
to discourage tobacco use include smoke-free
buildings and federal, state, and local laws that
prohibit tobacco use where people work, espe-
cially in airplanes and restaurants. In addition
to reducing smoking behavior, these types of
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70 Foundations of Social Work in Health Care
restrictions also are designed to protect em-
ployees from constant exposure to secondhand
smoke.
Access to care is especially important be-
cause the later that cancer is diagnosed, the
worse its prognosis. Access to diagnosis and
treatment is limited not only by lack of health
insurance but also by other social and environ-
mental factors. Although the passage of the
Patient Protection and Affordable Care Act
(PPACA) in March 2010 requires that every-
one have insurance by 2014, it does little to
address other issues of access to care (Kaiser
Family Foundation, 2010). System and insti-
tutional barriers limit access to health care
especially for lower-income and minority
families (Dai, 2010). System barriers include
inadequate capacity to serve the populations,
and institutional barriers include problems in
the organization and delivery of care. Some
system factors for lower-income people are
the limited numbers of health-care providers
serving inner cities and rural areas and limited
safety-net clinics for those who lack insurance.
Clinic hours held only during the workday are
an institutional barrier. Another institutional
barrier is the lack of accommodation to com-
munication needs of non-English speakers.
Research on disparities in access to health
care based on race, ethnicity, and language for
those who are insured has shown that Span-
ish speakers are less likely to get health care
than their English-speaking peers. These fi nd-
ings are consistent for physician visits, mental
health services, mammograms, and infl uenza
vaccinations (Fiscella, Franks, Doescher, &
Saver, 2002; Weech-Maldonado et al., 2003).
Many facilities have few interpreters, and pro-
viders sometimes rely on family members,
often children, to translate.
COMMON VALUES
Two values shared by social work and public
health are the elimination of health disparities
and the promotion of social, economic, and
environmental justice. Health disparities exist
between and among populations defi ned by
race or ethnicity, gender and gender identifi –
cation, SES, education, employment or insur-
ance status, disability status, and geography.
Disparities also are found in screening, inci-
dence, mortality, survivorship, and treatment
(Gehlert, Mininger, Sohmer, & Berg, 2008).
Elimination of Health Disparities
At the request of Congress in 1999, IOM con-
vened a panel of experts to examine the ex-
tent to which racial and ethnic minority health
disparities are attributable to disparities in
health-care services. Their report, Unequal
Treatment, found a consistent body of research
demonstrating minority disparities in health
care. Minorities were less likely than White
American patients to receive appropriate care
for heart disease, such as cardiac medications
and bypass surgery, but more likely to receive
less desirable medical procedures, such as
lower limb amputations for diabetes (Smed-
ley, Stith, & Nelson, 2003). Keefe (2010) dis-
cusses racial and ethnic health-care disparities
in seven health categories or conditions from
a public health social work perspective: heart
disease and stroke; cancer; HIV/AIDS; respi-
ratory diseases; diabetes; maternal, infant, and
child health; and mental health and mental
disorders. For further information on social
inequalities and health, please see the Public
Broadcasting Series Unnatural Causes (www
.pbs.org/unnaturalcauses/index.htm).
The overall health of an individual and the
population is determined by a wide array of
factors—from broad social economic, cultural,
health, and environmental factors to individual
behaviors. Interventions such as policies, pro-
grams, and health interventions work across
the life course and the social-individual envi-
ronments to infl uence outcomes. Urie Bron-
fenbrenner’s ecological systems theory (1979),
a precursor to both person-in-environment and
social epidemiology, outlines the infl uence of
systems from the individual level (micro) to
the cultural level (macro) with the inclusion of
life course (chronosystem).
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Public Health and Social Work 71
In addition to health inequalities related to
race and ethnicity, it has long been known that
health disparities are related to SES; the lower
a person’s SES, the more likely that person is
to have poor health. Recent research by Strin-
ghini and colleagues (2010) found that health
behaviors can account for some but not all of
the SES effect. However, poor health behav-
iors related to diet, physical activity, and al-
cohol consumption are thought to be partially
related to environmental stressors, which may
be aggravated by low SES (Dunn, 2010).
Health inequalities also are place based, as
outlined in reference to access to care. Spatial
infl uence also is captured in proximity and ac-
cess to healthy environments, not just places
of care. Mitchell and Popham (2008) found
income-associated health inequalities in Eng-
land but report that proximity to green spaces
(i.e., parks) moderates this association. The
incidence rate ratio of all-cause mortality and
circulatory disease, on average, decreased the
closer one lived to green space. This decrease
was slight for those of high income but was
quite steep for those in the lower quartile of
income (see Figure 4.2).
Racially based health disparities are particu-
larly apparent when examining three important
maternal and child health status indicators: in-
fant mortality (IM), low birth weight (LBW),
and maternal mortality. IM is one of the leading
indicators used to measure a country’s health.
Although the overall U.S. rate of IM dropped
to 6.75 per 1,000 live births in 2007, this rate
is still short of the Healthy People 2010 ob-
jective of reducing IM to 4.5 per 1,000 (Xu,
Kochanek, Murphy, & Tejada-Vera, 2010).
The 2008 IM rate places the United States
33rd among nations monitored by the United
Nations Populations Division (United Nations
Figure 4.2 Exposure to Green Space Mediates the Effect of Income on All-Cause
and Circulatory Disease Mortality
Source: From Mitchell and Popham (2008).
2.2
All-cause mortalityA
In
ci
de
nc
e
ra
te
ra
tio
2.0
1.8
1.6
1.4
1.2
1.0
Income group 2
Income group 3
Income group 4
2.6
Deaths from circulatory diseaseB
In
ci
de
nc
e
ra
te
ra
tio
2.4
2.2
2.0
1.6
1.8
1.4
1.2
1.0
Group 1 (least) Group 2 Group 3
Exposure to green space
Group 4 Group 5 (most)
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72 Foundations of Social Work in Health Care
Department of Economic and Social Affairs,
Population Division, 2007). The IM rate was
2.4 times greater in African American than in
White American infants in 2007 (Mathews &
MacDorman, 2010). LBW—the second lead-
ing cause of IM—rose to 8.3% in 2007, the
highest level reported in the United States for
four decades. LBW rates for non-Hispanic Af-
rican Americans was 14.0%, nearly double the
rate for non-Hispanic White Americans (7.3%)
in 2006 (Martin et al., 2009). Maternal mortal-
ity for African American women was 26.5 per
100,000 live births, 2.7 times greater than the
rate for White women (10.0 per 100,000) (Xu
et al., 2010).
Place-based health disparities are also
prevalent and often are tied to racial and socio-
economic status. Food deserts—neighborhoods
with limited access to healthy food—have been
identifi ed in many low-income communities of
color across the United States (Walker, Keane,
& Burke, 2010). Disparities have been identi-
fi ed in the proximity and access to parks and
natural open space for recreation, psychological
restoration, and social health (Floyd, Taylor, &
Whitt-Glover, 2009; Hartig, 2008). Place also is
tied to inequalities in the prevalence and main-
tenance of chronic diseases including diabetes
(Schootman et al., 2010), cancer (Freedman,
Grafova, & Rogowski, 2011), HIV/AIDS and
cardiovascular diseases (Nazmi, Diez Roux,
Ranjit, Seeman, & Jenny, 2010).
Recognizing the vast health inequities
across the world, WHO established the Com-
mission on Social Determinants of Health
(CSDH) in 2005. CSDH fi nds that health dis-
parities are a matter of social justice and are
created not only by policy but also by unequal
distributions of power and wealth. In their fi nal
report, CSDH offers three principles of action
to close the gaps in health:
1) Improve the conditions of daily life—the
circumstances in which people are born,
grow, live, work, and age. 2) Tackle the in-
equitable distribution of power, money, and
resources—the structural drivers of those
conditions of daily life—globally, nationally,
and locally. 3) Measure the problem, evaluate
action, expand the knowledge base, develop
a workforce that is trained in the social de-
terminants of health, and raise public aware-
ness about the social determinants of health.
(CSDH, 2008, p. 2)
Promotion of Social, Economic,
and Environmental Justice
Some current U.S. policies and inaccessibility
to quality health services lead to social, eco-
nomic, and environmental injustice. Social,
economic, and environmental inequalities are
determinants of disparities in health status.
Thus, social work and public health both aim
to promote changes that will lead to a more
just society.
Social and physical environments that
exist in poor neighborhoods, such as those
in the inner city, contribute to adverse health
outcomes. For example, the lack of job op-
portunities creates a situation in which a neigh-
borhood may tolerate sales of illegal drugs in
order to bring in suffi cient income to support
families. Drug sales in a community lead to
addiction and its sequelae, such as illegal ac-
tivities that lead to violent behavior, morbidity,
and mortality.
A number of social factors, including the
ubiquitous stressors of prejudice and poverty,
also can lead to poor health status. Krieger
(2003, 2005) has been conducting research on
racism and health status for many years. She
characterizes racism as one of the key fac-
tors in establishing health status and identifi es
fi ve pathways through which racism can harm
health. These include: (1) economic and social
deprivation; (2) exposure to toxins; (3) so-
cially infl icted trauma; (4) targeted marketing
of products harmful to health, such as alcohol,
tobacco, and illicit drugs; and (5) inadequate
or degrading medical care. In various studies,
Krieger and her colleagues have shown the
effects of perceived racism on differences in
LBW and IM rates between African Ameri-
can and White American women (Mustillo
et al., 2004) and how racism plays into police
violence (Cooper, Moore, Gruskin, & Krieger,
2004). Other groups, such as minority religions
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Public Health and Social Work 73
and those with different gender expression and
identifi cation (i.e., the lesbian, gay, bisexual,
and transgendered [LGBT] community), also
are oppressed and particularly vulnerable to
system and institutional barriers to primary
and secondary care.
Social epidemiology has been used as a tool
to explain disparities within racial and ethnic
groups. A study among middle-class African
American women in Chicago found that birth
outcomes were better for those living in pre-
dominantly African American census tracks
compared with those living in racially mixed
areas. The researchers concluded that “the posi-
tive effects of a better socioeconomic context
may be countered for minority women by the ad-
verse effects of racism or racial stigma” (Pickett,
Collins, Masi, & Wilkinson, 2005, p. 2229).
Another example of a socially created health
condition is obesity. The National Nutrition and
Health Survey (NHANES) tracks the rates of
overweight, obese, and extremely obese (mea-
sured using Body Mass Index [BMI], calculated
as the ratio of kilograms/meter2) in American
adults (Ogden & Carroll, 2010b). The preva-
lence of overweight (BMI = 25.0–29.9) in
adults 20 years and older has remained stable
at about 34% since 1960. The prevalence of
obesity (BMI ≥ 30) and extreme obesity (BMI
≥ 40) have more than doubled during the same
time frame. In the 1960 to 1962 National Health
Study, 13.4% of adults were obese; in the 2007–
2008 NHANES, 34.3% were. Extreme obesity
has risen in prevalence from 0.9% in 1960–1962
to 6% in 2007–2008.
Disparities in the prevalence of obesity
occur by race/ethnicity and gender (Ogden &
Carroll, 2010b). In the 2007–2008 NHANES,
prevalence was highest for non-Hispanic
Black women (49.6%) and Hispanic women
(45.1%) and lowest for non-Hispanic White
men (31.9%). Clusters of obesity also is re-
vealed geographically. The American South,
especially the deep South and southern Appa-
lachia, have the highest rates of adult obesity.
Although the rates have increased over the past
20 years, the distribution of obesity remains
mostly the same (see Figure 4.3).
1999
Obesity Trends* Among U.S. Adults
BRFSS, 1990, 1999, 2009
(*BMI ≥ 30, or about 30 lbs. overweight for 5’4” person)
2009
1990
NoData <10% 10%–14% 15%–19% 20% –24% 25% –29% 30%≥
Figure 4.3 Spatial Distribution of Obesity Across the United States
Source: Adapted from Centers for Disease Control and Prevention (2010). Data for fi gure was derived from
Behavioral Risk Factor Surveillance System, CDC.
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74 Foundations of Social Work in Health Care
Childhood obesity is a special concern of
U.S. fi rst lady Michelle Obama. (Obesity in
children is defi ned as BMI greater than or
equal to sex- and age-specifi c 95th percentile
from the 2000 CDC growth charts [Ogden
& Carroll, 2010a].) NHANES has measured
obesity in three age groups of children since
the 1970s. The 1971–1974 NHANES reported
the prevalence of obesity in children ages 2 to
5 years to be 5.0%; in children 6 to 11 years,
4.0%; and in children 12 to 19 years, 6.1%. The
prevalence in the 2007–2008 NHANES dou-
bled for the youngest children (10.4%), grew
nearly fi ve times for children 6 to 11 years old
(19.6%), and tripled for children 12 to 19 years
old (18.1%). Similar to adults, adolescents
(12–19 years old) exhibit inequalities in the
distribution of obesity by race, ethnicity, and
gender. The prevalence of obesity among non-
Hispanic African American girls and Mexican
American boys are highest (29.2% and 26.8%,
respectively). The prevalence is lowest among
non-Hispanic White girls (14.5%) and boys
(16.7%) (Ogden & Carroll, 2010a).
Larger restaurant portions, fast food, and
lack of exercise are some causes for the in-
creased size of Americans. Busy work sched-
ules limit parents’ time to prepare healthy
meals, leaving them to rely on high-fat cafete-
ria offerings for lunch (Eliadis, 2006). Time
is spent on video games or watching televi-
sion rather than on exercise. Cecil-Karb and
Grogan-Kaylor (2009) studied the effects of
parents’ perceptions of neighborhood safety
on children’s BMI. They found a signifi -
cant association between perceptions of poor
neighborhood safety and BMI. This associa-
tion was mediated by television watching. An-
other factor associated with increased time
indoors is the suburbanization and driving
culture throughout most of the United States.
Many social and policy practices and decisions
enacted in the fi rst half of the 20th century
have led to the urban–suburban dichotomy
witnessed today in many cities.
As automobiles became more ubiquitous
and vehicle traffi c increased in city centers,
the number of pedestrian–vehicle accidents
increased along with other sequelae. Families
began moving to the suburbs so that children
would have more room to play outdoors, away
from city traffi c (Frank, Engelke, & Schmid,
2003). At the same time, the practice of redlin-
ing became acceptable. Redlining is the pro-
cess by which lending institutions (generally
for home mortgages) demarcate areas of cities
to raise and lower interest rates and discrimi-
nate in loan dealings based on characteristics
such as ethnicity or income (Gee, 2008). Over
decades, such processes drained the city-center
tax base and left downtowns with low-income,
predominately minority residents while the
suburbs became majority Caucasian and
middle income. The residents leaving urban
centers for the suburbs took with them their
tax base. Cities were left with limited fi nancial
resources to support schools, parks, and pub-
lic services. In turn, more people moved away
from urban centers, creating a phenomenon
that is only now being halted.
However, 70 years removed from the be-
ginning of this exodus, families in the suburbs
are suffering from a lack of physical activity.
Suburban families now are forced to commute
many miles by automobile for long periods, re-
stricting active transportation, such as walking
or bicycle riding. Time spent in the car is not
replaced with play or physical activity when
families return home. Meanwhile, downtowns
across the United States are making efforts to
revitalize with walkability as a core principle
of regeneration. Cities are passing Complete
Streets bills and ordinances that require streets
to be multipurpose, including mixed-income
residences, commercial space, and retail. The
infrastructure of streets also is changing, with
better-designed crosswalks and bike lanes and
wider sidewalks (Frank et al., 2003).
Public health social workers can contrib-
ute to the development of public policies,
such as making neighborhoods safe and in-
viting, by helping to determine the social and
economic forces that encourage overweight
and obesity. As cities work to reclaim their
downtowns, many are turning to trendy loft
districts to attract middle-income, and blue-
collar workers. Unfortunately, this process is
more akin to gentrifi cation than mixed-income
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Public Health and Social Work 75
development. Wealthy developers are purchas-
ing inexpensive buildings and developing a
former low-income area for middle- to high-
income residents with little consideration for
the current residents. Low-income residents
are forced to relocate, often away from social
service providers proximate to their old neigh-
borhoods. Cities usually benefi t fi nancially
from gentrifi cation because of the increase
in tax base and “clean” downtown neighbor-
hoods. However, the process continues to seg-
regate along racial and socioeconomic lines
(for more, see Slater, 2006).
Public health social workers have suc-
cessfully advocated changes in public policy
to improve the health status indicators in the
population, particularly for the disadvantaged,
such as the Medicaid expansions under the
Omnibus Budget Reconciliation Act of 1989.
This and the expanded State Children’s Health
Insurance Program (SCHIP), established
as an optional program for states in 1997,
are examples of policies that promote social
and economic justice. In February 2009, the
SCHIP program was reauthorized, and as of
June 30, 2010, all states and territories and the
District of Columbia had implemented SCHIP
(Centers for Medicare and Medicaid Services,
2010).
Changing the distribution of fi nancial re-
sources and promoting socially just actions
would reduce the disparities in health status of
vulnerable populations (McGinnis, William-
Russo, & Knickman, 2002). Unfortunately,
these attempts have not all been success-
ful. The Medicaid expansion policies of the
1980s, which were intended to reduce health
disparities by increasing access to care for
low-income pregnant women, failed to reduce
the disparity in birth outcomes between Af-
rican American and White American women
(Martin et al., 2009; Mathews & MacDorman,
2010; Xu et al., 2010).
The social work profession is strongly in
favor of the need to achieve economic justice.
The Delegate Assembly of the National As-
sociation of Social Workers (NASW) meets
every three years to develop and publish the
public and professional policy statements for
the association. A prominent policy position
that has been included and updated by NASW
is for the development of public policies that
promote economic justice. NASW (2009)
continues to advocate on the issues of poverty
and access to health care for all. To achieve
a socially and economically just society will
require changes in American social values, but
it is a worthy goal of both public health and
social work.
COMMON METHODOLOGIES
FOR PRACTICE
Sound social work and public health interven-
tions and policy are evidence based. To arrive
at evidence-based practices, both fi elds rely
on strong research and evaluation of programs
and policies. One common approach used by
social work and public health is the commu-
nity assessment. Public health also uses social
epidemiology for program planning and evalu-
ation. Epidemiological methods used in public
health also could be used by social workers in
developing interventions at all levels of prac-
tice. Another tool is a geographic information
system (GIS), a software-based tool used in
social work and public health practice and re-
search to map spatial correlations, discrimina-
tions, and to identify areas of need.
Mussolino (2005) analyzed the NHANES
I to provide evidence of a prospective asso-
ciation between depression and hip fracture.
Interventions that target depression in elderly
people theoretically may impact the contribu-
tion of hip fracture to morbidity and mortality.
This is an example of how public health so-
cial work intervention might improve a public
health outcome. Another example is based on
data collected from the National Hospital Am-
bulatory Medical Care Survey, which estab-
lished the home as the predominant location
of injury for U.S. children. The researchers
recommend interventions targeting the home
environment to reduce the morbidity and mor-
tality from unintentional injury in U.S. chil-
dren (Phelan, Khoury, Kalkwarf, & Lanphear,
2005).
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76 Foundations of Social Work in Health Care
Community Assessment
Community assessment is a method of iden-
tifying the strengths and weaknesses in a de-
fi ned community. Members of the community
are involved in designing, implementing, and
analyzing the information gathered from as-
sessments. Other assessments are initiated by
public authorities in response to legal mandate
and may or may not involve community mem-
bers. In either case, the assessments help to
defi ne problems and gaps in services so that
the community and professionals can advocate
for improvements to existing programs and for
new policies and programs.
Comprehensive community assessments
use various methods to obtain data for analy-
sis. These methods include community sur-
veys, health impact assessments (see Box 4.3),
interviews with community leaders, and town
hall meetings. Data collection may be from
vital records of births and deaths, hospital dis-
charge information, and other data from public
health and social service agencies.
Because of their training, social workers are
well prepared to conduct community assess-
ments. Public health social workers contrib-
ute to public health assessments and in doing
so provide insights regarding the social con-
text of health and disease. Public health social
workers collaborate with other public health
professionals to apply social understanding to
interventions that are developed in response
to community assessment (Wilkinson et al.,
2002). For example, they participate in child
death review teams to provide the person-in-en-
vironment perspective. Community assessment
is also crucial to the development of culturally
competent social marketing strategies. A study
that explored factors linking at-risk African
Americans with health-promotion programs
found that, contrary to common perception,
the use of the African American church and the
use of a high-profi le person to deliver a mes-
sage actually may be counterproductive to ef-
forts to motivate people to use health prevention
programs (Icard, Bourjolly, & Siddiqui, 2003).
This fi nding is an example of how research
should guide evidence-based practice.
Box 4.3 Health Impact Assessments
Health impact assessments (HIA) were fi rst
established in Europe in the late 1990s.
The National Health Service of the United
Kingdom defi nes an HIA as a
developing approach that can help to
identify and consider the potential—or
actual—health impacts of a proposal on a
population. Its primary output is a set of
evidence-based recommendations geared
to informing the decision-making process.
These recommendations aim to highlight
practical ways to enhance the positive
aspects of a proposal, and to remove or
minimise any negative impacts on health,
wellbeing and health inequalities that may
arise or exist. (Taylor & Quigley, 2002,
p. 2)
Colleagues of the authors recently
completed an HIA in St. Louis, MO. The
core team consisted of two researchers
from the school of medicine, one from the
design and visual arts school, three from
social work, and one from public health,
in addition to one community partner.
The steering committee consisted of eight
stakeholders from the local community,
either residents or local practitioners
from schools, religious organizations,
municipalities, or nongovernmental
organizations. Finally, there were groups of
consultants, students, community surveyors,
and an advisory team, most of whom were
associated with social work and/or public
health. The team worked together to identify
a series of recommendations offered to
a redevelopment effort in a low-income
community of color.
Social Epidemiology
Social epidemiology—the study of the impact
of social factors on the distribution of health
and illness in a population—examines the role
of social variables on other known and ac-
cepted biological and behavioral factors that
shape the health status of a community (Oakes
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Public Health and Social Work 77
& Kaufman, 2006). Social epidemiology is a
research method that uses mostly quantitative
data to identify social determinants of health
and health outcomes. For example, Lynch
and Kaplan (2000) have conducted numerous
studies to better understand the impact of so-
cioeconomic position on health. Using the fi nd-
ings from their and others’ studies, they have
developed a theoretical model to explain these
effects. This model uses a life-course perspec-
tive and takes into account a broad range of
conditions and statuses, and it discusses the
variation in measures of socioeconomic posi-
tion. This variation demonstrates the challenges
of conducting social epidemiologic studies.
For example, Krieger and her colleagues have
studied the effects of racism on health (Krieger,
2005; Krieger, Chen, Waterman, Rehkopf, &
Subramanian, 2003). To do so, they had to de-
velop a measure of perceived racism, which,
although used by others, still is not universally
accepted because the experience of racial dis-
crimination can be thought of as subjective, and
thus the measure might not work the same way
in all settings. Others have examined race and
health of children and found important associa-
tions (Flores, Olson, & Tomany-Korman, 2005).
Some social epidemiologists use qualita-
tive as well as quantitative data. An exam-
ple is the Fetal and Infant Mortality Review
(FIMR), sponsored and monitored by MCHB
(Hutchins, Grason, & Handler, 2004; Koontz,
Buckley, & Ruderman, 2004). FIMRs are con-
ducted at the community level after a fetal or
infant death that cannot be attributed to a med-
ical cause—for example, sudden infant death
syndrome (SIDS). The purpose of an FIMR is
to gather medical and social information that
can be used to enhance the health and well-
being of women, infants, and families. That
information then can be used to improve com-
munity resources and service delivery systems
to reduce additional fetal and infant deaths.
FIMRs are conducted by examining medical
care data, autopsies, and assessments, often
completed by social workers, of the social en-
vironment of the pregnant woman and the in-
fant. Attention is given to housing, number of
adults and children in the household, and other
family resources. The data are reviewed by
transdisciplinary technical advisory commit-
tees that, in addition to physicians and nurses,
may include clinical social workers and com-
munity volunteers. Public health social work-
ers contribute to these reviews by interpreting
the social contexts in which deaths occur.
Geographic Information Systems
GISs allow for the spatial analysis of distri-
butions, trends, services, clusters, and so on.
Through a system of data management and
software, a person can utilize a GIS to map
information on scales from a neighborhood to
worldwide. These skills are taught to students in
many universities. For example, in a joint social
work and public health course at Washington
University in St. Louis that is built around a
community-based teaching model, students
work with community agencies in need of spa-
tial analysis. Past analyses have included mar-
ket research to analyze where donations most
often come from and where agencies might
better market their organizations to obtain
additional donations and funds. Two recent
projects mapped neighborhood assets, crimes,
and empty lots to identify the best locales for
service expansion. Another project mapped
the percentage of students receiving free and
reduced-price lunches across a city against the
location of summertime meal providers and
local soup kitchens (see Figure 4.4). This proj-
ect allowed the agency to identify communities
within the city that have a high proportion of
children who receive free and reduced-priced
lunch who also live in areas with limited access
to summertime and weekend food services.
This spatial analysis identifi ed neighborhoods
for the expansion of food provisions.
Community assessment, social epidemiol-
ogy, and GISs are tools that clearly identify
the social and physical environmental factors
in the determination of health status and dis-
crimination in a community. With the informa-
tion gleaned from using these methods, public
health social workers and other public health
professionals can work together toward the goal
of improving the quality of life of the public.
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78 Foundations of Social Work in Health Care
LEVELS OF PRACTICE
AND COMPONENTS
OF PREVENTION
At the micro, or direct-practice, level, public
health social workers implement public health
interventions using clinical social work skills or
provide social work services as part of a larger
public health program. At the mezzo, or indirect-
practice level, public health social workers de-
velop, implement, and administer public health
programs. At the macro level, public health
social workers contribute their knowledge of
psychosocial and cultural issues to the develop-
ment of public health interventions. They also
are involved in surveillance and evaluation of
programs that serve low-income and vulnerable
populations. Public health social workers are en-
gaged in the policy-making arena in conjunction
with other public health professionals.
Much of public health practice takes place at
the macro level. Social work and public health
administrators at the macro level of practice
use community-based assessments to develop
interventions. Public health practitioners may
use nonclinical social work interventions, such
as job programs and health-care reform, to
change the social environment. Public health
practitioners, including public health social
workers, conduct theoretical and intervention
research in order to advance a shared commit-
ment to evidence-based practice.
Components of Prevention
Disease prevention is divided into three levels:
primary, secondary, and tertiary (Schneider,
2000). Primary prevention is intended to pro-
tect us from injury and disease. Examples in-
clude the Back-to-Sleep national campaign for
the prevention of SIDS, immunizations against
childhood and other diseases, and automobile
restraints and airbags. Another primary pre-
vention is the imposition of large taxes on
Iowa
Missouri
Arkansas
Kentucky
Tennessee
Springfield
St. Louis
Chicago
Illinois
Indiana
St. Louis City County Children Receiving Food Baskets by OFS (Avg. for Jan. through Dec.)
Compared to Children in Poverty by Census Track, 2009
Operation Food Search
OFS Partner Agencies
Children Receiving Food Baskets
Kernel Density: Avg. for Jan. – Dec.
High Density
Low Density
Children in Poverty
Number
less than – 50
51 – 100
101 – 200
201 – 500
501 and greater
Data obtained from the U.S. Census 2000 and Operation Food Search
Map Created Hyunil Kim and Cecilia A. Zappa
Chesterfield
Meramec
Lafayette
Queeny
Missouri River
Bonhomme
Jefferson
Illinois
Clayton Hadley
University
Normandy
Norwood
Fergoson HallsFerry
St. Ferdinand
Spanish Lake
Lewis and Clark
Florissant
Northwest
Airport
Midland
Creve Coeur
Maryland Heights
MissouriMissouriMissouri
Gravois
St. Louis County St. Louis City
Tensson Ferry
Oakville
Lemay
Concord
Location
Figure 4.4 GIS Map Showing the Number of Children Living in Poverty per Census Track and the
Number of Children Receiving Food Baskets From Community-Based Agencies
Source: Reproduced courtesy of Operation Food Search, St. Louis, MO, and MSW students Hyunil Kim and Cecilia Zappa.
JWBT514_ch04.indd 78JWBT514_ch04.indd 78 9/21/11 7:42 PM9/21/11 7:42 PM
Public Health and Social Work 79
tobacco to limit its use by increasing the cost
of cigarettes and other tobacco products.
Secondary prevention is the early diagnosis
and treatment of disease and seeks to reverse
or retard a disease process from progressing.
Examples are Pap smears, mammograms, and
prostate-specifi c antigen tests to identify malig-
nant or premalignant states and intervene to ef-
fect a cure or slow the progression of the illness.
Tertiary prevention includes those actions
taken to minimize the effects of a disease and
prevent further disability. Periodic eye exams
to detect and treat diabetic retinopathy are a
type of tertiary prevention because they pre-
vent disability deriving from diabetes although
they do not treat the primary disease.
TYPES OF PUBLIC
HEALTH SOCIAL WORK
INTERVENTIONS
The intersection of the three levels of social
work practice with the three levels of prevention
is displayed in Figure 4.5. The public health
crisis of HIV is used to illustrate public health
social work interventions within the familiar
framework of micro, mezzo, and macro levels
of practice and components of prevention.
Primary Prevention of HIV at the
Micro, Mezzo, and Macro Levels
The roles of public health social workers in the
primary prevention of HIV at the micro level
include condom distribution in clinics, counsel-
ing women living with HIV about their health
and family planning, and participating in needle
exchange programs. At the mezzo level, public
health social workers administer community-
based programs for safe needle exchange and
condom distribution. Needle exchange has been a
controversial primary prevention intervention for
HIV, and public health social workers who advo-
cate for federal, state, and local policy to permit
this intervention are working at the macro level.
Secondary Prevention of HIV at the
Micro, Mezzo, and Macro Levels
Outreach and early intervention services are
particularly important to meet the needs of
Mic
ro
Mez
zo
Mac
ro
Components of Prevention
Levels of
Practice
Public Health Social Work
Model of Practice
Types of
Intervention
Knowledge SkillsValues
Condom
distribution
and sexuality
education
Community-based
needle exchange
and condom
distribution
programs
Advocacy for primary
prevention program
establishment
and funding
Counseling
and testing
Community-based
programs for
people with HIV
Advocacy for better
policies to increase
early detection and
treatment of HIV
Systematic mode
of adherence
counseling
for HAART
Cross-program
coordination for
local agency efforts
Advocacy for
funding program
such as Ryan White
Sec
ond
ary
Prim
ary
Tert
iary
Figure 4.5 Components of Prevention and Levels of Practice
JWBT514_ch04.indd 79JWBT514_ch04.indd 79 9/21/11 7:42 PM9/21/11 7:42 PM
80 Foundations of Social Work in Health Care
people living with HIV who are not receiv-
ing care. Many public health social workers
work in hospitals, local health departments,
and community-based programs that provide
counseling and testing for HIV. The Posi-
tive Start program in Missouri provides an
interface between the community HIV/AIDS
agency and the Department of Corrections. It
targets inmates living with HIV who are sched-
uled to be released (personal communication,
Cale Mitchell, executive director, Rain Central
Missouri, July 20, 2010). This mezzo program
creates a connection to clients by providing re-
ferrals for case management after release and
educates them about prevention when they re-
join society. Public health social workers who
fi ght discriminatory policies targeting people
with HIV, such as in employment and housing,
are working at the macro level.
Tertiary Prevention of HIV at the
Micro, Mezzo, and Macro Levels
Examples of tertiary prevention at the micro
level include direct-service case management
for medical services, securing resources to
enhance health outcomes (supportive services
such as housing and food vouchers), and mak-
ing referrals and providing payment assistance
for visits to infectious disease specialists or
HIV-focused physicians. Mezzo-level public
health social workers administer programs
that help people living with HIV obtain and
maintain stable and high-quality housing, for
example. Public health social workers oper-
ating in the research and policy arenas to ad-
vance improved programs for people living
with HIV are working at the macro level for
tertiary prevention.
PUBLIC HEALTH SOCIAL
WORK PRACTICE TODAY
Public health social work practice today is a
growing fi eld. There are social workers work-
ing in public health at all levels of practice and
with all components of prevention. The prac-
tice settings for public health social workers
refl ect the partnership between public health
and social work.
Practice Settings
Public health social workers do not practice
in isolation. Their practice, often on transdis-
ciplinary teams, takes place in host settings
that are usually public but also may be private.
Public settings include federal public health
agencies as well as state and local health de-
partments. At all three levels of government,
public health social workers work in various
policy-making and program positions. In ad-
dition, public health social work practice is
primarily at the population level. For example,
public health social workers work side by side
with public health environmental specialists
to ensure that safe housing is available to a
community of elders. They work with public
health nurses, physicians, and epidemiologists
to develop, implement, and evaluate programs
that serve all ages in the population. They
coordinate home visiting programs targeting
pregnant women at high risk for poor birth
outcomes.
Federal-level public health social workers
work in national and regional offi ces. They
create and administer regulations for policy
implementation and manage and provide over-
sight for grants, such as the MCHB grant and
Special Projects of Regional and National
Signifi cance and other federal grants. Some
public health social workers provide training,
and others conduct and use research to inform
evidence-based interventions. Federal public
health social workers act as liaisons to state
programs funded by block grants.
Public health social workers are found in a
variety of state-administered, federally funded
programs, such as the Title V Children with
Special Health Care Needs program. They
work as the intermediaries between state and
local health departments and other public
health agencies in managing federal pass-
through dollars. Public health social workers
provide management oversight for the pro-
grams and train managers to comply with fed-
eral mandates. Public health social workers at
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Public Health and Social Work 81
the federal and state levels also provide expert
testimony and advocate for public health pro-
grams when Congress and state legislatures
develop policy and budgets that will affect the
public’s health.
Local health departments are the work-
horses within the public health system, and
programs generally associated with these
agencies are the maternal and child health
programs (family planning, prenatal care,
well-child care, immunizations), disease sur-
veillance and treatment programs (tubercu-
losis control, sexually transmitted infections,
West Nile virus, pandemic infl uenza such as
H1N1), and environmental protection pro-
grams (restaurant inspection, vermin control,
air quality, milk safety, veterinary-borne dis-
ease). In addition, vital statistics (birth and
death certifi cates) often are housed within
local health departments.
At the local level, in public health depart-
ments as well as in private nonprofi t agencies,
public health social workers develop and im-
plement programs and provide direct service.
Some examples of direct practice are case
management for specifi c populations, home
visiting, immigrant health services, HIV/AIDS
counseling and testing, outreach to elderly
people for blood pressure screening and other
health services, and family planning and other
reproductive health care. Public health social
workers also work in community and migrant
primary care centers.
Private settings in which public health so-
cial workers are employed usually are located
in not-for-profi t agencies, such as Planned
Parenthood, domestic violence shelters, AIDS
organizations, and established agencies, such
as the YMCA/YWCA. Public health social
work practice in private settings usually does
not differ from practice in the public sector.
Private agencies often are created to provide
services that are limited or prohibited by
government regulations, such as counseling
clients about abortion. Some programs that
operate in the private sector are supported by
public funds and must comply with govern-
ment regulations that apply to the services
they provide. Although the practice settings
remain standard, the areas of concern for pub-
lic health social workers shift as social and
economic conditions change and as diseases
emerge.
Both public and private development agen-
cies offer another example of practice settings
for public health social work. The U.S. Agency
for International Development (USAID; www
.usaid.gov) is a federal government agency that
“supports long-term and equitable economic
growth and advances U.S. foreign policy objec-
tives by supporting economic growth, agricul-
ture, and trade; global health; and democracy,
confl ict prevention, and humanitarian assis-
tance.” Both for-profi t (e.g., Development Al-
ternatives, Inc.) and not-for-profi t (e.g., Hope
International, Response To Intervention, Cen-
ter for Agricultural Bioscience International)
private agencies also work in international
development to advance social, economic, and
environmental justice.
PREPARING TO BE A PUBLIC
HEALTH SOCIAL WORKER
There are various ways to prepare to be a pub-
lic health social worker. Although many public
health social workers do not have formal pub-
lic health education or public health degrees,
in applicants for these positions, employers
look for sound social work knowledge as it re-
lates to public health practice. Typically pub-
lic health social workers are trained on the job
and learn through continuing education and
participation in regional and national meetings
of public health social workers. The annual
meetings of the American Public Health As-
sociation (APHA) and the Association of State
and Territorial Public Health Social Workers
(ASTPHSW) are examples of learning and
networking opportunities for public health so-
cial workers.
Increasingly, social work students who
plan on practicing in public health enroll in
one of the existing dual or joint master’s in
social work/master’s in public health (MSW/
MPH) programs. These programs are grow-
ing in size and number. Courses completed in
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http://www.usaid.gov
http://www.usaid.gov
82 Foundations of Social Work in Health Care
one degree fulfi ll requirements in the second,
allowing students to meet all requirements
with a reduced credit load. In some schools,
practica and internships also are identifi ed
that meet the practice requirements of both
social work and public health, affording the
student experience in interdisciplinary or
transdisciplinary work. Each university and
each of the schools of social work and public
health has unique programs and admissions
processes.
For social work master’s students who are
considering public health practice but are not
at a school where a dual-degree program is of-
fered, there are many other ways to prepare.
Some schools offer social work concentra-
tions in pertinent areas, such as health, mental
health, and gerontology, which may include
some public health content. If there is a public
health school, department, or program at the
university or college, students can take courses
in that program as electives. If there is no
public health program, there may be one at a
nearby institution. Faculty members with pub-
lic health training can supervise independent
study. Students can work with fi eld placement
offi ces to fi nd a practicum experience in a pub-
lic health agency. Students are welcomed at
public health social work meetings and events,
often at reduced rates.
Certain areas of knowledge and resources
are particularly valuable. At the federal level,
the primary agency related to public health
social work practice is DHHS. Key agen-
cies in DHHS are the Health Resources Ser-
vices Administration (HRSA), the National
Institutes of Health, the Centers for Disease
Control and Prevention, the Administration
of Children Youth and Families, and the Sub-
stance Abuse and Mental Health Services
Administration. MCHB and the Offi ce of the
Surgeon General are located within HRSA.
Each of these agencies publishes documents
and reports with essential information about
public health. They also sponsor research to
develop new knowledge and test interven-
tions related to the public’s health. Two other
important federal programs within the De-
partment of Agriculture are Women, Infants,
and Children and the Supplemental Nutrition
Assistance Program (SNAP; formerly the
Food Stamp Program).
The federal, state, and local public health
programs all relate to one another, usually in
regard to the fl ow of funds. How federal regu-
lations affect state health departments and how
state and local health departments interact is
critical knowledge for public health social
workers.
As professionals, public health social
workers are expected to keep current with
changes in the fi eld. Important resources for
public health social workers are, as men-
tioned, APHA (including the Social Work
section) and ASTPHSW. Furthermore, there
are numerous texts, federal publications (such
as Healthy People 2020 and Morbidity and
Mortality Weekly Report), and journals that
will help inform public health social work-
ers. Some of the important journals are the
American Journal of Public Health, Health
& Social Work, Social Work in Health Care,
Social Work in Public Health, Maternal and
Child Health Journal, Public Health Reports,
and Health Affairs.
EMERGING ISSUES
FOR PUBLIC HEALTH
SOCIAL WORK
Global Issues of Disaster Preparedness,
Terrorism, Climate Change, Oppression,
and Social Justice
Terrorism, disasters, war, disease, climate
change, and social justice will shape the focus
of much public health social work practice
during the coming years. The attacks on the
World Trade Center and the Pentagon on
September 11, 2001, stimulated awareness
among Americans of both the reality of do-
mestic terrorism and the plights of oppressed
people in other parts of the world. The domes-
tic terrorism threat increasingly is an area of
practice for public health social workers who
are active members of disaster preparedness
and response teams (see Box 4.4).
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Public Health and Social Work 83
Box 4.4 Disaster Preparedness and
Response Teams: New Orleans Rebuilding
In fall 2005, the city of New Orleans suffered
a trifecta of disasters: the winds and rain
of Hurricane Katrina, the failure of the
protective levee system, and the pressures of
another storm, Hurricane Rita. The loss of
life, home, and livelihood was unprecedented
in American history, and images from the
disasters exposed the harsh realities of poverty
and vulnerability endemic in urban America.
With skills in population-focused
intervention, perspective of social systems,
and knowledge of individual assessments of
well-being, public health social workers have
played critical roles in the rebuilding and
recovery of New Orleans and its citizenry.
Looking back at the disasters for lessons and
improvements, public health social workers
have assisted in developing disaster plans and
coordination agreements at civic, community,
and agency levels. This assistance includes
the creation of services that are sensitive to
the unique needs of the city’s most vulnerable
groups in regard to transportation and shelter
provisions. In addition to these activities
focused on equipping the community for
future challenges, public health social
workers are active in recovery and resilience
as communities work to repair the social
fabric torn away by the trauma and struggle
associated with loss and displacement. Public
health social workers participate in recovery
and rebuilding in diverse roles, including:
• Assisting in civic engagement activities
that refl ect on the lessons of the disaster
and give voice to the displaced
• Advocating for homeowners and workers
to be protected from environmental
exposures during cleanup
• Coordinating safe housing and resources
for those returning home
• Addressing needs within social service
systems as population numbers and
composition changes
• Supporting the development of
community clinics and facilitating
primary health-care providers for
residents
The many roles of public health social
workers in New Orleans illustrate the demand
for professionals with these skills and the
valuable contributions they can make.
Source: Courtesy of Holly Scheib, PhD, MSW, MPH,
Director of International Programming, Tulane School
of Social Work, New Orleans, LA.
Disaster Preparedness and Response
Public health social workers have increasingly
played a role in disaster preparedness and re-
sponse. Disasters are “emergencies of a sever-
ity and magnitude resulting in deaths, injuries,
illness, and/or property damage that cannot
be effectively managed by the application of
routine procedures or resources” (Landesman,
2005, p. 1). Rounds and colleagues describe
three types of disasters: natural, technological,
and complex (Rounds, Caye, Ross-Sheriff,
Bailey, & Anderson, 2005; Rounds, Caye,
Walsh, Vaughn, & Anderson, 2008). Natural
disasters include acts of nature, such as fl oods,
hurricanes, tornados, volcanic eruptions, earth-
quakes, and landslides. Some technological
disasters are machinery or equipment malfunc-
tions, including factory explosions, nuclear
power plant failures, chemical spills, and air-
plane failures. Examples of complex disasters
are catastrophic events of intentional human
strategy, including acts of terrorism and war.
Emerging diseases, such as pandemic infl u-
enza, also can constitute disasters requiring
public health social work intervention.
Hurricane Katrina and the ensuing fl ood in
New Orleans (August 2005) represent both a
natural and technological disaster. The hur-
ricane itself was disastrous in areas such as
Biloxi, MS, yet produced minimal damage in
New Orleans. The lack of infrastructure and
failure to repair a levee there, however, re-
sulted in massive fl ooding in the Ninth Ward,
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84 Foundations of Social Work in Health Care
a lower-income, mostly African American
section of the city. Inadequate disaster plan-
ning for fl ooding exemplifi es how disasters
can disproportionately affect oppressed pop-
ulations, because people without cars have
limited ability to evacuate. The aftereffects
of hurricanes and fl ooding include disloca-
tion, separation from families, lack of medi-
cal and mental health care, and disruption of
education for children. Similarly, the British
Petroleum oil spill of 2010 not only led to eco-
logical disaster but produced physical, mental,
and economic health consequences for many
of the residents of the Gulf Coast affected by
Hurricane Katrina.
Public health social workers have de-
veloped detailed practice guidelines and
educational training modules for disas-
ter preparedness, reaction, and response.
Landesman’s 2005 text, Public Health Man-
agement of Disasters: The Practice Guide
(2nd ed.), provides a broad overview of types
of disasters and the role of public health in
agency and community planning, assessment,
and response. For example, in her chapter on
mental health strategies, she reviews the psy-
chological and emotional impact of disasters,
such as posttraumatic stress disorder, and
provides strategies for response. Landesman
identifi es three public health roles:
1. Help restore the psychological and
social functioning of individuals and the
community.
2. Reduce the occurrence and severity of ad-
verse mental health outcomes due to expo-
sure and technological disasters through
prevention, assessment, and response.
3. Help speed recovery and prevent long-term
problems by providing information about
normal reactions to disaster-related stress
and how to handle these reactions.
Disaster Preparedness for Public Health
Social Workers is a two-part online educa-
tional training module. Part I focuses on natu-
ral disasters (Rounds et al., 2005), and Part II
focuses on bioterrorism (Rounds et al., 2008).
Terrorism and Climate Change
In their 2009 article “Psychology in an Age
of Ecological Crisis,” Stokols and colleagues
outline the myriad ecological changes humans
currently face. The authors discuss global
threats to personal and societal well-being, in-
cluding terrorism and climate change. There is
a disconnect and latent fear between the two
seemingly unrelated challenges. A feeling of
helplessness has led some terror researchers
to coin the term pretraumatic stress syndrome
(Sinclair & LoCicero, 2010) and to study
helplessness depression (Berry, Bowen, &
Kjellstrom, 2010).
According to environmental psychology,
“people ideally strive to achieve optimal en-
vironments or those that maximize the fulfi ll-
ment of their needs and the accomplishment
of their goals and plans” (Stokols et al., 2009,
p. 187). In other words, humans strive for op-
timal environments for our own well-being.
Achieving such environments becomes ex-
traordinarily diffi cult when environments are
harmed or people are constantly afraid of the
threat of such harm. Public health social work-
ers are uniquely positioned to meet the chal-
lenges delineated by Stokols and colleagues.
New conceptualizations of human response
to ecological, social, and technological change
are needed, particularly those that
• Address the links between local and global
events.
• Encompass collective as well as individual
efforts to cope with impending threats.
• Incorporate an extended rather than narrow
time perspective.
GLOBAL ISSUES OF
OPPRESSION AND SOCIAL
JUSTICE
Oppression
Internationally, particularly in West Asia and
the Middle East, the health of women and
children has been highly compromised by war,
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Public Health and Social Work 85
isolation due to religious rules, and political
policies of western governments. Growing
numbers of public health social workers will
be needed as members of international teams
to improve the health of refugees and residents
in foreign nations. Foci of their work will be in
the maternal and child health arena to improve
women’s overall and reproductive health, psy-
chological capacity to deal with posttraumatic
stress disorder, and prevent and protect com-
munities from the effects of poverty and the
aftermath of war and terrorism.
In the United States, HIV/AIDS is now
being treated as a chronic disease. The abil-
ity of the United States and other industrial-
ized nations to achieve this state is due to the
wealth that supports provision of antiretroviral
drugs to people living with HIV. In develop-
ing countries, expensive drugs are beyond the
reach not only of HIV/AIDS populations but
also of governments with very limited mon-
etary resources.
In sub-Saharan Africa, the epidemic of
HIV/AIDS affects up to 25% of the popula-
tion in some countries. Social and economic
consequences of the disease can be addressed
by public health social workers. In response to
the President’s Emergency Plan for AIDS Re-
lief (PEPFAR), which was proposed in 2003,
Congress enacted the U.S. Leadership Against
HIV/AIDS, Tuberculosis, and Malaria Act of
2003 (PL 108–25). PEPFAR was reauthorized
on July 30, 2008. The new act (H.R. 5501, the
Tom Lantos and Henry J. Hyde United States
Global Leadership against HIV/AIDS, Tuber-
culosis, and Malaria Reauthorization Act of
2008) was signed into law, authorizing up to
$48 billion over the following fi ve years to
combat global HIV/AIDS, tuberculosis, and
malaria. The three goals of PEPFAR are to: (1)
support treatment for 2 million HIV-infected
individuals; (2) support prevention of 7 mil-
lion infections; and (3) support care for 10
million infected and affected by HIV/AIDS,
including orphans and vulnerable children
(U.S. President’s Emergency Plan for AIDS
Relief, n.d.). Interventions to meet these three
goals are within the scope of public health
social work practice. U.S. social workers can
participate on international transdisciplinary
teams to address these goals.
Another issue of oppression at global
and national levels is human traffi cking (see
Box 4.5). Human traffi cking has been described
as a form of modern-day slavery. Although
largely hidden, it is widespread throughout the
United States. Traffi cking can take the form
of forced prostitution; forced labor situations
such as domestic servants, nannies, sweatshop
workers, janitors, restaurant workers, migrant
farm workers, fi shery workers, hotel or tour-
ist industry workers, and beggars (U.S. De-
partment of Health and Human Services [US
DHHS], 2008a).
According to United Nations Offi ce on
Drugs and Crime (UNODC), the United States
is one of the highest “countries of destina-
tion” for human traffi cking victims globally
(UNODC, 2006), with estimates of 18,000
to 20,000 human beings traffi cked into and
through the United States every year (US
DHHS, 2008b). Although the exact number
of people affected globally is unknown, the
United Nations (2009/2010) estimates that
some 2.5 million people throughout the world
at any given time are the victims of human
traffi cking.
Public health social workers on the front-
line can play supportive roles by helping to
identify victims and by providing after-care
services, such as rehabilitation and reintegra-
tion (Hokenstad, 2010; Salett, 2006). These
might include services in housing, health
care, addictions treatment, immigration, food,
income, employment, and legal services. So-
cial workers also can play a preventive role
by educating potential victims, educating law
enforcement personnel about the issue, and ad-
vocating for the protection of this vulnerable
population. Community partnerships and sup-
port networks are critical for addressing and
overcoming the social exclusion of these vic-
tims (Hokenstad, 2010; Salett, 2006).
An example of such a partnership is the
Central Missouri Stop Human Traffi cking
Coalition, a multisector coalition made up of
members of the community and representa-
tives from different organizations, including
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86 Foundations of Social Work in Health Care
Box 4.5 Human Traffi cking
Three cases on identifying human traffi cking
from the Family Violence Prevention
Fund (2007) are presented in this box. As
you read each case, ask yourself: Is this
traffi cking? If so, what is it for (sex or labor
or both)? Here are some traffi cking red-fl ag
questions to ask about potential traffi cking
victims:
• How did they get here?
• What happened once they got here?
• Was there fraud or coercion?
• What were their real or perceived choices?
• Who is in control?
• Can they leave?
• Are they or their families threatened
(real or perceived)?
• Who has their documents or other things
that matter to them?
Joyce, a woman from the Philippines,
attended a dance school that is sponsored
by the Philippine government for overseas
workers. She has received her “certifi cation”
and signed up with a broker to be an
entertainer in Seattle. Upon her arrival,
she learned that her debt for “school and
transport into the United States” is $4,000.
To ensure that she pays off the broker, she
is required to stay at a home that the broker
owns. She owes $500 per month in rent to
live there and is not allowed to leave alone.
She also is required to dance at the broker’s
club, where she is paid $100 a week; her
rent and food is deducted from this amount.
Her debt keeps mounting, and she feels she
will never be able to pay it back. She is told
that she could earn more money at the club
by performing sexual acts with customers.
She does not have any immigration
documents. She agrees to work performing
sexual acts at the club to “pay back her
debt” to her employer and to send money
home to her family.
Nadia was interested in coming to the
United States and thought she could go to
school as well as work and make money
to support her family back home. She was
approached by a prominent businessman
in her community and told that he could
get her into the United States to work.
The businessman ran a mail-order bride
business. He placed Nadia’s picture in his
catalog and explained to Nadia that she
could come to the United States, marry an
American, and have all her dreams come
true. Tom has picked Nadia out of a catalog
to possibly be his wife. Tom gets a fi ancée
visa for Nadia and brings her into the
United States. After she gets here, Nadia
is too busy taking care of the house and
Tom’s children from a previous marriage to
go to school. Nadia works 16 hours a day
to keep the house clean and Tom and the
kids fed. Tom has Nadia’s visa in his safe
deposit box.
Carlos lived in Mexico and wanted to
come to the United States to work. He
paid a coyote (smuggler) to be brought
into the country. Once he crossed the
border, he was taken to a safe house where
a contractor picked him up with others
staying there and transported him to an
apple farm in Washington State where
he was to work. Carlos was told that the
cost of being smuggled into the United
States and transported to the farm was
$2,500. After he arrived at the farm, Carlos
understood that he could not leave and that
he would be beaten if he attempted to do
so. Carlos was paid for his work, but rent
and food costs were subtracted. Carlos
was moved to other farms throughout the
West Coast depending on the season. He
never felt he could leave the farms where
he lived.
Source: Adapted from the Family Violence Prevention
Fund, 2007.
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Public Health and Social Work 87
social service providers, local and federal law
enforcement, faith-based organizations, stu-
dents, educators, health-care providers, and
others. Its goal is to eradicate traffi cking and
provide supports for individuals through ac-
tivities such as
• Building a collaborative network of health
and social service providers, law enforce-
ment agencies, and nongovernmental orga-
nizations that can provide direct services
for victims of human traffi cking
• Providing training for professionals in
health care, social service, and law en-
forcement agencies regarding identifying
and appropriately responding to victims of
human traffi cking
• Conducting community awareness and edu-
cation events about the issue of human traf-
fi cking; raising funds for incidental victim
needs that cannot be provided by existing
social service or health-care agencies
• Providing assistance to community groups,
service providers, educators, and govern-
mental agencies who request information,
training, or other assistance regarding
human traffi cking
Although the coalition does not provide direct
services, the network established through its
partnering agencies also can assist with in-
vestigation and protection, temporary emer-
gency shelter, counseling and trauma therapy,
and immigration consulting (personal com-
munication, Deborah Hume, University of
Missouri Masters in Public Health Program,
August 12, 2010).
Social Justice
Access to Health Care
Since the passage of the PPACA of 2010,
there is the potential that universal access (via
reforms in health insurance) to health care
may be achieved in 2014. Until universal ac-
cess to health care is achieved in the United
States, public health social workers will re-
main active in efforts to bring comprehensive,
high-quality, and affordable health care to all.
Social workers must help to defi ne compre-
hensive care as including primary and second-
ary prevention as well as psychosocial health
assessments and interventions. Furthermore,
public health social workers can continue to
advocate for public policies that contribute
to the improvement the nation’s health, for
example, through antipoverty programs, jobs
programs, environmental health programs,
and education.
Under our current health-care delivery sys-
tem, the poor and elderly people will continue
to rely on publicly fi nanced programs: Medic-
aid, SCHIP, and Medicare. Public health social
workers will be involved in the evaluation of
these programs to propose and advocate for
changes that refl ect the social work values of
social and economic justice.
SCHIP and Medicaid cover children ages
0 to 21 years. Other than pregnant women
and certain low-income and groups with dis-
abilities, people between the ages of 21 and 65
have no access to publicly funded health insur-
ance. When the PPACA is fully implemented,
the state-based exchanges will provide an op-
portunity for these groups to obtain affordable
health insurance (Kaiser Family Foundation,
2010).
Local and global environmental justice is
an important component of social justice (see
Box 4.6). In Robert Bullard’s seminal book,
Dumping in Dixie: Race, Class, and Environ-
mental Quality (1990), the author outlines the
important connections among social justice,
the civil rights movement, and environmen-
talism. Bullard uses examples from across
the United States, especially the South, of
companies that locate waste and polluting fa-
cilities disproportionately in low-income and/
or minority communities. The U.S. Environ-
mental Protection Agency (U.S. EPA; 2010)
defi nes environmental justice as the “fair treat-
ment and meaningful involvement of all peo-
ple regardless of race, color, national origin,
or income with respect to the development,
implementation, and enforcement of environ-
mental laws, regulations, and policies” (www
.epa.gov/environmentaljustice/).
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http://www.epa.gov/environmentaljustice/
http://www.epa.gov/environmentaljustice/
88 Foundations of Social Work in Health Care
A broad range of environmental justice is-
sues and champions exist within the United
States. In the Bronx in New York City, Majora
Carter won a 2009 MacArthur “genius grant”
fellowship for her work as founder and direc-
tor of Sustainable South Bronx. The organiza-
tion worked to keep a solid waste management
plant out of the community and has expanded
parks, bike paths, and healthy food options
throughout the community. In Los Angeles,
numerous efforts support low-income minori-
ties, especially those living near the Port of
Los Angeles. Residents living near the port are
disparately exposed to diesel fumes from ships
entering the port and transfer trucks and trains
carrying goods from the port. Half a dozen
oil refi neries also are located there. The ZIP
code around the port has a population of over
50,000 residents: 85% are Hispanic; 6% are
over the age of 25 who have college degree;
and 27% live below the federal poverty line.
Organizations like Communities for a Better
Environment are working to advance poli-
cies such as restricting idling times of transfer
trucks, better notifi cation about refi nery fl are
events, and expanding public transportation
for area residents.
Globally, electronic waste, or e-waste,
has become a signifi cant issue. Developed
and developing countries dispose of bil-
lions of electronic devices per year. In 2005,
the EPA estimated that over 300 million
electronic devices were removed from homes
in the United States alone, representing
Box 4.6 Public Health Social Work and
the Benefi t Model
It is easy for social work and public health
students, professionals, and researchers to
focus on defi cit models, but one also can
work and research from a benefi t model.
Health promotion and nature contact is one
area in particular. Natural public open space
is receiving growing attention as a saluto-
genic resource for psychological, physical,
and social health. Natural environments
elicit improvements in mood and concentra-
tion, outpace entertainment and built urban
environments in perceived psychological
and attention restoration quality, increase
social interactions and social capital, and
correlate with self-reported health. Proxim-
ity and access to open space is reported to
decrease blood pressure and increase walk-
ing and physical activity levels.
Restorative environments are places that
afford visitors the opportunity to recover
from stress and otherwise renew personal
adaptive resources needed to meet the de-
mands of everyday life, such as the ability
to focus attention. In our daily lives, each of
us uses a variety of psychological and physi-
cal facilities. As demands on these facilities
compound across a time frame, need for
psychological and physical restoration in-
creases. If restoration does not occur, fatigue
may become symptomatic.
During the 1970s and 1980s, Yi-Fu Tuan
and E. O. Wilson described human evolu-
tionary and innate response to geographic,
topographic (Tuan), and biologic (Wilson) en-
vironmental attributes. Roger Ulrich followed
with reported expedited recovery time in
hospital patients with a natural view out their
window and articulated the psychophysiologi-
cal stress recovery theory. In the late 1980s,
Rachel and Stephen Kaplan introduced the
term restorative environments and the Atten-
tion Restoration Theory (ART)—that to be
restored, we must be away from the stressor
and be fascinated by our new environment,
and the environment have suffi cient scope
and compatibility to our needs. More recently,
the quality of life and psychosocial benefi ts of
parks and open space have been highlighted.
These studies have led to increased restorative
environment research. This is an opportune
time for public health social workers to help
in translating the research to practice via “pre-
scriptions” for clients to experience outdoor
and natural settings.
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Public Health and Social Work 89
approximately 2 million tons of e-waste (U.S.
EPA, 2008). Electronic devices, including cell
phones, MP3 players, laptops, and televisions,
are produced with metals such as lead, silver,
zinc, and mercury, all of which can leach into
groundwater when disposed of improperly
(Lincoln, Ogunseitan, Shapiro, & Saphores,
2007). Because properly disposing of or recy-
cling e-waste is costly, much of it is shipped to
developing nations where workers dismantle
e-waste in poor working conditions for only a
few dollars per day. The workers are directly
exposed to the heavy metals within the elec-
tronics, and their families and communities
are exposed to the waste through local water-
ways and the burning of remaining equipment
(Nnorom & Osibanjo, 2008).
Mental Health Services
The fi rst Surgeon General’s Report on Mental
Health was issued in 1999 (U.S. DHHS, 1999).
This report is important, as is emphasized in
Chapter 8 in this volume, because it acknowl-
edges the association between mental and
physical health. It describes the toll of mental
illness on the population and states that men-
tal health programs in the United States are
founded on a public health population-based
model. Furthermore, the report highlights
the issue of disparities in treatment based on
culture, race, gender, and fi nancial access.
Finally, the report identifi es stigma associ-
ated with mental illness as a major obstacle.
In suggesting courses of action to the public
health and medical communities, the Surgeon
General’s Report mentions facilitating entry
into the mental health system. In recognition
of the links between mind and body, the report
identifi es primary care providers as one route
of entry to mental health services.
Clinical social workers deliver more men-
tal health care than do any other professionals.
Public health social workers have the potential
to develop and contribute to population-level
interventions to address the concerns cited in
the Surgeon General’s Report, such as allevia-
tion of stigma and of barriers to care and dis-
parities in diagnosis and treatment.
Research
Evidence-based interventions and sound pub-
lic policy result from well-planned and ex-
ecuted research. As more public health social
workers become involved in research, such as
that described in this chapter, the importance
of including social, behavioral, and environ-
mental factors as determinants of health will
become more apparent.
Public health social workers are increasingly
engaged in community-based participatory re-
search (CBPR). CBPR is defi ned by the Agency
for Healthcare Research and Quality (AHRQ)
as “a collaborative process involving research-
ers and community representatives; it engages
community members, employs local knowledge
in the understanding of health problems and the
design of interventions, and invests community
members in the processes and products of re-
search” (2010, p. 1). CBPR is especially useful
in populations that often are reluctant to engage
in conventional research (minority, low income,
rural, and central city) because of their use in
previous, sometimes unethical, studies (e.g.
Tuskegee study.)
Three additional factors support the use of
participatory research to improve the health of
disadvantaged communities.
First, local community knowledge increases
our understanding of the complex interac-
tions among economic, social, and behav-
ioral factors that contribute to disparities and,
therefore, should inform the design of inter-
ventions aimed at reducing these disparities.
In addition, there is a gap between the knowl-
edge produced in research and practiced in
these communities. Finally, members of
these communities are increasingly reluctant
to participate in research and are organizing
to monitor and/or prevent such activities.
(AHRQ, 2010, p. 1)
Examples of CBPR include projects aimed at:
increasing the availability of high-quality food
in inner-city neighborhoods; the environmental
factors that contribute to childhood asthma; and
the relationships among SES, physical environ-
ment, and heart disease (AHRQ, 2010, p. 1).
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90 Foundations of Social Work in Health Care
Another path to ameliorating health dispari-
ties is clinical and translational science (CTS).
The emergence of CTS has many implications
for public health social work research and in-
terventions. The goal of translational science
is to translate basic research fi ndings into clini-
cal practice and population-based interven-
tions (Brekke, Ell, & Palinkas, 2007; Ruth &
Sisco, 2008). Clinical and translational science
is framed in at least four translational phases.
T1 refers to fi rst knowledge developed through
laboratory bench research; T2 refers to taking
this bench research to the bedside for clinical
trials; T3 is applying these fi ndings in clini-
cal practice; and T4 involves applications of
knowledge at the community and population
level (Kon, 2008; Tufts CTSI, 2010). Social
workers are critical to the success of the T3
and T4 phases through their individual clinical
practices and by developing and implementing
community-level interventions. CTS is trans-
disciplinary in nature. Professionals in CTS
range from bench scientists, to clinical provid-
ers, to population-based workers. Social work-
ers work at both the clinical and societal levels
(Gehlert et al., 2010).
The direction from T1 to T4 CTS (bottom-
up research) assumes that laboratory bench
science is the beginning of studying health
disparities. Gehlert and colleagues (2008;
Gehlert, Mininger, & Cipriano-Steffens, 2011)
suggest that rather than bottom-up research,
studies of health disparities should examine
the impacts of social and environmental fac-
tors on behavioral and hereditary components
of health outcomes (top down). This approach
examines the infl uence of upstream (T3 and
T4) determinants, such as social environment,
SES, and discrimination, on individual behav-
ior, health status, and disease. If we know the
effects of upstream determinants and how they
vary by population, we are better positioned to
develop T4 interventions (Gehlert et al., 2008).
Gehlert and colleagues (2008) conducted
studies of African American women newly
diagnosed with breast cancer using the top-
down approach. They examined various up-
stream determinants, such as neighborhood
environments, social isolation, depression, and
perceived loneliness. They found signifi cant
associations among these factors to demon-
strate a pathway from the community effects to
inside the nucleus of the cell. Social environ-
ments create isolation and depression. These
emotional states alter the stress-hormone re-
sponse. When stress-hormone receptors are
activated, farther downstream biochemical
pathways known to increase tumor cell sur-
vival are activated. This research demonstrates
the important contributions that social workers
can make to the transdisciplinary team, both
in understanding health determinants and in
developing appropriate societal interventions
to ameliorate downstream effects on the bio-
logical level.
Public health social work involvement in
clinical and translational research that assesses
psychosocial determinants can lead to more
comprehensive and culturally competent in-
terventions to address public health problems.
Emerging areas for CTS research may include
disparities in obesity and tobacco use. For ex-
ample, the biological effects are well known,
but associations with upstream factors warrant
further study to establish population-based in-
terventions (Gehlert et al., 2008).
Additional emerging research methods at
the nexus of social work and public health in-
clude GIS, system dynamics, and social net-
work analysis. GIS was discussed earlier as
a practice method, but it is also very much a
research method (see Figure 4.4). Social work
and public health both use GIS. As outlined by
Hillier (2007), GIS strengthens social work by
(a) continuing and improving social surveys,
(b) providing a geographic framework for the
study and understanding of human behavior,
(c) spatially locating needs and assets within
a community, (d) mapping and improving the
delivery of social services, and (e) emphasiz-
ing social justice through the empowerment
of disenfranchised communities. The ben-
efi ts of GIS to public health mirror those of
social work by (a) strengthening epidemio-
logical methods, (b) providing a geographic
framework for the study of human disease
and health, (c) spatially locating needs and
assets within a community, (d) mapping and
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Public Health and Social Work 91
improving the delivery of public health inter-
ventions and programs, and (e) highlighting
disproportionate exposures to environmental
agents (environmental justice).
Most of today’s public health social work
challenges are complex and dynamic in terms
of understanding and working toward im-
provements and eventual prevention. For ex-
ample, how does posttraumatic stress disorder
affect soldiers returning from the Iraq or Af-
ghanistan wars? Potential negative effects are
associated with psychological, physical, and
social health. Friends and families may pro-
vide support or may be a source of additional
stress. System dynamics (SD) is a method-
ological approach that assists in understanding
complex systems over time. SD uses a system
of internal and external feedback loops, fl ows,
and outputs (see Figure 4.6). SD computer
software allows researchers to set and change
feedback loops, stocks, and fl ows and to run
models to determine potential reactions and
outcomes. Delayed effects and time series can
be built in as well. Specifi c to public health
social work, SD allows for the modeling of
individual, community, and organizational as-
sets, needs, vulnerabilities, preventive efforts,
responses, complications, and potential out-
comes. Most important to SD are the feedback
loops within and between these categories. For
additional information, see Homer and Hirsch
(2006) and Hirsch, Levine, and Miller (2007).
Social network analysis (SNA) uses a series
of nodes and ties to build a three-dimensional
structure of social networks. Nodes can be in-
dividuals, organizations, or policies, and ties
are the connections between nodes (see Fig-
ure 4.7). SNA allows for the understanding of
how and why certain ties are made and how
information is or is not shared across ties and
between nodes.
Christakis and Fowler (2007), in a promi-
nent SNA article published in the New England
Journal of Medicine, reviewed over 12,000 in-
dividuals who participated in the Framingham
Heart Study to determine whether obesity is
“contagious.” The authors found that an indi-
vidual’s chance of becoming obese increased
by 57% if the person had an obese friend, and
40% if the person had an obese sibling. Spousal
Population
net inflow
Population
not at risk
Risk onset
Risk reduction
Population at
risk
Disease
incidence
Disease cure
and recovery
Complications
(urgent episodes)
Population
with disease
Disease related
deaths
Urgent careInjury and violence
death rate
Risk
managementAdverse behaviors and
living conditions
Disease
management
As an example, adverse behaviors and living conditions can result in individuals within the population not at
risk to become at risk while improvements in behaviors and living conditions can have the effect of moving
individuals from at risk to not at risk.
Figure 4.6 System Dynamics Example Showing the Population as Not at Risk, at Risk, or With
Disease
Source: Homer, Hirsch, and Milstein, 2007.
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92 Foundations of Social Work in Health Care
infl uence was slightly less strong, although
still signifi cant, at 37%. Lakon and colleagues
(2010) used SNA to show that both individual
and neighborhood ties (multilevel modeling)
affected the smoking behaviors of teenagers.
Luke and colleagues (Leischow et al., 2010;
Luke & Harris, 2007) describe network-and
organization-level SNA. Tobacco control and
efforts to reduce the numbers of cigarette smok-
ers require a coordinated effort. Luke and Har-
ris use SNA to show the coordination and lack
thereof between agencies under the guidance
of DHHS. Repeat surveys and gaps in services
across government agencies can greatly reduce
effi ciency in preventive efforts.
IMPACT OF PUBLIC HEALTH
SOCIAL WORK
This chapter addressed only a sample of the
issues, practice settings, and interventions
encountered by public health social workers.
Other issues that public health social workers
address include: services for immigrants and
refugees; health care for men and women not
related to reproduction; and inner-city and
rural concerns, such as safety, crowding, and
social and physical isolation, all of which im-
pact the ability of these populations to achieve
the maximum potential health status.
Although medical social workers work with
patients and their families to adapt to sudden
and severe illness or trauma, public health so-
cial workers operate at the population level
promoting primary prevention interventions
to address the causes of these health prob-
lems. Public health social workers contribute
their expertise grounded in the person-in-
environment orientation (Kondrat, 2008) to
incorporate responses to behavioral, social,
and physical environmental determinants of
health in public health interventions.
The problems will change over time, but
well-prepared public health social workers
will be ready to take on new challenges. The
new generation of public health social workers
will carry on the traditions of the founders of
Figure 4.7 Network of Relationships Among Individuals Working on Tobacco Control at the Department
of Health and Human Services
Source: Adapted from Leischow et al., 2010.
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Public Health and Social Work 93
social work who created settlement houses and
worked to improve environmental conditions,
develop economic reforms, and protect chil-
dren, all of which contributed to the improve-
ment of the public’s health. Their work laid the
foundation of federal programs for children
and families and gave direction for the future
of our profession.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 4.1
The purpose of this exercise is to apply your
understanding of the determinants of health to
a public health problem and discuss the role
of public health social work in addressing the
problem.
Your class will be divided into small groups
and each assigned one of 38 focus areas from
Healthy People 2020 (found on the Healthy
People Web site) at one class session. Be-
tween classes, your homework assignment is
to gather data about the area and prepare a fact
sheet for your classmates. In the next class ses-
sion, each group will meet to identify deter-
minants of the health problem in the various
domains identifi ed in Figure 4.1 and how they
interact.
After identifying the determinants, your
group will explore the roles of public health
social workers in promoting health and pre-
venting the public health problem and then
present your understanding to the class. The
presentation must identify issues of diversity
and disparities in the distribution, treatment,
and prognosis of the illness at the core of the
problem. In addition, you should be prepared
to present on issues of social and economic
justice associated with the health concern.
Learning Exercise 4.2
Review the cases in Box 4.5. Discuss whether
you would classify these cases as human traf-
fi cking. Discuss ways in which a transdisci-
plinary team can address the issues identifi ed
in these cases. What would be the role of a
public health social worker in each case?
Learning Exercise 4.3
The purpose of this exercise is to explore pri-
mary, secondary, and tertiary levels of preven-
tion that can be applied to an intervention for
a public health problem.
In this activity, you will be assigned to
play a role on a committee that has gathered
to address a public health problem in your
community. The professionals on the com-
mittee, in addition to a public health social
worker, may include a physician; an epidemi-
ologist; a public health nurse; and/or a pub-
lic offi cial, such as a prosecuting attorney, a
city council member, or a law enforcement
offi cer. The committee will meet and use data
that were provided to you by your instructor
to collaborate in the design of interventions
at the three levels of prevention and then to
decide which intervention will best serve the
community.
Possible topics:
• Perinatal substance abuse
• Teen pregnancy
• Sudden increase in the number of syphilis
cases
• Motor vehicle accidents involving adoles-
cents and alcohol
• Rise in suicide rate
• Rise in childhood obesity
• Asthma in a minority population
• Domestic violence
• Human traffi cking
• Dental caries
Learning Exercise 4.4
In this chapter, we discussed three emerging
methods at the nexus of social work and pub-
lic health: geographic information systems,
system dynamics, and social network analy-
sis. These methods rely on mapping, feed-
back loops, and social ties, respectively. We
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94 Foundations of Social Work in Health Care
also outlined community-based participatory
research (CBPR), in which researchers and
community partners work in collaboration
to overcome public health social work chal-
lenges. For this exercise, think of a way that
CBPR can be utilized to map, develop system
feedback loops, and determine social ties.
What practice and research questions would
you answer using this mixed methodology?
APPENDIX 4.1: GLOSSARY
Assessment Collection, analysis, and sharing
of data about health conditions, risks, and
resources in a community.
Assurance Monitoring the availability of
health services in a community.
Epidemiology Study of distribution and
determinants of disease in populations.
Evidence-based practice Interventions that
are based on theory that is supported by empirical
research.
Fetal and Infant Mortality Review (FIMR)
Review conducted to gather medical and
social information after a fetal or infant
death.
Healthy People 2020 Public health goals
and objectives for the United States as set by
the U.S. Department of Health and Human
Services.
Infant mortality (IM) Death prior to an
infant’s fi rst birthday; one of the leading
indicators used worldwide to measure a
country’s health.
Low birth weight (LBW) Weight of less
than 2,500 grams, or about 5.5 pounds, at birth;
a cause of infant mortality and, thus, one of the
leading indicators used worldwide to measure
a country’s health.
Policy development Use of assessment data
to develop local and state health and social
welfare policies and to direct resources toward
those policies.
Population-based intervention Intervention
focused on health promotion/disease prevention
in populations rather than on the treatment of
individuals.
Prevention, primary Promotion of health
and prevention of disease or trauma before it
occurs.
Prevention, secondary Early diagnosis and
treatment of disease.
Prevention, tertiary Action taken to
minimize the effects of a disease and prevent
further disability.
Social epidemiology Study of the impact of
social factors on the distribution of health and
illness in a population.
Title V of the Social Security Act of 1935
Provides for maternal and child health
programs that are delivered by states through
a block grant mechanism; Title V programs
are administered by the Maternal and Child
Health Bureau of the Health Services and
Resources Administration (HRSA) of the U.S.
Department of Health and Human Services.
APPENDIX 4.2: PUBLIC
HEALTH SOCIAL WORK
STANDARDS AND
COMPETENCIES
Public health social workers address health
from a broad perspective that includes physi-
cal, social, emotional, and spiritual well-being
throughout the continuum of the life cycle. They
address health issues by identifying and imple-
menting strategies and interventions that ad-
dress pivotal times of transition from one phase
of individual development to another. Public
health social work ensures the competency of
its practice to address the issues of public health
effectively through a core body of knowledge,
philosophy, code of ethics, and standards.
Public health social work employs a range
of strategies to implement essential public
health functions in a measurable fashion as
specifi ed in the Public Health Social Work
Standards and Competencies (2005). These
are available online at http://oce.sph.unc.edu/
cetac/phswcompetencies_may05 /.
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http://oce.sph.unc.edu/cetac/phswcompetencies_may05 /
http://oce.sph.unc.edu/cetac/phswcompetencies_may05 /
Public Health and Social Work 95
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100
5
Health Policy and Social Work
JULIE S. DARNELL AND EDWARD F. LAWLOR
Health policy refers to actions taken by gov-
ernment or the private sector to achieve a
specifi c health-care goal. One such action is
the Patient Protection and Affordable Care
Act (PPACA), enacted in March 2010, which
changed the landscape for health and social
work practice for the foreseeable future. As
it is implemented over the next 10 years, the
legislation will signifi cantly increase health
insurance coverage and reset the philosophy,
organization, and fi nancing of care. The chal-
lenge for social workers in this environment is
to know both the fundamentals of the current
health-care systems and the changes resulting
from the new law and their trajectory.
As practitioners in various settings, social
workers assist clients in obtaining and navi-
gating federal and state health programs with
complex eligibility rules and application pro-
cedures, directly provide publicly supported
health services, and disseminate informa-
tion to individuals and groups about numer-
ous aspects of health care. As advocates for
poor, disadvantaged, and disenfranchised in-
dividuals and families, social workers act to
infl uence health policies and legislation that
enhance the welfare of at-risk and vulnerable
populations and improve existing health-care
delivery systems. As policy makers work-
ing in local, state, or federal agencies, social
workers formulate health policies and admin-
ister health programs. These roles—far from
being made obsolete by health reform—take
on heightened importance in the reformed en-
vironment. The success of health reform will
depend on its provisions remaining intact, the
newly insured gaining access to insurance cov-
erage, and people’s ability to obtain needed
health-care services, regardless of their insur-
ance status. For social workers to be effective
in the new post–health-care-reform era, they
must possess a thorough understanding of the
law, which fi rst requires a strong command of
the broader health-care policy environment
that the law amends.
This chapter provides an overall frame-
work for understanding health policy that is
essential to successful direct practice, advo-
cacy, and policy making. The framework in-
cludes exposure to the key overall concerns
of health policy—access, costs, quality, and
accountability—as well as an introduction in
the key organizational, fi nance, and payment
structures in health care. We then provide an
introduction to the structure and key issues in
Medicare, Medicaid, and the State Children’s
Health Insurance Program (SCHIP), the three
main public insurance programs. We highlight
the implications of health reform for future
policy and practice. Due to space consider-
ations, we focus on federal health policy ac-
tions. For readers who are interested in state
health policy issues, some additional resources
are listed at the end of this chapter. With this
background, we review the history of com-
prehensive health reform and its ultimate pas-
sage in 2010. Finally, the chapter raises a set
of policy issues and provides a number of key
resources for ongoing involvement for social
workers interested in understanding and infl u-
encing health policy.
Chapter Objectives
• Provide a framework—access, cost, qual-
ity, accountability—for assessing all health
policy initiatives.
JWBT514_ch05.indd 100JWBT514_ch05.indd 100 9/21/11 7:42 PM9/21/11 7:42 PM
Health Policy and Social Work 101
• Describe the basic organization, fi nancing,
and payment structures of health care.
• Describe the key components of Medicare,
Medicaid, and SCHIP.
• Briefl y describe the history and content of
health-care reform.
• Identify key long-term health policy issues
and professional roles for social workers.
FRAMEWORK FOR
UNDERSTANDING
HEALTH POLICY
Anyone wishing to understand the U.S. health
system is immediately confronted by a di-
chotomy: Massive amounts of spending occur
against a backdrop of resource scarcity. Al-
though the U.S. health-care system represents
one of the largest economies in the world in its
own right, health policy exists in a context of
relative scarcity of resources. This is evident in
much of the public debate: Although the coun-
try spends over $2.5 trillion on health services,
it is a truism in public discourse that we are not
“spending enough” on mental health, research,
Medicaid nursing home reimbursement, and
other worthy causes. Because medical knowl-
edge and technology are constantly producing
fantastic new possibilities for intervention and
treatment, the overarching challenge of health
policy is to allocate resources toward care that
is effective and cost worthy.
In this environment of tremendous spend-
ing and resource scarcity, clinicians, managers,
and policy makers face four general problems
of health policy: access, costs, quality, and ac-
countability.
Access refers to the “actual use of personal
health services and everything that facilitates
or impedes their use” (Andersen & Davidson,
2001, p. 3). Measures of access provide sig-
nals of the fairness or social justice of health
systems, indicators of its effi ciency or effec-
tiveness, and important signposts for policy
attention. Access is not just health insurance
coverage but includes all of the practical and
even cultural determinants—such as transpor-
tation and cultural competence of providers—
that infl uence whether individuals are able to
obtain needed services in a timely fashion.
Costs of health care represent the oppor-
tunities forgone in the national economy as a
result of devoting resources to health care. Re-
sources allocated to health services mean that
they are not available for their best alternative
use, whether that consists of wages and sal-
ary, investments in things such as education
or plant and equipment, or for other forms
of consumption. In the United States, we are
concerned not only about the level of health-
care costs—such as per-capita spending, or
the share of gross domestic product—but also
the rate of growth of health-care expenditures.
The problem of cost containment is endemic in
health care and the preoccupation of employ-
ers who share in the costs of insurance, gov-
ernments who fi nance public programs, and
individuals who bear signifi cant out-of-pocket
costs for medical expenses such as prescrip-
tion drug coverage.
Quality of health care can refer to structural,
process, or outcome dimensions of health-care
delivery. Structural dimensions of health-
care quality include the facilities, technology,
workforce, and other observable “inputs” into
care. In the early history of accreditation of
health-care organizations, for example, sur-
veyors focused on life safety and hygienic
aspects of providers as the most salient mea-
sures of quality. As health-care organizations
became more sophisticated and standardized,
quality improvement focuses on processes of
care and, more recently, on outcomes (Lawlor
& Raube, 1995).
Accountability of health care refers to the
assurance that health care is clinically effec-
tive, prudently delivered, and serving the best
interests of patients and payers. Examples of
accountability measures in health policy in-
clude recent efforts to provide a patients’ bill
of rights, the administrative efforts to reduce
fraud and abuse, legal efforts to reform medi-
cal malpractice litigation, and quality mea-
sures to promote better outcomes and process
in hospitals (Chassin et al., 2010).
Virtually all health policy endeavors can
be understood as responding to access, cost,
JWBT514_ch05.indd 101JWBT514_ch05.indd 101 9/21/11 7:42 PM9/21/11 7:42 PM
102 Foundations of Social Work in Health Care
quality, or accountability concerns in health
care. Efforts to change insurance coverage are
motivated largely by access concerns; efforts
to increase the cost sharing (such as copay-
ments and deductibles) are driven by cost con-
tainment concerns; efforts to reduce medical
errors in hospitals are a form of quality ini-
tiative; and legislation to reform medical mal-
practice is a form of accountability change in
the health system.
HEALTH SERVICES
ORGANIZATION
The American approach to health-care delivery
is an especially complicated mixture of public,
nonprofi t, and for-profi t entities. To conceptu-
alize all of the moving parts, it is helpful to
separate out the organizations, fi nance and
payment, and regulatory components of the
system. In its organization, the health-care sys-
tem is a complicated web of government, non-
profi t, and for-profi t organizations that interact
in a mix of public and private relationships.
Government is responsible for a signifi cant
portion of health-care fi nance (appropriating
and distributing money, primarily through
taxes, that goes into the system); regulating ac-
cess, cost, and quality; and actually producing
health services in hospitals, clinics, prisons,
and other settings.
The nonprofi t sector in health care is ex-
tremely varied and includes: organizations
such as BlueCross BlueShield; academic cen-
ters that carry out research and train physicians,
nurses, social workers, and other personnel;
foundations that fund research and health ser-
vices; and nonprofi t hospitals and clinics that
provide health-care services directly.
The for-profi t (otherwise known as the pro-
prietary or investor-owned) sector has varying
emphasis in the system, depending on the in-
dustry or sector. The pharmaceutical industry
is almost entirely for-profi t, the nursing home
industry is roughly 66% for-profi t, and the
hospital industry is only 14% for-profi t.
To understand health-care politics and
policy, it is important to recognize that, taken
together, these sectors add up to a large in-
dustry: from pharmaceutical manufacturers,
to suppliers of medical devices and durable
goods, to architects, to ambulances, to con-
sultants, to social workers. All of these actors
are both politically and economically invested
in health policy. Social workers need to ap-
preciate that in addition to access and quality
of clinical care—the usual priority of profes-
sionals working in the system—health care is
a political economy in its own right. Its power
and vested interests add up to a $2.5 trillion
industry. This power was most visibly on dis-
play when health reform legislation was being
debated and when interests such as the phar-
maceutical industry, the insurance industry, or
hospitals see their control and markets being
threatened. However, this political economy is
an ongoing force in health care, affecting the
politics and decisions at every level of policy
making, from local planning, to federal pay-
ment policy for hospitals and physicians.
Finance and Payment
Social workers, whether in clinical, policy,
management, or advocacy roles, need to un-
derstand the relationship of fi nance, payment
systems, providers, and actual provision of
health services. Table 5.1 illustrates the basic
elements of this framework for understanding
the fl ow of dollars through the health system.
Financing arrangements gather up dollars
through taxes in the public sector or insur-
ance premiums in the private sector. These
dollars are then paid out in various payment
systems that carry their own incentives for
cost savings, preventive care, or other policy
goals. For example, Diagnosis Related Groups
(DRGs) are the payment method that Medi-
care uses to reimburse hospitals for inpatient
care. In payment systems, the dollars typically
fl ow to particular provider types, whether they
are ambulances, physicians, hospitals, health
maintenance organizations (HMOs), or any
of the hundreds of other provider types. Fi-
nally, payments that go to particular provid-
ers are calibrated for each individual service.
For example, physicians often are paid on the
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Health Policy and Social Work 103
Table 5.1 Examples of Finance, Payment, Provider, Service Relationships
Finance Payment Systems Providers Service
Payroll tax Diagnosis-related groups Hospitals All inpatient expenses
Employer/employee
premiums
Capitation Managed care organization All covered health
services, including
prescription drugs
Federal and state
(Medicaid) tax revenues
Fee for service Physicians Offi ce visits
Out-of-pocket
expenditures
Fee for service Dentist Procedure
basis of a fee schedule that sets the specifi c
amount based on cost, risk, or other criteria for
payment.
Finance
Health services are fi nanced via a complicated
patchwork of out-of-pocket expenditures, em-
ployer and employee payments to insurers and
other private intermediaries, and tax revenues
that fl ow to public programs and public pro-
viders, such as the Veterans Administration or
county public hospitals.
Tax revenues fl ow into the health-care sys-
tem through a number of routes. The most
important sources of public funds for health
services are payroll tax contributions and gen-
eral revenue receipts for Medicare. Payroll tax
contributions are deposited in a Medicare Part
A Trust Fund for Hospital Insurance. Gen-
eral revenue contributions are combined with
premiums (75% general revenues, 25% Part
B premiums) to fi nance physicians’ services,
home health, and other nonhospital expenses
in Medicare. A combination of federal and
state tax revenues fi nance Medicaid. The exact
contribution of federal and state sources varies
from state to state depending on a formula but
averages about 50/50.
The federal government fi nances a variety
of other health services and programs through
appropriations in the federal budget. Ex-
amples include veterans’ services, payments
to Federally Qualifi ed Health Centers (under
the Health Resources and Services Adminis-
tration), HIV and AIDS services (under the
Centers for Disease Control and Prevention),
and Indian Health Services (under the Bu-
reau of Indian Affairs). States fund a variety
of health programs and providers as well as
provide a signifi cant amount of direct health
services through state hospitals, state schools,
and departments of correction. Cities and
counties are responsible for funding a variety
of health services ranging from school health
to public hospitals and clinics.
A considerable amount of health care is
provided without obvious sources of payment,
either as charity care (provided as in-kind ser-
vices) or by writing off bad debt. The most in-
teresting form of unfunded health care is free
care provided by individual providers, such
as physicians who provide care in their of-
fi ces without payment, or organizations, such
as free clinics. This care, offi cially known as
uncompensated or charity care, is a signifi cant
although often unaccounted for component of
the health system. For some providers, such as
inner-city teaching hospitals, charity care can
be a signifi cant proportion of overall care and
must be supported by subsidies, fundraising,
or other sources.
Monies that are paid by employers and
employees to health insurance plans, usually
in the form of premiums for health coverage,
account for about 36% of all health-care reve-
nues. Indeed, 60% of Americans receive health
insurance through their employers (DeNavas-
Walt, Proctor, & Mills, 2004). Employees are
charged amounts that may refl ect characteris-
tics of their group (either their demographics
JWBT514_ch05.indd 103JWBT514_ch05.indd 103 9/21/11 7:42 PM9/21/11 7:42 PM
104 Foundations of Social Work in Health Care
or their cost and experience in using health
services), the generosity of coverage, and the
degree to which their employer wishes to dis-
tribute the burden differently among higher-
or lower-compensated employees. Thus, the
premiums that individuals pay for health in-
surance coverage vary widely across fi rms,
occupations, and geography. Small fi rms with
an expensive record of health-care costs and
little ability or desire to subsidize coverage can
face prohibitively high costs of coverage for
workers.
Out-of-pocket expenditures usually are
given to providers in the form of copayments
or deductibles. Copayments require individu-
als to share in the costs of a service, such as
a physician visit or a prescription drug order,
in order to make the user sensitive to the price
or cost of that service. Deductibles also create
a kind of price sensitivity to the use of health
services and typically apply to the fi rst dollars
of service use, such as the fi rst day or days of
a hospitalization. A large body of economic re-
search, most notably the RAND Health Insur-
ance Experiments, documents the reductions
in the costs and use of care when patients are
charged even small copayments or deduct-
ibles (Newhouse & the Insurance Experiment
Group, 1993).
These kinds of fi nancial disincentives to use
health services can discourage needed or ap-
propriate care. The rise of “consumer-directed
health care” has been accompanied by an in-
crease in the use of copayments, deductibles,
limits, and other features of health insurance
coverage that are designed to reduce costs and
force patients to be prudent users of services.
At the extreme, new plan types known as
Medical Savings Accounts (MSAs) combine
high deductibles, catastrophic coverage, and
favorable tax treatment to encourage consum-
ers to make very calculated choices about their
use of medical resources. Because consumers
may get to keep and roll over any savings that
may accrue when they do not spend out-of-
pocket dollars for health services, policy mak-
ers believe they will be much more careful
and prudent about decisions to use resources.
Critics of the MSAs worry that relatively
healthy enrollees will select these plans, leav-
ing other insurance pools with sicker and more
costly enrollees and, ultimately, much higher
premiums.
Payment
In general, payment systems can be designed
as prospective or retrospective, cost based or
risk based. A prospective payment system es-
tablishes the amount to be paid in advance,
leaving the provider to assume the fi nancial
risk if a patient costs more than the predeter-
mined amount. A cost-based system attempts
to reimburse providers for the actual resource
use in an episode of care. The disadvantage of
cost-based systems is that they fail to provide
incentives for providers to be effi cient; when
they began, cost-based systems such as in
Medicare came to be known as “blank check
Medicare.” Risk-based systems push the costs
(or risks) of health services back to providers,
and this gives them powerful incentives to be
effi cient.
The most famous prospective payment sys-
tem, and the one most consequential for social
workers, is the Medicare Prospective Payment
System (PPS), originally introduced in 1983.
The unit of payment for the Medicare PPS
was the diagnosis-related group, defi ned by
the codes from the ninth edition of the Inter-
national Statistical Classifi cation of Diseases
and Related Health Problems applied to the
patient’s condition or diagnosis at discharge.
Hospitals were paid a fi xed, prospectively
determined amount based on the resource
intensity of a particular diagnosis. This fi xed
prospective payment is a powerful example of
a risk-based system. For example, a hip frac-
ture would be classifi ed into a particular DRG
category, “DRG 210 hip and femur procedure
except major joint, without comorbidities or
complications.” The hospital would be paid
a fi xed amount based on the DRG weight for
that case, which has a mean length of stay of
4.5 days.
In general, if the hospital treated the patient
quickly and at low cost, it could retain the
margin it earned on this episode of care; if the
patient had a long and costly hospital stay, the
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Health Policy and Social Work 105
hospital could lose considerable money on that
particular patient. The theory of this payment
system is that, with large numbers of patients,
the winners and losers would net out, resulting
in a small operating margin for the hospital.
The incentives in this system are for hospitals
to treat patients quickly and effi ciently.
For social workers, the introduction of PPS
resulted in a tremendous emphasis on dis-
charge planning because quick and effective
discharge was the key to reduced lengths of
stay, especially reductions in what hospital
managers termed “administratively necessary
days,” the time it took to fi nd an appropriate
subacute setting, such as a skilled nursing
facility to provide the next incidence of care
for the patient. Because of the economic im-
portance of discharge planning, this activity
became the dominant task and even a profes-
sional identity for hospital social workers. In
many hospitals, hospital social workers be-
came discharge planners.
Prospective payment systems can take
many forms. Typically, managed care organi-
zations pay providers for taking care of per-
sons for a year-long term (thus the expression
per person per year), for bundles or packages
of services (such as for a package of cardiac
care services: preoperative, surgical, postop-
erative), or for treating certain diagnoses.
Retrospective payment systems, as the term
suggests, pay for services after they have been
delivered, on the basis of either costs or a fee
schedule. The principal difference from pro-
spective systems is that in retrospective sys-
tems, the risk for more or less costly cases
is shifted away from the provider. Until the
mid-1980s, the widespread use of retrospec-
tive cost-based payment systems, sometimes
referred to as “blank check medicine,” was
implicated in rapidly increasing health-care
costs. Providers had no incentives to limit
costs; rather, the more costly services they
provided, the more they were paid.
Managed care organizations typically rely
on versions of risk-based payment systems
that force the insurer or provider to assume
some degree of fi nancial risk or responsibil-
ity for the costs of covering enrollees. HMOs
were based on a model of prepaid health care,
known as capitation, in which plans were paid
a single payment per person per year (known
as a capitation payment), irrespective of the ill-
nesses or cost experience of that individual en-
rollee. The theory of these payments was that
through the laws of large numbers, variations
in the costs of illness experience of enrollees
would smooth out. If the capitation payment
was close to the average costs of covering this
population, the managed care provider would
have a strong incentive to control costs. Critics
of these models charged that HMOs engaged
in selection behavior, picking the healthiest
enrollees for their plans, or engaged in treat-
ment practices that restricted needed services
or disadvantaged vulnerable patients.
As experience with and criticism of par-
ticular payment systems build, inevitably
there are movements to refi ne and improve
such systems. Examples of refi nement would
include the adoption of so-called partial capi-
tation models (that attempt to blend fairness
with the incentive effects of capitation), the
extension of outlier payments in DRGs (to
take account of extremely costly cases), and
the application of sophisticated payment mod-
els to new provider types (such as the adoption
of prospective payment in long-term specialty
hospitals). As these payment systems become
more fi ne-tuned, the overall complexity of the
system escalates.
KEY FEDERAL HEALTH
PROGRAMS: MEDICARE,
MEDICAID, AND SCHIP
Social workers in the fi eld of health care un-
doubtedly will encounter Medicare and Med-
icaid, two federal health insurance programs
enacted into law in 1965. Together, Medicare
and Medicaid cover 1 in 3 Americans, or
107 million benefi ciaries. The newest pub-
lic insurance program, the State Children’s
Health Insurance Program, enacted in 1997,
covered 5 million children in 2009 (Smith,
Roberts, et al. 2010). Medicare, Medicaid, and
SCHIP account for over one third of national
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106 Foundations of Social Work in Health Care
health spending and three fourths of all pub-
lic spending—costing 770 billion in 2007
(Centers for Medicare and Medicaid Services
[CMS], 2010).
In an era of increasingly complex and
changing rules in federal health programs,
knowledge about federal health policies and
expertise in eligibility have become requisite
skills for social workers to effectively connect
clients with available resources and advocate
for improvements in programs. Social work-
ers are poised to help clients overcome persis-
tent barriers to coverage that result from lack
of knowledge or misinformation about public
health programs.
Medicare
Medicare is a federal health insurance pro-
gram that covered 47 million people in 2010,
of whom 37.5 million are people age 65 and
older and 8 million are people under age 65
with disabilities (Kaiser Family Foundation,
2010). Medicare’s history is rich and conse-
quential—eligibility, payment systems, public
support, and the model of acute care delivery
that guides most of Medicare’s coverage are
the products of overt political choices over
its history (Lawlor, 2003). Medicare has four
parts: A, B, C, and D.
Part A covers inpatient hospital, skilled
nursing facility, hospice, and some home
health-care services. People who are eligible
to receive Social Security payments receive
Part A automatically when they reach age 65.
It is fi nanced primarily by a mandatory 1.45%
payroll tax paid by employees and matched
by employers. In 2010, benefi ciaries admitted
to a hospital paid a $1,100 deductible for the
fi rst 60 days; thereafter, benefi ciaries paid ad-
ditional amounts per day for an inpatient stay.
Part B covers services offered by physi-
cians and other providers (including clinical
social workers); outpatient hospital services;
some home health care; laboratory tests, X-
rays, and other radiology services; physical
and occupational therapy and speech pathol-
ogy services; and medical equipment and
supplies for home use. Part B is voluntary,
although 93% of people eligible for Part A
elect Part B coverage (CMS, 2004h). Part B is
fi nanced by benefi ciary premiums, which are
set by law at 25% of the cost of Part B ben-
efi ts, and general revenues from the U.S. Trea-
sury. In 2010, the monthly premium for Part B
coverage was $110.50. Benefi ciaries also are
required to meet an annual Part B deductible
($155 in 2010) and pay 20% coinsurance for
most Part B services.
Added as part of the Balanced Bud-
get Act of 1997, Part C (originally called
Medicare+Choice and later renamed Medicare
Advantage) provides benefi ciaries the option
to enroll in managed care plans. Medicare Ad-
vantage plans enrolled 11 million benefi ciaries
in 2010 (CMS, 2010), despite three decades of
effort and expectations that the Medicare en-
rollment in managed care would dominate the
program (CMS, 2004e; Lawlor, 2003).
Added under the Medicare Prescription
Drug, Improvement, and Modernization Act
of 2003, Part D provides a voluntary prescrip-
tion drug benefi t. Part D is fi nanced jointly
by a benefi ciary premium (25.5%) and gen-
eral revenues (74.5%) from the U.S. Treasury.
Low-income benefi ciaries receive additional
subsidies for coverage. Part D has had rapid
uptake, now covering 28 million benefi ciaries
and accounting for 11% of Medicare benefi t
expenditures. A controversial element of Part
D coverage, addressed in the 2010 PPACA,
was a gap in prescription drug coverage,
known as the donut hole.
Medicare benefi ciaries can elect to par-
ticipate in Part D prescription drug cover-
age by paying a premium. Once on the plan,
benefi ciaries must pay the fi rst $310 of drug
expenses (the deductible) before any cover-
age is provided. After the deductible is met,
Medicare will pay 75% up to the point at
which a benefi ciary has incurred $2,831 of
drug expenses. Over the next $3,609 of drug
expenses—the so-called donut hole—Medi-
care Part D provides no additional coverage.
When a benefi ciary has incurred $6,440 of
prescription drug expenses, catastrophic cov-
erage kicks in, covering 95% of any addi-
tional expenses. Provisions in the PPACA will
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Health Policy and Social Work 107
reduce this out-of-pocket burden in the donut
hole gradually, covering different proportions
of brand name and generic expenses, until the
law is fully phased in by 2020.
Although most Medicare benefi ciaries are
elderly people, Medicare essentially does not
pay for the cost of long-term care. Medicaid,
discussed next, is the major public program
that pays for long-term care in a nursing home.
PPACA made a number of substantial
changes in Medicare fi nancing, coverage,
and payment policy (Kaiser Family Founda-
tion, 2010). A number of provider payments,
especially payments for Medicare Advantage
Plans, were reduced over time to limit overall
Medicare cost growth. Overall, the package
of Medicare spending cuts, taking account of
additional spending in the law, is expected to
reduce Medicare expenditures by a net of $428
billion between 2010 and 2019. A number of
changes in the payroll tax fi nancing, employer
tax deductions, premium levels, and fees on
prescription drug providers also will increase
fi nancing for Medicare over time. The PPACA
also establishes a variety of innovations in
delivery systems for benefi ciaries, increased
prevention services, reductions in fraud and
abuse, and an independent advisory board for
the program.
Medicaid
Medicaid is a means-tested health insurance
entitlement program fi nanced jointly by the
federal government and the states. The pro-
gram is a substantial player in the overall U.S.
health-care system, accounting for approxi-
mately 16% of all health-care spending. (Med-
icaid is an especially large player in long-term
care, accounting for 41% of all nursing home
spending.) Medicaid covers nearly 60 million
people, of whom 29 million are low-income
children, 15 million are low-income adults, 8
million are elderly people, and 9 million are
disabled people. Among those covered, Med-
icaid provides long-term care assistance to
over 1 million nursing home residents and 2.8
million community-based residents (Kaiser
Family Foundation, 2010).
Within broad federal guidelines, states es-
tablish their own eligibility criteria, determine
the scope of covered services, establish pay-
ment rates, and administer the program. Con-
sequently, the Medicaid program varies widely
across states. Federal Medicaid law requires
that states cover individuals who fall within
certain categories, including people who meet
the requirements of the Aid to Families with
Dependent Children (AFDC). Although the
Personal Responsibility and Work Opportunity
Reconciliation Act of 1996 (PRWORA) re-
placed the open-ended entitlement to cash as-
sistance, AFDC, with time-limited Temporary
Assistance for Needy Families (TANF), states
are not required to provide Medicaid coverage
to TANF recipients. Only people who would
have been eligible for AFDC under the AFDC
requirements in effect on July 16, 1996, are
guaranteed Medicaid coverage: pregnant
women and children under age 6 with family
income at or below 133% of the federal pov-
erty level; children under age 19 who were
born on or after September 30, 1983, and have
family income at or below the federal poverty
level; Supplemental Security Income (SSI) re-
cipients in most states; recipients of adoption
or foster care assistance under Title IV; and
certain low-income Medicare benefi ciaries.
States have the option to extend coverage to
groups beyond federal minimum standards.
Starting in 2014, PPACA expands Medicaid
coverage to all individuals and families with
incomes below 133% of the poverty line. Chil-
dren in families with incomes below 133% of
the poverty line who formerly were covered
by SCHIP would then transition to Medicaid
coverage. The effect of this coverage rule will
vary tremendously from state to state; states
that have had relatively low eligibility levels
will experience dramatic increases in Medicaid
coverage. All together, it is estimated that the
Medicaid provisions in PPACA will increase
coverage in the program by 15.9 million peo-
ple (Holahan & Headen, Kaiser Commission
on Medicaid and the Uninsured, 2010). These
16 million represent half of the 32 million
people who are anticipated to become newly
insured under health reform.
JWBT514_ch05.indd 107JWBT514_ch05.indd 107 9/21/11 7:42 PM9/21/11 7:42 PM
108 Foundations of Social Work in Health Care
Federal Medicaid law also requires that
states provide certain basic services, includ-
ing inpatient and outpatient hospital services;
physician, midwife, and nurse practitioner
services; family planning services and sup-
plies; prenatal care; vaccines for children;
early and periodic screening; diagnosis and
treatment (EPSDT) for children under age 21;
laboratory and X-ray services; rural health
clinic services; federally qualifi ed health
center services; home health care; and nurs-
ing home care. States have the option to ex-
pand the scope of services to provide certain
optional services, such as prescription drugs,
transportation services, optometrist services
and eyeglasses, prosthetic devices, home and
community-based care, and rehabilitation and
physical therapy services.
Medicaid enrollment in managed care plans
has increased steadily over the past decade, now
accounting for 71% of all enrollees receiving
health-care coverage. Medicaid-managed care
programs have been the source of both innova-
tion and controversy, especially in states with
high penetration of managed care. The most
innovative Medicaid-managed care programs
have developed care management programs,
creative outreach to assure timely and preven-
tive care, quality standards, and increased reli-
ance on evidence-based medicine. The latest
generation of Medicaid innovation has been
the development of medical home models that
establish a continuing primary care point of
service and coverage, increased patient educa-
tion, and coordination of care across multiple
health providers and social services (Rosenthal
et al., 2010). The controversy over Medicaid-
managed care has arisen where: predatory or
exploitive marketing practices have occurred;
service delivery systems or availability of phy-
sicians have been inadequate, either in certain
places or for particular vulnerable populations;
or quality of care has been poor.
Medicaid expenditures are spent dispro-
portionately on elderly and disabled people.
Although elderly and disabled people com-
prised 25% of the benefi ciaries in 2007, they
consumed 77% of Medicaid spending. As
in other health insurance pools, a relatively
small proportion of Medicaid participants
account for a large share of spending: In
2004, 5% of enrollees accounted for more
than half of all spending. Moreover, more
than 40% of all Medicaid spending is attrib-
utable to people who receive both Medicare
and Medicaid, known as dual eligibles (see
Figure 5.1; Kaiser Commission on Medic-
aid and the Uninsured, 2004). Dual eligibles
may receive full Medicaid benefi ts plus as-
sistance with Medicare cost sharing or may
receive only assistance with paying Medicare
premium and copayments. Dual eligibles are
arguably among the most vulnerable Medi-
care benefi ciaries, because they are poorer,
sicker, and more likely to be members of a
minority group than other Medicare benefi cia-
ries. They experience higher rates of chronic
disease, are more likely to suffer from mental
disorders and Alzheimer’s disease, are more
likely to receive assistance with instrumental
activities of daily living, and are more likely
to be unable to walk without assistance than
other Medicare benefi ciaries (Kasper, Elias,
& Lyons, 2004). Because of their multiple,
complex needs, dual eligibles require services
and supports that often fall outside Medicare’s
scope of services.
Medicare benefi ciaries who are dually eli-
gible for Medicaid often do not know about
Medicaid or do not think they are eligible for it.
It is estimated that between 41.5% and 47.9%
of Medicare benefi ciaries who are eligible for
payment of cost-sharing expenses under the
so-called Medicare buy-in program are not re-
ceiving assistance (Families USA Foundation,
Medicare Medicaid
“Dual
eligibles”
Figure 5.1
JWBT514_ch05.indd 108JWBT514_ch05.indd 108 9/21/11 7:42 PM9/21/11 7:42 PM
Health Policy and Social Work 109
1998). Social workers who advise clients about
available programs can play a crucial role in
remedying this problem (Ozminkowski, Aizer,
& Smith, 1997). By informing clients about
the Medicare buy-in options, social workers
can help their eligible Medicare clients save
thousands of dollars per year.
Social workers also routinely work with
populations who are ineligible for public pro-
grams. Notably, because Medicaid historically
has relied on categorical eligibility, nearly half
of the poor have not qualifi ed for Medicaid.
As described, this fact will change in 2014 (or
sooner at state option), when all nonelderly
adults under 133% of the poverty level will
qualify for Medicaid. Until then, nondisabled
adults without children and poor parents in
states with eligibility below the federal pov-
erty level will continue to be ineligible for
Medicaid. In addition, neither Medicare nor
Medicaid pays for health services received by
undocumented immigrants, with the excep-
tion of labor and delivery, which is covered
by Medicaid. Moreover, legal immigrants’
access to Medicaid was restricted as a result
of changes adopted in the PRWORA. Be-
fore PRWORA, Medicaid eligibility was the
same for citizens and noncitizens. PRWORA
imposed a fi ve-year ban on Medicaid eligi-
bility for new legal immigrants entering the
United States after August 1996. Furthermore,
PRWORA required the inclusion of the in-
come of an immigrant’s sponsors in determin-
ing an immigrant’s eligibility for Medicaid,
effectively excluding many immigrants from
Medicaid (Kaiser Commission on Medicaid
and the Uninsured, 2003). The PPACA does
not change legal and illegal immigrants’ eligi-
bility for Medicaid. Numerous studies (Capps
et al., 2002; Fix & Zimmerman, 1998; Maloy,
Darnell, Kenney, & Cyprien, 2000) have cited
fear of deportation and confusion about eli-
gibility as barriers to enrollment of eligible
immigrants into Medicaid. During this time
of transition to full implementation of health
reform, social workers will have an important
role to play in educating their clients about the
changes in Medicaid eligibility, assessing their
clients’ eligibility for Medicaid, and encouraging
those who are eligible to enroll in the program.
The failure of immigration reform and legis-
lation restoring immigrants’ access to public
benefi ts suggest a policy advocacy area where
social workers can become involved.
State Children’s Health Insurance
Program
The State Children’s Health Insurance Program
is a federally funded and state-administered
health insurance program for children up to
200% (or higher) of the federal poverty level.
(States that already had extended coverage to
children to levels at, near, or above 200% of
poverty when the new law was enacted could
further extend coverage up to 50 percentage
points above whatever limits were in place in
March 1997.) States that elect to participate
in the program are entitled to higher federal
contributions for every state dollar spent on
child health programs. In designing their child
health programs, states have the option to ex-
tend Medicaid coverage, create a separate pro-
gram, or fashion some combination of the two.
Unlike Medicaid, SCHIP is not an open-ended
entitlement but a capped entitlement; states,
not children, are entitled to assistance (Rosen-
baum, Johnson, Sonosky, Markus, & DeGraw,
1998). Moreover, the law caps federal fi nan-
cial contributions to states at an annual aggre-
gate level. Nearly $40 billion in federal funds
were made available to states between 1998
and 2007 with an average allocation of $4 bil-
lion per year (Dubay, Hill, & Kenney, 2002).
SCHIP originated in the Balanced Budget Act
of 1997 and was reauthorized through 2013
under the Children’s Health Insurance Pro-
gram Reauthorization Act of 2009 (CHIPRA).
When the CHIPRA reauthorization expires,
the PPACA will extend authorization to 2015
but also requires states to hold the line on eli-
gibility rules as of March 2010, when the law
was enacted. PPACA also expands the funding
available to states through an increase in the
federal match rate.
All states (and the District of Columbia
[DC]) participate in the SCHIP program. Of
these, 12 states (including DC) expanded their
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110 Foundations of Social Work in Health Care
existing Medicaid programs, 18 states created
new state child health programs, and 21 states
adopted some combination (CMS, 2004g).
States that choose to implement a separate
child health program have the fl exibility to
adopt more limited benefi t packages than the
state’s Medicaid program, impose cost sharing
at signifi cantly higher levels than in Medicaid,
and cap enrollment.
In this environment of dramatic change for
Medicaid and SCHIP, social workers can help
individuals and organizations make the tran-
sition by educating clients about their cover-
age options and the requirements to maintain
coverage. Indeed, social workers employed
in hospitals, ambulatory clinics, schools, and
social service agencies have been conduct-
ing application assistance and outreach since
SCHIP’s enactment.
The combination of health reform and state
fi scal crises present an interesting challenge for
the maintenance or increase of Medicaid and
SCHIP coverage until 2014 (Kaiser Commission
on Medicaid and the Uninsured, August 2010).
The recession simultaneously reduced state
revenues and increased state social service and
health-care demands. Stimulus support under
the American Recovery and Reinvestment Act
provided fi scal relief to states in 2010. Under
reform, states have signifi cant responsibilities to
upgrade information technology, create coordi-
nation between new health insurance exchanges
and Medicaid, and pilot numerous delivery sys-
tem reforms and long-term care innovations.
This interim period before health reform is fully
implemented will produce an interesting con-
test between the federal government seeking
to maintain states’ level of effort and Medicaid
coverage and the states facing dramatic fi scal
crises brought on by the recession.
HEALTH-CARE REFORM:
HISTORY AND CULMINATION
Enactment of the PPACA was the culmination
of almost a century of political struggle and
incremental steps toward universal coverage
and access. A brief historical review of such
failed efforts is instructive, because it points to
the differences in approaches and raises issues
that are likely to be revisited again.
Support for national health insurance dates
back nearly a century. President Theodore
Roosevelt, in his unsuccessful reelection bid
against Woodrow Wilson in 1912, endorsed
health insurance for all Americans (Davis,
2001; Kronenfeld & NetLibrary, 2002; Starr,
1982). The fi rst national health insurance re-
form model bill was proposed in 1915 by the
American Association for Labor Legislation
(AALL), a group of social progressives. The
AALL’s model bill provided medical coverage
to lower-paid workers and their dependents. It
was fi nanced by a tax on wages paid by em-
ployees, employers, and the states. Its eventual
defeat is attributed to opposition from special
interests (physicians, labor, and business) and
America’s entry into World War I (Starr, 1982).
At this point, the movement for universal
health insurance stalled. Notably, President
Franklin Roosevelt omitted national health
insurance in his proposed Social Security bill
because of concern that opposition would
jeopardize the entire proposal (Kronenfeld
& NetLibrary, 2002). Momentum for univer-
sal health insurance coverage did not emerge
again until the 1940s. Introduced in 1943 in
the U.S. Congress by Senators Robert Wagner
and James Murray and Representative John
Dingell, the Wagner-Murray-Dingell bill was
the fi rst congressionally sponsored bill to pro-
vide mandatory national health insurance. The
bill sought to provide physician and hospital
care to employees and retirees under the So-
cial Security system. It included an employer
mandate system of fi nance in which employers
and employees contributed to a national trust
fund that reimbursed providers (Bodenheimer
& Grumbach, 2002; Starr, 1982). Amid op-
position from organized medicine, Congress
never voted on the bill (American Historical
Association, n.d.). In 1945, President Truman
endorsed a similar bill, becoming the fi rst
president to send a national health insurance
bill to Congress. Physicians and other health-
care interests opposed the health-care bill and
federal agencies opposed the plan or bestowed
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Health Policy and Social Work 111
only lukewarm support (Starr, 1982). Ulti-
mately, only one component of the bill, the
Hospital Survey and Construction Act (known
as the Hill-Burton Act), was signed into law.
Despite the defeat of the Wagner-Murray-
Dingell bill, it set the stage some 20 years
later for the enactment of Medicare in 1965
(discussed in detail earlier). In an era in
which fewer than 15% of the elderly popula-
tion had health insurance, Congress adopted
the Wagner-Murray-Dingell approach but re-
stricted it to people age 65 and older. As with
the original Wagner-Murray-Dingell bill, insur-
ance is compulsory and is fi nanced (in part) by
a payroll tax. A companion program, Medicaid
(also described earlier), enacted in 1965, ad-
opted a very different model, with coverage
provided only to certain groups of low-income
people and fi nanced by general federal and
state taxes (Bodenheimer & Grumbach, 2002).
In 1970, Senator Edward Kennedy and
Representative Martha Griffi ths introduced
a universal health insurance plan that went
farther than either the AALL legislation or
the Wagner-Murray-Dingell bill. A single-
payer plan, the Kennedy-Griffi ths proposal
provided a national health insurance system
administered by the federal government. It
was fi nanced by employment taxes (payroll
and self-employment) and by general tax rev-
enues. Like its predecessors, the bill could not
overcome opposition from organized interests
(Bodenheimer & Grumbach, 2002).
As an alternative to the Kennedy-Griffi ths
bill, President Nixon proposed a national
health insurance plan that was administered
privately (not by the government). His pro-
posal imposed an employer mandate for those
with 25 or more employees (Bodenheimer &
Grumbach, 2002; Davis, 2001) and proposed
public plans that would replace and improve
on Medicare and Medicaid (Davis, 2001).
With its focus on the private sector, the Nixon
proposal marked a clear departure from ear-
lier proposals that relied on government fi -
nancing (Bodenheimer & Grumbach, 2002).
Its defeat is attributed to lack of public will
(Bodenheimer & Grumbach, 2002) and politi-
cal scandal (Plissner, 2001).
President Carter supported a comprehen-
sive program of national health insurance dur-
ing his successful bid for the presidency, but
skyrocketing infl ation rates detracted attention
from national health reform (Kronenfeld &
NetLibrary, 2002).
A congressionally mandated commission,
the Bipartisan Commission on Comprehensive
Health Care (called the Pepper Commission
after its fi rst chairman, Congressman Claude
Pepper, who served until his death), in 1990
recommended a pay-or-play approach to em-
ployer coverage. Interest in comprehensive
health reform legislation accelerated following
the commission’s recommendations (Mueller,
1993). Senator Mitchell later adopted the pay-
or-play model in bipartisan legislation (Davis,
2001). The legislation required employers to
either provide a health plan for their employ-
ees or pay into a state insurance fund. A com-
parison of these major types of health-care re-
form approaches is found in Table 5.2.
President Bill Clinton pushed strongly for
comprehensive health-care reform in what
culminated as the Health Security Act legisla-
tion introduced in Congress in 1993. The leg-
islation assured universal coverage through an
“individual mandate,” which required citizens
and legal residents to purchase standardized
comprehensive insurance coverage through a
regional alliance, a state-established interme-
diary that contracted with health insurance
plans. The legislation created an “employer
mandate”; universal coverage was fi nanced
principally by mandatory contributions from
employers (roughly 80%). Emphasizing indi-
vidual responsibility, the legislation also re-
quired contributions from employees (roughly
20%). (Persons who were not in the workforce
were entitled to income-related subsidies to
purchase coverage through the alliance.) Fed-
eral subsidies supplemented contributions
made by many fi rms and individuals. The
Medicare program remained in place and was
expanded to include prescription drug cover-
age. Medicaid coverage was supplanted by the
alliance plans, with the exception of nonacute
care for cash-assistance recipients who en-
rolled in health plans through the alliance but
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112 Foundations of Social Work in Health Care
retained Medicaid coverage (Fuchs & Merlis,
1993).
The defeat of the Clinton plan in 1994 is at-
tributable to numerous factors. Commentators
ascribe failure to the political process and, in
particular, to misguided leadership (Johnson &
Broder, 1996), political naivete (Brown, 1996),
failure of public deliberation (Heclo, 1995), a
narrow base of presidential political support
(Heclo, 1995), insuffi cient attention to timing
(Hamburg & Ballin, 1995; Johnson & Broder,
1996), failure to sell the plan to the public
(Blendon, Brodie, & Benson, 1995), opposi-
tion from special interests that had a stake in
the status quo (Judis, 1995; Oberlander, 2003),
and the structure of U.S. political institutions
(Oberlander, 2003). Its defeat also is attributed
to the size and complexity of the legislation it-
self (Johnson & Broder, 1996; Starr, 1995) and
to antistatist values (Jimenez, 1997; Johnson
& Broder, 1996; Oberlander, 2003; Skocpol,
1995).
The specifi cs of the Obama Health Plan
grew out of a set of campaign commitments,
a political strategy, and a variety of compro-
mises necessary to reconcile House and Senate
differences. A complex and bipartisan reform
in the State of Massachusetts in 2006 set the
stage for a proposal that built on a require-
ment for private health insurance coverage,
with a variety of subsidies and Medicaid ex-
pansions to cover low- and moderate-income
populations. The Massachusetts experiment
had demonstrated that it was possible to
assuage the many concerns of providers, ad-
vocates, and insurers in implementing reform
and, by 2009, only 2.7% of the population
were uninsured.
The political strategy that Obama pursued
deliberately did not replicate the process of
the Clinton plan. The administration provided
relatively little guidance in the early phases
of policy development, instead relying on
congressional process and committees to ne-
gotiate the key provisions. Further, the admin-
istration worked to bring the various special
interest groups “inside the tent” in the negotia-
tions, to try to avoid the fi erce opposition to
reform that had been engendered by the Clin-
ton approach. At crucial political moments in
the evolution of the Obama plan, the Pharma-
ceutical Manufacturers Association (PhRMA),
the insurance industry, hospitals, doctors, and
other key special interests, and stakeholders
publicly and visibly supported the reform. In
each case, however, serious concessions and
compromises had been made to win their
support. Critics on the left suggested that the
emerging legislation did not represent a signif-
icant and bold transformation of the system—
such as a single-payer approach. Critics on
the right argued that the proposed legislation,
especially its mandate for individual coverage,
represented a major incursion into individual
liberties and structurally a major takeover of
health services by the government.
After a surprising Republican Senate vic-
tory in Massachusetts (ironically an election
Table 5.2 Comparison of Major Types of Health Care Reform Approaches
Type of Reform Mandatory/Voluntary Brief Description
Single payer Mandatory Single government-run insurance organization collects
health-care fees and reimburses providers.
Employer mandate Mandatory Employers are required to contribute to the cost of
health-care coverage for employees and dependents.
Vouchers/tax credits Voluntary Individuals purchase health insurance with the
assistance of government subsidies.
Medical savings accounts Voluntary Individuals save money in tax-exempt accounts that
they can use to pay medical expenses.
Individual mandate Mandatory Employees are required to purchase insurance.
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Health Policy and Social Work 113
to fi ll the seat of long-term reform champion
Edward (Ted) Kennedy), the political calcu-
lus of health-care reform shifted still again in
2010. Through a complicated set of legislative
maneuvers, the House version of the legisla-
tion was adopted without change by the Senate
(avoiding the need to go through Conference
Committee and renegotiate with the House),
and further changes were adopted in the con-
text of a subsequent large-scale budget recon-
ciliation bill, the Health Care and Education
Reconciliation Act of 2010.
KEY FEATURES OF HEALTH
REFORM
In addition to changes in Medicare and Med-
icaid just described, PPACA makes signifi cant
changes in overall insurance coverage and reg-
ulation, affordability, quality, long-term care
coverage, workforce development, and health
promotion and prevention.
Under the new law, most individuals will
be required to demonstrate health insurance
provided through their employer, Medicaid,
SCHIP, or Medicare, or to purchase health-
care coverage through newly formed health in-
surance exchanges. (Individuals subject to the
mandate and who do not have insurance cov-
erage will be required to pay a penalty based
on their income.) Larger employers with more
than 50 employees must provide coverage for
their workforce or pay an assessment that is
calibrated to the number of employees partici-
pating in the publicly available options.
Individuals and families with incomes
below 133% of the poverty line will be cov-
ered by Medicaid. Individuals and families
with incomes between 133% and 400% of the
poverty line and who do not receive coverage
from their employers or public programs are
eligible for premium subsidies to make cover-
age affordable. These premium subsidies will
be applied to insurance coverage available
through new state health insurance exchanges,
which will function like marketplaces where
individuals and families can purchase stan-
dardized health insurance plans. Low-income
individuals are also eligible for cost-sharing
subsidies.
The new law contains numerous provisions
to regulate insurance coverage and protect con-
sumers. These provisions protect individuals
with preexisting conditions, regulate the rates
and underwriting practices that determine eli-
gibility and premiums, require certain forms of
information and customer service (such as call
centers), and control marketing practices.
Although the new law emphasizes primary
care delivery as an important solution to the
costs, access, quality, and accountability prob-
lems in health care, it is well known that there
are huge shortages in primary care physicians,
nurses, and allied health professionals, includ-
ing social workers. PPACA allocates an addi-
tional $11 billion to the federal health center
program over the next fi ve years. These new
monies are in addition to the annual discre-
tionary funding ($2.2 billion in 2010). PPACA
also increases reimbursement for primary care
“evaluation and management” services, pro-
vides additional funding and regulates slots for
primary care training, and provides additional
loan forgiveness and incentives for physicians
to practice primary care in underserved areas.
PPACA also provides extensive funding and
incentives to increase the pipeline of nurses
who will enter primary care, including provi-
sions to support nurse-managed primary care
clinics.
Numerous provisions of the new law are
directed at encouraging prevention and health
promotion. Some of these provisions, such as
reimbursement for preventive visits in Medi-
care, encourage more health promotion in the
health-care delivery system. Some provisions
are directed at increasing wellness programs
sponsored by employers. Still a third arm of
the legislation funds public health program-
ming for obesity, infectious diseases, and other
preventable conditions in community settings.
Long-term care coverage will be provided
to participants who sign up for voluntary insur-
ance under the Community Living Assistance
Services and Supports program. Although
many of the details of this program are yet to
be determined, individuals will be eligible to
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114 Foundations of Social Work in Health Care
contribute to a plan that provides a certain dol-
lar coverage for in-home or community-based
long-term care expenses. After contributing
through payroll deductions for at least fi ve
years (the “vesting” period), individuals will be
eligible for up to $50 per day for the social and
long-term care supports necessary to keep them
in the community. The law also makes numer-
ous Medicaid changes designed to encourage
more community-based long-term care op-
tions, making it easier for states to innovate in
home and community-based services as well as
provide incentives and coverage for attendants
and other community-based supports for ben-
efi ciaries who are aged and disabled.
POLICY ISSUES FOR
SOCIAL WORK
The PPACA shifts the orientation of health in-
surance and health policy to a more preventive
and primary care mode. Now enacted, the law
shifts much of the implementation challenge
to the states. States will have responsibility to
implement health exchanges and restructure
their delivery systems to respond to signifi cant
new low- and middle-income populations who
now have insurance coverage. This new model
will put particular stressors on the delivery
systems that exist in medically underserved
areas (with already existing shortages of pro-
viders) as well as rural areas. Social workers
can play important roles as policy implemen-
tors and advocates as these delivery system
changes take place. It will be important to
work collaboratively with primary care, nurs-
ing, public health, and social service organi-
zations and providers in shaping the delivery
systems required for successful implementa-
tion of reform.
In addition to the fi nancing and delivery
system issues that surround Medicare, Med-
icaid, and national health reform, social work
has particular interests in the alleviation of
health disparities, the future of the so-called
health safety net, as well as the revitalization
and replenishment of social work professional
roles in health care.
Uninsured
The PPACA shifts attention away from the un-
insured, who will no longer be in the policy
spotlight. The individual mandate to purchase
insurance is a key provision in PPACA, but it
is essential to recognize that the PPACA falls
short of achieving universal insurance. At full
implementation in 2019, it is estimated that
23 million people will be uninsured. The pool
of uninsured will be composed of individuals
who are excluded from coverage expansions,
those who opt out of coverage, and those who
are left without coverage although they are
eligible. This number represents 8% of the
total U.S. nonelderly residents, when includ-
ing those residing unlawfully; excluding the
undocumented, the uninsured share is 5% of
all nonelderly residents. Until 2019, the num-
ber of nonelderly people who are uninsured is
predicted to hover around 50 million through
2013 and then is expected to decrease to 31
million in 2014, the year when a number of
coverage expansions take effect. After 2014,
the number of uninsured continues to decline
but never falls below 20 million.
People who remain uninsured will fall into
two categories: exempt from the penalty and
not exempt. Several groups of people are ex-
empt from the penalty associated with failing
to purchase health insurance coverage. These
include: undocumented immigrants, individu-
als who are unable to fi nd affordable health
insurance coverage (i.e., health insurance
premium exceeds 8% of income), individuals
who claim a (yet undefi ned) hardship exemp-
tion, people who are without health insurance
coverage for less than three months, people
whose gross income is below the threshold
for fi ling a federal income tax return, mem-
bers of American Indian/Alaska Native tribes,
members of recognized religious groups that
embrace teachings opposed to the acceptance
of the benefi ts of insurance, and incarcerated
individuals.
The Congressional Budget Offi ce (CBO)
has estimated that of the approximately 21
million people who are projected to be unin-
sured in 2016, approximately 4 million will
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Health Policy and Social Work 115
pay a penalty for failing to purchase insurance
coverage (CBO, 2010). Of these 3.9 million, 1
million uninsured individuals who pay the pen-
alty have low incomes; specifi cally, 400,000
people are estimated to have income below
the poverty line and 600,000 are estimated to
have income between 100% and 200% of the
poverty line. An additional 1.5 million unin-
sured individuals who pay the penalty have
moderate incomes between 200% to 300% of
the poverty line (.8 million) or between 300%
to 400% of the poverty line (.7 million). The
majority of uninsured who are subject to the
penalty are projected to have incomes of 400%
or more (2.4 million).
The CBO estimates do not include a com-
plete itemization of the 23 million uninsured.
But it is known that the largest share of the
uninsured will be undocumented immigrants.
Undocumented people are prohibited from
purchasing insurance through the new ex-
changes and are ineligible for Medicaid cov-
erage except for emergency medical services.
People who are in the country unlawfully may
be covered by an employer-sponsored health
plan or purchase insurance from companies of-
fering their products outside of the state-based
insurance exchanges. They are estimated to
number 8 million and to account for about
one third of the uninsured in 2019.
The next largest group of uninsured will be
individuals who are eligible for—but do not
enroll in—Medicaid. Although the new law
extends coverage to individuals who are under
age 65 and have income up to 133% of the
poverty level, it is well documented that not all
eligible individuals actually obtain Medicaid
coverage. There is considerable state variation
in the rate of participation in Medicaid among
eligible individuals. The General Account-
ability Offi ce (GAO) has documented that
between 56% and 64% of eligible nonelderly
adults enroll (GAO, 2005).
The phenomenon of eligible people not
enrolling in public programs is not new. A
previous study (Holahan, Cook, & Dubay,
2007) estimated that a quarter of the unin-
sured in 2004 were eligible for public pro-
grams but not enrolled in them. Davidoff,
Garrett, and Yemane (2001) conducted a
study of Medicaid-eligible adults who are
not enrolled and found that, compared with
Medicaid enrollees, Medicaid-eligible-but-
not-enrolled individuals are less likely to
have chronic illnesses and are in better
overall health. Despite their better health,
however, Medicaid-eligible-but-not-enrolled
adults still face substantial access barriers
and, as a result, use fewer services. Com-
pared with their Medicaid benefi ciary coun-
terparts, Medicaid-eligible-but-not-enrolled
adults are more likely to be older, married,
White or Hispanic, an immigrant, working
full time, and have incomes between 50%
and 100% of the poverty line (Davidoff et al.,
2001). It is important for social workers to
understand who has fallen through the Med-
icaid cracks in the past, because adults who
share these characteristics also might be sus-
ceptible to failing to enroll in Medicaid in the
post–health reform era.
Because of its 2006 adoption of compre-
hensive health reform legislation, Massachu-
setts foreshadows likely successes and failures
that the country may experience as it rolls out
a similar plan. The people who remain unin-
sured in Massachusetts are: male, young (age
18–26), and single; Hispanic; a noncitizen;
and an adult with limited English profi ciency
or living in a household in which there is an
adult unable to speak English; an adult who
lacks a high school education; below 150% of
the poverty line; and residing in a metropolitan
area (Long, Phader, & Lynch, 2010). Further,
it is reported that 42% of the uninsured adults
in Massachusetts have income below 150% of
the poverty line, an amount that makes them
eligible for a full premium subsidy (Long
et al., 2010). Thus, while affordability will be
one important factor in predicting participa-
tion in health insurance coverage, it is by no
means the only important factor. Cultural char-
acteristics and language, such as inability to
communicate well in English, low literacy, and
noncitizenship, appear to make people espe-
cially vulnerable to being uninsured. As social
workers routinely help people apply for public
benefi ts and for subsidized coverage through
JWBT514_ch05.indd 115JWBT514_ch05.indd 115 9/21/11 7:42 PM9/21/11 7:42 PM
116 Foundations of Social Work in Health Care
the state-based exchanges, it will be important
for them to target outreach and enrollment as-
sistance to these at-risk populations.
Health Disparities
Wide disparities in access, costs, quality, and
outcomes exist across groups in their health-
care use, quality, and outcomes. The most vis-
ible examples have been differences in infant
mortality, low birth weight, and adverse birth
outcomes by race. African Americans experi-
ence infant mortality rates double those of
White Americans. This differential has been
stubbornly consistent, even as infant mortality
rates have dropped precipitously over the past
four decades. Prostate cancer rates are 60%
higher for African American men as compared
to White American men. African Americans
experience signifi cantly higher rates (and
higher death rates) from cardiovascular dis-
ease and stroke, diabetes, and HIV/AIDS as
well as other major categories of disease and
mortality. Other ethnic and racial groups also
exhibit high rates of morbidity and mortality
that are apparently not well addressed by the
public health or health delivery system. For
example, obesity and diabetes present at high
rates in the American Indian/Alaskan Native
population, the Mexican American population,
and the Pacifi c Islander/Asian American popu-
lation.
Racial and ethnic disparities have long been
known to health services researchers and pol-
icy makers but more recently have become a
matter of signifi cant policy concern. A major
impetus for national policy attention to ra-
cial and ethnic disparities was the Institute of
Medicine (IOM) report, Unequal Treatment:
Confronting Racial and Ethnic Disparities in
Healthcare (Smedley, Stith, Nelson, & U.S.
Institute of Medicine, Committee on Under-
standing and Eliminating Racial and Ethnic
Disparities in Health Care, 2002). The IOM re-
port documented signifi cant differences in use
and quality of health services—test, sophis-
tication of treatment, and so on—even when
insurance and income were controlled. The
report was controversial, because it identifi ed
discrimination in medical practice as a sig-
nifi cant factor over and above the traditional
access factors and operation of the delivery
system. More specifi cally, the report focused
on stereotyping and prejudice by clinical pro-
viders, whether conscious or unconscious.
The federal government, as well as numer-
ous health foundations, has identifi ed racial
and ethnic disparities as a major initiative for
funding, clinical and services attention, and
research. Congress now requires an annual re-
port, prepared by the Agency for Healthcare
Research and Quality on issues in address-
ing disparities across a variety of vulnerable
groups: the low-income population, racial and
ethnic minorities, women, children, elderly
people, and individuals with special or chronic
health-care needs. The issues are complex and
involve interactions among underlying social
circumstances, health behaviors, and health
services delivery.
Health-Care Safety Net
Because so many individuals and families have
experienced access problems due to fi nancial
and nonfi nancial barriers, the delivery of care
by public and nonprofi t organizations that pro-
vide care for free or on the basis of ability to
pay is a critical issue (Smedley et al., 2002).
These so-called safety net providers include
public hospitals and clinics, federally qualifi ed
health centers (FQHCs), specialty providers
(such as reproductive health centers), and free
clinics that rely principally on volunteer con-
tributions. Signifi cant amounts of care also are
provided by hospitals, physicians, and clinics
in the form of free or subsidized care. Particu-
lar services, such as emergency room care or
burn care, are provided disproportionately to
uninsured patients because of poverty, short-
comings of the primary or public health sys-
tems, or regulatory requirements.
Historically, these providers have relied
heavily on: grants from federal, state, and
local sources; Medicaid and FQHC reim-
bursements; and private philanthropy. In the
short run, before health reform is phased in,
these sources are under stress in most states,
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Health Policy and Social Work 117
and none has been able to keep up with the
real costs of delivering health services. In the
longer run, many urban centers will need to
address planning, governance, and coordina-
tion of the safety net providers as health re-
form is implemented. The PPACA provides
substantial new funding for community health
centers—$11 billion over fi ve years—with the
expectation that these critical pieces of the
safety net will implement some of the vision
of community-based primary care as well as
respond to the needs of uncovered individuals,
such as undocumented workers, through the
transition of reform.
Rural safety net providers have faced even
greater challenges as the combined effects of
technology growth, diffi culties in recruiting
and retaining physicians and allied health per-
sonnel, and payment policies have conspired
against the efforts of rural areas to maintain
small hospitals and access to primary care
(Ormond, Wallin, & Goldenson, 2000). It
is diffi cult to achieve the effi ciencies and
technologies of care demanded in modern
medicine with the relatively small number
of patients who, by defi nition, are present in
rural hospitals and clinics. Doctors looking for
colleagues, wanting to refer to specialists, or
looking for access to sophisticated equipment
or facilities naturally will practice in more
urban settings. The fact that many rural areas
have disproportionately high numbers of un-
insured and low-income residents means that
providers face a kind of triple jeopardy: a poor
payer environment, disadvantaged and often
high-risk patients, and high unit costs.
Both Medicare and Medicaid have pro-
moted policies to support rural providers and
physicians, and providers have endeavored to
respond with mergers, affi liations, and the use
of new technologies, such as telemedicine.
The plight of the rural safety net, however,
continues to be a major area of policy concern.
Patient-Centered Medical Home
Although it originated in 1967 as a strategy
to care for children with special care needs,
in recent years the medical home concept has
evolved into a broadly accepted and widely
tested model to deliver high-quality primary
care for anyone. Although there is no standard
defi nition of a medical home, most concur that
its essential components are a personal pri-
mary care physician, enhanced access to care,
care coordination, team-based care, a whole-
person orientation, and a focus on quality and
safety.
The patient-centered medical home model
has been tested in a variety of ways and set-
tings. Dozens of public and private dem-
onstration programs exist, of which the
American Academy of Pediatrics, one of the
physician specialty groups responsible for the
model’s creation, maintains a listing (www
.medicalhomeinfo.org). The model also has
received widespread acceptance. The National
Committee on Quality Assurance has devel-
oped three levels of Medical Home recogni-
tion for health-care practices. The American
Medical Association House of Delegates
adopted the “Joint Principles of the Patient-
Centered Medical Home,” which were devel-
oped by four physician specialty groups. The
new health reform law authorizes continued
experimentation with the medical home model.
Specifi cally, the PPACA authorizes states to
implement a “Health Home” for Medicaid
enrollees with chronic conditions or serious
mental health conditions. The PPACA also
specifi es the patient-centered medical home
as one of the models to test for “high-need”
benefi ciaries under the newly created Center
for Medicare and Medicaid Innovation within
the CMS.
Social workers’ expertise in connecting
clients to appropriate services and resources
makes them especially well suited to play a
role in care coordination activities. With train-
ing and experience in case management, social
workers are adept at each of the care manage-
ment processes: identifying needs and devel-
oping, implementing, and evaluating the care
plan. Arguably, care coordination is one of
the most important components of a medical
home because it can reduce costs and improve
quality of care (McAllister, Presler, & Cooley,
2007). Nevertheless, some evidence suggests
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http://www.medicalhomeinfo.org
http://www.medicalhomeinfo.org
118 Foundations of Social Work in Health Care
that a majority of practices have not adopted
care coordination activities (Goldberg &
Kuzel, 2009). This fi nding suggests a need for
social workers to underscore the importance of
care coordination activities and to step in to
provide this service.
The profession of social work draws on
theories of human behavior and social sys-
tems in order to change and improve the
lives of people and society. Embracing the
person-in-environment perspective, social
workers have special insight into the medi-
cal home whole-person orientation. When
considering the whole person, social work-
ers consider the client’s physical, emotional,
and spiritual attributes in the context of each
of her surroundings—her family, commu-
nity, and society. As health-care practices
begin to implement medical home models,
social workers can bring to the table much
understanding about the whole person and
can help to ensure that this component of the
model is fully realized and adopted. Social
workers also have at their disposal a client-
centered, fi eld-tested tool, the aptly named
person-in-environment system, for classi-
fying problems. This system is intended to
yield a better understanding of the problems
that clients are experiencing so that more ef-
fective interventions can be designed.
Social Work Professional Role
Virtually absent from the policy discussions of
health reform or more narrow considerations
of state Medicaid policy or urban health-
care delivery is the role of social work as a
profession in the health-care system. Profes-
sional roles for social workers have changed
dramatically in recent years, in part as a re-
sult of policy changes. The implementation
of the Medicare Prospective Payment System,
for example, fundamentally changed the re-
sponsibilities for medical social workers to
an emphasis on discharge planning. The pri-
ority for hospitals was to shorten lengths of
inpatient stays. With that priority, an emphasis
emerged to fi nd placements and make arrange-
ments for expedited discharge. Social workers,
with knowledge of community resources, abil-
ity to work with families, and interdisciplin-
ary orientation, became the default solution
to this institutional need. Unfortunately, the
status of medical social work and the breadth
of responsibilities that medical social workers
enjoyed in hospitals devolved as social work
increasingly became identifi ed simply with
“discharge planning.”
With the aging of the population, the grow-
ing primacy of chronic conditions such as dia-
betes and asthma, and the shift to new forms
of community health-care delivery, the social
work profession has the opportunity to defi ne
and advocate for new roles in practice. Efforts
under way by the National Institute of Health’s
National Cancer Institute, CMS, the Health
Resources and Services Administration, the
American Cancer Society, and other local hos-
pitals and clinics to use “patient navigation” to
assist families and vulnerable patients in nego-
tiating clinical, service, and social aspects of
cancer care and chronic disease treatment rep-
resent important areas for role defi nition (or
loss of role defi nition) for social work in health
care (Darnell, 2007). Key to reinvigorating the
social work professional role in health services
delivery will be advocacy in policy: making
sure that criteria, payment, and management
designate social work as the professional pro-
vider of choice.
As advocates and proponents of social jus-
tice, social workers also have a role in arguing
for sound and compassionate policy responses
to disparities in and lack of access to health
care. At a state level, social workers have been
an important voice and source of analysis for
Medicaid and SCHIP coverage and reimburse-
ment policy. At a local level, especially in the
absence of universal coverage, social workers
play an important policy and political role in
the maintenance of the so-called health-care
safety net: public and nonprofi t providers that
serve low income, uninsured, or underinsured
patients. At each of these levels of advocacy,
substantive knowledge of programs and policy
is essential. One source of political capital that
social workers bring to legislative, administra-
tive, and regulatory decisions is their expertise
JWBT514_ch05.indd 118JWBT514_ch05.indd 118 9/21/11 7:42 PM9/21/11 7:42 PM
Health Policy and Social Work 119
in the workings of programs such as Medicare
and Medicaid as well as their understanding of
the real-life effects of these programs on vul-
nerable populations and communities.
CONCLUSION
Health policy in the United States attempts to
address systemic problems of access, costs,
quality, and accountability. With the enact-
ment of PPACA, the dominant policy con-
cerns about the system will shift from access
to costs and quality. Although the architects
of health reform assert that it will lead to
substantial overall cost controls (Orszag &
Emanuel, 2010), others believe that the leg-
islation did not deal with the fundamental
drivers of cost, such as escalating technol-
ogy, delivery system discipline, and insur-
ance. Looked at more carefully, the problem
of costs is not simply the level of health-care
costs in the United States but rather a concern
about the value or benefi t that these services
produce. As the government and private pay-
ers for health care have attempted to gain
control over health-care expenditures, more
and more policy attention has been paid to
ensuring the quality and accountability of the
system. Health policy will be increasingly
preoccupied with outcomes, information, and
incentives for quality care.
The key policy levers for affecting the
size and scope of health services are fi nanc-
ing arrangements (such as taxes and insurance
premiums), payment arrangements (such as
DRGs or managed care capitation payments),
and information sources about quality and ef-
fi ciency of services.
Although access cost, quality, and account-
ability concerns are the primary issues for
policy analysis and reform, all legislative and
regulatory actions in the health system take
place within the context of huge political and
economic interests. The recent history of re-
form was dominated by large interests, such as
the insurance and pharmaceutical industries,
shaping public perceptions and congressional
behavior.
The next phase of reform shifts to the
states, where the implementation of health ex-
changes, Medicaid and SCHIP coverage, de-
livery system reforms, health prevention and
promotion, and workforce development will
determine the ultimate success of PPACA.
The largest transition will be the movement of
uninsured and underinsured populations to a
coverage model where they will be expected
to select and participate in traditional insur-
ance or Medicaid coverage and will be steered
toward mainstream providers and services.
Supporting and advocating for vulnerable
populations during this transition will be a key
role for social workers.
The two large policy arenas for social work
in health care will continue to be the Medicare
and Medicaid programs. In Medicare, the ad-
dition of prescription drug coverage and the
evolution to more competitive and “consumer-
driven” approaches to health plan choice and
coverage will be important frontiers for social
work advocacy and practice. Medicaid is fac-
ing threats to coverage and fi nancing, particu-
larly during the transition to reform in 2014,
when eligibility for Medicaid shifts to 133%
of the poverty line across the country. During
this interim period, states face a kind of policy
scissors: On one side, their economic down-
turn is straining resources and forcing cuts in
programs, while on the other side, the ramp-up
of reform is creating expectations and require-
ments for maintenance and expansion of cov-
erage. The vigilance and advocacy of social
workers will be especially important during
this transitional period.
Social workers will need to be savvy about
these health policy changes in their own prac-
tice, in professional roles that attempt to for-
mulate or implement health policy, and in
promoting broader advocacy for health-care
reform. The implementation of health reform,
rapidly escalating costs, the aging of the pop-
ulation, and increasing pressures to control
public spending will continue to place health
care at the top of the national policy agenda,
providing important opportunities for social
workers to exercise their vital professional, ad-
vocacy, and leadership roles.
JWBT514_ch05.indd 119JWBT514_ch05.indd 119 9/21/11 7:42 PM9/21/11 7:42 PM
120 Foundations of Social Work in Health Care
SUGGESTED LEARNING
EXERCISES
Learning Exercise 5.1
Identify the eligibility criteria for Medicaid for
a low-income person with a disability in your
state. Is the person eligible for other health
insurance coverage besides Medicare? Under
what circumstances would the individual be
dually eligible for Medicare and Medicaid?
What other programs would you explore?
What prescription drug coverage is available
to this individual? What safety net providers
are available to provide health-care coverage?
What gaps in service do you anticipate?
Learning Exercise 5.2
Propose a new professional role for social
workers motivated by health reform. Provide
a one-paragraph job description of this role.
How would you advocate the benefi ts and
rationale of this role to senior policy leader-
ship at the CMS? How would you propose this
role be fi nanced and reimbursed? How would
this role relate to that of other professionals—
physicians, health-care administrators, nurses,
and so on—in the health system?
Learning Exercise 5.3
Identify the single most compelling policy
problem for social workers to address in health
care. Is it disparities in access or outcomes?
Is it the cultural competence of providers? Is
it the erosion of Medicaid coverage in states?
What strategies and approaches would you
propose for social work to infl uence the path
of health policy formulation?
SUGGESTED RESOURCES
More detailed presentations of program data,
policy analysis, and eligibility rules can be
found in government documents, foundation
reports, Web resources, and journals. Social
workers with ongoing interests in health policy
should familiarize themselves with the overall
government program structure and resource
commitment to health services. The most com-
prehensive guide to government entitlement
programs (especially Medicare and Medicaid),
the Green Book, is published periodically by
the U.S. House Ways and Means Commit-
tee and is also available on the Web at www
.gpoaccess.gov/wmprints/green/index.html
Social workers interested in gaining a deeper
understanding of Medicare and Medicaid
should be familiar with the federal program’s
documents, especially “Medicare and You,”
available through the CMS at www.cms.gov
Ongoing policy issues in Medicare and
Medicaid as well as specifi c topics in mi-
nority health, HIV/AIDS, and access for the
uninsured are thoroughly covered by the Kai-
ser Family Foundation and its extensive Web
resources. More information can be found at
www.kff.org
Key journals with which social workers
interested in health policy should be familiar
include Health Affairs, Health Care Financing
Review, and Social Work and Health.
A comprehensive glossary of health-care
terminology has been published as the 2004
edition of AcademyHealth Glossary of Terms
Commonly Used in Health Care, and can be
found at www.academyhealth.org
APPENDIX 5.1: TIMELINE
OF KEY FEDERAL HEALTH
POLICY ACTIONS SINCE
THE NEW DEAL
2000s
2010 Patient Protection and Affordable
Care Act, the Health Care & Education
Reconciliation Act.
2003 Medicare Prescription Drug Improve-
ment and Modernization Act of 2003.
2001 Federal health centers program ex-
panded under presidential initiative.
2000 Breast and Cervical Cancer Preven-
tion and Treatment Act of 2000 permit-
ted states to provide Medicaid to certain
women diagnosed with breast or cervical
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http://www.cms.gov
http://www.kff.org
http://www.academyhealth.org
http://www.gpoaccess.gov/wmprints/green/index.html
http://www.gpoaccess.gov/wmprints/green/index.html
Health Policy and Social Work 121
cancer, regardless of their income or re-
sources.
1990s
1999 Ticket to Work and Work Incentives
Improvement Act of 1999 expanded the
availability of Medicare and Medicaid
for certain disabled benefi ciaries who
return to work.
1997 Balanced Budget Act of 1997 estab-
lished the State Children’s Health Insur-
ance Program (SCHIP) and created the
Medicare. Choice program.
1996 Health Insurance Portability and
Accountability Act (HIPAA); Personal
Responsibility and Work Opportunity
Reconciliation Act of 1996; Mental
Health Parity Act of 1996.
1994 Clinton health plan defeated.
1993 Health Security Act (Clinton Health
Reform Plan) introduced in Congress;
Family and Medical Leave Act of 1993.
1990 Americans with Disabilities Act
(ADA); Ryan White Comprehensive
AIDS Resources Emergency Act.
1980s
1989 Omnibus Budget Reconciliation
Act of 1989; Medicare Catastrophic
Coverage Act repealed.
1988 Medicare Catastrophic Coverage
Act of 1988 provided coverage for cata-
strophic illness and prescription drugs.
1987 Omnibus Budget Reconciliation
Act of 1987 expanded Medicaid eligibil-
ity for pregnant women and children and
established the resource-based relative
value scale for reimbursing physicians
under Medicare; Stewart B. McKinney
Homeless Assistance Act.
1986 Omnibus Budget Reconciliation
Act of 1986; Omnibus Health Act.
1985 Emergency Defi cit Reduction and
Balanced Budget Act; Consolidated
Omnibus Budget Reconciliation Act.
1984 Defi cit Reduction Act of 1984
(DEFRA) required states to extend
Medicaid coverage to children born
after September 30, 1983, up to age 5
in families meeting Aid to Families with
Dependent Children (AFDC) standards;
Child Abuse Amendments established
treatment and reporting guidelines for
severely disabled newborns.
1983 Social Security Amendments estab-
lished the Medicare prospective payment
system (PPS), including the Diagnosis
Related Groups (DRGs) scale for reim-
bursing inpatient services for Medicare
and Medicaid patients.
1982 Tax Equity and Fiscal Responsibil-
ity Act of 1982 (TEFRA).
1981 Omnibus Budget Reconciliation
Act of 1981.
1980 Omnibus Budget Reconciliation
Act of 1980.
1970s
1979 Surgeon General report, Healthy
People, laid foundation for national pre-
vention agenda.
1977 Departments of Labor and Health,
Education, and Welfare Appropria-
tions Act for FY 1977 created the Hyde
Amendment, which prohibited federal
Medicaid payments for abortions, with
certain exceptions.
1973 Health Maintenance Organization
(HMO) Act.
1972 Social Security Amendments of
1972 established the Supplemental Se-
curity Income (SSI) program, created
Professional Standards Review Organi-
zations (PSROs), extended Medicaid eli-
gibility to certain people with disabilities
receiving SSI, and extended Medicare
eligibility to people with end-stage renal
disease (ESRD); National School Lunch
and Child Nutrition Amendments estab-
lished the Women, Infants, and Children
(WIC) program.
1960s
1967 Social Security Amendments of 1967
enacted the Early and Periodic Screen-
ing Diagnosis and Treatment (EPSDT)
benefi t under Medicaid; Mental Health
Amendments of 1967.
JWBT514_ch05.indd 121JWBT514_ch05.indd 121 9/21/11 7:42 PM9/21/11 7:42 PM
122 Foundations of Social Work in Health Care
1965 Social Security Amendments of
1965 created Medicare and Medicaid.
1960 Social Security Amendments of 1960.
1950s
1950 National Science Foundation Act of
1950.
1940s
1946 Hospital Survey and Construction
Act (Hill-Burton Act) provided federal
grants and loans to build hospitals; Na-
tional Mental Health Act.
1944 Public Health Service Act of 1944.
1943 Emergency Maternal and Infant
Care Program provided maternity care
and infants for wives and children of
service members.
1930s
1935 Social Security Act of 1935 passed
including Title V, Maternal and Child
Health.
Sources: Adapted from Healthcare Reform
in America: A Reference Handbook, by J.
J. Kronenfeld and M. R. Kronenfeld, 2004,
Santa Barbara, CA: ABC-CLIO; Appendix 1:
Medicaid Legislative History—1965–2000,
by Henry J. Kaiser Family Foundation, n.d.,
retrieved from http://www.kff.org/medicaid/
loader.cfm?url=/commonspot/security/getfile
.cfm&PageID=14255; Breast and Cervical
Cancer Prevention and Treatment, by Centers
for Medicare and Medicaid Services, 2004a,
retrieved from http://www.cms.hhs.gov/bccpt/
default.asp; CMS History Page Quiz, by Centers
for Medicare and Medicaid Services, 2004b,
retrieved from http://www.cms.hhs.gov/about/
history/quiz/answers.asp; The Mental Health
Parity Act, by Centers for Medicare and Med-
icaid Services, 2004f, from http://www.cms.hhs
.gov/hipaa/hipaa1/content/mhpa.asp/.
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http://www.rwjf.org/files/research/67248.MassReform2008UninsuredBrief
http://www.slate.com/id/1007796
http://www.kff.org/medicare/8103.cfm
http://www.kff.org/medicaid/loader.cfm?url=/commonspot/security/getfile.cfm&PageID=14255
http://www.kff.org/healthreform/upload/Medicaid-Coverage-and-Spending-in-Health-Reform-National-and-State-By-State-Results-for-Adults-at-or-Below-133-FPL
http://www.kff.org/healthreform/upload/Medicaid-Coverage-and-Spending-in-Health-Reform-National-and-State-By-State-Results-for-Adults-at-or-Below-133-FPL
http://www.kff.org/healthreform/upload/Medicaid-Coverage-and-Spending-in-Health-Reform-National-and-State-By-State-Results-for-Adults-at-or-Below-133-FPL
http://www.netLibrary.com/urlapi.asp?action=summary&v=1&bookid=85899
http://www.netLibrary.com/urlapi.asp?action=summary&v=1&bookid=85899
http://www.rwjf.org/files/research/67248.MassReform2008UninsuredBrief
124 Foundations of Social Work in Health Care
Rosenbaum, S., Johnson, K., Sonosky, C., Markus, A.,
& DeGraw, C. (1998). The children’s hour: The State
Children’s Health Insurance Program. Health Affairs,
17(1), 75–89.
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centered medical home improve effi ciency and reduce
costs of care? A measurement and research agenda.
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Skocpol, T. (1995). The rise and resounding demise of the
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Smedley, B. D., Stith, A. Y., Nelson, A. R., & U.S. Institute
of Medicine, Committee on Understanding and
Eliminating Racial and Ethnic Disparities in Health
Care. (2002). Unequal treatment: Confronting racial
and ethnic disparities in health care. Washington, DC:
National Academy Press.
Smith, V., Roberts, D., Marks, C., & Rousseau, D.
(2010). CHIP enrollment: June 2008 data snapshot.
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and the Uninsured.
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American Prospect, 20, 20–31.
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125
6
Theories of Health Behavior
SARAH GEHLERT AND SARAH E. BOLLINGER
Theories of health behavior have the potential
to order the panoply of constructs with which
health social workers are faced and provide
a conceptual framework that assists in un-
derstanding why people behave as they do in
terms of their health. These theories provide
direction for the helping process and structure
for research. They allow us to unite practice
and research by providing a shared language
for discussing clinical realities.
A review of the 15 health social work model
syllabi selected in 1999 by jury in conjunction
with the Council on Social Work Education
(Copeland, Jackson, Jarman-Rohde, Rosen, &
Stone, 1999) revealed a paucity of items related
directly to health behavior theory. This is indeed
the case, although leading social work textbooks
for years have emphasized the importance of
theory in social work practice and research. Hep-
worth, Rooney, Rooney, Strom-Gottfried, and
Larsen (2010), for example, believe that social
work theory is essential both in understanding
clients’ situations and in providing appropriate
interventions. The authors write, “[T]hroughout
our professional history, social workers have
drawn selectively on theories to help understand
circumstances and guide intervention” (p. 18). It
is clear that theory is integral to myriad aspects of
the social work profession, which only serves to
underscore the unsettling lack of health behavior
theory available through social work curriculum.
We could say that social workers in health
care make ample use of theory, if our defi nition
of practice theory were limited exclusively to
orienting theories, such as cognitive, behavioral,
group, or family systems. Social work interven-
tions are based on orienting theories, most of
which come from the fi eld of psychology.
Sheafor and Horejsi (2006) say that “most prac-
tice theories are rooted in one or more orienting
theories” and give the example of “psychosocial
therapy, which is based primarily on psycho-
dynamic theory and ego psychology” (p. 51).
Social workers in health care have used orient-
ing theories amply and creatively, such as in the
adaptation of cognitive and behavioral theories
to produce stress inoculation (Blythe & Erdahl,
1986), a technique for preparing patients for
diffi cult medical procedures.
This chapter argues, however, for a different
category of theories that are equally important
to practice: theories of health behavior. Al-
though orienting theories and theories of health
behavior are related, they differ in two ways.
1. Orienting theories can be seen as narrower
than theories of health behavior because they
focus on the origin and treatment of human
problems rather than the full constellation of
human behavior. Theories of health behavior
are germane to all behaviors, not just those
that are problematic. They might be used
to consider why people protect their health
through exercise and regular physician visits,
for example.
2. Theories of health behavior, while con-
sidering all types of behavior, restrict
themselves to the arena of health. Ori-
enting theories, however, are concerned
with problematic behavior in many areas,
including health, education, employment,
and marriage.
This chapter contends that adding theories
of health behavior to our defi nition of practice
theory provides valuable tools for social work
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126 Foundations of Social Work in Health Care
practice and research in health care. After a
brief discussion of the uses of theory in so-
cial work, a select group of theories of health
behavior are introduced and reviewed. Each
is discussed in terms of its past uses in health
practice and research, its strengths and limita-
tions, and empirical evidence of its ability to
explain health behavior.
Chapter Objectives
• Defi ne theory in general and theories of
health behavior in particular.
• Distinguish theories of health behavior
from orienting theories.
• Discuss ways in which theories of health
behavior could be used to advance social
work practice in health care.
• Discuss ways in which theories of health
behavior could be used to advance social
work research in health care.
• Describe the Health Belief Model, its limi-
tations, and the empirical evidence for its
use.
• Describe the Theory of Reasoned Action,
its limitations, and the empirical evidence
for its use.
• Describe how the Theory of Planned Action
extends the Theory of Reasoned Action and
the empirical evidence for its use.
• Describe the Social Action Theory, its limi-
tations, and the empirical evidence for its
use.
• Describe the Behavioral Model of Health
Services Use, its limitations, and the em-
pirical evidence for its use.
• Distinguish among the fi ve theories in terms
of their limitations and empirical evidence
available for their use.
• Describe the Transtheoretical Model and
how it might contribute to social work prac-
tice and research.
USE OF THEORY IN SOCIAL
WORK PRACTICE AND
RESEARCH
Kerlinger (1986) defi nes the word theory as “a
set of interrelated constructs, defi nitions, and
propositions that present a systematic view
of phenomena by specifying relations among
variables, with the purpose of explaining and
predicting the phenomena” (p. 9). He defi nes
the word constructs as concepts that have been
“deliberately and consciously invented for a
special scientifi c purpose” (p. 27). Constructs
such as well-being, self-esteem, and aggres-
sion are widely used in social work. By virtue
of their ability to propose relationships among
constructs, theories provide order in what oth-
erwise might be an overwhelming confusion
of abstract ideas. This order is especially im-
portant in social work, in which abstract, less
perceptible constructs, such as aggression and
self-esteem, are considered instead of the dis-
crete, directly measurable subjects of inquiry
of the natural sciences (e.g., molecular weight,
temperature). Theory helps to order the array
of constructs with which social workers are
faced, providing a conceptual framework that
assists in understanding client problems and,
in doing so, provides directions for proceeding
with the helping process.
Theory not only provides order for what is
going on with any one client situation or with
clients of the same social worker but also al-
lows us to compare across practice situations
and settings. In this way, we gain a shared un-
derstanding of the dynamics of certain constel-
lations of behavior within the fi eld. In addition,
theory allows us to unite the arenas of research
and practice by providing a shared language
for discussing clinical realities.
Understanding how constructs relate to one
another in the present allows us to predict how
they are likely to operate in the future and,
thus, to plan interventions. Glanz, Rimer, and
Viswanath (2008) write, “A health educator
without theory is like a mechanic or a tech-
nician, whereas the professional who under-
stands theory and research comprehends the
‘why’ and can design and craft well-tailored
interventions” (pp. 25–26). The knowledge
that a certain action, covert or overt, likely
will lead to another action makes it possible
to intervene to promote behaviors that will
have desired outcomes and decrease the likeli-
hood of undesired outcomes. If we know, for
instance, that people who understand their risk
for acquiring a disease will be more likely to
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Theories of Health Behavior 127
engage in preventive behaviors, interventions
can be developed to focus on conveying risk.
Theories and skills are natural partners in
social work practice. As the time allotted to as-
sess and treat client problems decreases, tools
that facilitate assessment and the development
of effective treatment approaches increase in
value. Theory represents the accumulation
of knowledge about human behavior that is
necessary to inform our use of skills. Rely-
ing on theories to help construct interventions
increases the likelihood that they will be suc-
cessful. If successful interventions are imple-
mented as soon as possible after problems are
noted, the hopelessness that results from mul-
tiple treatment failures can be avoided.
An example of how theory provides guid-
ance for practice comes from an empirical
study of adults with epilepsy. Adults with
epilepsy experience high rates of psychoso-
cial problems, such as a suicide rate 5 times
higher than that of the population as a whole
for all types of seizures combined and 25 times
higher for seizures that originate in the tempo-
ral limbic system of the brain (Hauser & Hes-
dorffer, 1990; Robertson, 1997). In attempting
to understand the etiology of these psychoso-
cial problems so that effective interventions
could be designed and implemented, Gehlert
(1994, 1996) hypothesized that some people
with epilepsy generalized their lack of physical
control, as represented by epileptic seizures,
to the social realm, causing them to have very
low expectations that any of their behavioral
efforts would result in foreseeable outcomes.
The basis for this hypothesis was that repeated
disruptions in the action-to-outcome sequence,
such as when a young girl wants to succeed
in school yet cannot because her parents are
unable to provide her with clothing and books,
led to a learned helpless state accompanied
by high rates of depression and other psycho-
social problems. Attribution theory (Abramson,
Seligman, & Teasdale, 1978; Kelley, 1967;
Weiner, 1985), which predicts depression for
people who attribute negative events in their
lives, such as not being able to get or keep a
job, to their own doing, and positive events,
such as being given a compliment, to outside
infl uences (e.g., other people, fate, luck), was
helpful in making sense of how constructs
such as seizure control and psychosocial prob-
lems fi t together.
Although not a theory of health behavior per
se attribution theory (Abramson et al., 1978;
Heider, 1958; Kelley, 1967) has been used
widely to explain behavior. The theory holds
that people, when faced with a world over
which they have little control, attempt to im-
pose control by offering explanations or causes
for what happens to them. Illness is an example
of a situation over which people have little con-
trol, and therefore it elicits causal explanations.
Abramson and colleagues (1978) speak of
three dimensions of causal attributions: (1)
internality versus externality, or whether the
cause is due to the person or to other persons or
circumstances; (2) globality versus specifi city,
or whether the same explanations are used for
a variety of factors or are specifi c to one or a
few factors; and (3) stability versus instability,
which has to do with whether a factor is long
lasting or transient. Pessimistic attributional
style is said to occur when people make stable,
global, internal attributions for bad events.
Attributions, the dimensions of which are
measured using either the Attributional Style
Questionnaire (Peterson et al., 1982) or the
Content Analysis of Verbatim Explanations
technique (Peterson, Bettes, & Seligman,
1985), are useful in explaining health behav-
ior. Peterson, Seligman, and Vaillant (1988)
divided 99 graduates of the 1942 to 1944
classes of Harvard University into those with
optimistic and pessimistic attributional styles
and followed their physical health at 5-year
intervals for 30 years. They found pessimistic
attributional style to predict poor health at ages
45 to 60 years, even when controlling for men-
tal and physical health at age 25 years. The
authors proposed that people with pessimis-
tic attributional styles might tend to become
passive in the face of illness, be less able to
solve problems, and have fewer supportive so-
cial networks to buffer against stress. Negative
attributional style has been associated with
eating disorders in women (Morrison, Waller,
& Lawson, 2006) and poorer outcomes among
people with multiple sclerosis (Kneebone &
Dunmore, 2004).
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128 Foundations of Social Work in Health Care
In the example of epilepsy, understanding
how a key cognitive component of learned
helplessness, termed negative attributional
style, developed in people with epilepsy
helped to determine both a point and a target
of intervention. For example, people with epi-
lepsy are faced with multiple messages from
others that they are not as effi cacious as other
people. Even the most benign actions of oth-
ers, such as assistance during a seizure, convey
subtle messages of ineffectiveness and lack of
control that, when internalized over the years
by people with epilepsy, lead to negative at-
tributional style. A small-group intervention in
which individuals with epilepsy are helped to
identify when negative thoughts are likely to
occur, stop the thoughts, and substitute more
realistic appraisals has proved effective in de-
creasing negative attributional style and de-
pression (Gehlert, 1995).
THEORETICAL APPROACHES
BASED ON RATIONAL
CHOICE
The fi rst theories of health behavior to be con-
sidered hold that human behavior stems from
rational, logical thought processes. People make
health choices largely based on consideration of
the costs and benefi ts of various actions. The
two major versions are the Health Belief Model
and the Theory of Reasoned Action. The The-
ory of Planned Behavior (Ajzen, 1991; Ajzen
& Madden, 1986) is an extension of the Theory
of Reasoned Action and not a theory in itself.
Health Belief Model
The Health Belief Model (Hochbaum, 1958;
Rosenstock, 1960, 1966, 1974) was devel-
oped originally to explain why people failed
to participate in health screening for tubercu-
losis despite accommodations such as mobile
vans that came into their neighborhoods. The
model posits two major components of health
behavior: threat and outcome expectations
(see Table 6.1). Threat involves perceived sus-
ceptibility to an ill-health condition and the
perceived seriousness of that condition. In the
case of risk for acquiring AIDS, for example,
threat would entail believing that one is suscep-
tible to acquiring AIDS and that it is as serious
as the medical community portrays it to be.
Outcome expectations are the perceived
benefi ts of a specifi ed action, such as using
condoms to prevent the transmission of HIV,
and the perceived barriers to taking that ac-
tion. The benefi t of taking action to reduce the
risk of acquiring AIDS might be staying alive,
whereas barriers might be the cost of buying
condoms or fear that one will be rejected after
asking a partner to use them.
The Health Belief Model has been used with
a variety of health behaviors and conditions.
These include medication adherence among
psychiatric outpatients (Kelly, Mamon, & Scott,
1987), obtaining infl uenza vaccination by indi-
viduals at high risk for acquiring life-threatening
complications of infl uenza (Larson, Bergman,
Heidrich, Alvin, & Schneeweiss, 1982), screen-
ing behaviors for breast and cervical cancer (In-
gledue, Cottrell, & Bernard, 2004; Ko, Sadler,
Ryujin, & Dong, 2003; Tanner-Smith & Brown,
2010), and adherence by lower-socioeconomic-
status mothers to weight-loss regimens for their
obese children (Becker, Maiman, Kirscht, Haef-
ner, & Drachman, 1977).
Empirical evidence supports the ability
of the Health Belief Model to predict health
outcomes. Becker and colleagues (1977) were
able to explain 39% of the variance in dietary
adherence using the Health Belief Model’s
components in multiple regression analysis.
This means that when components of the
model, such as perceived susceptibility, were
measured in a group of people whose dietary
adherence was also measured, the model’s
Table 6.1 Major Elements of the Health Belief
Model
I. Perceived Threat
A. Perceived susceptibility
B. Perceived severity
II. Outcome Expectations
A. Perceived benefi ts
B. Perceived costs
III. Expectations of Self-Effi cacy
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Theories of Health Behavior 129
components were relatively important to un-
derstanding dietary adherence. Although other
factors must be considered to fully explain
what determines dietary adherence, the Health
Belief Model adds signifi cantly to our ability
to understand the phenomenon.
Janz and Becker (1984) published a meta-
analysis of 18 prospective and 28 retrospec-
tive applications of the Health Belief Model
completed during the fi rst 30 years of its use.
The ability of each component of the model
to predict health outcomes, such as adopting
health preventive behaviors, was calculated
by dividing the number of positive, statisti-
cally signifi cant fi ndings for a component by
the number of studies for which signifi cant re-
sults were obtained. Perceived threat was the
most and perceived costs the least signifi cant
predictor of outcomes, with perceived suscep-
tibility and perceived benefi ts intermediate
between the two. This fi nding suggests that
the perceived impediments to engaging in a
behavior to improve health (whether they are
real or not), such as fear of losing one’s hair
from radiation therapy for cancer, are more
signifi cant than other factors (e.g., perceptions
of severity, susceptibility, and benefi t) in de-
termining whether a person will engage in the
behavior. Perceived severity is the least signifi -
cant factor in determining behavior.
Theory of Reasoned Action
The Theory of Reasoned Action (Fishbein,
1967; Fishbein & Ajzen, 1975) extends the
Health Belief Model to include the infl uences
of signifi cant others in the environment on in-
dividual health behavior. The theory assumes
that behavior is determined immediately by be-
havioral intention (see Figure 6.1). Behavioral
intention is, in turn, determined by a person’s
attitude toward the behavior and the infl u-
ence of signifi cant others in the environment,
or social norm. Attitude toward the behavior
consists of two things: (1) an individual’s belief
that if a behavior is performed, a given outcome
Behavioral
Beliefs
Evaluation of Attitude
Behavioral Toward
Outcomes Behavior
Normative
Beliefs
Subjective Behavioral
Behavior
Motivation Norm Intention
to Comply
Control
Beliefs Perceived
Behavioral
Perceived Control
Power
Figure 6.1 Combined Theory of Reasoned Action (TRA) and Theory of Planned Behavior (TPB)
Components shared by the TRA and TBP are shown in regular type. Those unique to the TPB are shown in bold type.
JWBT514_ch06.indd 129JWBT514_ch06.indd 129 9/21/11 7:42 PM9/21/11 7:42 PM
130 Foundations of Social Work in Health Care
will accrue, and (2) how important the indi-
vidual considers the outcome to be.
Social norm comprises beliefs about what
valued others will think about one’s perform-
ing a behavior coupled with the individual’s
motivation to comply with their opinions. For
example, a practitioner might consider a young
woman’s perceptions of what her boyfriend,
closest friend, mother, and physician would
think about her having an abortion and her
motivation to comply with their opinions in at-
tempting to understand or predict her behavior.
The Theory of Reasoned Action has been
applied to many health behaviors and condi-
tions, including substance abuse (Beck, 1981),
weight loss (Sejwacz, Ajzen, & Fishbein,
1980), and hypertension (Norman, Marconi,
Schezel, Schechter, & Stolley, 1985). Because
it includes others who hold infl uence over the
individual, the Theory of Reasoned Action
has been widely used in studies of the health
behavior of adolescents, often in the area of
contraception decision making (Albarracín,
Johnson, Fishbein, & Muellerleile, 2001;
Baker, 1988), abortion (Smetana & Adler,
1986), and AIDS risk behavior (Jemmott, Jem-
mott, & Fong, 1992). Baker was able to predict
36% of the variance in intention to use con-
doms with steady partners and 8% with new or
infrequent partners by taking into account atti-
tudes toward condom use and subjective norm
among patients in a sexually transmitted dis-
ease clinic. Jemmott and colleagues designed
an intervention for African American adoles-
cent males that emphasized knowledge, atti-
tudes, and skill building based on the Theory
of Reasoned Action to decrease intentions to
engage in AIDS risk behavior and the behavior
itself. Adolescents who received the interven-
tion reported signifi cantly fewer occasions of
coitus, fewer partners, more frequent condom
use, and a lower incidence of heterosexual anal
intercourse than did adolescents in the control
condition. A recent meta-analysis conducted
by Cooke and French (2008) also found that
the Theory of Reasoned Action was able to
successfully predict participation in a variety
of screening behaviors, such as for breast and
colorectal cancer and prenatal screening.
Theory of Planned Behavior
Ajzen and Madden (1986; Ajzen, 1991) ex-
tended the Theory of Reasoned Action to in-
clude perceived control over behavior. Their
idea was that intention alone could not predict
behavior if the behavior was one over which
the individual did not have complete control
(see Figure 6.1). Perceived behavioral control
is assumed to refl ect past problems encoun-
tered in behavioral performance. That is, if a
person has been unsuccessful in engaging in
a behavior in the past, such as losing weight,
and thus has demonstrated poor control over
the behavior, it is less likely that he will be
able to maintain the behavior no matter how
strong his intentions.
The Theory of Planned Behavior has been
widely used to predict behaviors as diverse as
the administration of opioids for pain relief by
nurses (Edwards et al., 2001), cervical cancer
screening (Sheeran & Orbell, 2000), and fi ght-
ing by adolescents (Jemmott, Jemmott, Hines,
& Fong, 2001). In a review of studies in which
behavior was predicted via intentions alone, as
in the Theory of Reasoned Action, and in com-
bination with perceived behavioral control, as
in the Theory of Planned Behavior, behaviors
that required more volitional control and with
which the individual had negative experiences
in the past, such as losing weight and getting
high grades, were better predicted by the com-
bination of intentions and perceived behavioral
control than by intentions alone (Ajzen, 1991).
A meta-analysis of 96 studies found that the
Theory of Planned Behavior predicted con-
dom use less accurately than did the Theory of
Reasoned Action (Albarracín et al., 2001). A
meta-analysis of 185 studies using the Theory
of Planned Behavior prior to the end of 1997
found the theory to account on average for
27% of the variance in health behavior (Ar-
mitage & Conner, 2001). In addition, fi ndings
of the previously mentioned meta-analysis by
Cooke and French (2008), which considered
the Theory of Planned Behavior in addition to
the Theory of Reasoned Action, were consis-
tent with analyses of the Theory of Planned
Behavior, except that perceived behavioral
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Theories of Health Behavior 131
control did not contribute signifi cantly to be-
havior.
THEORETICAL APPROACHES
BASED ON SOCIAL
NETWORKS
The impetus for approaches based on social
networks came from critiques that rational
choice approaches did not adequately take
into account environmental infl uences on be-
havior. The Health Belief Model is entirely in-
trapersonal, and even the Theory of Reasoned
Action and Theory of Planned Behavior fail
to acknowledge infl uences on health behav-
ior outside the individual’s immediate envi-
ronment. Missing is an appreciation for the
infl uences of social networks and structures
on health behavior. In a second category of
theoretical approaches—approaches based on
social networks—the emphasis shifts from in-
dividual mental events to social relationships,
recognizing the social nature of individuals
(Tilly, 1984). This shift in emphasis helps to
avoid another criticism of approaches based on
rational choice—namely, that they ignore the
infl uence of culture on health behavior.
If we conceptualize health decisions made
by individuals as the centermost of three con-
centric circles, approaches based on social net-
works add two adjacent bands or layers (see
Figure 6.2). The middle layer comprises social
networks and the outer layer the larger social
system, which includes governmental and eco-
nomic entities and forces. Two approaches that
consider the middle and outer layers of infl u-
ences on health behavior are Social Action The-
ory (Ewalt, 1991) and the Behavioral Model of
Health Services Use (Andersen, 1968, 1995).
Social Action Theory
Social Action Theory (Ewalt, 1991) represents
a marriage of psychological and public health
models and principles. The prevailing model
in public health is a three-way interaction
among host, agent, and environment. Whereas
approaches based on rational choice are con-
cerned exclusively with the host, Social Action
Theory encourages a social-contextual analysis
of personal change by suggesting pathways by
which social and other environmental factors
infl uence cognitive processes. The model con-
tains three dimensions: (1) self-regulation as
a desired action state, (2) a system of interre-
lated change mechanisms, and (3) larger envi-
ronmental systems that contextually determine
how personal change mechanisms operate (see
Box 6.1; Ewalt, 1991, p. 932). Individuals’ de-
sired states are infl uenced by what is necessary
to achieve goals, such as social infl uence, per-
sonal safety, material resources, and intimacy
(Ewalt, 1991, p. 936).
The health routines and habits that ensue
are entwined with those of others, and how
these relationships develop has the potential
to either promote or inhibit the goals of indi-
viduals or the prescriptions of health provid-
ers. Recommended change in diet for a child
with diabetes, for example, would require
a parent to shop for and prepare different
foods or serve two separate meals to the fam-
ily. Health decisions, therefore, are viewed
as being embedded in the social network.
Although the Theory of Reasoned Action
views social networks as infl uences on health
behavior, Social Action Theory considers
them to be mechanisms of action. Other peo-
ple are viewed as active players rather than as
outside infl uences on behavior and are thus
inside the lens of inquiry.
Social Action Theory holds that social ties
strongly infl uence the success of attempts to
alter behavioral routines, such as lowering
dietary fat, increasing physical activity, or en-
gaging in less risky sexual practices. Failure
to adhere to health-enhancing regimens has
been linked to confl icts that arise when fam-
ily members’ routines are disrupted (Oldridge,
1982). This fi nding provides guidance for the
choice, development, and targeting of inter-
ventions, often by specifying when and how
signifi cant others should be included in the
treatment process.
Because Social Action Theory is a fairly
new approach, its applications have been
fewer. McCree (1997) found high relationship
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132 Foundations of Social Work in Health Care
Box 6.1 Social Action Theory
Infl uences on Health Behavior
• Personal level (health habits, personal
projects, action states, motivation)
• Social level (social and biological
contexts, social interdependence, social
interaction processes, action linkages)
• Societal level (organizational structures
at the level of government; economic,
educational, and health-care systems;
laws; policies)
Societal
Behavioral Model of Health
Services Use
Social
Social Action Theory
Intrapersonal
Health Belief Model
Theory of Reasoned
Action
Theory of Planned
Behavior
Figure 6.2 Concentric Circles Representing the Three Layers of Infl uence on Health Behavior, With
Theories and Models Superimposed
The Behavioral Model of Health Services Use is on a stippled background. Social Action Theory is on a dotted
background. The Health Belief Model, Theory of Reasoned Action, and Theory of Planned Behavior are on a clear
background.
closeness, favorable attitudes toward condom
use, high self-esteem, and a secure attachment
style to best predict condom use among a sam-
ple of African American women. This fi nding
suggests interventions focused on increasing
self-effi cacy, improving sexual responsibility,
and creating more favorable attitudes toward
condom use among women and their sexual
partners. Social Action Theory also has been
applied successfully to the promotion of more
healthful behavior and well-being after heart
attacks (Ewalt & Fitzgerald, 1995).
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Theories of Health Behavior 133
BEHAVIORAL MODEL OF
HEALTH SERVICES USE
The Behavioral Model of Health Services Use
has gone through three phases since its devel-
opment in the 1960s (Andersen, 1968, 1995)
and fairly recently underwent another major
revision—the Behavioral Model for Vulnera-
ble Populations (Gelberg, Andersen, & Leake,
2000). The model differs somewhat from the
approaches outlined previously in its empha-
sis on health services use and the outcomes of
health behavior. Originating in medical sociol-
ogy, it considers a bigger picture of the infl u-
ences on health behavior, such as aspects of
the health-care system.
The original model (Andersen, 1968) di-
vided determinants of health service use
into three groups of variables: predisposing,
enabling, and need. Predisposing variables
were ones such as demographic factors and
health beliefs and attitudes that infl uenced an
individual’s use of health services. Enabling
factors included insurance coverage, social
support, and family income. Need variables
usually included perceived and objectively de-
termined health problems. The model’s second
phase in the 1970s (see, e.g., Aday & Ander-
sen, 1974) saw predisposing, enabling, and
need variables subsumed under the category
of population characteristics and the addition
of a category of variables, the health-care sys-
tem, which included policy and resources and
organization of the health-care system. Con-
sumer satisfaction was included as an outcome
of the use of health services. Phase 3 of the
model, in the 1980s and 1990s, brought the
addition of the external environment to an ex-
panded category of determinants of health be-
havior (see Figure 6.3). Use of health services
was no longer the end point of the model but
was subsumed, with personal health practice,
under a new category titled health behavior.
The outcomes of health behavior became the
model’s new end point, which was made up
of perceived and evaluated health status and
consumer satisfaction (Andersen, Davidson, &
Ganz, 1994).
Health Outcome
Population
Characteristics
Personal Health
Practices
Perceived Health
Status
Health Care
System
Use of Health
Services
Evaluated Health
Status
Primary Determinants
of Behavior Health Behavior
Figure 6.3 Components of Phase 3 of the Behavioral Model of Health Services Use.
Source: From “Revisiting the Behavioral Model and Access to Medical Care: Does It Matter?” by R. Andersen, 1995,
Journal of Health and Social Behavior, 36, 7. Copyright © 1995 by SAGE. Reprinted with permission.
JWBT514_ch06.indd 133JWBT514_ch06.indd 133 9/21/11 7:42 PM9/21/11 7:42 PM
134 Foundations of Social Work in Health Care
Empirical support for the Behavioral Model
of Health Services Use has been strong.
Andersen and Aday (1978) used the model to
understand levels of health services use of a
probability sample of 7,787 noninstitutional-
ized people in the United States. These authors
were able to explain 22% of the variance in
physician visits using (a) age, race, and educa-
tion of the head of household as predisposing
variables; (b) family income, physician visit
insurance, number of physicians per 1,000 in
population, and if a particular physician was
seen as enabling variables; and (c) perceived
health and number of illness symptoms in the
prior year as need variables. Level of illness
and age were related most strongly to the num-
ber of physician visits. The most signifi cant
policy-related variable was having a regular
source of care.
The Behavioral Model for Vulnerable Pop-
ulations (Gelberg et al., 2000) is an especially
valuable tool for the fi eld of social work be-
cause of its focus on the health services use
of disadvantaged people. Adding residential
history, mental health, substance abuse, vic-
timization history, and competing needs to
the original model increased the model’s effi -
cacy with vulnerable people in a longitudinal
study of homeless individuals (Gelberg et al.,
2000).
TRANSTHEORETICAL
MODEL: STAGES OF CHANGE
Although not itself a theory of health be-
havior, the Transtheoretical Model (TTM)
(DiClemente & Prochaska, 1982; Prochaska,
1984) adds a dimension to existing theories,
namely the readiness of individuals to make
proposed changes in health behavior. Six
stages of change are considered: precontem-
plation, contemplation, preparation, action,
maintenance, and termination (Prochaska,
Redding, & Evers, 2008).
The Transtheoretical Model incorporates
both intrapersonal and social components
of health behaviors and includes vari-
ous processes of change in its approach to
understanding and changing health behavior.
These processes include consciousness rais-
ing, the use of dramatic relief, and utiliza-
tion of helping relationships. Change is seen
as ongoing and incremental rather than static
or occurring at one fi xed point in time. This
concept adds to the social worker’s abil-
ity to intervene to change behavior by vir-
tue of respecting “where the client is” and
understanding the client within the context
of a larger social environment and an ongo-
ing process of change. The Transtheoretical
Model has been used with a vast array of
health behaviors, including smoking cessa-
tion (Dijkstra, Conijm, & DeVries, 2006),
stress management (Evers et al., 2006), and
condom use (Redding, Morokoff, Rossi, &
Meier, 2007).
DISCUSSION
In the early years of the 20th century, Richard
Cabot, the Massachusetts physician who
helped found the fi rst hospital social work de-
partment, urged social workers to build a solid
theoretical basis for their profession (Evison,
1995). The profession of social work may have
overlooked this advice, focusing on maintain-
ing a respected profi le in medicine instead.
Building its own theoretical base is an enor-
mous undertaking that arguably is too much
to ask of health social work. Employing well-
founded theoretical approaches from other
disciplines, then, represents a reasonable and
prudent compromise with which Cabot likely
would have been satisfi ed.
The theoretical approaches reviewed in
this chapter are all relatively sound empiri-
cally. They differ more in scope than in con-
tent. Approaches based on rational choice
focus on the center of a model consisting of
three concentric circles, with social networks
and relationships forming the middle, and so-
cietal level infl uences forming the outer lay-
ers (see Figure 6.2). Although they take into
consideration only a part of what we know
to infl uence health behavior, they have util-
ity for understanding that layer well. Whereas
JWBT514_ch06.indd 134JWBT514_ch06.indd 134 9/21/11 7:42 PM9/21/11 7:42 PM
Theories of Health Behavior 135
some have criticized these approaches for fo-
cusing on the intrapersonal, it can be argued
that, in certain situations, focusing on smaller
constellations of behavior can be useful clini-
cally. To gain an understanding of what goes
on within an individual in decision making, a
smaller framework, such as that provided by
the Health Belief Model, could, for example,
be very useful.
Since approaches based on rational choice
focus largely on the individual, it is important
that the social worker does not engage in the
fundamental attribution error (i.e., overlooking
environmental causes of the behavior of oth-
ers) or victim blaming but instead embeds this
microcosm of behavior within the larger arena
of environmental infl uences on behavior.
A major strength of Social Action Theory
is that it considers in detail infl uences on be-
havior from an individual’s social network (the
middle of our three concentric circles of in-
fl uence). This focus provides a useful tool for
pinpointing how others in the environment are
facilitating or impeding the efforts of patients
and providers to implement health behavior
change. The Behavioral Model of Health Ser-
vices Use extends our analytic lens to include
several systems levels (e.g., the health-care
system). The principal disadvantage of ap-
proaches based on social networks is that their
inclusiveness renders them more cumbersome
to implement in practice and research.
Behavioral theory is a powerful tool that
allows us to apply existing knowledge of in-
ternal and external determinants of health be-
havior to the clinical situations with which we
are faced. The Health Belief Model offers in-
sight into individual’s health decision making.
The Theory of Reasoned Action extends that
insight to include anticipated opinions of val-
ued others. The Theory of Planned Behavior
increases the power of the Theory of Reasoned
Action when the behavior in question requires
a great deal of volition, such as in weight loss
or smoking cessation. Social Action Theory is
particularly useful when the behavior (rather
than opinions) of others is a factor in an in-
dividual’s behavior change. The Behavioral
Model of Health Services Use, by virtue of its
taking into consideration infl uences at various
systems levels, provides assistance in health
planning. Taken together, this set of theories
and models is a resource that can heighten
the ability of health social workers to suc-
ceed in an increasingly demanding health-care
environment.
SUGGESTED LEARNING
EXERCISE
The purpose of this assignment is to apply one
of the theories of health behavior discussed
in this chapter to a specifi c health issue or
problem. Students should choose one of the
three listed vignettes and use it as a tool for
analyzing one theory discussed in the chapter.
Students should explain the health behavior
from the vignette in detail as it relates to the
chosen theory and justify why the theory was
chosen over others. What features or elements
of the theory add to its ability to explain the
health behavior described in the specifi c vi-
gnette and would help a health social worker
intervene optimally?
In this assignment, students should fi rst in-
clude a brief outline of the theory and of the
issue or problem as it affects the chosen case.
Students should write succinctly, with enough
detail to assess their understanding of the the-
ory and the issue or problem. Next, students
should explain in detail how well the theory
fi ts the case chosen. Are all of the salient ele-
ments of the case covered by the theory? Does
the theory allow for a better understanding of
the client’s behavior? If not, why not? This
should be the crux of the assignment. Last,
students should address the implications for
social work practice of using the theory to un-
derstand behavior surrounding the health issue
or problem.
Learning Exercise 6.1
A 42-year-old White male who moved to Se-
attle from Texas one year ago is a patient in
the cardiac care unit of your hospital. He was
admitted after a second myocardial infarction
JWBT514_ch06.indd 135JWBT514_ch06.indd 135 9/21/11 7:42 PM9/21/11 7:42 PM
136 Foundations of Social Work in Health Care
(MI), which occurred within a month of a pre-
vious MI. Notes from his prior admission in-
dicate that the patient works as an investigator
for the state liquor board. He is married for
the second time and lives with his unemployed
wife and 15-year-old stepson. They reside with
a distant relative and were in the process of
moving into a rented house when the second
MI occurred. He has one biological child, who
lives with his fi rst wife in Texas. His father
died suddenly of an MI at 55 years of age,
without making it to the hospital. You note that
the patient is a stocky man, moderately over-
weight, and a heavy smoker.
During his fi rst admission to the hospital,
nurses’ notes indicate that the patient pre-
sented in an angry manner to the health-care
team, threatening to sign out of the hospital
and mumbling and interrupting the nurse dur-
ing cardiac class. He was fairly impulsive,
defensive, and, according to the chart notes,
very physically active before the MI. When
threatening to sign out of the hospital during
the hospitalization, he said he was “too young
to have a heart attack . . . . I can’t work, I can’t
smoke, I can’t eat what I want. . . . I don’t care
if I die. . . . This hospitalization has placed my
family in fi nancial danger. We’re supposed to
move. . . . I need to help them.” At the time of
his second admission to the hospital, you note
that the patient seems to have tested the limits
at home. He now says that he needs to return
to Texas, and he has not followed up with the
interdisciplinary team’s recommendation from
his fi rst hospitalization.
Learning Exercise 6.2
A middle-age, African American woman with
a history of breast cancer in her family fi nds
a suspicious lump in her breast. Upon inter-
view, she relates to you that her mother died
from breast cancer at a young age and that
she is familiar with breast cancer, although
she says that her family never talked much
about the illness when she was growing up.
You gather from the interview that she works
two jobs, which require her to work many
long, late hours. As a single mother with a
busy and changing schedule, she has diffi -
culty fi nding time to see a doctor and says
that she is “just so frustrated by it all.” You
ask her about the reasons for her frustration,
and she says that she recently had a lapse in
health insurance because she has been unable
to afford the monthly premium. The bills and
rent payment have been backing up, and she
is having diffi culty providing for her family’s
basic needs. This additional stressor is more
than she can deal with at this time.
Understanding her lapse in health insurance
and restricted fi nancial situation, you recom-
mend the free health clinic that offers cancer
screening to women with low incomes. She
says that although she is familiar with this
clinic, it is diffi cult to reach from her apart-
ment. The woman says that she must take two
buses and wait for her bus transfer in an ex-
tremely unsafe neighborhood in order to get
there. In addition, she tells you that she has
gone to this particular clinic a couple of times
in the past when she lacked health insurance
and was disheartened by the lack of consis-
tency in her care. Even when she was able to
make the trip across the city to see a doctor,
she was never able to see the same physician
twice, and explaining her situation multiple
times was wearisome. You sense her frustra-
tion at the societal barriers that are restricting
her ability to follow up with her health con-
cerns. She decides to ignore the lump and hope
that it will just go away so that she can con-
tinue working to pay the bills and care for her
young daughter.
Learning Exercise 6.3
An elderly widow struggles with hyperten-
sion, diabetes, and arthritis, and lives alone
in a second-fl oor apartment. She frequently
fi nds herself in need of assistance around the
house as her chronic illnesses become pro-
gressively worse, and she is having diffi culty
knowing how to manage these tasks alone. It
is now diffi cult to climb the stairs up to the
apartment, and she often feels nervous about
falling while getting into the bathtub; how-
ever, she tells you that she is unsure of what to
JWBT514_ch06.indd 136JWBT514_ch06.indd 136 9/21/11 7:42 PM9/21/11 7:42 PM
Theories of Health Behavior 137
do about this situation. She is very indecisive
about spending money on home health care,
and she does not know where to turn to access
these resources. The events coordinator at the
local senior center informs you that the wom-
an’s husband died about a year ago, and she
seems to be having trouble making decisions
on her own. The woman did everything with
her spouse and says that she relied heavily on
him to help her know what to do. The woman’s
husband paid all of the bills, maintained the fi -
nances, and drove her to her routine doctor ap-
pointments, but now that he is gone, she rarely
keeps these appointments and has trouble fi ll-
ing her prescriptions.
The woman tells you that her two adult chil-
dren live out of town, and although she speaks
to them on the phone almost every week, they
seem to be very busy. The woman expresses
her desire to talk with them more frequently,
but they are full-time professionals with young
families of their own and rarely return her mul-
tiple calls. From her description, it seems that
she calls her children multiple times a day and
that they have begun to avoid most of these
calls assuming that she is being overly needy.
The woman tells you during a home visit that
since the death of her husband, she has found a
lot of solace in attending church. She speaks to
the pastor regularly and appears to look to him
for guidance on many issues. She states that he
has a lot of wisdom and that she hopes to talk
to him more about some of her concerns.
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PART II
Health Social Work Practice:
A Spectrum of Critical
Considerations
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143
7
Community and Health
CHRISTOPHER MASI
Beginning at gestation and continuing through
adulthood, day-to-day social and environmen-
tal experiences have important positive and
negative health effects. The pathways of infl u-
ence are several and include the effects of air,
water, and food quality as well as exposure to
physical, social, and psychological stressors.
Access to and quality of medical care also
affect the onset and course of disease. It has
been estimated that, in fi rst-world countries,
shortfalls in medical care account for 10% of
early mortality, adverse social circumstances
account for 15%, and environmental expo-
sure accounts for 5%. Behavioral patterns
and genetic predisposition may account for
as much as 40% and 30% of early mortality,
respectively (McGinnis, Williams-Russo, &
Knickman, 2002). Not surprisingly, each of
these factors, including genetic predisposition,
can be strongly infl uenced by the resources and
characteristics of a community. As counselors,
coordinators, and advocates, social workers
have unique opportunities to maximize the
positive and minimize the negative effects of
communities on health.
This chapter reviews the ways in which
communities affect health and addresses sev-
eral questions, including the extent to which
neighborhoods differ with respect to ethnic
composition and resources that are important
to health. The chapter discusses the distinction
between contextual and compositional neigh-
borhood features and addresses the relationship
between community characteristics and each
of the major domains of health determinants.
In some cases, the connection between the so-
cial/physical environment and health is obvi-
ous. In other cases, the pathways of infl uence
are less straightforward and are explained in
greater detail. This chapter uses a life-course
model to demonstrate the potential effects of
the social and physical environment on each
stage of the life cycle. Finally, implications of
the neighborhood–health connection for social
work practice are discussed.
Chapter Objectives
• Document key differences in community
characteristics.
• Illustrate ethnicity- and income-related
health disparities.
• Defi ne social determinants of health.
• Review the distinction between contextual
and compositional community features.
• Demonstrate pathways through which com-
munity characteristics infl uence health.
• Describe the effects of homelessness on
health.
• Identify community effects on health
throughout the life course.
• Describe community-based participatory
research.
• Outline the implications of the relationship
between neighborhood quality and health for
social work practice in health-care settings.
COMPOSITION OF
U.S. NEIGHBORHOODS
Neighborhood characteristics in the United
States, whether urban or rural, vary widely in
terms of ethnic makeup and income. This is
due to many factors, including resources, per-
sonal preferences, and discrimination. With
some exceptions, individuals tend to live near
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144 Health Social Work Practice: A Spectrum of Critical Considerations
those in similar economic circumstances, while
individuals of a particular ethnicity or cultural
background often prefer to live near others of
similar ethnicity or culture. Residency pat-
terns also are infl uenced by discrimination
in realty and lending practices. In the United
States, these practices have limited the hous-
ing opportunities of many groups and resulted
in neighborhood differences that do not refl ect
the wishes or best interests of all populations.
Although it is not always apparent, racial
segregation still is practiced in the United
States. In 2000, the typical White American
person lived in a neighborhood that was
80.2% White, 6.7% African American, 7.0%
Hispanic, and 3.9% Asian. In contrast, the
typical African American person lived in a
neighborhood that was 51.4% African Ameri-
can, 33% White, 11.4% Hispanic, and 3.3%
Asian. The average Hispanic person lived in
a neighborhood that was 45.5% Hispanic,
36.5% White, 10.8% African American, and
5.9% Asian. The typical Asian person lived in
a neighborhood that was 17.9% Asian, 54%
White, 9.2% African American, and 17.4%
Hispanic (Mumford Center, 2001).
The fi ve U.S. cities with the highest de-
gree of Black–White segregation are Detroit,
Milwaukee, New York, Chicago, and Newark
(Mumford Center, 2001). Each city has an
Index of Dissimilarity of 80 or greater, meaning
that 80% of either group would have to move
to different census tracts for the two groups
to become equally distributed throughout each
city. Although segregation has declined over
the past 20 years, the slow rate of change sug-
gests it will take another 40 years before the
level of Black–White segregation in the United
States declines to the level of Hispanic–White
segregation (Mumford Center, 2001).
Economic and school segregation are also
prevalent in the United States. According to
the 2000 U.S. census, 3.5 million people live
in neighborhoods with poverty concentrations
of 40% or greater (Orr et al., 2003). In pub-
lic schools attended by the average African
American student, 38.3% of the students are
poor, whereas in schools attended by the aver-
age Hispanic student, 44% of the students are
poor. In contrast, in public schools attended
by the average White American student, only
19.6% of the students are poor (Orfi eld, 2001).
Unfortunately, there is evidence that public
school segregation is increasing in the United
States. In 1980, 62.9% of African American
students attended schools with minority en-
rollment over 50%. In 1998, this fi gure had
risen to 70.2%, while more than one-third of
African American students attended schools
with minority enrollment of 90% to 100%.
School segregation also has increased for
Hispanic students. Between 1968 and 1998,
the proportion of Hispanic students who at-
tended schools with minority enrollments of
90% to 100% increased from 23.1% to 36.6%
(Orfi eld, 2001).
Employment discrimination is another
source of neighborhood disparity. In the United
States, communities with high proportions of
minority residents often have higher unem-
ployment rates and lower average incomes.
Among Chicago’s 77 community areas, un-
employment rates in the most economically
depressed areas varied from 25.8% to 33.5%
in 2000. In these communities, the propor-
tion of African American residents varied
from 85.5% to 97.8%, and median household
income was $17,209. The fi ve Chicago com-
munity areas with the lowest unemployment
rates (2.8%–3.4%) had populations that were
79.4% to 93.3% White, and the median house-
hold income was $56,455 (Kouvelis, Harper,
& Thomas, 2003).
Although diversity is part of the fabric of
the United States, diversity between neighbor-
hoods is often greater than diversity within
them. Segregation and unequal distribution
of resources, in the form of housing quality,
green space for exercise, health-care access,
and food quality all have important health
ramifi cations.
Does Health Differ by Income
and Race or Ethnicity?
Income-related health disparities have been
noted for several centuries. Reference to the
relationship between health and wealth can
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Community and Health 145
be found in ancient Chinese and Greek texts
(Krieger, 2001; Porter, 1997). In the early 20th
century, Chapin (1924) found that the annual
death rate among nontaxpayers was over twice
that of taxpayers in Providence, RI. More re-
cently, health outcome differences by income
have been documented in the United States, the
United Kingdom, and throughout the world.
According to a 2007 U.S. survey of 23,393
adults, poor health continues to affect lower-
income individuals to a greater extent than
those with higher incomes (Pleis & Lucas,
2009). Among those with household incomes
below the federal poverty line, 29.5% reported
having hypertension and 4.2% reported having
had a stroke. In contrast, only 21.9% and 1.9%
of those with incomes greater than or equal to
200% of the poverty threshold reported having
hypertension or stroke, respectively. The rates
of diabetes and kidney disease were 12.2%
and 2.6% among the poor and 6.6% and 1.1%
among the not poor, respectively. Obesity
among those with incomes of less than $35,000
was also more prevalent (28.9%) compared
with those who had incomes of $100,000 or
more (19.8%) (Pleis & Lucas, 2009).
Differences in health behaviors and ac-
cess to care may contribute to differences in
income-related disease prevalence. In 2007,
26.8% of those with annual incomes less than
$35,000 smoked while 12.4% of those with
annual incomes of $100,000 or more did so
(Pleis & Lucas, 2009). Of those with incomes
of $100,000 or more, 92.2% had a usual place
of care while 77.4% of those with incomes less
than $35,000 reported a usual place of care
(Pleis & Lucas, 2009).
Both disease prevalence and access to care
vary by ethnicity. According to the National
Health Interview Survey (Pleis & Lucas,
2009), the prevalence of obesity (defi ned as a
body mass index greater than or equal to 30)
was 35.1% among African Americans, 27.5%
among Hispanics, and 25.4% among White
Americans. The prevalences of hypertension
and stroke were 22.2% and 2.2% among White
Americans, 31.7% and 3.7% among African
Americans, and 20.6% and 2.5% among His-
panic Americans, respectively, while the rates
of diabetes and kidney disease were 6.8% and
1.4% among White Americans, 12.3% and
2.5% among African Americans, and 11.1%
and 1.8% among Hispanic Americans, re-
spectively. Among White respondents, 84.5%
reported a usual place of care. This percent-
age was slightly higher for African Americans
(85.5%) and lower for Hispanic Americans
(74.4%) (Pleis & Lucas, 2009).
Given the strong relationship between
ethnicity and illness, it is not surprising that
ethnicity is related to both life expectancy
and mortality. In 2006, the life expectancy
at birth was 73.2 years for African Ameri-
can infants and 78.2 years for white infants.
Contributing to this difference in life expec-
tancy are differences in infant death and death
due to chronic disease. For deaths of infants
younger than 1 year, the rate per 100,000 was
lower among White infants (576.0) compared
to African American (1,303.1) and Hispanic
infants (590.6) in 2006. For cause-specifi c
mortality, the age-adjusted Black:White ratio
was 1.3 for diseases of the heart, 1.2 for ma-
lignant neoplasms, 1.5 for cerebrovascular
disease, 2.1 for diabetes mellitus, and 2.7 for
hypertensive disease. The overall age-adjusted
death rate (per 100,000) was higher among
African Americans (982.0) compared to White
Americans (764.4) and Hispanic Americans
(564.0) in 2006 (Heron et al., 2009).
When considering the ways in which in-
come and race are related to illness and mor-
tality, some links are more obvious than others.
Health behaviors, including diet and access to
care, mediate this relationship to some extent.
Less well understood is the mechanism by
which psychological distress also may medi-
ate income- and ethnicity-related differences
in health outcomes. In the 2007 National
Health Interview Survey (Pleis & Lucas,
2009), those with household incomes less than
$35,000 reported higher rates of psychological
distress compared with those with incomes of
$100,000 or greater in these areas: feeling sad
all or most of the time (5.7% versus 0.7%),
feeling hopeless all or most of the time (4.3%
versus 0.5%), feeling worthless all or most
of the time (3.8% versus 0.4%), or reporting
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146 Health Social Work Practice: A Spectrum of Critical Considerations
everything is an effort all or most of the time
(9.0% versus 1.7%). Ethnic differences also
existed in some of these domains. Feeling
sad all or most of the time was higher among
African American people (3.7%) compared to
White people (2.6%). Reporting everything is
an effort all or most of the time was also more
common among African American respon-
dents (6.8%) compared to White respondents
(4.4%) (Pleis & Lucas, 2009).
There is some evidence that education
may modify the relationship between income/
ethnicity and health. Specifi cally, those with
higher education, regardless of income or
ethnicity, tend to have lower mortality rates
compared with those who have less educa-
tion. In 2006, the age-adjusted mortality rate
(per 100,000) among those with fewer than 12
years of education was 528.8. Among those
with 13 or more years of education, the rate
was 200.0 (Heron et al., 2009). The effect of
education on health is not completely under-
stood, but it appears to operate through such
important mediators as health behaviors, ac-
cess to care, place of residence, and ability to
cope with stressful situations.
Low income and low educational attain-
ment are also risk factors for homelessness,
which is associated with poor health, includ-
ing higher rates of human immunodefi ciency
virus (HIV), tuberculosis, hypertension, dia-
betes, substance abuse, and trauma. Homeless
individuals also are more likely to experi-
ence complications from chronic diseases
(Sadowski, Kee, VanderWeele, & Buchanan,
2009). These phenomena are due to several
factors, including increased exposure to ad-
verse environmental conditions, reduced ac-
cess to regular medical care, prioritizing food
and shelter above medical concerns, and ex-
posure to violence (Sadowski et al., 2009).
Not surprisingly, minority populations have
higher rates of homelessness compared to
White Americans, thereby contributing to ra-
cial disparities in health. A recent survey of
homeless shelters in 16 cities found that 47%
of residents were African American, a pro-
portion higher than in the general population
(United States Conference of Mayors, 2007).
Research clearly demonstrates that health dif-
fers by income, race, and ethnicity.
How Are Neighborhood
Effects Identifi ed?
Given the myriad factors that affect health, it
is not surprising that particular neighborhood
features, including health-care resources, the
presence of green space for exercise, availabil-
ity of healthy foods, quality of housing, norms
and values, and crime all have been associated
with health outcomes. But how important are
these factors when compared to individual
characteristics, such as genetic predisposi-
tion and health behaviors? That is, what are
the relative health effects of contextual (i.e.,
neighborhood-level) characteristics compared
with compositional (i.e., individual-level)
characteristics? Contextual features include
neighborhood norms and values, number of
parks, quality of schools, and amount of crime
in a given neighborhood. Compositional fea-
tures include individual ethnicity, income,
education, and health behaviors. One way to
distinguish contextual from compositional ef-
fects is by performing multilevel analysis, a
statistical approach that categorizes data by
level (e.g., individual, classroom, school) and
assesses the relative effect of each level on the
outcome. If two communities differ in terms
of an important health outcome, such as infant
mortality, a key question addressed by multi-
level analysis would be: Is the difference in in-
fant mortality due to contextual factors (such
as community health care resources or qual-
ity of community drinking water), or does the
difference exist because mothers in these two
communities are different in important ways
(i.e., income, smoking behavior)? When con-
textual effects are found, it suggests that there
is something about a community or neighbor-
hood (e.g., contaminated drinking water) that
exerts an effect on the outcome (e.g., cancer
incidence) over and above the effects related
to individual characteristics.
In the absence of obvious culprits, such
as contaminated drinking water, multilevel
analysis cannot always separate individual
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Community and Health 147
from community-level effects. For example,
multilevel studies have demonstrated signifi -
cant contextual effects on a variety of health
outcomes, but the strength of these effects
often is diminished when multiple individual
characteristics are considered (Pickett & Pearl,
2001). This fact suggests that either the contex-
tual effect is weak or the relationship between
the contextual feature and the health outcome
is mediated by one or more individual charac-
teristics, such as diet or tobacco use. Although
not negating neighborhood effects, their me-
diation by health behaviors makes contextual
effects more diffi cult to identify.
Another way to distinguish contextual from
compositional effects is to perform an experi-
ment in which individuals living in a commu-
nity are randomly assigned to either remain in
the community or move to a new community
with different characteristics. If both groups
are similar with respect to individual char-
acteristics at the beginning of the study, then
postintervention interviews and analyses per-
mit an assessment of the contextual effects on
health. Such studies are diffi cult to perform be-
cause of fi nancial and ethical constraints, but
experiments of this type are occasionally un-
dertaken. One example is the Moving to Oppor-
tunity (MTO) for Fair Housing Demonstration
Program. Conducted by the U.S. Department
of Housing and Urban Development, MTO is
a randomized social experiment designed to
assess the effects of moving out of poor neigh-
borhoods. Families with very low incomes
with children younger than 18 years living in
public housing or private assisted housing in
poor neighborhoods of fi ve cities—Baltimore,
Boston, Chicago, Los Angeles, and New York
City—were eligible. Between 1994 and 1998,
eligible families were randomly assigned to
one of three groups: the experimental group,
the Section 8 group, or the control group. Indi-
viduals in the experimental group were offered
housing vouchers that could be used only in
low-poverty areas. This group also received
assistance fi nding and leasing units. In addi-
tion, to retain their vouchers, families were re-
quired to stay in their new neighborhoods for
at least one year. Those in the Section 8 group
were offered housing vouchers with no restric-
tions on where the vouchers could be used and
no assistance fi nding or leasing units. Con-
trol group members were not offered hous-
ing vouchers; they continued to live in public
housing or receive project-based housing as-
sistance (Orr et al., 2003).
In 2002, nearly 8,900 participating adults
and children were contacted to assess follow-
up status in several domains, including physical
and mental health, child educational achieve-
ment, youth delinquency and risky behavior,
and adult and youth employment and earnings.
On average, individuals in the experimental
and Section 8 groups reported signifi cant in-
creases in their perceptions of safety and sub-
stantial decreases in their risk of observing or
being a victim of a crime. Compared with the
control group, the intervention group also re-
ported less diffi culty getting police to respond
to their calls and large reductions in the pres-
ence of abandoned buildings, public alcohol
consumption, litter, trash, and graffi ti.
Adult health differences noted on follow-
up included signifi cant reductions in the prev-
alence of obesity, psychological distress, and
depression among the experimental but not
the Section 8 group compared with the control
group. Calmness and peacefulness were re-
portedly signifi cantly increased in the experi-
mental group. Among girls age 12 to 19 years,
researchers noted reductions in psychological
distress and generalized anxiety disorder in the
experimental group compared with the control
group. Among girls age 15 to 19 years, those
in the experimental group were signifi cantly
less likely to use marijuana or smoke ciga-
rettes compared with the control group (Orr
et al., 2003).
MTO is important in that it assessed the
relationship among neighborhood characteris-
tics, health, and health behaviors. Because of
randomization, those in the intervention group
were not different from those in the control
group. Therefore, differences noted in health
and health behaviors were due to contextual
factors, not individual differences. These re-
sults provide evidence that neighborhood
features, including neighborhood wealth, can
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148 Health Social Work Practice: A Spectrum of Critical Considerations
affect health independent of individual char-
acteristics. In this case, greater availability of
police and decreased exposure to crime and
delinquency appear to have had a positive im-
pact on psychological well-being.
MECHANISMS BY WHICH
COMMUNITIES INFLUENCE
HEALTH
An individual’s social circumstances and
physical environment represent two ways
communities can infl uence health. Social cir-
cumstances include neighborhood educational
level, employment, income disparities, pov-
erty, crime, and social cohesion. A community
in which social relationships are easy to make
and maintain is likely to be a healthier environ-
ment than a community in which residents are
afraid to venture from their homes because of
concerns about crime. A study from the United
Kingdom found that individuals who recently
had a heart attack and who had a confi dant or
intimate partner were about half as likely to
die or have a further cardiac event compared
with similar patients without a confi dant or
partner (Dickens et al., 2004).
Number and type of social relationships
also depend on neighborhood norms and ex-
pectations. Laumann, Ellingson, Mahay, Paik,
and Youm (2004) recently documented this in
four Chicago communities: one predominantly
African American community on the South
Side, one Mexican American community on
the West Side, one mixed but predominantly
Puerto Rican community on the Northwest
Side, and one primarily White community on
the North Side with large heterosexual and
homosexual populations. Each neighborhood
had distinct opportunities, or “markets,” for
social relationships, some more supportive
of relational or committed encounters and
others more amenable to transactional (i.e.,
relatively uncommitted and often short term)
relationships. In this study, market type was
infl uenced by the neighborhood’s economy as
well as the ethnicity and sexual orientation of
its residents. For example, family, friends, and
church played an important role in forming
committed relationships in Hispanic commu-
nities. In contrast, the transactional market in
the North Side community was important for
gay men but not for lesbians, who preferred
the relational market.
Physical environment refers to sanitation;
quality of housing, food, and water; and ex-
posure to environmental toxins and pathogens.
Public health and safety programs often moni-
tor these environmental characteristics. Statis-
tics regarding life expectancy and causes of
death indicate that environmental problems
pose less of a risk in developed countries com-
pared with third-world countries. For example,
the life expectancy of an infant born in 2006 in
the United States is 80.2 years for females and
75.1 years for males, and the leading causes of
death are heart disease (26%), cancer (23.1%),
and stroke (5.7%) (Heron et al., 2009). The
remaining causes, including chronic lung dis-
ease, accidents, diabetes, and infections, each
account for fewer than 10% of deaths, and
only a very small percentage of deaths are di-
rectly attributable to environmental conditions.
In contrast, the most common causes of
childhood mortality in developing countries are
related to communicable diseases. These in-
clude pneumonia, diarrheal diseases, malaria,
measles, and HIV/AIDS (acquired immune de-
fi ciency disease) (World Health Organization
[WHO], 2008). In 2009, the estimated life ex-
pectancy at birth was 62 years for females and
59 years for males. That year it was estimated
that 80% of Haitians lived in poverty and the
per capita gross domestic product (GDP) was
$1,300. By comparison, the estimated poverty
rate in the United States that year was 12%
and the per capita GDP was $46,400. In 2000,
the freshwater withdrawal rate per capita was
116 cubic meters per year in Haiti compared
with 1,600 cubic meters per year in the United
States (Central Intelligence Agency, 2010).
Lack of potable water and inadequate sewage
disposal are risk factors for infections such as
hepatitis A, typhoid, and cholera; poor housing
conditions and overcrowding are risk factors
for airborne diseases, including infl uenza and
tuberculosis. In Haiti, there were 299 cases of
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Community and Health 149
tuberculosis per 100,000 in 2006 compared
with 4 cases per 100,000 in the United States
that year (WHO, 2008).
It is important to remember that the rela-
tionship between national wealth and public
health infrastructure is not always positive
or linear. Living conditions and environmen-
tal quality also refl ect national priorities and
the relative amount of resources dedicated to
public health programs. A comparison of the
United States and Cuba is illustrative. Despite
having a per capita GDP that is less than one-
quarter that of the United States ($9,700 ver-
sus $46,400 in 2009), Cuban health statistics
compare favorably. In Cuba, female life ex-
pectancy at birth is 79.85 years, and male life
expectancy at birth is 75.19 years. At nine
cases of tuberculosis per 100,000 per year,
the Cuban tuberculosis rate is much closer to
that of the United States than of Haiti. In fact,
low-income communities in the United States
with high numbers of immigrants have tuber-
culosis rates that exceed the Cuban rate. The
tuberculosis rate among foreign-born U.S. res-
idents was 18.6 per 100,000 in 2009 (Centers
for Disease Control and Prevention, 2010).
Despite fewer resources per capita, Cuba has
developed a public health system that con-
trols many of the environmentally associated
diseases that plague third-world countries and
continue to affl ict low-income communities in
the United States.
Although immunization against disease and
separating drinking water from waste water
continue to be important strategies in fi rst-
world countries, these countries have increas-
ingly embraced the medical model of health
care, which focuses on treatment of disease
after it is established. Although this model
has led to tremendous advances in surgery
and medicine, the recent epidemics of obe-
sity, hypertension, cardiovascular disease, and
osteoarthritis in wealthy nations suggest that
the pendulum may have swung too far away
from disease prevention and toward disease
intervention (Masi & Gehlert, 2009). Not only
does the medical model deemphasize disease
prevention, but treatment of disease after it is
established is extremely expensive. Cuba often
is cited as an example of the health success
that can be attained through public health prac-
tices. In 2006, the United States spent over $2
trillion on health care, or roughly $6,714 per
person. In comparison, Cuba spent approxi-
mately $363 per person on health care and had
health outcomes that were similar, if not better,
than those in the United States (WHO, 2010).
The public health approach is effective not
only because it controls infectious diseases but
also because it addresses many of the social
determinants of health. Shortfalls in medical
care account for approximately 10% of early
mortality, and adverse social circumstances
and environmental exposures account for 15%
and 5% of premature mortality, respectively, in
fi rst-world countries (McGinnis et al., 2002).
In third-world countries, access to and qual-
ity of medical care as well as social circum-
stances and environmental exposures likely
play much greater roles in early mortality.
WHO refers to these factors as social deter-
minants of health and defi nes them as access
to high-quality health care, education, and
housing as well as opportunities for social and
economic fl ourishing (Commission on the So-
cial Determinants of Health [CSDH], 2008).
According to the CSDH, reduced access to
these factors is due to a “toxic combination
of poor social policies and programmes, un-
fair economic arrangements, and bad politics”
(p. 1). Social determinants of health thus ex-
plain a major part of health inequities between
and within countries. In its 2008 report, the
CSDH delineates the political steps that are
needed to address the social determinants of
health and improve health in developing na-
tions. Although this report does not mention
neighborhood factors specifi cally, it is easy to
imagine that new policies regarding health-
care access and quality, education, and hous-
ing ultimately would be implemented and have
effects at the community level.
Despite the nation’s fi rst-world status and
emphasis on the medical model, some experts
in the United States are beginning to advocate
for changes in education, housing, and em-
ployment policies as ways to improve national
health (Schoeni, House, Kaplan, & Pollack,
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150 Health Social Work Practice: A Spectrum of Critical Considerations
2008). To an increasing number of policy mak-
ers, it is apparent that whether a person exer-
cises, eats a balanced diet, smokes, or engages
in high-risk sexual practices is often a func-
tion of a neighborhood’s social, economic, and
physical environment. For example, studies
have shown that adults are more likely to exer-
cise in their neighborhood if they perceive it to
be safe (Wilbur, Chandler, Dancy, & Lee, 2003)
or if they have access to parks, trails, and other
areas conducive to physical activity (Huston,
Evenson, Bors, & Gizlice, 2003). Other stud-
ies have found that healthy foods, such as fruits
and vegetables, are less available (Mooney,
1990; Morland, Wing, & Diez Roux, 2002)
and more expensive (Sooman, MacIntyre, &
Anderson, 1993) in poor neighborhoods com-
pared with wealthy neighborhoods. Obesity
has been linked to increased portion sizes and
consumption of high-fat foods, such as those
served at fast-food restaurants. One study of
restaurant density found that people living in
the poorest socioeconomic status category had
2.5 times the exposure to fast-food restaurants
compared with those living in the wealthiest
category (Reidpath, Burns, Garrard, Mahoney,
& Townsend, 2001). In the United States,
low-income individuals are exposed to more
outdoor tobacco advertising than individuals
with higher income (Hackbarth, Silvestri, &
Cosper, 1995; Stoddard, Johnson, Sussman,
Dent, & Boley-Cruz, 1998).
In addition, patterns of social relationships
and sexual practices are tied to the economy
and culture of the community. Laumann and
colleagues (2004) found that residents of
higher-income communities tend to meet their
partners at school or work and form longer-
term relationships more frequently than
residents of lower-income communities. In
contrast, residents of low-income communi-
ties are more likely to be in polygamous or
short-term, transactional relationships. The
links among poverty, prostitution, and sexu-
ally transmitted disease are well established
and add to the disease burden of low-income
communities (Edlund & Korn, 2002; Girard,
2000; Satz, 2003).
Access to medical care often refl ects the re-
sources and provider practices within particu-
lar communities. Newer tests and procedures
may be available in urban areas long before
they become standard practice in rural com-
munities. For example, a recent study of U.S.
patients with cardiac arrest found that sur-
vival differed markedly by location of arrest.
The survival rate was 9% in rural areas, 14%
in suburban areas, and 23% in urban sites.
These differences were attributed to several
factors related to the communities, including
medical response time, transport time, resus-
citative skill, and type of medical intervention
(Vukmir, 2004). In a comparison of diabetes
care in urban versus rural clinics in Alabama,
Andrus, Kelley, Murphey, and Herndon (2004)
found that rural patients were less likely to be
at their goals for glycosylated hemoglobin (a
measure of blood glucose control), cholesterol
level, and blood pressure. Compared with their
counterparts at urban clinics, these patients
also were less likely to receive screening and
preventive services, such as eye examinations,
urinary protein screening, aspirin therapy,
and vaccinations. In Mexico, the mortality
rate from cervical cancer is 3 times higher in
rural areas than it is in urban areas. In the rural
state of Chiapas, the cervical cancer mortality
relative risk was 10.99 times that of the risk
in Mexico City. This difference has been at-
tributed to lack of formal education and insuf-
fi cient access to medical care (Palacio-Mejia,
Rangel-Gomez, Hernandez-Avila, & Lazcano-
Ponce, 2003).
Type and quality of care also differ mark-
edly across urban settings in the United States.
Studies of so-called small-area variations
in care were pioneered by Dr. Jack Wenn-
berg at Dartmouth in the 1980s. Since that
time, the Dartmouth group has documented
regional variations in Medicare spending,
use of cancer screening tests, physician
adherence to national health-care guide-
lines, and frequency of surgical procedures
(McAndrew-Cooper, Wennberg, & Center for
the Evaluative Clinical Sciences Staff,1999).
For example, regional rates of mammography
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Community and Health 151
screening in the United States vary from
12.5% to over 50%, with women in the north-
eastern United States, Florida, and Michigan
being more likely to receive mammography
than women elsewhere. Annual screening
for colorectal cancer also varies by geogra-
phy, from 2.4% among Medicare enrollees in
Terre Haute, IN, to 22.2% in Takoma Park,
MD. In general, compliance with national
colorectal cancer screening is higher in the
East and South compared with the Midwest
and West in the United States. Medicare en-
rollees in some areas of the country are also
more likely to undergo coronary angiography
and carotid endarterectomy than in others.
A signifi cant proportion of these procedures
are performed unnecessarily. The Dartmouth
group has shown that use of medical care re-
sources often refl ects capacity (i.e., number
of physicians, number of hospital beds) more
than need for care. The causes of these small-
area variations are numerous and likely re-
fl ect the effects of prominent physicians who
infl uence local practice through lectures and
consultation (Wennberg et al., 1997).
There is growing evidence that societal fac-
tors also can infl uence the onset and course
of several diseases, including type 2 diabetes
mellitus, cancer, and cardiovascular disease.
For example, obesity leads to insulin resis-
tance, which is a signifi cant trigger for type 2
diabetes mellitus. As the prevalence of obesity
has increased in the United States, so too has
the prevalence of diabetes. During the period
from 1988 to 1994, 24.5% of U.S. adults were
obese. By the period from 1999 to 2004, this
proportion had increased to 32.1% (Lopez-
Jimenez et al., 2009). Between 1988 to 2004,
the percentage of adults in a national survey
who reported being diagnosed with diabetes
increased from 8.2% to 9.6% (Lopez-Jimenez
et al., 2009). This study also revealed that dia-
betes rates vary by state in the United States.
In the period from 2003 to 2006, the rate was
11.4% and 27.7% among those age 30 to 59
years and 60 years and older, respectively, in
Mississippi and 6.5% and 19.3% among the
same age groups, respectively, in Montana
(Danaei, Friedman, Oza, Murray, & Ezzati,
2009). The increasing prevalence of obesity
appears to have several causes, including the
decrease in cost of food as a percentage of in-
come, a shift toward higher-calorie diets, and
a decrease in physical activity (Philipson &
Posner, 2003). State-to-state variation in cost
of food, dietary patterns, and physical activity
likely contribute to state differences in obesity
and diabetes prevalence.
Not only can community resources affect
diet and disease onset among adults, these
same factors can affect disease onset in sub-
sequent generations. For example, fetuses of
diabetic mothers appear to be at higher risk
of developing diabetes as adults. In a study of
Pima Indians, the children of women with type
2 diabetes were more obese and had a higher
rate of diabetes (50%) compared with the chil-
dren of women who developed diabetes after
the pregnancy (8.6%) (Pettitt, Nelson, Saad,
Bennett, & Knowler, 1993). These fi ndings
suggest that predisposition to disease can be
modifi ed in utero by maternal diet and blood
glucose control. This modifi cation has been
labeled fuel-mediated teratogenesis (Freinkel,
1980).
The “thrifty gene” hypothesis contends that
higher rates of obesity and diabetes among
ethnic minorities, including Pima Indians and
African American populations in the United
States and Aborigines in Australia, arise from
a genetic predisposition to energy storage in
abdominal fat in these populations. In times of
famine or when diets consist of low-fat foods
that are not nutrient dense, such a trait con-
fers survival advantage. However, when food
is plentiful (as in modern United States and
Australia) and diets are high in carbohydrates
and fats, effi cient energy storage becomes a li-
ability and leads to obesity. Although there is
evidence for this theory, it is unclear whether
a thrifty gene infl uences health outcomes
among ethnic minorities to the same extent
as other important factors, such as the dietary
and psychological changes that can occur with
discrimination and economic marginalization
(McDermott, 1998).
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152 Health Social Work Practice: A Spectrum of Critical Considerations
COMMUNITY EFFECTS AND
THE LIFE COURSE
The community effects described can impact
individual health at any or all stages of the life
course, including gestation, childhood, adoles-
cence, adulthood, and end of life. Interest in
community effects on health has spurred inter-
est in health geography and area analysis of
epidemiological data. Examples of studies that
analyze the relationship between neighbor-
hood or community characteristics and health
outcomes at each stage of life are presented
next.
Gestation
Because maternal health is a strong predictor
of fetal and infant health, many investigators
have examined the relationship between the
social experience of pregnant women and the
health of their newborns. In a study of 176 U.S.
cities with a population of 50,000 or more,
LaVeist (1989) found that mortality among
African American infants was positively as-
sociated with the city’s index of segregation.
The mean morality rate in this study was 19.31
per 1,000 live births among African American
infants and 11.09 per 1,000 live births among
White infants. In cities with the lowest level of
segregation, mortality among African Ameri-
can infants was almost 5% below the mean
for all African American infants; in cities with
the highest index of segregation, the rate was
almost 3% above the overall mean. LaVeist
suggested that higher African American in-
fant mortality rates in highly segregated cities
refl ect older housing stock, higher levels of
stress and environmental toxins, and reduced
levels of city and medical care services in
minority communities. According to LaVeist,
these effects are ameliorated as the level of
ethnic integration increases.
The notion that ambient stressors can ad-
versely affect pregnancy outcomes is supported
by several studies. In Santiago, Chile, women
living in high-violence neighborhoods in 1985
and 1986 were 5 times more likely to expe-
rience pregnancy complications (including
gestational hypertension, fetal growth retarda-
tion, and miscarriage) compared with women
living in less violent neighborhoods (Zapata,
Rebolledo, Atalah, Newman, & King, 1992).
Collins and colleagues (1998) found the odds
ratio of very low birth weight (less than 3.3
pounds) was 1.7 to 3.2 for African American
mothers in Chicago who rated their neighbor-
hoods unfavorably in terms of police protec-
tion, protection of property, personal safety,
friendliness, delivery of municipal services,
cleanliness, quietness, and schools compared
with controls. Using multilevel statistical tech-
niques, which account for maternal as well as
neighborhood characteristics, another study
found mean birth weight decreased among
African American infants as the neighborhood
level of economic disadvantage increased
(Buka, Brennan, Rich-Edwards, Raudenbush,
& Earls, 2003). Maternal factors considered in
this study were number of times a woman has
given birth, prenatal care, education, age, mar-
ital status, and smoking history. Neighborhood
disadvantage refl ected an aggregate measure
of the proportion of residents in a neighbor-
hood who lived below the poverty line, were
on public assistance, or were unemployed.
A similar multilevel analysis found a signifi -
cant inverse association between birth weight
and census-tract violent crime among African
American, White, and Hispanic populations
(Masi, Hawkley, Piotrowski, & Pickett, 2007).
The links between maternal psychological
stress, preterm delivery (less than 37 weeks’
gestation), and low birth weight (less than
5.5 pounds) are not well understood. We do
know, however, that maternal stress can lead
to increased fetal cortisol, a stress hormone
that stimulates placental corticotropin-re-
leasing hormone (Chrousos, Torpy, & Gold,
1998; Norwitz, Robinson, & Callis, 1999).
Corticotropin-releasing hormone has been
labeled a “placental clock” because eleva-
tions of this hormone appear to be crucial to
the initiation of labor (McLean et al., 1995).
Preterm delivery is the primary determinant
of low birth weight, and both are risk factors
for health problems later in life. Approxi-
mately three quarters of neonatal mortality
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Community and Health 153
and almost one half of long-term neurologi-
cal impairment in children have been linked to
preterm birth (Alexander, 1998). In a series of
studies, Barker (1998) found evidence that low
birth weight is a risk factor for coronary ar-
tery disease, stroke, diabetes, and hypertension
later in life. These studies and others point to
the importance of maternal health, including
psychological well-being, to the health of off-
spring during infancy and later in life.
Childhood
Positive and negative childhood experiences
can have both immediate and long-term health
effects. These experiences usually refl ect the
child’s care environment as well as neighbor-
hood characteristics. Effects on health can
be direct, involving physiologic pathways,
or indirect, involving long-term health be-
haviors. Using a retrospective cohort design,
Rauh, Parker, and Garfi nkel (2003) found that
third-grade reading scores in the New York
City public schools were signifi cantly related
to both individual- and community-level pre-
dictors. At the individual level, male gender,
low birth weight, unmarried mother, and low
maternal education predicted lower reading
scores. Controlling for individual-level risk,
lower reading scores were signifi cantly asso-
ciated with concentrated community poverty,
defi ned as more than 40% of families in the
community living below the federally defi ned
poverty level. Research suggests that pre-
school educational interventions lead to im-
proved subsequent educational attainment and
avoidance of high-risk health behaviors later in
life (Heckman & Masterov, 2007).
Childhood exposure to lead dust is strongly
associated with housing materials, which itself
is related to the date of housing construction
and neighborhood resources. Using National
Health and Nutrition Examination Survey data
from 1988 to 1994, Bernard and McGeehin
(2003) found blood lead levels (BLL) were
greater than or equal to 5 micrograms per
deciliter (mcg/dL) in 42.5% of children liv-
ing in housing built before 1946 but in only
14.1% of children living in housing built after
1973. In this study, non-Hispanic Black chil-
dren were 3 times more likely to have BLL
greater than or equal to 5 mcg/dL compared
with non-Hispanic White children. Cognitive
changes associated with lead toxicity include
a decrease in IQ, distractibility, poor organi-
zational skills, and hyperactivity. The effects
of lead toxicity among children appear to be
irreversible and may contribute to adverse be-
haviors, including delinquency and teen preg-
nancy (Bellinger, 2004).
Childhood maltreatment, including neglect,
physical abuse, and sexual abuse, also appear
to be related to community social organiza-
tion. Coulton, Korbin, Su, and Chow (1995)
found that the highest risk of maltreatment
occurred among children who lived in neigh-
borhoods characterized by poverty, high num-
bers of children per adult resident, population
turnover, and concentration of female-headed
households. The psychological and physiolog-
ical effects of childhood maltreatment can be
long lasting. In a study of 49 women age 18
to 45 years, Heim, Newport, and colleagues
(2000) found that women with a history of
childhood abuse demonstrated increased pi-
tuitary-adrenal and autonomic responses to
stress compared with controls. Stress-related
peak levels of adrenocorticotropic hormone
(ACTH) were 6 times higher among women
with a history of childhood abuse and current
major depression compared with age-matched
controls. Dysregulation of the hypothalamic-
pituitary-adrenal (HPA) axis has been associ-
ated with several diseases in adults, including
chronic fatigue syndrome, fi bromyalgia, rheu-
matoid arthritis, and asthma (Heim, Ehlert, &
Hellhammer, 2000). Developmental neuro-
biologists currently are examining pathways
through which childhood stress and trauma
infl uence brain development and function later
in life (Teicher, Anderson, Polcari, Anderson,
& Navalta, 2002).
Adolescence
Several studies have found positive associa-
tions among neighborhood socioeconomic
status and adolescent educational attainment
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154 Health Social Work Practice: A Spectrum of Critical Considerations
(including years of schooling completed),
probability of completing high school, and
likelihood of attending college (Leventhal
& Brooks-Gunn, 2000). Depending on the
study, neighborhood socioeconomic status
comprises one or more of these commu-
nity characteristics: percentage of college-
educated residents, percentage of residents
living below poverty, percentage of mana-
gerial/professional residents, high school
dropout rate, levels of female family head-
ship, and female employment. Coulton and
Pandey (1992) found that teen birth and ju-
venile delinquency rates were higher among
adolescents living in Cleveland census tracts
in which more than 40% of the population
lived below the poverty threshold.
An evaluation of a scattered-site public
housing program in Yonkers, NY, revealed
that youths who remained in low-income
neighborhoods were more likely to have used
marijuana in the prior year and show signs of
problem drinking in the previous month com-
pared with adolescents who moved to middle-
income neighborhoods (Briggs, 1997). In the
National Survey of Adolescent Males, a high
rate of neighborhood unemployment was asso-
ciated with impregnating someone and father-
ing a child (Ku, Sonenstein, & Pleck, 1993).
Mediation of the relationship between
neighborhood characteristics and adolescent
behaviors likely involves several pathways. In
a review of this literature, Jencks and Mayer
(1990) described fi ve conceptual models or
pathways of infl uence, each emphasizing a
different neighborhood construct: institutional
resources, collective socialization, contagion
or epidemic effects, competition, and relative
deprivation. In their study of 877 Los Ange-
les adolescents, Aneshensel and Sucoff (1996)
found evidence for some of these effects. In
this study, youth in low-socioeconomic-status
(SES) neighborhoods perceived greater ambi-
ent crime, violence, drug use, and graffi ti com-
pared with youth living in neighborhoods with
high SES. This effect was independent of in-
dividual SES, and the perception of neighbor-
hood hazard was associated with symptoms
of depression, anxiety, oppositional defi ant
disorder, and conduct disorder. These results
suggest that neighborhood characteristics can
have important effects on adolescent physical
health and social behavior.
Adulthood
Several dimensions of the neighborhood envi-
ronment have been linked to illness and mor-
tality among adults. These dimensions include
crime rates, ratio of homeowners to renters,
percentage of residents receiving public assis-
tance, index of segregation, percentage of un-
employment, percentage of households headed
by women, income, education, collective ef-
fi cacy, and housing value. As with studies of
children and adolescents, the central ques-
tion is whether neighborhoods truly infl uence
health outcomes or if differences in health
simply are due to differences in the residents’
age, race/ethnicity, and health behaviors. In
other words, do contextual effects exist above
and beyond the compositional associations
with health? As mentioned, one way to address
this question is to perform multilevel analysis,
which simultaneously accounts for individual-
and neighborhood-level variables.
One of the earliest studies demonstrating
a contextual, or area, effect examined mortal-
ity over a 9-year period in Alameda County,
CA (Haan, Kaplan, & Camacho, 1987). From
the 1,811 study participants, data were ob-
tained regarding baseline health conditions,
socioeconomic factors, health practices, social
networks, and psychological factors. The re-
searchers also noted if the participants lived in
a designated poverty area. Analysis revealed
the age-, sex-, and race-adjusted relative risk
of mortality was 1.71 times higher among
those living in poverty areas compared with
those living in nonpoverty areas. The addition
of baseline health conditions and other indi-
vidual characteristics to the analysis lowered
the relative risk of mortality slightly, but it
remained signifi cantly higher among poverty-
area residents. The authors speculated that ad-
verse health outcomes in poverty areas were
mediated by higher crime rates, poorer hous-
ing, lack of transportation, higher levels of
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Community and Health 155
environmental contaminants, or a combination
of these factors.
In another study, individual- and family-
level information from the 1986 national
Americans’ Changing Lives study was linked
to 1980 census information to assess the rela-
tive effects of personal and neighborhood
characteristics on three health outcomes: num-
ber of chronic conditions experienced in the
previous year, level of functional limitation,
and self-rated health (Robert, 1998). The indi-
vidual-level indicators were age, race, gender,
and education, and the family-level indicators
were income and level of assets. At the com-
munity level, four indicators were included:
percentage of households receiving public
assistance, percentage of families with an in-
come of $30,000 or more, percentage of adult
unemployment, and a composite index of the
three.
Initial bivariate analysis indicated that edu-
cation and family income were more highly
correlated with all three measures of health
compared with the community-level variables.
Controlling for individual-level and family-
level SES, the percentage of households re-
ceiving public assistance had an independent
association with self-rated health. In addi-
tion, percentage of families earning $30,000
or more, percentage of adult unemployment,
and a composite economic disadvantage index
each had associations with several chronic
conditions when individual- and family-level
SES were controlled. Robert (1998) concluded
that while individual-level variables are stron-
ger predictors of health, community-level in-
dicators appear to have signifi cant associations
with health.
LeClere, Rogers, and Peters (1998) used
multilevel analysis to assess neighborhood ef-
fects on female heart disease mortality. Data
from the National Health Interview Survey
(1986–1990) were linked to death certifi cate
information from the National Death Index
and the 1990 U.S. census at the census tract
level. Individual-level information from the
National Health Interview Survey included
age, race, body mass index, preexisting con-
ditions, income, education, marital status,
and employment status. Census information
included percentage of families in the census
tract headed by women, percentage of persons
in the census tract who were Black, median
family income, percentage of households who
received public assistance, and unemployment
rate.
For both White Americans and African
Americans, heart disease rates were higher in
the poorest census tracts. Adjusting for indi-
vidual-level characteristics in the multilevel
model, this study found that women living
in communities where more than one quarter
of the families were headed by women were
more likely to die of heart disease compared
with women who lived in neighborhoods with
fewer female-headed households. The authors
hypothesized that neighborhoods with high
proportions of female-headed households may
be associated with increased fi nancial, physi-
cal, and emotional stress. Stress and other
psychosocial risk factors may contribute to
heart disease either directly, through accel-
eration of the atherosclerotic process, or in-
directly, through adverse coping behaviors,
such as smoking, increased caloric intake, or
increased alcohol intake (Williams, Barefoot,
& Schneiderman, 2003).
These studies provide evidence that the
neighborhood environment exerts an effect on
health independent of individual characteris-
tics. However, as more individual character-
istics are included in multilevel models, the
neighborhood effects on health seem to dimin-
ish. In addition, some neighborhood effects
may be more deleterious than others. Among
the studies reviewed, the most commonly cited
culprits are poor housing quality, exposure to
toxins, and psychological stress.
End of Life
Among older individuals, the intensity of
medical care received at the end of life var-
ies by community. McAndrew-Cooper and
colleagues (1999) used 1995–1996 Medicare
billing information to compare frequency and
types of care delivered to older adults in the last
six months of life. They found that end-of-life
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156 Health Social Work Practice: A Spectrum of Critical Considerations
issues “are resolved in ways that depend on
where the patient happens to live, not on the
patient’s preferences or the power of care to
extend life” (p. 42). For example, in some
communities, the chance of being hospitalized
at the time of death was 20%; in other com-
munities, this proportion was 50%. During the
last 6 months of life, the chance of spending
a week or more in an intensive care unit also
varied by community, ranging from less than
4% to over 20% of patients. The number of
physicians who care for patients in the last
6 months of life, also called “intensity of care,”
varies by community. In some areas, 30% of
patients were seen by 10 or more physicians,
whereas in other areas, fewer than 3% received
care from this number. Interestingly, variations
in intensity of care refl ected amount of health-
care resources more than underlying levels
of illness in the community. Also, variations
in intensity of care did not predict improved
outcomes. That is, mortality rates among older
sick individuals were not lower in communi-
ties providing more intensive medical care.
McAndrew-Cooper and colleagues (1999)
acknowledged that while mortality was not
associated with intensity of care, increased
spending and services at the end of life may
be associated with improved comfort measures
and quality of death. Comfort measures are ob-
viously desirable, but do most people want to
be in an intensive care unit at the end of life? A
study of patients with life-threatening illnesses
indicated that 82% would prefer to die at home
rather than in the hospital if they were told by
their physician they had “very little time to
live” (SUPPORT Principal Investigators, 1995).
Given the results of these studies, it appears that
some communities are better at allocating re-
sources and addressing the needs and wishes of
gravely ill Medicare recipients than others.
IMPLICATIONS FOR SOCIAL
WORK PRACTICE
The studies reviewed in this chapter sug-
gest that neighborhoods can infl uence health
positively by providing access to high-quality
medical care, healthy foods, and green space
for exercise as well as by minimizing expo-
sure to crime, toxins, and infectious disease.
Neighborhoods also can negatively infl uence
health through poor housing stock, exposure to
chemical and biological pathogens, decreased
access to medical care, promotion of adverse
health behaviors, and ambient psychological
stressors. These effects raise important ques-
tions for social work practice. For example,
from a social work perspective, is it more ef-
fi cient to help individuals improve their living
situation on a case-by-case basis or through
community-wide interventions? If a neigh-
borhood is physically or psychologically
unhealthy, does it make more sense to help
individuals move out of the neighborhood or
to advocate community change? The answers
to these questions are refl ected in the diversity
of strategies currently used by social workers.
That is, some social workers address prob-
lems at the individual level, others work for
change at the community level, and still others
do both. Neighborhood improvement is a slow
process and often requires political, adminis-
trative, and community organizing abilities.
Providing services to individuals also requires
administrative ability as well as knowledge of
resources and persistence. Both community-
and individual-level development strategies
are essential, and both should be supported to
a greater extent by public policy.
MacIntyre, MacIver, and Sooman (1993)
believe neighborhood improvement has re-
ceived short shrift in the policy arena. They
argue that unhealthy behaviors and many dis-
eases arise from adverse environments and
that improvements in the physical and social
environment can lead to improved health be-
haviors and health. Instead of encouraging
working-class populations to act more like
middle-class populations, MacIntyre and col-
leagues believe that public policy should foster
the transformation of working-class neighbor-
hoods into middle-class neighborhoods.
However, garnering support for investment
in low-income communities is time consuming
and often is viewed as a low priority by private
and public institutions. Even when support is
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Community and Health 157
obtained and a plan is in place for community
improvement, several pitfalls must be avoided.
One of them is the population displacement
that can occur with gentrifi cation. For exam-
ple, a $150 million project to build 550 new
single-family homes in Chicago’s economi-
cally depressed Englewood neighborhood was
opposed by some working-class and senior
residents who were concerned that rent and
property tax increases would force them out.
Although about 20% of the proposed homes
were set aside for low-income families, local
residents were concerned that overall hous-
ing costs would be too high (Olivo, 2004).
These concerns turned out to be valid, as the
low-income units were designed for families
earning up to 100% of the Chicago Area
Median Family Income, which was $72,400 in
2008. At that time, the median family income
in Englewood was $34,902, effectively making
the low-income units inaccessible to the aver-
age Englewood community resident (Develop-
ing Government Accountability to the People
Network, 2008). This example demonstrates
that although neighborhood improvement can
be benefi cial for many, the unintended conse-
quences for low- and fi xed-income residents
must be considered.
Helping individuals or families fi nd hous-
ing in healthy environments is an important
service provided by many social workers. In
some cases, such assistance can mean the dif-
ference between health and illness or even
life and death. But relocation also has pitfalls.
Moving to a new neighborhood can lead to dis-
ruption of social networks and loss of support
systems. Minorities or individuals with lower
incomes also may feel stressed in high-income
neighborhoods, especially if there is little eth-
nic or economic diversity. Analyzing 11 years
of data from Alameda County, CA, Yen and
Kaplan (1999) found that low-income individ-
uals living in a neighborhood with high SES
had signifi cantly higher mortality rates com-
pared with low-income individuals living in
neighborhoods with low SES. The authors hy-
pothesize that differential access to resources
and psychological stress contributed to this
disparity. The implication for social workers
and other service providers is that relocation
is not without cost, and every effort should be
made to help individuals access services and
develop support networks in their new com-
munities.
An additional cost of relocation can be
incurred by those who remain in impover-
ished communities. Typically, individuals who
leave economically depressed neighborhoods
are either employed or have higher levels of
education and job skills. Out-migration of
human capital means that those who remain
have fewer community resources and fewer
successful role models (Wilson, 1996). This
can result in further community deterioration,
including loss of educational and health-care
services and exacerbation of health problems
among those left behind.
This problem is mitigated partially if all
members of a community leave or are relo-
cated. For example, the Chicago Housing Au-
thority recently relocated all residents of the
Robert Taylor Homes (a series of 28 high-rise
public housing buildings on Chicago’s South
Side) to subsidized housing throughout the
city. The subsidized housing includes mixed-
income units being constructed on the site of
the former Robert Taylor Homes. In contrast
to neighborhoods that have suffered from out-
migration of social capital, this program will
result in the evolution of an impoverished area
into a middle-class community. However, it
will occur at the expense of near complete
turnover of neighborhood residents and the
disruption of many family and social network
ties.
Neighborhood change in the other direc-
tion (from middle class to working class) also
can occur when economic and ethnic inte-
gration occurs too rapidly. The early history
of Chicago’s Englewood neighborhood is an
example. In the fi rst half of the 20th century,
Englewood was a popular destination for Ger-
man, Swedish, and Irish immigrants pursu-
ing the American dream of home ownership.
When African American residents moved to
Englewood to pursue the same dream in the
1960s and 1970s, “White fl ight” ensued, and
the population decreased from 90,000 in 1960
JWBT514_ch07.indd 157JWBT514_ch07.indd 157 9/21/11 7:42 PM9/21/11 7:42 PM
158 Health Social Work Practice: A Spectrum of Critical Considerations
to 40,000 in 2000 (Kouvelis et al., 2003). Ma-
jority exodus when a tipping point is reached
is a common problem and presents a recurring
challenge for politicians and community plan-
ners. How can neighborhoods be integrated
without inducing rapid turnover and without
incurring property tax and rent increases that
overburden low-income residents? In her study
of the history of integration, Cashin (2004)
notes that rapid neighborhood turnover is less
likely to occur when the minority percentage
does not exceed a certain proportion or when
three or more ethnic groups coexist, none more
dominant than the other. Although integration
control is not always necessary, many commu-
nities closely monitor the status and effects of
integration. Some have done so to enhance in-
tegration while others have done so to discour-
age it. Working at planning and administrative
levels, social workers can monitor and help
infl uence patterns of integration in their own
communities. They also can help families and
individuals negotiate the often arcane rules of
subsidized housing and ensure that new resi-
dents have access to community resources.
Another strategy to improve neighborhoods
is through Empowerment Zones—economic
development programs begun during the Clin-
ton administration. Through this initiative,
urban Empowerment Zones (EZs) and Enter-
prise Communities receive federal tax credits
and Block Grants to design and fund economic
development, housing, job training, and social
programs (Dixon, 2000). Since 1993, this
program has had several successes, including
the creation of new businesses, job-training
programs, and new or rehabilitated housing
for homeless persons. However, a perception
exists that ineffective oversight and improper
handling of funds have limited the success of
this program (McDavid, 1998). Many com-
munity residents report that EZ funds have
not reached the street level, where they are
needed most (Dixon, 2000). In collaboration
with administrators and community leaders,
social workers can help ensure that EZ jobs
and resources reach the street level and pro-
vide resources to small business owners, entre-
preneurs, and job seekers. All citizens should
take an interest in taxpayer-funded programs
such as the EZ initiative. Social workers have
the training and skills to monitor and deploy
them as originally designed.
A recent report indicates that approximately
3.5 million Americans are likely to experience
homelessness in a given year (National Coali-
tion for Homelessness, 2009). As a result, 860
cities and counties have enacted 10-year plans
to end homelessness, and 49 states have cre-
ated Interagency Councils on Homelessness
(Interagency Council on Homelessness, 2009).
Social workers can play important roles in re-
ducing the adverse health effects of homeless-
ness, as demonstrated by two recent studies. In
the fi rst, homeless individuals treated in emer-
gency rooms were randomized to long-term
housing and social worker–directed case man-
agement versus usual care, which consisted of
standard discharge planning (Sadowski et al.,
2009). After 18 months, individuals in long-
term housing had fewer emergency depart-
ment visits, fewer hospitalizations, and fewer
days spent in the hospital. In a similar study
of homeless emergency room patients with
HIV, a higher proportion of individuals who
entered long-term housing and received social
worker–directed case management were alive at
one year compared with the usual care group,
who received standard discharge planning
(Buchanan, Kee, Sadowski, Garcia, 2009).
Using progressive taxation policies, many
nations in Europe have had success in pursuing
economic parity. These policies have enhanced
social security and reduced income-related
health differences. Published in 1998, Britain’s
Acheson report on health disparities recom-
mends specifi c steps to reduce these disparities
further, including increased cash and services
to poor women, expectant mothers, children,
and elderly people. Additional resources for
schools and job training programs as well as
improved housing for the poor are also recom-
mended (Acheson, 1998). In the United States,
many politicians decry the “offshoring” of jobs
to low-wage locales and have called for tax
incentives to retain American jobs. Some of
these efforts refl ect increasing recognition of
the growing disparities in employment, income,
and community resources in the United States.
Whether this rhetoric refl ects an appreciation of
JWBT514_ch07.indd 158JWBT514_ch07.indd 158 9/21/11 7:42 PM9/21/11 7:42 PM
Community and Health 159
the link between neighborhood characteristics
and health remains to be seen, but efforts in this
direction have gained momentum in other coun-
tries and some argue that they also should be
supported in the United States.
Social workers can play a key role in advo-
cating economic reform and directing commu-
nity improvement. As professionals who work
on the front lines, social workers observe fi rst-
hand the effects of unemployment, low wages,
and lack of health insurance. Inability to afford
housing, strained family relationships, and de-
ferred treatment for illnesses are just a few of
the outcomes social workers encounter on a
daily basis. Recognizing the need for systemic
change, social workers often lead the way in
bringing attention to resource-poor communi-
ties. This attention can occur in many ways,
including through community-based partici-
patory research (CBPR). CBPR is a powerful
tool for initiating change because it identifi es
community resources, needs, and solutions,
with community stakeholders who are experi-
encing problems. Developed over the past two
decades, the key features of CBPR are that it:
• Recognizes a community as a unit of identity
• Builds on strengths and resources within
the community
• Facilitates collaborative, equitable involve-
ment of all partners in all phases of the re-
search
• Integrates knowledge and action for mutual
benefi t of all partners
• Promotes a collaborative and empowering
process that attends to social inequalities
• Involves a cyclical and iterative process
• Addresses health from both positive and
ecological perspectives
• Disseminates fi ndings and knowledge
gained to all partners
• Involves a long-term commitment by all
partners (Israel, Schulz, Parker, & Becker,
2001)
Recent studies have used CBPR to raise
awareness of the importance of community
characteristics to health outcomes, including
the built environment and health (Redwood
et al., 2010), health-care resources and breast
cancer treatment (Masi & Gehlert, 2009), and
the role of tribal customs in promoting health
and preventing substance abuse (Thomas,
Donovan, Sigo, Austin, & Marlatt, 2009).
Other ways in which social workers can advo-
cate reform and enhance community capacity
include testifying before city and state legis-
latures, writing editorials in local newspapers,
highlighting defi cient city services, and form-
ing community-based service organizations.
A large volume of evidence indicates that
individual health is infl uenced by community
characteristics and resources. Because so many
communities face economic and resource chal-
lenges, the opportunities for social workers to
have a signifi cant impact are enormous. This
impact can occur at the individual level as well
as at the community and national levels. What-
ever strategy is chosen, those who strive to im-
prove the social and physical environment of
others can be assured that such efforts will have
long-lasting and signifi cant health benefi ts.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 7.1
Identify the characteristics of a local neighbor-
hood that appear to have the most important
effects on the health of its residents.
Learning Exercise 7.2
List the physical, social, and health-care needs
of individuals who live in an economically de-
pressed community.
Learning Exercise 7.3
Compare and contrast the advantages and dis-
advantages of the public health and medical
models of health care.
Learning Exercise 7.4
List the advantages of community-based par-
ticipatory research in identifying community
resources, needs, and solutions.
JWBT514_ch07.indd 159JWBT514_ch07.indd 159 9/21/11 7:42 PM9/21/11 7:42 PM
160 Health Social Work Practice: A Spectrum of Critical Considerations
Learning Exercise 7.5
Describe the potential impact of education,
employment, housing, and food policy on
health outcomes in the United States.
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164
8
Physical and Mental Health:
Interactions, Assessment,
and Interventions
MALITTA ENGSTROM
Interactions between physical and mental
health are among the most complex issues that
are brought to social workers in health-care
settings. The complexity stems from the dy-
namic mind–body relationship; the numerous
possible combinations of physical and mental
health conditions; differentiation of psychologi-
cal reactions to physical illness; psychological
effects of physical conditions and treatments
and psychiatric disorders; intervention during
mental health crises; and provision of ongo-
ing intervention to support physical and mental
well-being. While considering these issues, the
social worker formulates assessments and of-
fers interventions that refl ect the unique family
and ecological contexts of people in their envi-
ronments. With particular focus on differential
assessment, this chapter provides guidance for
social workers navigating these complexities.
It is important to recognize the limitations
inherent in using the terms physical health and
mental health (U.S. Department of Health and
Human Services [DHHS], 1999, p. 5). This lan-
guage implies a false division of these related el-
ements of overall health (Angell, 2002; DHHS,
1999; Kerson, 2002). In fact, these two elements
are not only interrelated but also exert mutual
infl uences on each other (Rolland, 1994). Rec-
ognizing this mutual infl uence and the ongoing
emergence of knowledge about the mind–body
connection, this chapter uses these terms for
both illustrative purposes and toward the goal of
developing knowledge with adequate specifi c-
ity so that practitioners can engage effectively
in evidence-based assessment and intervention
(Angell, 2002; Williams, 1998).
Chapter Objectives
• Provide a framework for considering
the intersections of health, psychosocial
well-being, and ecological factors (e.g.,
race, ethnicity, cultural background, gen-
der, socioeconomic status, age, sexual
orientation, family relationships, social
support).
• Offer guidance for differential assessment
of psychological reactions to physical ill-
ness, psychological symptoms associated
with physical illness or treatment, and clini-
cal mood and anxiety disorders.
• Provide a conceptual overview and clinical
tools for the assessment of suicide risk and
for intervention in this area.
• Highlight general intervention strategies to
support overall health, coping, and well-
being and targeted intervention strategies
to assist people experiencing psychologi-
cal distress associated with depression and
anxiety disorders in health-care settings.
PSYCHOSOCIAL CONDITIONS
AND INCREASED RISK FOR
ILLNESS
Stress
Psychological distress, including stress, anger,
hostility, depression, and anxiety, is associated
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Physical and Mental Health: Interactions, Assessment, and Interventions 165
with numerous negative health outcomes
across a wide range of illnesses (Institute of
Medicine [IOM], 2001). The role of stress in
particular has been well documented in its
relationship to risk for numerous health prob-
lems, including cardiovascular disease, cancer,
autoimmune and infl ammatory disorders, and
wound healing. Although stress and its effects
on physiology can be benefi cial and enable a
person to respond to a threat—to “fi ght or fl ee”
(IOM, 2001)—an individual will experience
allostatic load when faced with chronic expo-
sure to undefi ned stress that is unresolved and
thus perpetuates the stress response. Allostatic
load refers to the cumulative physiological toll
of repeated responses to stress (McEwen &
Stellar, 1993). Allostatic load also can occur
when the stress response fails to activate
(McEwen, 1998; McEwen & Gianaros, 2010).
Allostasis involves the body’s physiological re-
sponses to stressors to foster adaptation to chal-
lenge and to maintain homeostasis (Sterling &
Eyer, 1988). However, as the body continues
to engage in allostasis, allostatic load results
and can contribute disease (McEwen, 1998;
McEwen & Stellar, 1993). Allostatic load is
infl uenced not only by chronic stress but also
by behavioral factors, including substance use,
physical activity, sleep, and diet; individual
temperament; and genetics and developmental
variations (IOM, 2001; McEwen, 1998).
There are two primary ways to consider the
relationship between stress and health: through
a biological pathway and through behavior.
Through a biological pathway, stress directly
infl uences the body’s physiology. Responding
to stress releases hormones that infl uence the
central nervous, cardiovascular, and immune
systems (IOM, 2001). Exposure to chronic
stress in particular negatively infl uences the
immune system (Segerstrom & Miller, 2004).
The concept of allostatic load—the cumulative
physiological cost of responding to stress—
provides a compelling framework for under-
standing ways in which responding to stress
affects well-being, in general, and perpetuates
health disparities, in particular (McEwen &
Gianaros, 2010). Coping with stress may lead
to behaviors, such as eating a higher-fat diet,
smoking cigarettes, and reducing exercise, all
of which increase the risk for illness (Ng &
Jeffrey, 2003). Through both physiology and
behavior, stress intersects with health. In ad-
dition, the psychosocial and physical demands
of illness may increase stress and warrant in-
tervention to address biological and behavioral
effects on overall health.
Popular notions of stress may discount
its impact on well-being, as refl ected in such
statements as “He’s just stressed out.” How-
ever, a growing body of science suggests that
being stressed out, particularly if one repeat-
edly experiences stress, has far-reaching im-
plications for physical health (McEwen &
Gianaros, 2010). Social workers in health-care
settings are well positioned to help people
who are experiencing psychological stress.
Such intervention may be critical to support-
ing physical and mental health. One powerful
framework for guiding intervention in this area
is Lazarus and Folkman’s (1984) model of
stress, appraisal, and coping. This model and
its implications for physical and mental health
are further discussed in the “Psychosocial In-
tervention Strategies in Health-Care Settings”
section of this chapter.
Social Relationships
Social networks, support, integration, and
capital also have strong implications for physi-
cal and mental health (IOM, 2001; McGinnis,
Williams-Russo, & Knickman, 2002). The
term social networks generally refers to the
composition of a person’s social relationships
(e.g., number of people, types of relationships,
relationships among the people in a social
network); social support generally refers to a
person’s sense of feeling warmly regarded and
respected or to the type of support available
(e.g., emotional support, material assistance,
instrumental or practical support) (Cobb,
1976; House & Kahn, 1985; IOM, 2001). So-
cial integration can be conceptualized as the
number of intimate relationships a person has
with both individuals (including family and
friends) and groups (including voluntary and
religious organizations) as well as a person’s
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166 Health Social Work Practice: A Spectrum of Critical Considerations
sense of having multiple social roles and com-
munal connections with others (IOM, 2001;
McEwen & Gianaros, 2010). Social capital re-
fl ects a societal conceptualization of its mem-
bers’ integration. Measures of social capital
can include reported trust among people and
degree of civic participation. Greater social
integration is associated with a host of health
outcomes, including improved quality of life,
reduced mortality, fewer suicides, and less
crime (IOM, 2001). Furthermore, enhancing
social integration may be particularly helpful
in reducing the long-term physiological costs
of repeatedly responding to stress (McEwen &
Gianaros, 2010).
Social ties and support are far reaching in
their power to strengthen health. They sup-
port survival in infancy, buffer stress in life
transitions, increase one’s ability to fi ght off
a cold, reduce advancement of carotid ath-
erosclerosis, slow the decline of immune
functioning in persons with human immu-
nodefi ciency virus (HIV), and contribute to
lower levels of allostatic load. Alternatively,
isolation, loss, confl ict within relationships,
and the potential for disease transmission are
aspects of social ties that can negatively affect
physical and mental health (IOM, 2001). For
social workers in health-care settings, these
fi ndings highlight the importance of explor-
ing available social support, augmenting it
when needed, enhancing interactions among
social network members as indicated, and
facilitating social integration. In addition,
social workers can play an important role in
preventing disease transmission between so-
cial network members through education and
counseling efforts.
PHYSICAL ILLNESS AND THE
ROLE OF MENTAL HEALTH
Among people who are experiencing physical
illness, mental health can play an important
role in physical outcomes across the life span.
For example, among adolescents, depression,
low-self-esteem, and parent–child confl ict
can infl uence nonadherence to oncology regi-
mens (Kennard et al., 2004). Among adults
who have experienced myocardial infarction,
depression, state anxiety, and psychologi-
cal distress can increased the risk of 5-year
cardiac-related mortality (Frasure-Smith &
Lesperance, 2003). Among older women with
cancer, depression can lower the likelihood of
receiving appropriate treatment and increase
the risk of death (Goodwin, Zhang, & Ostir,
2004). In addition, treating depression can
reduce intensity of pain and disability asso-
ciated with osteoarthritis among older adults
(Lin et al., 2003).
The next example of research among
women living with HIV is provided to illustrate
the relationship between mental and physical
health, to consider possible pathways through
which mental and physical health interact,
and to consider implications for social work
practice. In this study, Ickovics and colleagues
(2001) found that women with chronic depres-
sion were twice as likely to die as women with
limited or no depressive symptoms. In addi-
tion, when controlling for sociodemographic
background, clinical status, and substance use,
chronic depression predicted decline in CD4
cell counts among women in the study. Al-
though the causal mechanisms in this relation-
ship remain unclear, the authors propose four
possible explanations:
1. The previously established impact of de-
pression on morbidity and mortality via
changes in neuroendocrine and immuno-
logical functioning may have an interaction
effect with the medical illness (see also
Cohen & Herbert, 1996; Kemeny et al.,
1994; Miller, Cohen, & Herbert, 1999).
2. Depression may contribute to engagement
in risk behaviors, such as alcohol and to-
bacco use, and to disengagement in health
care, which may negatively infl uence health
status.
3. The negative impact of depression on medi-
cation adherence among people living with
HIV may contribute to declines in health.
4. Although protease inhibitors have been
shown to be associated with reductions in
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Physical and Mental Health: Interactions, Assessment, and Interventions 167
symptoms of depression, fewer than half
the women in the study received highly ac-
tive antiretroviral therapy for HIV (Ickovics
et al., 2001; Low-Beer et al., 2000). With
suboptimal treatment experiences, women
may have reduced access to both the physi-
cal and the mental health gains associated
with protease inhibitor treatment.
This example of the relationship between
depression and mortality among women liv-
ing with HIV underscores both the relevance
of mental health in physical health outcomes
and the complexity of possible pathways be-
tween mental and physical health. Although
medical intervention to address physical ill-
ness may be the priority among the health-care
team, mental health assessment and interven-
tion is likely to be closely linked with physi-
cal health outcomes. In terms of social work
practice, this linkage highlights the critical role
of assessing psychosocial conditions, including
mental health and risk behaviors, and formulat-
ing interventions that can support individuals’
overall health.
ASSESSING PSYCHOSOCIAL
CONDITIONS IN HEALTH-
CARE SETTINGS
Accurate assessment is at the heart of effec-
tive social work intervention. As described by
Meyer (1993), assessment involves “the think-
ing process that seeks out the meaning of case
situations, puts the particulars of the case in
some order, and leads to appropriate interven-
tions” (p. 2). In addition, the assessment is a
relationship-building process with clients. The
effort to identify the client’s presenting con-
cern, factors that contribute to it, resources that
can alleviate it, and how to address it is ide-
ally a collaborative endeavor (Berlin & Marsh,
1993). As the social worker seeks to under-
stand the client in his situation, her expression
of interest and empathy and her engagement
with the client as a respected collaborator can
facilitate a positive helping relationship. Such
an alliance is an important component of ef-
fective services (Horvath, 1995).
In health-care settings, social workers are
likely to encounter people with a range of
mental health experiences. Some people may
be experiencing mild psychological distress
and may benefi t from psychoeducation re-
garding their physical conditions and support-
ive counseling to enhance coping and stress
management. Others may be experiencing
severe psychological distress and may ben-
efi t from intensive psychosocial interventions,
including psychotherapy and psychopharma-
cology (DHHS, 1999; IOM, 2001). The pro-
cess through which a social worker or other
professional considers the nature of a client’s
mental health issues and their infl uencing fac-
tors is called differential assessment. When
the process is intended to identify a psychiat-
ric diagnostic category, it is called differential
diagnosis (American Psychiatric Association,
2000). This chapter uses the term differential
assessment to refl ect a comprehensive focus
that extends beyond diagnostic consider-
ations. To guide differential assessment and
thus appropriate intervention, this discussion
covers several intersecting domains, includ-
ing ecological factors, mental health symp-
toms, physical conditions, medications, and
substance use. Figure 8.1 illustrates various
domains related to mental health symptoms;
Figure 8.2 provides a more real-world depic-
tion of the complex intersections among each
of these domains.
Ecological Factors: Macrosystems,
Exosystems, and Mesosystems
Although conceptualizations of the connec-
tions between the person and the environment
have varied, social workers have a long-
standing history of recognizing the importance
of a person-in-environment perspective (Berlin
& Marsh, 1993; Germain & Gitterman, 1980;
Hollis, 1939; Jordan & Franklin, 1995; Kondrat,
2002; Perlman, 1957; Richmond, 1917). Eco-
logical systems theory (Bronfenbrenner, 1977,
1979, 1989) provides a lens through which
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168 Health Social Work Practice: A Spectrum of Critical Considerations
Health
Conditions
Ecological
Factors*
Medications/
Medical
Treatment
Substance
Use
Mental Health
Symptoms
Co-Occurring
Psychiatric
Disorder(s)
Figure 8.2 Mental Health Symptoms
*For example, race, ethnicity, cultural background, SES, employment status, sexual orientation, spiritual background,
family, social support, gender, and age.
Mental
Health
Symptoms
Health
Conditions
Ecological
Factors*
Medications/
Medical
Treatment
Co-Occurring
Psychiatric
Disorder(s)
Substance
Use
Figure 8.1 Domains Related to Mental Health Symptoms
*For example, race, ethnicity, cultural background, SES, employment status, sexual orientation, spiritual background,
family, social support, gender, and age.
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Physical and Mental Health: Interactions, Assessment, and Interventions 169
to employ this perspective in considering the
transactional intersections of ecological fac-
tors and physical and mental health. According
to ecological systems theory, each individual
experiences life within a unique intersecting
web of systems. These intersecting systems
can include the microsystem (i.e., individual
activity, roles, physical and mental health
status) and then broaden to the mesosystem
(i.e., relationships with family, signifi cant oth-
ers, peers), then to the exosystem (i.e., work,
neighborhood, community), and fi nally to the
macrosystem (i.e., culture and dominant pat-
terned processes that inform numerous con-
fi gurations, including politics, government,
education, and law). Through this perspective,
one can consider the relationships between
physical and mental health within the context
of relationships with signifi cant others and
peers; interactions with community, school,
work, or unemployment; and connections to
broader cultural frameworks and governmen-
tal institutions.
The importance of this perspective is not
only its consistency with social work practice,
which recognizes that individuals and their en-
vironments exist in dynamic, mutually infl u-
encing interaction (Kondrat, 2002), but also in
the conclusion reached by the seminal report
from the IOM (2001) that focuses on the in-
teractions among biology, behavior, and social
infl uences. After reviewing evidence gath-
ered across numerous disciplines, the report
concludes:
[H]ealth and behavior are infl uenced by fac-
tors at multiple levels, including biological,
psychological, and social. Interventions that
involve only the person—for example, using
self-control or willpower—are unlikely to
change long-term behavior unless other fac-
tors, such as family relationships, work situ-
ation, or social norms, happen to be aligned
to support a change. (p. 27)
To formulate an accurate assessment that will
lead the social worker in the direction of ef-
fective intervention, multisystemic infl uences
need to be considered. Lack of attention to
the various components of an ecologically in-
formed assessment may lead the social worker
to focus excessively on either individual char-
acteristics or environmental factors and result
in faulty explanations regarding how to be
most helpful (Berlin & Marsh, 1993).
A dispositional bias that focuses exces-
sively on individual-level explanations of
presenting problems is a common assessment
error (Berlin & Marsh, 1993; Gambrill, 2006);
however, complex social, political, and eco-
nomic systems infl uence health behaviors and
access to health-supporting resources (IOM,
2001). Effective assessment requires deliber-
ate attention to multisystemic considerations.
The ecological framework provides an effi –
cient way to consider the numerous systems
with which individuals interact and their mu-
tual infl uence with physical and mental health.
This overview of an ecological approach to
assessment begins with the macrosystem and
concludes with in-depth attention to aspects
of the microsystems of physical and mental
health. This sequence of assessments acknowl-
edges that complex, multisystemic factors in-
fl uence physical and mental health. Beginning
with the macrosystem places social and en-
vironmental considerations in the foreground
of the assessment and intervention processes.
The critical importance of culturally compe-
tent services and the growing body of evidence
regarding health disparities based on race and
socioeconomic background further support
starting at the macrosystem and proceeding to
exo-, meso-, and microlevel components of the
assessment.
Macrosystems
Beginning with the broadest level, the macro-
system, McGoldrick (1982) states that neither
physical nor mental health problems can be
assessed appropriately without understanding
“the frame of reference of the person seek-
ing help” (p. 6). A person’s cultural context
informs this frame of reference and infl u-
ences how she will identify and label prob-
lems (McGoldrick, 1982). In addition, cultural
infl uences may shape the experience and
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170 Health Social Work Practice: A Spectrum of Critical Considerations
communication of pain, expected or desired
treatment, understanding of illness causes,
coping styles, and perspectives regarding
whom to turn to for help (e.g., primary care
physician, mental health provider, traditional
healer, clergy) (DHHS, 2001a; McGoldrick,
1982). In the context of assessing and inter-
vening to address mental health in health-care
settings, these considerations become particu-
larly salient in several ways.
The ways in which symptoms are expe-
rienced and described will intersect with the
social worker’s understanding of what is the
matter and how to help (Berlin & Marsh, 1993;
McGoldrick, 1982). Generalized statements re-
garding culture and cultural norms, values, and
expectations run the risk of conveying stereo-
typed information that may obscure individual
differences and experiences and may over-
look diversity within a culture (Yellow Bird,
Fong, Galindo, Nowicki, & Freeman, 1996);
however, such information, when provided
and used appropriately, can broaden the social
worker’s cultural knowledge base and inform
efforts to reach a shared understanding of the
client’s experiences (Kerson, 2002). With this
caveat in mind, somatization—the expression
of feelings of distress through physical symp-
toms—refl ects an important intersection be-
tween culture and physical and mental health
(DHHS, 2001a). Powerful infl uences are likely
to contribute to somatization across cultural
groups, including the culture’s understanding
of the connection between mind and body,
culturally accepted ways of expressing dis-
tress, and culturally informed stigma regarding
mental illness (DHHS, 2001a). For example, a
limited body of research suggests that, among
people who are American Indian and Alaska
Native, there is not a clear distinction between
mind and body, and it is likely that such people
express distress in both somatic and psycho-
logical terms (DHHS, 2001a). Among several
Asian cultures, mental illness carries signifi –
cant stigma; the weight of this stigma may
infl uence the likelihood of people from Asian
backgrounds expressing psychological dis-
tress in physical symptoms (DHHS, 2001a).
Cultural perspectives regarding the connection
between mind and body also may infl uence
this likelihood (Lin & Cheung, 1999); how-
ever, when asked explicitly about mental
health, research suggests that Asian clients
will report symptoms in psychological terms
(DHHS, 2001a; Lin & Cheung, 1999).
Common examples of somatization among
people who are Puerto Rican, Mexican, and
White include stomach-related problems, chest
pain, and palpitations. Among people in Africa
and South Asia, somatization may involve sen-
sations of “burning hands and feet,” “worms in
the head,” or “ants crawling under the skin.”
Among some Asian groups, somatization may
involve blurred vision, dizziness, and vertigo
(DHHS, 2001a, p. 11). In terms of social work
practice in health-care settings, the possible
somatization of psychological distress under-
scores the importance of routine screening for
mental health concerns.
To provide culturally competent assess-
ment and intervention, it is critical that social
workers become informed about their own and
their clients’ cultural beliefs about experiences
of physical and mental health (DHHS, 2001a;
Pinderhughes, 1989; Rolland, 1994). Such
competence is vital to recognize and support
normative coping in the midst of physical or
mental illness and to avoid misassessment of
physical and mental health symptoms (Lin &
Cheung, 1999). The next paragraphs discuss
some strategies to assist social workers with
increasing their cultural competence in ad-
dressing mental health in health-care settings.
Becoming more mindful of one’s own cul-
tural beliefs about physical and mental health
may enhance self-awareness and capacity to
engage in culturally competent assessment and
intervention (Pinderhughes, 1989; Rolland,
1994). Social workers should consider spe-
cifi c ways in which their cultural background
infl uences their values regarding expressions
of distress and mental and physical illness.
One particularly signifi cant domain in the as-
sessment of mental health pertains to cultural
expectations regarding expression of emotion.
To what degree does a person’s cultural back-
ground encourage open expression of emotion
or limit its direct expression? Social workers’
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Physical and Mental Health: Interactions, Assessment, and Interventions 171
own beliefs about expected displays of emotion
are likely to infl uence the lens through which
they assess client experiences. For example, a
social worker whose cultural background en-
courages direct expression of emotion may
view a person who is reserved in emotional
expression as having a problematic restricted
range of affect, when, in fact, the behavior is
consistent with the person’s cultural context and
does not refl ect a problem in emotional expres-
sion. Awareness of this lens can foster refl ec-
tion regarding culturally informed assessment
and the recognition that “cultural differences
are not deviances” (Pinderhughes, 1989, p. 17).
Additional salient domains for social workers to
consider include their own culturally informed
expectations regarding how people respond to
physical pain and values regarding mental ill-
ness and psychological distress.
Exploring clients’ cultural identity with
them can explain implications of culture in
their presenting concerns and service prefer-
ences, including culturally informed ways of
expressing distress and preferred types of help.
Furthermore, explorations of culture, immigra-
tion, and acculturation contribute salient infor-
mation to ecologically informed assessments
(American Psychiatric Association, 2000).
Becoming better informed about the cul-
tures of the people social workers serve and
about evidence-based interventions that are
culturally relevant to them can be important
avenues to enhancing intervention effective-
ness (Carlton-LaNey, 1999; DHHS, 2001a;
Pinderhughes, 1989).
As outlined in Chapter 10 of this book, ex-
ploring clients’ beliefs about their illnesses,
their desired outcomes, and their service
preferences may be facilitated by using these
questions (Kleinman, Eisenberg, & Good,
1978, p. 256):
What do you think has caused your
problem?
Why do you think it started when it did?
What do you think your sickness does to
you? How does it work?
How severe is your sickness? Will it have
a short or long course?
What kind of treatment do you think you
should receive?
What are the most important results you
hope to receive from this treatment?
What are the chief problems your sickness
has caused for you?
What do you fear most about your
sickness?
Becoming better attuned to issues of com-
monality and difference, including race, eth-
nicity, culture, socioeconomic status (SES),
gender, sexual orientation, age, physical abil-
ity, and power, between the social worker and
the clients served may facilitate addressing
these elements within the helping relationship
(American Psychiatric Association, 1994; Pin-
derhughes, 1989).
Actively considering clients’ spiritual be-
liefs can contribute to the provision of cul-
turally competent services. As described by
Kerson (2002), spiritual beliefs and health
beliefs often are intertwined and warrant at-
tention that is comparable to other cultural be-
liefs. Walsh (2004) further describes the role
of prayer, meditation, and faith in numerous
positive health outcomes, including reduced
stress, decreased blood pressure and cortisol
levels, improved management of chronic pain,
reduced problems with alcohol or other drugs,
and reduced depression. Walsh also asserts,
“Over 350 studies point to religion as the for-
gotten factor in physical and mental health”
(p. 198). Beliefs may provide a powerful
source of cognitive assistance to people who
are experiencing physical and mental health
diffi culties. They may facilitate a sense of co-
herence, meaning, and control (Walsh, 2004).
In addition to supporting a worldview
that facilitates meaning, Musick, Traphagan,
Koenig, and Larson (2000) provide three fur-
ther pathways through which religion may
positively infl uence health: (1) supporting
positive health behaviors (e.g., healthier diets,
reduced drinking and smoking, increased
physical activity); (2) fostering social integra-
tion and support (e.g., shared beliefs, larger
social network, opportunities for conversation,
learning, support); and (3) providing comfort
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172 Health Social Work Practice: A Spectrum of Critical Considerations
(e.g., emotional and instrumental support, re-
ligious rituals for assistance in diffi cult times,
source of hope and coping). Spirituality and
religion may be important resources, but as-
sessment should be sensitive to these topics
as potential sources of confl icted or nega-
tive feelings (Gotterer, 2001). Open-ended
inquiry that is sensitive to a diversity of ex-
periences and that elicits the client’s unique
experiences can be a useful starting point
for active consideration of spiritual beliefs.
Chapter 11 of this book may help in address-
ing these issues further; the chapter provides
additional detail regarding ways in which
culture intersects with health, including ways
in which bodily sensations are recognized as
symptoms of illness.
Although cultural competence facilitates the
recognition of strengths of cultural infl uences
and coping in the midst of health challenges
(McGoldrick, 1982), the infl uences of race-
related health disparities are particularly salient
in the context of physical and mental health.
An ecologically informed assessment requires
contextual knowledge of these disparities and
their implications for effective services. The
extent of race-related disparities in physical
and mental health is staggering. For example,
in comparison to their White counterparts,
people who are African American are more
than twice as likely to experience infant mor-
tality and to give birth to a low-weight infant;
they also have considerably higher prevalence
of tuberculosis, greater exposure to unhealthy
air, and considerably higher death rates associ-
ated with heart disease, stroke, all cancers, and
homicide (Keppel, Pearcy, & Wagener, 2002;
Weir et al., 2003). Although African American
people have lower rates of major depression
and alcohol dependence than their White coun-
terparts, they are likely to experience more se-
vere, persistent symptoms and to receive less
treatment (Grant, 1997; D. R. Williams et al.,
2007; D. R. Williams, Mohammed, Leavell,
& Collins, 2010). Furthermore, in addition
to increased risk of dying from cardiovascu-
lar disease, people who are African American
experience increased risk of burden associated
with the condition than do people who are
White (Hahn, Heath, & Chang, 1998; Offi ce of
Minority Health, Centers for Disease Control
and Prevention [CDC], n.d.; Parmley, 2001).
Although epidemiological studies indicate in-
creased prevalence of cardiovascular-disease
risk factors among people who are African
American (e.g., physical inactivity, being over-
weight, hypertension, diabetes mellitus) (Hahn
et al., 1998), it is also important to consider
the ways in which such disparities are shaped
by structural inequities that infl uence access
to health care and to resources that support
health, including safe living, working, and ex-
ercising environments and healthy dietary op-
tions (Keppel et al., 2002; Winkleby, Kraemer,
Ahn, & Varady, 1998; Wyatt et al., 2003; also
see Chapter 7 in this book). In addition, al-
though race and socioeconomic inequalities
intersect and additional research is needed to
identify the ways in which they (along with
gender) infl uence health, several studies indi-
cate that race-related health disparities persist
even when controlling for socioeconomic fac-
tors (for discussion, see Williams et al., 2010).
Racial discrimination is another salient
macrolevel consideration related to physical
and mental health disparities (Krieger, 2003;
D. R. Williams, Neighbors, & Jackson, 2003).
A large body of research conducted across di-
verse cultural groups indicates that discrimi-
nation is associated with health problems and,
in particular, with mental health problems
(D. R. Williams et al., 2003; D. R. Williams
& Mohammed, 2009; Yoo, Gee, & Takeuchi,
2009); however, the mechanisms through
which discrimination infl uences health are still
being explored (Krieger, 2003; D. R. Williams
et al., 2003; D. R. Williams & Mohammed,
2009). One conceptualization of this relation-
ship suggests that experiencing discrimination
is a source of stress that can negatively infl u-
ence health through physiological pathways
and through behaviors that increase illness risk
(D. R. Williams et al., 2003; D. R. Williams &
Mohammed, 2009).
Building on this conceptualization are
examinations of the mediating role of cop-
ing in the relationship between discrimina-
tion and health (Noh & Kaspar, 2003). As
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Physical and Mental Health: Interactions, Assessment, and Interventions 173
described by Noh and Kaspar, this body of
research considers differences in health based
on whether people exposed to discrimination
employ emotion-focused coping or problem-
focused coping. Emotion-focused coping gen-
erally includes cognitions that aim to reduce
distress, including minimization, avoidance,
distancing, and fi nding positive elements of
negative circumstances (Lazarus & Folkman,
1984). Problem-focused coping generally in-
volves steps to solve a problem, including
specifying the problem, considering potential
solutions, evaluating strengths and limitations
of potential solutions, choosing a solution,
and taking action (Lazarus & Folkman, 1984).
There have been divergent fi ndings regarding
the health effects of emotion- and problem-
focused coping among members of diverse
culture and gender groups. Noh and Kaspar
(2003) assert that the effectiveness of coping is
likely shaped by the nature of the stressor and
the individual’s resources, social context, cul-
tural background, and degree of acculturation.
Another conceptualization of the possible
mechanisms through which discrimination
negatively affects health comes from the work
of Krieger (2003). She argues that the infl u-
ence of racism on health should be examined
through research on these issues: “(1) eco-
nomic and social deprivation; (2) toxic sub-
stances and hazardous conditions; (3) socially
infl icted trauma . . . ; (4) targeted marketing of
commodities that can harm health, such as
junk food and psychoactive substances . . . ;
and (5) inadequate or degrading medical care”
(p. 196). Although Krieger recognizes the role
of individual- and community-level coping
and action to counter discrimination, these
fi ve potential pathways underscore systemic
and multilevel infl uences of racism on health.
This body of knowledge is evolving, but im-
plications for social work practice include
attention to individual coping strategies to
manage stress and support health and systemic
factors that negatively infl uence physical and
mental health. Additional considerations on
how to support psychological well-being and
coping when experiencing serious illness are
addressed in the “Psychosocial Intervention
Strategies in Health-Care Settings” section of
this chapter.
Exosystems
Exosystem issues regarding SES, including
income, education, and employment, are also
likely to intersect with microlevel physical
and mental health issues. In fact, as described
by McGinnis and colleagues (2002), “for the
population as a whole, the most consistent pre-
dictor of the likelihood of death in any given
year is level of education; persons ages 45
to 64 in the highest levels of education have
death rates 2.5 times lower than those in the
lowest level” (p. 81). Individual poverty and
societal inequality of income distribution also
negatively affect mortality among people with
lower incomes (McGinnis et al., 2002). In ad-
dition to mortality risks associated with lower
SES is an increased risk of mental health prob-
lems (DHHS, 1999; Siefert, Bowman, Hefl in,
Danziger, & Williams, 2000). Comparisons
between people in the extremes of SES sug-
gest that annual prevalence of mental disorders
among people at the lower end are approxi-
mately twice that of those at the higher end
(World Health Organization [WHO], 2001).
The increased prevalence of mental health
problems among people with lower SES has
been explained in two primary ways. The fi rst
explanation is that the increased risk of acute
and chronic stressors among people living
in poverty may contribute to their increased
risk of mental health problems (Siefert et al.,
2000). This explanation is referred to as so-
cial causation, in which social circumstances
have a causal link with mental health prob-
lems. The second explanation, referred to as
social selection, argues that mental health
problems cause people to move downward in
SES (Dohrenwend et al., 1992; Saraceno &
Barbui, 1997). Social causation appears most
relevant for women experiencing depression
and for men experiencing antisocial personal-
ity and substance use disorders while social
selection appears most relevant among those
experiencing schizophrenia (Dohrenwend et al.,
1992; Siefert et al., 2000). Among children,
recent research suggests that social causation
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174 Health Social Work Practice: A Spectrum of Critical Considerations
may be most relevant for young people ex-
periencing oppositional or conduct disorders
and that parental monitoring mediates this re-
lationship, such that changing poverty level
is associated with increased parental monitor-
ing, which in turn is associated with decreased
mental health symptoms (Costello, Compton,
Keller, & Angold, 2003). This study did not
fi nd that social causation was as relevant for
symptoms of anxiety and depression among
the participants.
SES also is associated with the course of
mental health problems. Numerous factors
may infl uence this relationship, including ob-
stacles related to accessing care, lack of health
insurance, and lack of culturally and linguisti-
cally appropriate services (WHO, 2001). For
social workers addressing mental health issues
in health-care settings, the increased risk of
physical and mental health problems among
people with lower SES underscores the impor-
tance of designing and delivering services to
reach this population.
Research on stress and coronary artery dis-
ease provides an example of the specifi c ways
CASE EXAMPLE
Joseph is a 52-year-old, heterosexual,
single man of Italian American ancestry
who has worked in various construction
positions for the past 20 years. Although
Joseph earns enough money to pay most
of his monthly bills, his employer does not
provide health insurance, and his income
exceeds the eligibility criteria for Medicaid.
Joseph recently presented in the emergency
room reporting chest pains and shortness of
breath, which ultimately were diagnosed as
symptoms of myocardial infarction. Upon
consultation with the health-care team,
Joseph was encouraged to begin a medication
regimen and urged to reduce his work hours,
to reduce the stress in his life, and to improve
his eating habits because he generally relied
on low-cost, high-fat takeout for lunch and
dinner. Upon discharge from the hospital,
Joseph agreed to follow the health-care
team’s recommendations and enrolled in the
hospital’s stress management program.
Within two weeks of beginning the
stress management program, Joseph reports
that his bills are accumulating due to his
efforts to work fewer hours and that he has
just received a hefty bill for his hospital
services in addition to expensive prescribed
medications. Joseph reports that he feels
better since reducing his work hours and
attending the stress management program
but fears he will be unable to pay his
bills and might lose his house if he does
not return to his prior work schedule. He
also says that he thinks returning to work
might reduce his general level of stress,
because much of it originates with fi nancial
pressures and pressure from his boss to
work longer days. Joseph fears his boss
might replace him with another worker who
can maintain the demanding hours.
in which SES intersects with mental and phys-
ical health. Krantz and colleagues (2000) dis-
cuss factors that may contribute to the inverse
relationship between SES and cardiac morbid-
ity and mortality, including limited access to
health care, increased prevalence of risks (e.g.,
smoking, high blood pressure), inadequate nu-
trition, and social and environmental stress.
The hypothetical case example below illus-
trates this point in regard to implications for
social work practice.
As this case depicts, supporting Joseph’s
physical and mental well-being involves
consideration not only of individual coping
and stress management strategies but also
of broader systems, including employment
and socioeconomic resources. Furthermore,
as the case depicts, the relationship between
socioeconomic resources and health can be
a bidirectional one (Adler & Stewart, 2010;
Kawachi, Adler, & Dow, 2010).
Mesosystems
Attention to clients’ family and social contexts
refl ects the mesosystem from an ecological
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Physical and Mental Health: Interactions, Assessment, and Interventions 175
perspective. Numerous empirical studies sup-
port the vital role of family and social support
in physical and mental health outcomes (for ex-
amples, see Allgšwer, Wardle, & Steptoe, 2001;
Bagner, Fernandez, & Eyberg, 2004; DiMatteo,
2004a; McFarlane et al., 1995; for reviews,
see Campbell, 2003; Weihs, Fisher, & Baird,
2002). When considering issues of physical
and mental health in the context of family and
social relationships, it is important to pay at-
tention to the meaning, diversity, and strengths
of these relationships. In her discussion of the
course of psychotherapeutic intervention with
a lesbian woman struggling with infertility,
Brown (1991) writes, “[D]uring the process of
infertility treatments and fertility testing, Carla
[the client] always had to anticipate having to
explain to yet another person where her hus-
band wasn’t and who Susan [her partner] was”
(p. 25). Such anticipation of a heterosexist bias
is likely to fuel a client’s emotional disengage-
ment from the health-care team and unlikely to
facilitate effective intervention to support the
mesolevel intimate relationships in the client’s
life. To support clients in their intimate relation-
ships and to support their physical and mental
health, information gathering should proceed
with open-ended, inclusive questions that do
not presume particular responses.
In addition and as previously described,
it is likely that macrosystemic issues such as
homophobia may interact with microsystem
physical and mental health conditions. Brown
(1991) describes this complexity in relation to
dominant cultural expectations of women to be
wives and mothers. Women who are lesbian
and struggling with infertility may confront
complex issues regarding their identity in this
dominant cultural context. These intersecting
cultural and personal experiences may create
“diffi culties both in valuing herself and being
valued by others, diffi culties that may be dis-
tressing enough to merit psychotherapeutic
intervention” (Brown, 1991, p. 15). In Chap-
ter 13 of this book, Rolland discusses relation-
ships among individuals, families, and health
and ways in which social workers can inter-
vene to foster coping and positive health out-
comes among families in health-care settings.
Informed by relational theory, the research
of Kayser and Sormanti (2002a) suggests that
women’s psychosocial response to cancer is
likely to be infl uenced by close connections
with others and that these connections are in-
terwoven with women’s sense of identity. In
addition, their research suggests that experi-
encing cancer may infl uence identity by affect-
ing the ways in which women who are mothers
alter their priorities (Kayser & Sormanti,
2002b). For example, women in this study de-
scribed: enjoying their families and their lives
with greater intensity; learning about their
identities apart from their functions as work-
ers, partners, and mothers; fi nding deep per-
sonal strength and self-effi cacy; experiencing
greater empathy and authenticity in their rela-
tionships; and examining the balance between
caring for self and others.
Interventions to help people experiencing
changes in their sense of identity and to support
their social relationships as they face illness are
important aspects of the social worker’s role
in health-care settings. Such interventions are
likely to have important implications for posi-
tive health outcomes. In fact, social isolation
is said to increase the risk of mortality by 2 to
5 times compared with the presence of rela-
tionships with family, friends, and community
(McGinnis et al., 2002). Given that a number
of mental health conditions may contribute to
social withdrawal and social isolation (Ameri-
can Psychiatric Association, 2000), individuals
experiencing concurrent physical and mental
health conditions may be a particularly vulner-
able group. As part of a comprehensive assess-
ment, social workers should explore clients’
social support, including attention to compo-
sition and size of the person’s social network,
types of social support available, positive and
negative components of available support, and
strengths and obstacles to engaging with others
and sharing support.
Microsystems
Bearing in mind the complex intersections
between the multiple systems in the ecologi-
cal framework, this discussion now turns to
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176 Health Social Work Practice: A Spectrum of Critical Considerations
microsystems of physical and mental health.
Given the high prevalence of depression and
anxiety disorders across all age groups and
their increased prevalence among people ex-
periencing chronic illnesses, they will be the
primary focus of this discussion of assessment
and intervention. It should be noted that al-
though this discussion focuses on depression
and anxiety disorders as discrete conditions,
they frequently co-occur with each other and
with other psychiatric and substance use disor-
ders. There is growing recognition of these con-
current conditions, the challenges associated
with them, and the importance of integrated
treatment to assist people experiencing them
(American Academy of Child and Adolescent
Psychiatry [AACAP], 2010; Campbell et al.,
2007; Center for Substance Abuse Treatment
[CSAT], 2005, 2009; Engstrom, El-Bassel,
Go, & Gilbert, 2008; Engstrom, Shibusawa,
El-Bassel, & Gilbert, 2011; National Institute
of Mental Health [NIMH], 2008). Implica-
tions for assessment and intervention with
children experiencing co-occurring conduct
disorder and health conditions are discussed
in Box 8.1. Further information that focuses
entirely on children and older adults can be
found in Chapters 15 and 16 of this book.
Box 8.1 Intersections Between Disruptive
Disorders and Health Conditions:
Assisting Parents and Children
Each year approximately 1 out of 10 children
is likely to experience a disruptive disorder,
such as attention-defi cit/hyperactivity disorder,
conduct disorder, or oppositional defi ant
disorder (DHHS, 1999; Shaffer et al., 1996).
The symptoms associated with disruptive
disorders, including signifi cant diffi culties
following directions, limited tolerance for
frustration, impulsive behavior, and opposition
to authority fi gures, pose particular challenges
for children who are experiencing co-occurring
health conditions. In addition, children’s ability
to benefi t from health-care services may be
limited by their diffi culties following through
with adult requests to adhere to medical
recommendations (e.g., diet, medicine, other
treatment) and to avoid behaviors that worsen
illness or interfere with treatment (e.g., engaging
in restricted activities, removing bandages,
moving around during exams or treatment)
(Bagner et al., 2004; Matthews, Spieth, &
Christophersen, 1995). Although the study
presented here focuses on a child experiencing
a disruptive disorder and bladder cancer, it
likely has relevance for those experiencing other
conditions commonly seen among children in
health-care settings, including asthma, diabetes,
and epilepsy.
Based on a case study of a 4-year-
old boy, “Robert Smith,” experiencing
oppositional defi ant disorder and bladder
cancer, Bagner and colleagues (2004)
suggest that parent–child interaction therapy
(PCIT) holds promise as an effective
intervention to address co-occurring
disruptive behavior and persistent physical
illness. On referral for psychological
services, Robert was screaming, yelling, and
hitting during medical visits. His behavioral
diffi culties were exacerbated when he began
chemotherapy. In one instance, he swung the
bag fi lled with his chemotherapy over his
head, resulting in its spilling on his mother
and one of the nurses.
The two phases of PCIT include an
initial focus on child-directed interaction
(CDI) that aims to enhance the relationship
between the parent and child, the degree of
positive parental communication with the
child, and the child’s social skills through
play therapy. In the CDI phase, parents are
guided to use nondirective skills outlined
by the acronym PRIDE: praise for the
child, refl ection of the child’s statements,
imitation of the child’s play, description
of the child’s behavior, and enthusiasm
in the play (Bagner et al., 2004, p. 3).
Parents are coached during this phase
to employ PRIDE skills while ignoring
negative behaviors and avoiding criticism,
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Physical and Mental Health: Interactions, Assessment, and Interventions 177
questions, and commands directed toward
the child. The second phase focuses on
parent-directed interaction. Similar to
behavioral intervention, this phase aims to
enhance parenting skills in these domains:
expectations of their children, limit-setting
ability, and consistent discipline.
After 12 sessions of PCIT, Robert
displayed numerous clinically signifi cant
improvements in his behavior as measured by
the Child Behavior Checklist and the Eyberg
Child Behavior Inventory, and his behavior
was no longer consistent with a diagnosis
of oppositional defi ant disorder. Robert’s
behavioral gains transferred to medical visits,
as noted by his physician and social worker,
who described increased adherence and an
absence of aggression in his behavior. In
addition, Ms. Smith experienced clinically
signifi cant reduction in her parenting stress.
Although this case example presents
but one illustration of the effectiveness of
PCIT with a child experiencing co-occurring
oppositional defi ant disorder and a serious
health condition, its effi cacy with several other
populations of children experiencing disruptive
behaviors and disorders (Brestan & Eyberg,
1998; Eisenstadt, Eyberg, McNeil, Newcomb,
& Funderburk, 1993; Hood & Eyberg, 2003;
McNeil, Eyberg, Eisenstadt, Newcomb, &
Funderburk, 1991; Nixon, Sweeney, Erickson,
& Touyz, 2003; Schuhmann, Foote, Eyberg,
Boggs, & Algina, 1998) further suggests that
PCIT may be useful for clinicians, parents, and
children to address such co-occurring health
issues.
Prevalence
According to the Surgeon General’s Report
on Mental Health, each year approximately
1 in 5 people of all ages is likely to experi-
ence psychiatric symptoms that meet crite-
ria for a diagnosable mental health condition
(DHHS, 1999). Anxiety disorders, which
can include posttraumatic stress disorder,
simple phobia, social phobia, agoraphobia,
generalized anxiety disorder, panic disorder,
and obsessive-compulsive disorder, have the
highest annual prevalence among children
(ages 9–17 years, 13%), adults (ages 18–54
years, 16.4%), and older adults (over age 55
years, 11.4%) (DHHS, 1999). Among chil-
dren, disruptive disorders follow in annual
prevalence, with an estimated 10.3% of
children meeting diagnostic criteria and ex-
periencing mild global impairment (DHHS,
1999). Annual prevalence of mood disor-
ders, which can include major depressive
episode, unipolar major depression, dysthy-
mia, and bipolar disorder, is estimated to be
6.2% among children, 7.1% among adults,
and 4.4% among older adults (DHHS,
1999). Psychiatric and substance use disor-
ders often are described and classifi ed based
on the diagnostic criteria of the Diagnostic
and Statistical Manual of Mental Disorders,
Fourth Edition, Text Revision (DSM-IV-TR)
(American Psychiatric Association, 2000),
as described in Box 8.2.
Among people with serious and persistent
illnesses, prevalence rates of mental health
conditions that meet DSM-IV-TR diagnos-
tic criteria are likely to be elevated (Aben
et al., 2003; American Psychiatric Associa-
tion, 2000; Bing et al., 2001). For example,
among a large, representative sample of
adults engaged in HIV-related medical care,
prevalence of psychiatric disorders was
47.9%, which is higher than twice the preva-
lence among community participants (Bing
et al., 2001; DHHS, 1999). Among people
living with HIV, major depression and dys-
thymia were the most common conditions,
and 21% experienced both conditions; gen-
eralized anxiety disorders and panic attacks
followed in prevalence (Bing et al., 2001).
Prevalence estimates of depressive symp-
toms and major depression among people
experiencing cancer vary considerably—
between 1% and 42% (Patrick et al., 2003).
Prevalence estimates of anxiety disorders
also encompass a broad range, 10% to 30%,
based on large-scale research that employed
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178 Health Social Work Practice: A Spectrum of Critical Considerations
Box 8.2 DSM and Multiaxial Assessment
A commonly used method for describing
and classifying the types of mental health
symptoms a person is experiencing, along
with additional information regarding other
health conditions, environmental stressors,
and their overall functioning, is the multiaxial
assessment contained in the Diagnostic and
Statistical Manual of Mental Disorders,
Fourth Edition, Text Revision (DSM-IV-TR)
(American Psychiatric Association, 2000).
Although there are numerous critiques of
the DSM-IV-TR (Kirk & Kutchins, 1992;
Mechanic, 1999; Saleebey, 2002; Wakefi eld,
1999), its wide usage as a classifi cation
and communication system in physical and
mental health settings supports developing
familiarity with it (Kerson, 2002; Williams,
1998). Components of the DSM-IV multiaxial
assessment tool are introduced here. More
detailed information and the most recent text
revisions of the DSM-IV can be found in the
DSM-IV-TR. A comprehensive revision of the
DSM currently is under way. The Diagnostic
and Statistical Manual of Mental Disorders:
Fifth Edition (DSM-5) is expected to be
published in May 2013.
The DSM-IV multiaxial assessment
(American Psychiatric Association, 1994,
2000) generally focuses on describing and
communicating the problems people are
experiencing; however, social workers have
a commitment to recognize and to build
on people’s strengths (Saleebey, 2002). In
multiaxial assessment, it is important to be
attuned to, to recognize, and to formulate
interventions that build on clients’ strengths.
No matter how dire a situation may be,
people have strengths that have fueled
their perseverance and survival to the point
at which they come into contact with the
social worker. Actively refl ecting on and
engaging people’s strengths, which may
include their knowledge, capacities, and
resources, are arguably central components
of clients “achieving their goals and visions
and . . . [having] a better quality of life on
their terms” (Saleebey, 2002, pp. 1–2).
Developing a specifi c notation regarding
client strengths may provide a useful tool for
active consideration of and engagement with
clients’ strengths as part of the multiaxial
assessment.
According to the DSM-IV-TR, multiaxial
assessment includes these domains:
• Axis I—Clinical Disorders Other
Disorders That May Be a Focus of
Clinical Attention
• Axis II—Personality Disorders, Mental
Retardation
• Axis III—General Medical Conditions
• Axis IV—Psychosocial and Environmental
Problems
• Axis V—Global Assessment of
Functioning (American Psychiatric
Association, 1994, p. 25; American
Psychiatric Association, 2000, p. 27)
This discussion of the differential assessment
of physical and mental health focuses
primarily on Axis I, Clinical Disorders,
such as major depressive episode or
generalized anxiety disorder; Axis III,
General Medical Conditions, such as
cardiovascular disease or HIV; and Axis
IV, Psychosocial and Environmental
Problems, such as homelessness, long-
standing poverty, or recent loss. Because
social workers have specialized training in
addressing the interactions between people
and their environments, they are likely to
have particular ability to address issues
related to Axis IV; however, it is worth noting
that in addition to this expertise, estimates
suggest that there are more social workers
in the psychotherapy workforce (192,814)
than psychologists (73,018), psychiatrists
(33,486), and psychiatric nurses (15,330)
combined (Center for Mental Health
Services, 2001; Insel, 2004). As described
throughout this chapter, social workers’
attention to the interface between the person
and environment is an important aspect of
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Physical and Mental Health: Interactions, Assessment, and Interventions 179
standardized interviews and diagnostic cri-
teria (Stark et al., 2002). Methodological
limitations likely contribute to these wide
ranges; however, the National Institutes of
Health’s State-of-the-Science Panel (Patrick
et al., 2003) states that “the most common
symptoms of cancer and treatments for
cancer are pain, depression, and fatigue”
(p. 110). Among people experiencing stroke
or myocardial infarction, new cases of de-
pression were identifi ed in 38.7% and 28.4%
of a group of people receiving care in the
Netherlands; when adjusted for age, sex, and
degree of disability, the rates of depression
were comparable (Aben et al., 2003).
It is also important to consider trauma
in the context of health and comprehensive
assessment. Lifetime exposure to trauma—
including exposure to seeing someone being
seriously injured or killed; a fi re, fl ood, or nat-
ural disaster; a life-threatening accident; com-
bat; physical attacks; and sexual assaults—is
estimated to occur among 61% of men and
51% of women in the United States (Kessler,
Sonnega, Bromet, Hughes, & Nelson, 1995);
however, in the current context of post-9/11
experiences, a global war on terror, and home-
land security alerts within the United States,
perceived risk or threat to one’s safety and
related psychological sequelae may be more
both differential assessment and intervention
in mental and physical health; however,
the ability to understand and to intervene to
address these complex co-occurring issues
also requires substantive background and
training in additional psychotherapeutic
interventions, some of which are discussed in
the “Psychosocial Intervention Strategies in
Health-Care Settings” section of this chapter.
Axis II identifi es personality disorders
and mental retardation. There are 10 specifi c
personality disorders: paranoid personality
disorder, schizoid personality disorder,
schizotypal personality disorder, antisocial
personality disorder, borderline personality
disorder, histrionic personality disorder,
narcissistic personality disorder, avoidant
personality disorder, dependent personality
disorder, and obsessive-compulsive
personality disorder. Personality disorders
that do not meet diagnostic criteria for any
of the 10 types identifi ed are categorized as
personality disorder not otherwise specifi ed
(NOS). People with a personality disorder
generally experience “an enduring pattern
of inner experience and behavior that
deviates markedly from the expectations
of the individual’s culture, is pervasive and
infl exible, has an onset in adolescence or
early adulthood, is stable over time, and
leads to distress or impairment” (American
Psychiatric Association, 2000, p. 685).
As with the clinical disorders recorded on
Axis I, the DSM-IV-TR includes specifi c
diagnostic criteria for each of the personality
disorders.
Axis V includes the Global Assessment
of Functioning (GAF) scale, which refl ects
the clinician’s assessment of the client’s
overall functioning in psychological, social,
and occupational domains. The GAF does
not consider the infl uence of physical and
environmental conditions. The GAF is a
constructed continuum in which functioning
associated with mental health is ranked on
a scale of 1 to 100 (a ranking of 0 indicates
inadequate information). A GAF rating of
10 is associated with “persistent danger of
severely hurting self or others”; a GAF rating
of 50 is associated with “serious symptoms
(e.g., suicidal ideation, severe obsessional
rituals, frequent shoplifting) or any serious
impairment in social, occupational, or
school functioning (e.g., no friends, unable
to keep a job)”; and a GAF rating of 91
is associated with “superior functioning
in a wide range of activities” (American
Psychiatric Association, 2000, p. 34).
Detailed information and guidance regarding
how to formulate a GAF rating can be found
in the DSM-IV-TR (American Psychiatric
Association, 2000).
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180 Health Social Work Practice: A Spectrum of Critical Considerations
prevalent than earlier estimates (Susser,
Herman, & Aaron, 2002). Estimates from
1995 suggest that approximately 5.0% of men
and 10.4% of women ages 18 to 54 years ex-
perience psychological effects of trauma that
meet the diagnostic criteria for posttraumatic
stress disorder (PTSD), a type of anxiety dis-
order, in their lifetime (American Psychiatric
Association, 2000; Kessler et al., 1995).
In the context of U.S. involvement in cur-
rent military confl icts, the risk of PTSD and
other mental health concerns among military
members and veterans is particularly salient.
Recent estimates indicate that among veter-
ans who served in Operation Iraqi Freedom
or Operation Enduring Freedom and sought
services at the Veterans Administration (VA),
25% met diagnostic criteria for a mental health
condition. In addition, 13% of men and 11%
of women in the study met diagnostic criteria
for PTSD. Veterans younger than 40 years, es-
pecially those ages 18 to 25 years, are more
likely to experience PTSD and other mental
health conditions when compared with those
older than 40 years (Seal, Bertenthal, Miner,
Sen, & Marmar, 2007).
In addition to risks associated with their
military service, female veterans’ experi-
ences may be complicated by exposure to
sexual harassment and assault within the
military. Among a nationally representative
sample of 3,632 female veterans seeking
care at the VA, an estimated 55% experienced
sexual harassment and 23% experienced
sexual assault in the military (Skinner et al.,
2000). These experiences are associated with
increased risk for PTSD, problematic sub-
stance use, other mental health concerns,
health problems, and employment diffi culties
(Skinner et al., 2000; Surís, Lind, Kashner,
Borman, & Petty, 2004).
Despite the signifi cant mental health needs
of many veterans, active military members,
and their families, stigma, concerns regard-
ing professional ramifi cations, and inadequate
funding limit the availability and use of mental
health services (Department of Defense Task
Force on Mental Health, 2007; Hoge et al.,
2004; DHHS, 2001a). A recent report by the
Department of Defense Task Force on Men-
tal Health calls for strategies to strengthen re-
silience, to reach military members and their
families across a continuum of care, and to
reduce stigma by ensuring that mental health
care is an integrated component of military ser-
vice. Give an Hour, an organization committed
to linking current military personnel and their
families with free mental health services, is
a resource that addresses some of these calls
to action (www.giveanhour.org). Additional
information regarding assessing and respond-
ing to veterans’ and family members’ mental
health needs can be found online through the
National Center for PTSD (www.ptsd.va.gov
/index.asp).
The connections between trauma and health
are numerous.
1. Preexisting trauma exposure and its
psychological sequelae are likely to interact
with experiences of physical illness.
2. People may be seeking medical care as a
direct result of a traumatic experience, such
as a motor vehicle accident, sexual assault,
or other physical attack.
3. Consistent with the traumatic events
identifi ed in the DSM-IV-TR as potential
precipitants of PTSD (American
Psychiatric Association, 2000), Mundy
and Baum (2004) underscore the utility
of broadening the defi nition of trauma
to include some medical conditions such
as myocardial infarctions, which may
be considered traumatic events because
they represent a serious threat to a person’s
life.
4. Research regarding PTSD and health-
care usage suggests signifi cantly elevated
rates of medically related hospitalization,
visits to the emergency department, and
visits to a medical provider among people
experiencing PTSD (Stein, McQuaid,
Pedrelli, Lenox, & McCahill, 2000).
Given the high prevalence of exposure to trau-
matic events, their powerful intersection with
individual health and medical care, and the
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http://www.giveanhour.org
http://www.ptsd.va.gov/index.asp
http://www.ptsd.va.gov/index.asp
Physical and Mental Health: Interactions, Assessment, and Interventions 181
potential for people to experience clinically
signifi cant symptoms of posttraumatic stress,
even if they do not meet DSM-IV-TR diagnos-
tic criteria for PTSD (American Psychiatric
Association, 2000), this chapter includes dis-
cussion of posttraumatic stress in health-care
settings.
Detection
Several factors contribute the importance of
routine mental health screening in health-care
settings:
• The high prevalence of depression and anx-
iety in the general population and among
people with serious and persistent physical
illnesses
• The signifi cant number of people, particu-
larly people from racial and ethnic minority
backgrounds, who seek mental health-care
solely through primary care services
• The high prevalence (30%–50%) of people
experiencing psychiatric disorders who go
undetected in usual primary care
• The potential negative impact of psychiat-
ric disorders on health outcomes (DHHS,
2001a; Lecrubier, 2004; Pignone et al.,
2002; Regier et al., 1993)
Depression and anxiety can be expressed
in health-care settings in a variety of ways.
For example, a father may comment to a so-
cial worker or other health-care provider that
his teenage son “does not seem to be him-
self.” The father might say that his son has
been short-tempered lately, is sleeping more
than usual, has experienced a decline in his
grades, and has lost interest in social activi-
ties that formerly interested him. The father
has attempted to offer him incentives to im-
prove his academic performance and to en-
courage him to spend time with friends to no
avail. Another individual may describe feeling
fatigued, having sore muscles, and experienc-
ing diffi culty falling asleep but attribute these
symptoms to recent stress at work. As part of
conducting a comprehensive assessment, the
social worker would recognize that depression
among children and adolescents may present
as irritability (American Psychiatric Associa-
tion, 2000), and that symptoms of anxiety that
are attributed to normalized conditions, such
as stress at work, may not be detected ac-
curately (Culpeper, 2003; Kessler, Lloyd, &
Lewis, 1999). Equipped with the knowledge
that detection of mood and anxiety disorders
requires the consideration of atypical presen-
tation of symptoms or behaviors, the social
worker would understand that further assess-
ment would be warranted for both individuals.
In health-care settings, depression and
anxiety also may be expressed through fre-
quent medical visits (more than fi ve per year)
and through physical changes, such as weight
gain or loss or sleeping problems (Institute for
Clinical Systems Improvement, 2002). Anxi-
ety in particular may be expressed through
medically unexplained physical symptoms,
such as chest pain, gastrointestinal problems,
headache, or dizziness (Culpeper, 2003; Insti-
tute for Clinical Systems Improvement, 2002).
Physical concerns, rather than explicit con-
cerns about anxiety, are expressed frequently
by people experiencing panic disorders (Insti-
tute for Clinical Systems Improvement, 2002).
Although it is important not to invalidate an
individual’s physical symptoms, recognizing
that such symptoms may have a relationship
with mental health concerns and, as discussed,
may refl ect culturally informed somatization
of distress can provide avenues to appropri-
ate intervention and relief. However, some
medical conditions, including coronary in-
suffi ciency, chronic obstructive pulmonary
disease, pancreatic tumor, hypoparathyroid-
ism, pheochromocytoma, pulmonary emboli,
certain cases of coronary artery disease, and
certain epilepsies, may be eclipsed by symp-
toms of anxiety and would warrant assess-
ment by a physician. Culpeper suggests that
if a person older than 35 years previously in
good health does not have a history of prior
anxiety symptoms, and describes new onset of
anxiety, evaluation for possible medical condi-
tions should be pursued. Such medical evalua-
tion also would be indicated (a) when a client
presents with symptoms of anxiety without a
personal or family history of anxiety; (b) in
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182 Health Social Work Practice: A Spectrum of Critical Considerations
the absence of a stressful life event; and po-
tentially (c) when a client describes a high
level of concern about the feelings of anxiety,
which may suggest the presence of a physical
condition rather than a mental health condi-
tion. Social workers are well situated to refer
clients for appropriate physical care and to
further explore mental health issues that may
manifest as physical symptoms. In addition to
asking open-ended questions about the client’s
mood, coping strategies, and daily function-
ing, screening instruments and a formal mental
status exam are two structured ways in which
social workers can explore mental health in
health-care settings.
Screening Instruments
Screening instruments, which identify men-
tal health symptoms warranting additional
assessment, may facilitate the detection of
mood, anxiety, and trauma-related disorders in
health-care settings. Such instruments can in-
clude standardized scales with numerous items
or just a few questions. They often are used in
health-care settings in which certain psychoso-
cial responses are seen frequently and in which
their early detection is thought important for
the achievement of optimal outcomes of care.
According to the U.S. Preventive Services
Task Force (USPSTF; 2009), these screening
questions may identify the majority of adults
experiencing depression with effectiveness
that is comparable to detailed instruments
(p. 760):
• Over the last two weeks, have you felt
down, depressed, or hopeless?
• Have you felt little interest or pleasure in
doing things?
Positive responses to these questions suggest
that additional assessment of depression and
concurrent concerns (e.g., substance use prob-
lems, other psychological distress) should be
conducted to inform appropriate intervention
(USPSTF, 2009).
Screening for specifi c anxiety disorders may
be facilitated by the next questions proposed
by Levinson and Engel (1997). Each question
aims to screen for a particular anxiety disorder.
A positive response to any of these questions
warrants further assessment of anxiety and of
its impact on the individual’s daily life (Insti-
tute for Clinical Systems Improvement, 2002,
pp. 2–3).
• Would you describe yourself as a nervous
person? Do you feel nervous or tense?
(Generalized Anxiety Disorder)
• Have you ever had a sudden attack of rapid
heartbeat or rush of intense fear, anxiety, or
nervousness? (Panic Disorder)
• Have you ever avoided important activities
because you were afraid you would have a
sudden attack like the one I just asked you
about? (Agoraphobia)
• Some people have strong fears of being
watched or evaluated by others. For example,
some people do not want to eat, speak, or
write in front of people because they fear em-
barrassing themselves. Is anything like this a
problem for you? (Social Phobia)
• Some people have strong fears, or phobias,
about heights, fl ying, bugs, or snakes. Do
you have any phobias? (specifi c phobia)
• Some people are bothered by intrusive, silly,
unpleasant, or horrible thoughts that keep
repeating over and over. For example, some
people have repeated thoughts of hurting
someone they love even though they don’t
want to; that a loved one has been seriously
hurt; that they will yell obscenities in pub-
lic; or that they are contaminated by germs.
Has anything like this troubled you? (Ob-
session)
• Some people are bothered by doing some-
thing over and over. They can’t resist the
urge, even when they try. They might wash
their hands every few minutes or repeatedly
check to see that the stove is off or the door
is locked or count things excessively. Has
anything like this been a problem for you?
(Compulsion)
• Have you ever seen or experienced a trau-
matic event when you thought your life
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Physical and Mental Health: Interactions, Assessment, and Interventions 183
was in danger? Have you ever seen some-
one else in grave danger? What happened?
(Acute Stress and Posttraumatic Stress Dis-
orders).
PTSD is associated with several health
conditions, including hypertension, athero-
sclerotic heart disease, chronic pain, and vul-
nerability to infections; frequently involves
increased health-care utilization; and often
goes undetected. The National Center for
PTSD (2010) suggests taking steps to identify
and assist people experiencing PTSD. Detec-
tion of this “hidden diagnosis,” as described
by Lecrubier (2004), can be facilitated with a
four-item screening instrument, the Primary
Care PSTD Screen (Prins et al., 2004). The
yes-no, self-reported screening questions can
be completed via paper and pencil by the client
and are (www.ptsd.va.gov/professional/pages/
assessments/pc-ptsd.asp):
In your life, have you ever had any experi-
ence that was so frightening, horrible, or up-
setting that, in the past month, you
1. Have had nightmares about it or thought
about it when you did not want to?
2. Tried hard not to think about it or went
out of your way to avoid situations that
reminded you of it?
3. Were you constantly on guard, watchful,
or easily startled?
4. Felt numb or detached from others, activi-
ties, or your surroundings?
In primary care settings, positive responses to
two of these screening questions would war-
rant further assessment for PTSD (Prins et al.,
2004). The National Center for PTSD pro-
vides detailed information regarding proceed-
ing with further assessment and intervention
(www.ptsd.va.gov/index.asp).
Substance misuse is a serious health con-
cern that often co-occurs with mental health
problems (CSAT, 2005) and complicates other
health issues. Chapter 17 provides detailed
discussion of screening, assessment, and
interventions with which to assist people ex-
periencing substance use problems.
Formal Mental Status Exam
The mental status exam is a systematic, sem-
istructured method for gathering informa-
tion about and describing a person’s mental
health status at the current time. It includes
observation and inquiry to assess a person’s
mental status and frequently involves a writ-
ten summary of the examination. Unlike a
biopsychosocial assessment, the mental sta-
tus exam does not explore comprehensive
elements of the person in her environment
and her history but focuses primarily on her
mental status at the present time. In addi-
tion, the mental status exam involves not
only eliciting the client’s perspective but
also actively drawing on and incorporating
the social worker’s observations (Lukas,
1993). Finally, although it is not a diagnos-
tic tool, the mental status exam may alert
the social worker to mental health problems
that warrant further assessment (Trzepacz &
Baker, 1993).
The mental status exam addresses these
domains: appearance, attitude, and activity
(sometimes simply referred to as appearance
and behavior); mood and affect; speech and
language; thought processes, thought con-
tent, and perception; cognition; and insight
and judgment (Trzepacz & Baker, 1993). A
mental status exam may be conducted as a
discrete assessment or as part of a clinical in-
terview. For example, when a social worker
begins talking with an older adult client, the
client may describe recent diffi culties with
remembering to take his medication and a
recent event in which he forgot where he
parked his car at the grocery store and wan-
dered around the parking lot for an hour. His
description would be a cue to pursue explo-
ration of his cognitive capacities and of his
memory, in particular. Especially when a
client introduces an area that is worthy of
further exploration through a mental status
exam, it can be useful to follow up empa-
thetically with the client, explain the nature
of the questions you will ask, and proceed
with the exam. This sort of follow-up con-
veys both attentiveness to the client and your
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http://www.ptsd.va.gov/professional/pages/assessments/pc-ptsd.asp):
http://www.ptsd.va.gov/professional/pages/assessments/pc-ptsd.asp):
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184 Health Social Work Practice: A Spectrum of Critical Considerations
professional capacity to further assess and
intervene appropriately (Shea, 1988).
Appearance, Attitude, and Activity. The
mental status exam typically begins with the
social worker’s observations of the client’s ap-
pearance, attitude, and activity (Lukas, 1993;
Trzepacz & Baker, 1993). This part of the
mental status exam includes attention to these
considerations:
• Client’s degree of consciousness (Is the
person alert? Does she respond to stimuli?)
• Congruence between the client’s age and
appearance (Does she appear to be her
“stated age”? Does she seem older or
younger?)
• Client’s posture and position (Does the cli-
ent’s posture appear rigid or relaxed? Is the
client in a hospital bed? Is the client able to
sit down during the interview?)
• Client’s attire and personal hygiene (Is the
client dressed appropriately for the season?
Are there any signifi cant observations re-
garding the client’s personal hygiene?)
• Notable physical characteristics, in addition
to race, ethnicity, and gender
• Client’s attitude toward the social worker
and toward the interview (How does the
client respond to you? Are there changes in
this response during your meeting?)
• Signifi cant movement or paralysis (Does
the client have diffi culty sitting still? Does
the client seem to move quickly or slowly?
Does the client appear to have any tremors
or involuntary movements?)
Mood and Affect. Consideration of the cli-
ent’s mood and affect generally follows these
observations in the mental status exam. Mood
commonly refers to the client’s subjective re-
port of his emotional state in general or in
the present moment, and affect commonly
refers to the social worker’s observations of
the ways in which the client demonstrates his
emotional state during the clinical interview
(Lukas, 1993). Exploration of the client’s
mood can begin with open-ended questions,
such as “How have you been feeling lately?”
or “How do you feel right now?” (Trzepacz
& Baker, 1993, p. 40). Asking the client to
describe his mood over the previous 30 days
can follow these beginning questions and
can add additional specifi c information. It
is important to listen closely to the client’s
descriptions; follow up with questions that
elicit greater detail and specifi city regarding
his mood, especially its intensity and the de-
gree to which it refl ects his usual mood; and,
whenever possible, include direct phrases
from the client in a mental status exam sum-
mary. The next hypothetical interaction illus-
trates such follow-up.
Social worker: Can you tell me about
how you’ve been feeling lately?
Client: I’ve been very nervous.
Social worker: In what ways have you
been feeling nervous?
Client: I feel sick to my stomach. I can’t
eat. I feel very restless and uneasy. I’m
tired, but I can’t sleep. I sleep a short
time and then I’m up again. I can barely
focus at work.
Social worker: Is feeling this way new for
you, or have you been feeling this way
for a while?
Client: Sometimes I worry, but it wasn’t
like this until I got sick. Waiting for all
of the test results is very stressful, and
it’s got me very worried.
Social worker: How intense are the
feelings that you’re having?
Client: Like I said, I worry now and then,
but I’ve never felt anything like this.
Social worker: It seems like this worry
is pretty intense for you. If you were
to rank how you’re feeling right now
on a scale of 1 to 10, where 1 is the
best you’ve ever felt and 10 is the most
nervous you’ve ever felt, what would be
your ranking?
Client: I feel pretty far from the best I’ve
ever felt (laughs). I would probably say
that my nervousness feels like it’s about
an 8. It could go higher depending on
what the test results say.
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Physical and Mental Health: Interactions, Assessment, and Interventions 185
Social worker: It sounds like this
nervousness feels very intense and out
of the ordinary for you. It also sounds
like you feel it quite physically, in your
stomach, with your sleep, and in the
restlessness you describe; and it sounds
like it’s affecting your concentration at
work.
In this situation, in addition to the informa-
tion the client provided regarding his mood,
the social worker likely would observe that his
affect appeared congruent with his mood—he
appeared tense and nervous as he talked about
feeling worried. Through the injection of humor,
the client also may have displayed a range of
affect even while predominantly expressing
anxiety. Finally, the psychological distress the
client is experiencing would warrant additional
assessment to inform appropriate intervention.
Speech and Language. When observing
speech and language, social workers focus on
how information is being expressed and what
is being said. Of particular interest is the speed
with which a person speaks, any notable apha-
sia (diffi culty expressing and understanding
language, which may be evidenced by word-
fi nding problems and more severe inability to
express oneself), comprehension of language,
volume of speech, prolonged silences, effort in
speaking, poverty of speech, and any signifi –
cant speech-related impairment (Lukas, 1993;
Trzepacz & Baker, 1993). One way to assess
comprehension is to ask the client to complete
tasks that begin simply and increase in com-
plexity. For example, a person could be asked
to point to her eyes and then touch her left
hand to her right ear, as described by Trzepacz
and Baker (1993). These authors also offer a
more complex, three-stage request that could
involve asking a person to pick up a paper clip,
put it on the table, and cross her arms. Ask-
ing clients to name objects in the room or in
a complex picture is a way to assess aphasia.
The assessment of mental status, and of speech
and language in particular, should be informed
by an awareness of the client’s primary lan-
guage and should be conducted with linguis-
tic competence (Trzepacz & Baker, 1993). A
person whose primary language is Spanish
may display limited comprehension and dif-
fi culty naming objects; however, this may be
due to limited fl uency in English rather than
a mental health issue. Linguistic competence
is a central component of accurate assessment.
When a social worker’s language ability hin-
ders provision of linguistically competent ser-
vices, professional interpreters who are able
to facilitate communication and cultural un-
derstanding should be employed (Hepworth,
Rooney, & Larsen, 2002).
The information gathered regarding speech
and language can inform inferences regarding
mental health problems a person may be ex-
periencing. For example, a person experienc-
ing symptoms of depression may speak slowly
and quietly with long pauses in the rhythm of
speech. A person who recently has experienced
a stroke, severe head trauma, brain surgery, or
an infection may demonstrate diffi culty fi nd-
ing words but still may exhibit comprehension.
Alternatively, the person may demonstrate
loss of the ability to understand or express
language. In addition, with the range of dif-
fi culties associated with aphasia, individuals
may have variable awareness of their language
diffi culties. When individuals evidence apha-
sia, collaboration with the transdisciplinary
health-care team is a key element of ongoing
assessment and intervention. Finally, when in-
dividuals are experiencing aphasia related to
Alzheimer’s and other progressive dementias,
they likely will demonstrate gradual deterio-
ration in language ability (Trzepacz & Baker,
1993). Routine assessment of mental status
among older adults provides a way to moni-
tor changes in mental status over time and to
engage in early intervention (Rabins, 1991);
however, it should be noted that based on cur-
rently available evidence, the United States
Preventive Services Task Force (2009) neither
endorses nor discourages routine screening for
dementia among older adults. The Task Force
does support assessment of cognitive function-
ing among older adults who display cognitive
impairment or deterioration.
Thought Processes, Thought Content, and
Perception. When assessing thought processes,
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186 Health Social Work Practice: A Spectrum of Critical Considerations
content, and perception, social workers are
focusing primarily on “how a person thinks
and . . . what a person thinks about” (Lukas,
1993, p. 20) as well as any perceptual diffi culties
(e.g., hearing ability, eyesight, hallucinations, il-
lusions) the person is experiencing (Lukas, 1993;
Trzepacz & Baker, 1993). Thought processes
are assessed by attending to the “organization,
fl ow, and production of thought” (Trzepacz
& Baker, 1993, p. 84). Specifi cally, the social
worker attends to the degree of tangentiality, cir-
cumstantiality, fl ight of ideas, and looseness of
associations in the person’s verbal expressions.
The primary areas of interest regarding thought
content include obsessions, compulsions, para-
noia, delusions, violent ideation, and poverty of
content (Lukas, 1993; Trzepacz & Baker, 1993).
Given the increased suicide risk among people
with chronic or terminal illnesses (Trzepacz &
Baker, 1993), an entire section of this chapter
is dedicated to suicide assessment and interven-
tion. In terms of risk of injury to another per-
son through homicide, abuse, or neglect, social
workers should familiarize themselves with their
organization’s protocols for assisting such an in-
dividual and preventing harm to another person.
In addition, social workers should familiarize
themselves with state laws regarding their man-
dates to warn third parties in the event of risk
of imminent harm to an identifi ed person and to
report suspected abuse or neglect of children or
elders (Lukas, 1993; Trzepacz & Baker, 1993).
If a social worker has reason to believe that a
person may be at risk of harming another per-
son, it is important to consult a supervisor and to
formulate a plan to help the identifi ed potential
victim remain safe.
Cognition. Assessment of cognition focuses
on orientation, perceived level of intelligence,
concentration, memory, and abstract thinking
(Lukas, 1993; Trzepacz & Baker, 1993). A
phrase frequently used in mental status exams
is “the person is oriented x 3.” This statement
indicates that a person is oriented to person
(i.e., who he is; immediate family members),
place (i.e., where he is, both specifi c setting and
city and state), and time (i.e., time, day, date,
and season) (Trzepacz & Baker, 1993). An ad-
ditional dimension can include orientation to
activity (i.e., what he is currently doing). For
the mental status exam, perceived level of in-
telligence is based on the social worker’s as-
sessment of the client’s apparent intelligence,
described as above average, average, or below
average (Lukas, 1993). Concentration typically
is assessed by asking the person to engage in a
task, such as counting backward from 20, count-
ing down from 100 by 7s (this request is called
serial 7 subtractions), or spelling “WORLD”
backward. With these tasks, the person should
be encouraged to complete the task without the
use of paper, pencil, or other tools. Short-term
memory can be assessed by asking a person
to remember three words. This process begins
with telling the person the words, asking him to
repeat the words (which indicates that informa-
tion has been registered), and then asking him to
recall the words after fi ve minutes have passed
(Trzepacz & Baker, 1993). Long-term memory
can be assessed by inquiring about signifi cant
aspects in the person’s past, for example, the
city where he grew up or details of major life
events (Lukas, 1993; Trzepacz & Baker, 1993).
In addition to observing the degree of con-
crete and abstract thinking refl ected in the
client’s communication, asking him to inter-
pret a proverb can be another way to assess
abstract thinking. For example, an interpre-
tation of the phrase “The grass is greener on
the other side” that demonstrates abstraction
would be “Things that seem better elsewhere
are not necessarily so,” while a more concrete
interpretation would be “His lawn is greener
than mine” (Trzepacz & Baker, 1993, p. 144).
Numerous factors may infl uence the degree to
which a person interprets a proverb, including
age, cultural relevance, level of education, IQ,
psychosis, delirium, injury to the head, dam-
age to the frontal lobe, and dementia (Trzepacz
& Baker, 1993).
Insight and Judgment. The fi nal component
of the mental status exam, which attends to in-
sight and judgment, assesses a person’s aware-
ness of a problem and her ability to pursue
action with awareness of consequences (Lukas,
1993; Trzepacz & Baker, 1993). The mental
status exam enables a social worker to assess a
number of elements of a person’s mental status
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Physical and Mental Health: Interactions, Assessment, and Interventions 187
and can facilitate detection of mental health
problems that warrant further assessment.
After mental health issues are identifi ed, the
social worker proceeds with differential as-
sessment to guide appropriate interventions.
Differential Assessment: Depression
and Anxiety
Feelings of sadness and worry are part of the
human experience (American Psychiatric As-
sociation, 2000) and are likely to accompany
a number of physical illnesses, including can-
cer, HIV, stroke, diabetes, heart disease, and
Parkinson’s disease (NIMH, 2002a–f). Psy-
chological distress associated with physical
illness is likely to range from transient worry
and sadness to clinical mood and anxiety dis-
orders. This discussion focuses on differentiat-
ing feelings of sadness and worry from more
persistent mental health problems, including
those that meet DSM-IV-TR diagnostic crite-
ria (American Psychiatric Association, 2000)
for anxiety and mood disorders, to formulate
appropriate interventions to assist individuals
and their families. As described previously, in-
terventions may range from psychoeducation
and supportive counseling (to support positive
coping) to psychotherapy and psychopharma-
cology (to assist people who are experiencing
more persistent and severe mental health is-
sues) (DHHS, 1999; IOM, 2001).
People experiencing concurrent physical and
psychiatric conditions may be particularly vul-
nerable to social isolation, medication nonadher-
ence, and negative health outcomes (DiMatteo,
2004a; Frasure-Smith & Lesperance, 2003;
Ickovics et al., 2001; IOM, 2001). In addition,
people with psychiatric conditions have higher
rates of illness and mortality. For example,
in addition to high rates of suicide, people
with mood disorders experience high rates of
death due to cardiovascular and cerebrovas-
cular conditions, accidents, and intoxication.
Furthermore, treatment can reduce some of
these risks, including suicide, vascular con-
ditions, and cancer (Angst, Stassen, Clayton,
& Angst, 2002). It is important for social
workers to reach not only these vulnerable
groups but also people whose mental health
concerns do not meet DSM-IV-TR diagnostic
criteria (American Psychiatric Association,
2000). Subsyndromal psychological concerns
can involve signifi cant distress that warrants
assistance. Psychosocial interventions can
have powerful effects even when targeting a
population based on physical, rather than men-
tal, health conditions. For example, a meta-
analysis of 37 studies published between 1974
and 1997 suggests that psychoeducational
interventions focusing on stress management
and health education among people with coro-
nary disease are associated with reduced risk
of cardiac mortality and subsequent myocar-
dial infarction as well as improvements in di-
etary habits, smoking, exercise, cholesterol,
and blood pressure (Dusseldorp, van Elderen,
Maes, Meulman, & Kraaij, 1999). In addition,
research suggests that quality of life, social
support, and group therapeutic interventions
that focus on education, coping, support, and
stress management are associated with in-
creased cancer survival (Butow, Coates, &
Dunn, 1999; Fawzy et al., 1993; Fawzy, Fawzy,
Arndt, & Pasnau, 1995; Spiegel, Sephton, Terr,
& Stites, 1998). Attending to psychosocial el-
ements of overall health can extend and im-
prove life. Social workers often play a vital
role in this process.
Although understanding the unique situ-
ation of the individual in his ecological con-
text is at the core of assessment, appropriate
action also depends on accurate differentia-
tion of emotional reactions associated with
adjustment to various health conditions and
psychiatric disorders. Understanding the se-
verity, daily functioning impact, and duration
of psychiatric symptoms is critical to this pro-
cess (American Psychiatric Association, 2000;
J. W. Williams, Hitchcock, Cordes, Ramirez, &
Pignone, 2002). The following section provides
an overview of steps involved in differentiating
the etiology and scope of mental health symp-
toms so that appropriate interventions can be
formulated. The steps are based on the deci-
sion trees included in the DSM-IV-TR. These
decisions guide differential diagnosis and take
into consideration the possible contribution of
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188 Health Social Work Practice: A Spectrum of Critical Considerations
medical conditions or substances in the mental
health diffi culties a person is experiencing.
This discussion builds on the decision trees
of the DSM-IV-TR by also addressing the po-
tential contribution of ecological factors to a
person’s mental health diffi culties. It should
be noted that although etiological factors are
presented separately, it is possible for a per-
son to experience psychological distress due to
multiple causes (American Psychiatric Asso-
ciation, 2000). Such a situation would require
attention to each contributing factor.
Medical Conditions
When mental health symptoms have been de-
tected, the decision trees of the DSM-IV-TR can
provide helpful guidance regarding initial steps
in the differential assessment process. The fi rst
step is to determine whether or not the symp-
toms may be due to a general medical condition.
Many medical conditions have an underlying
association with depression or anxiety. For
example, Cushing disease or hypothyroidism
can cause symptoms of depression (American
Psychiatric Association, 2000; J. W. Williams
et al., 2002). Several physical illnesses may be
obscured by symptoms of anxiety (Culpeper,
2003). Because of the vast number of potential
health conditions people may experience, col-
laborating with the transdisciplinary health-care
team (e.g., nurses, physicians, and others with
specialized training) and obtaining condition-
specifi c information are necessary for making
this determination. If it is determined that the
mental health symptoms are due to an under-
lying medical condition, intervention should
fi rst address that condition, and mental health
symptoms should be reassessed following such
intervention. When physical conditions are as-
sociated with, rather than cause, psychological
distress (e.g., diabetes mellitus, coronary heart
disease, autoimmune disorders), intervention
should concurrently target both the physical
and psychological diffi culties the person is ex-
periencing (J. W. Williams et al., 2002).
Medications
If mental health symptoms do not appear to
be due to a medical condition, the next step
is to assess whether or not the symptoms are
due to ingesting or withdrawing from a sub-
stance, either a prescribed medication, a toxin,
alcohol, or other drugs (American Psychiatric
Association, 2000). Side effects of numerous
medications, including interferon alfa, ana-
bolic steroids, glucocorticoids, and reserpine
in high dosage, may involve psychological
distress (Strader, Wright, Thomas, Seeff, &
American Association for the Study of Liver
Diseases, 2004; J. W. Williams et al., 2002).
Comprehensive and differential assessment
requires that social workers ask about and fa-
miliarize themselves with the medications or
other substances clients are taking. Gathering
substance-specifi c information and collabo-
rating with the transdisciplinary health-care
team are key elements in understanding the
potential contribution of substances to psycho-
logical distress and in considering options for
intervention.
Substance Use
The use of alcohol and other drugs also may
infl uence mental health symptoms. Alcohol
use is widely prevalent, with an estimated
51.6% of people 12 years and older in the
United States reporting current use; 23.3% re-
port binge drinking at least once in the past
30 days (Offi ce of Applied Studies, 2009). The
highest rates of both heavy and binge drink-
ing are found among young adults aged 18–25
years, at 14.5% and 41.0%, respectively (Of-
fi ce of Applied Studies, 2009). Although the
effect of alcohol in small amounts can produce
feelings of confi dence and a positive mood, al-
cohol is a central nervous system depressant
that leads to slowed reaction, refl exes, and
muscular response. In addition, higher dosages
of alcohol lead to greater slowing of the cen-
tral nervous system, which typically results in
sleep followed by feelings of shakiness, head-
aches, depression, and diffi culty concentrating
upon waking (Weil & Rosen, 1993).
Cigarette smoking is also widely practiced.
More than 1 in 4 people 12 years and older in
the United States uses tobacco (Offi ce of Ap-
plied Studies, 2009). Tobacco is a plant whose
active ingredient, nicotine, is highly addictive
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Physical and Mental Health: Interactions, Assessment, and Interventions 189
and has signifi cant pharmacological effects on
the brain (Henningfi eld, 1998; Weil & Rosen,
1993). As a stimulant, nicotine may lead some
people to feel more energized and alert while
others may feel jittery and nervous. Stimu-
lants also may affect sleep and eating. Follow-
ing the use of stimulants, a person is likely to
feel sleepy, fatigued, and depressed (Weil &
Rosen, 1993). The National Institute on Drug
Abuse (NIDA, 2009) describes numerous psy-
chological effects associated with withdrawal
of nicotine (e.g. intense tobacco cravings, at-
tention diffi culties, irritability).
This discussion of the physiological effects
of alcohol and tobacco in relation to mental
health symptoms provides just two examples
of the numerous ways in which substance use
and mental health symptoms may intersect.
As part of a comprehensive assessment of a
person’s mental health symptoms, a social
worker should consider the potential infl uence
of substances on these symptoms. For ex-
ample, a person recently diagnosed with lung
cancer who has been a long-term smoker may
describe diffi culty concentrating. With further
exploration, you learn that he recently stopped
smoking. Although this recent discontinuation
of smoking is not likely to be the only factor
contributing to his psychological distress, it
would be an important consideration in a com-
prehensive assessment. Similarly, a person
seeking assistance with feelings of depression
may describe heavy alcohol consumption. As
alcohol is a central nervous system depressant,
its consumption may be contributing to her
feelings of depression.
This conceptualization of the relationship
between mental health and substance use sug-
gests a unidirectional, causal relationship in
which substance use predates and causes the
mental health symptoms a person is experi-
encing; however, this type of relationship is
but one of several ways in which substance
use and mental health symptoms may inter-
sect. For example, it is possible for a person
to experience mental health diffi culties that
predate her substance use, and the substance
use may not meet criteria for a diagnosis of
abuse or dependence (American Psychiatric
Association, 2000; Hien, Zimberg, Weisman,
First, & Ackerman, 1997). Alternatively, a per-
son may experience concurrent mental health
and substance use disorders that are inde-
pendent of each other and do not necessarily
share etiology; however, increased symptoms
of either disorder may intensify symptoms of
the other (Hien et al., 1997). For social work-
ers engaged in differential assessment, teasing
apart the relationship between mental health
and substance use issues involves obtaining a
comprehensive history of the person’s mental
health symptoms, substance use, and the re-
lationship between them. This comprehensive
history and assessment can facilitate provision
of or referral to appropriate services, depend-
ing on the social worker’s setting.
Conceptualizing co-occurring psychiatric
and substance use disorders in terms of severity
of each condition (e.g., more severe psychiat-
ric disorder, less severe substance use disor-
der) can assist with identifying the appropriate
treatment setting (CSAT, 2005). Detailed gen-
eral guidance for addressing substance use in
health-care settings can be found in Chapter
17. Additional information for assisting peo-
ple experiencing concurrent substance use and
psychiatric disorders can be found online in
the CSAT’s 2005 publication Substance Abuse
Treatment for Persons with Co-Occurring
Disorders.
Ecological Context
Although the DSM-IV-TR does not identify
ecological factors in its decision trees to inform
differential diagnosis of psychiatric disorders
(American Psychiatric Association, 2000),
the centrality of the person-in-environment
perspective in social work suggests that a
comprehensive assessment of factors contrib-
uting to a person’s mental health symptoms
should include explicit consideration of eco-
logical context. Inadequate housing, nutrition,
fi nancial resources, health insurance, access
to medical care, and social support are likely
to contribute to feelings of stress, sadness,
and worry as well as to negative health out-
comes. For example, research suggests that
adults who are homeless have greater risk for
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190 Health Social Work Practice: A Spectrum of Critical Considerations
mental illness, substance use disorders, physi-
cal illness, lack of health insurance, and death
than the U.S. general population (Barrow,
Herman, Cordova, & Streuning, 1999; Fischer
& Breakey, 1991; Hibbs et al., 1994; Hwang
et al., 1998; Kessler et al., 1994; Kushel,
Vittinghoff, & Hass, 2001; Regier et al., 1993).
Research involving children experiencing food
insecurity indicates that this experience is as-
sociated with numerous social, emotional, be-
havioral, and physical health problems. (For
a summary, see Wight, Thampi, & Briggs,
2010.) Furthermore, research involving moth-
ers receiving welfare suggests that increased
environmental and social risks (such as liv-
ing in an unsafe neighborhood, not having
enough food, experiencing domestic violence,
and stressful life experiences associated with
meeting basic needs) are associated with in-
creased risk of depression, and social support
and a sense of control over one’s life are as-
sociated with reductions in this risk (Siefert et
al., 2000). Some service providers and schol-
ars also have described unmet basic needs
and homelessness as sources of psychologi-
cal trauma (Engstrom, Gunn, Petersen, 2011;
Goodman, Saxe, & Harvey, 1991). The health
concerns associated with unmet basic needs
and ecological risks underscore the impor-
tance of strategies that help clients in these
areas. Attention to concrete needs and ecologi-
cal risks often is undervalued, but it is part of
social work’s “uncelebrated strength” (John-
son, 1999). Such attention can provide critical
pathways to improved quality of life, reduced
psychological distress, and improved physi-
cal health. If a comprehensive assessment
indicates that ecological factors are contrib-
uting to a person’s mental health diffi culties,
intervention should target them. Identifying
potential resources and services, discussing
them with the client, and facilitating referrals
are important aspects of addressing ecologi-
cal factors that may be fueling mental health
symptoms; these are important functions of
meeting the ethical responsibilities of so-
cial work (Johnson, 1991) and fulfi ll one of
social workers’ key roles: linking people to
resources (Hepworth et al., 2002).
After medical conditions, substance use,
and ecological factors are addressed as poten-
tial contributors to the client’s mental health
symptoms, the process of differentiating feel-
ings of sadness and worry from psychiatric
disorders moves to further consideration of
the severity, duration, and functional impact of
these experiences (American Psychiatric As-
sociation, 2000; Williams et al., 2002). These
considerations inform the differential assess-
ment process and can guide strategies to help
people experiencing psychological distress.
Furthermore, these considerations refl ect el-
ements of the diagnostic criteria for psychi-
atric disorders according to the DSM-IV-TR
(American Psychiatric Association, 2000).
Diagnostic Criteria: Depression
When inquiring about a person’s mental health
experiences, it is useful to explore the nature of
the diffi culty a person is having, its intensity,
history, precipitating events or stressors, and
any prior mental health diffi culties or treat-
ment. The DSM-IV-TR identifi es clusters of
mental health symptoms for each disorder and
thresholds for the number of symptoms that
must be met, their duration, and their impact on
functioning. For example, a diagnosis of major
depressive disorder would be made if a per-
son’s symptoms meet these criteria (American
Psychiatric Association, 2000, p. 356):
1. The patient experiences more than two
weeks of daily or near daily experiences of
symptoms that cause signifi cant distress or
impaired functioning.
2. The symptoms are not due to a medical
condition, substance, or bereavement.
3. The symptoms include depressed mood (in
children and adolescents, it may be irritable
mood) or loss of pleasure or interest
in activities and at least four of these
symptoms:
• Signifi cant change in weight or appetite
• Insomnia or hypersomnia
• Psychomotor agitation or retardation
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Physical and Mental Health: Interactions, Assessment, and Interventions 191
• Fatigue or loss of energy
• Feelings of worthlessness or excessive
or inappropriate guilt
• Impaired concentration or indecision
• Recurrent thoughts of death, suicidal
ideation, or suicide attempt.
A person experiencing fewer symptoms
with less impact on functioning may meet the
criteria for depressive disorder not otherwise
specifi ed. Other diagnostic categories that
may be considered when a person presents
with symptoms of depression that are not
due to a general medical condition or sub-
stance include dysthymia, which involves de-
pressed mood and two additional symptoms
of depression for more than two years that
cause signifi cant distress or impairment, and
adjustment disorder with depressed mood,
which involves symptoms of depression fol-
lowing a stressful life event and signifi cant
distress or impaired functioning (American
Psychiatric Association, 2000; J. W. Williams
et al., 2002).
Diagnostic Criteria: Anxiety
Anxiety disorders not due to a general medical
condition or to a substance include generalized
anxiety disorder, panic attack and disorder,
phobias, obsessive-compulsive disorder, acute
stress disorder, posttraumatic stress disorder,
and anxiety disorder not otherwise specifi ed
(American Psychiatric Association, 2000). For
illustrative purposes, the diagnostic criteria for
generalized anxiety disorder and posttraumatic
stress disorder are outlined here. Additional
information can be found in the DSM-IV-TR.
With both of these conditions, the attention
to severity, duration, and functional impact is
again part of differentiating worry that might
be part of the human experience from gen-
eralized anxiety disorder or differentiating
responses that might be expected based on
exposure to a traumatic event from posttrau-
matic stress disorder (American Psychiatric
Association, 2000; J. W. Williams et al., 2002).
In the case of generalized anxiety disorder, in
addition to experiencing excessive worry or
anxiety that is diffi cult to control for six or
more months, the person also experiences at
least three (only one required with children)
of these symptoms (American Psychiatric As-
sociation, 2000, p. 476):
1. Restlessness or feeling keyed up or on edge
2. Experiences of becoming easily fatigued
3. Diffi culty concentrating or mind going
blank
4. Irritability
5. Muscle tension
6. Sleep disturbance (diffi culty falling or
staying asleep or restless unsatisfying
sleep)
In addition, the anxiety is generalized and
not focused on a single domain. The symp-
toms fuel signifi cant distress or impairment in
functioning and are not due to a general medi-
cal condition or substance.
Diagnostic Criteria: Posttraumatic
Stress Disorder
Diagnostic criteria for posttraumatic stress
disorder include exposure to a traumatic event
in which the person experienced “intense fear,
helplessness, or horror.” Among children this
experience may be expressed as agitation or
disorganization of behavior (American Psychi-
atric Association, 2000, p. 467). In addition,
the person reexperiences the traumatic event,
avoids stimuli associated with it or experiences
numbed responsiveness evidenced in at least
three symptoms, and experiences heightened
arousal evidenced in at least two symptoms.
Finally, the symptoms are present for more
than one month and involve signifi cant dis-
tress or impairment in functioning (American
Psychiatric Association, 2000, pp. 467–468).
Diagnostic Hierarchy
It should be noted that when a person’s symp-
toms overlap across conditions, the diagnosis
that holds a higher place in the diagnostic hier-
archy of the DSM-IV-TR (e.g., explanations of
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192 Health Social Work Practice: A Spectrum of Critical Considerations
mental health symptoms due to a general med-
ical condition or to substances are addressed
fi rst) or that has greater pervasiveness (e.g.,
secondary symptoms related to the primary
diagnosis are not diagnosed as separate con-
ditions) is applied (J. B. W. Williams, 1998).
Exclusion criteria found in each diagnostic
category will facilitate the application of these
principles (American Psychiatric Association,
2000; J. B. W. Williams, 1998). As described
by Williams, “A small forest of decision trees
is provided [in the DSM-IV-TR] to make the
differential diagnostic process easier by help-
ing clinicians understand the organization and
hierarchic structure of the classifi cation” (pp.
37–38).
Suicide
Suicide is a serious, preventable public health
issue and is ranked as the 11th overall cause
of death in the United States (DHHS, 1999,
2001b; NIMH, 2009; Xu, Kochanek, Murphy,
& Tejada-Vera, 2010). Numerous risk fac-
tors are associated with suicidal behavior and
completed suicide, including differences by
gender, age, race, and marital status (Heron,
2010; Moscicki, 1997, 2001; NIMH, 2009).
In general terms, women are more likely to
attempt suicide, and men are more likely to
complete suicide. Firearms represent the most
common method of suicide among men and
second most common method among women.
Poisoning is the most prevalent method of sui-
cide among women (NIMH, 2009).
People older than 65 years are at high risk
of suicide, and the highest rate of suicide is
among White men older than 85 years (NIMH,
2007, 2009). Young adults age 15 to 24 years
are also at risk. For this group, suicide is the
third leading cause of death and in 2006 ac-
counted for more deaths among this group
than the next seven causes, including heart dis-
eases, cancers, HIV, congenital problems, and
diabetes, combined (Heron, 2010; U.S. Public
Health Service, 1999). Although suicide rates
among those 10 to 24 years old declined be-
tween 1990 and 2003, recent increases have
been documented among those younger than 20
years (Bridge, Greenhouse, Weldon, Campo,
& Kelleher, 2008; CDC, 2007). Historically,
research suggested that White youth have
higher suicide rates than African American
youth, but recent increases in suicide among
African American youth, particularly among
African American young men, have reduced
the differences in rates between these groups
(Cash & Bridge, 2009; Joe, Baser, Neighbors,
Caldwell, & Jackson, 2009). Although African
American male youth have higher rates of sui-
cide completion than their female counterparts
(Heron, 2010), recent research documents
higher rates of attempted suicide among fe-
males in this group (Joe et al., 2009).
Among males and females of all ages, sui-
cide ranked among the top 10 causes of death
in 2006 among people from American Indian
(8th) and Asian or Pacifi c Islander (9th) back-
grounds and among White Americans (10th)
(Heron, 2010). Two important considerations
should be noted in reviewing these data. First,
Heron advises caution in interpreting reports
for groups other than African Americans or
White Americans because of race-related mis-
reports on death certifi cates. Second, although
suicide did not appear in the top 10 causes
of death among all sexes and ages for people
who were African American or Hispanic, this
ranking differed by age and by gender in both
groups. Finally, in her review of epidemiologic
studies to identify risk factors for suicide,
Moscicki (2001) identifi ed research suggest-
ing that rates of suicide among people who are
divorced or widowed are higher than among
people who are married across age groups and
that being widowed earlier in life poses par-
ticular risk.
In addition to differences in prevalence of
suicidal behavior and completed suicide by
age, gender, race, and marital status, there is a
growing body of literature regarding increased
risk of suicidal behavior among gay, lesbian,
bisexual, and transgender (LGBT) youth and
adults. Although there appears to be general
agreement that gay, lesbian, and bisexual youth
and adults experience increased risk of suicidal
ideation and attempts (Fergusson, Horwood, &
Beautrais, 1999; Frankowski & Committee on
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Physical and Mental Health: Interactions, Assessment, and Interventions 193
Adolescence, 2004; Jesdale & Zierler, 2002;
King et al., 2008; Remafedi, 1999; Russell &
Joyner, 2001), the literature is less conclusive
regarding increased risk of completed suicide
among gay, lesbian, and bisexual youth and
adults compared with their heterosexual coun-
terparts because of methodological limitations
(Jesdale & Zierler, 2002; Remafedi, 1999). An
emerging body of literature also indicates that
transgender individuals are at higher risk for
suicidality (Clements-Nolle, Marx, & Katz,
2006; Mathy, 2002; Wells, Freedenthal, &
Wisneski, 2008). Although the empirical liter-
ature on completed suicide among people who
are LGBT is limited, a prior suicide attempt is
considered a signifi cant risk factor for suicide
(Gliatto & Rai, 1999; Moscicki, 1997; Nock
et al., 2008; Zametkin, Alter, & Yemini, 2001).
Accordingly, health-care professionals should
be aware of the potential for heightened sui-
cide risk among LGBT youth and adults.
Research suggests an increased risk of
suicide is associated with several physical ill-
nesses, including “HIV/AIDS, Huntington’s
disease, malignant neoplasms, multiple scle-
rosis, peptic ulcer, renal disease, spinal cord
injuries, and systemic lupus erythematosus”;
however, “there is no evidence that medi-
cal disorders are independent risk factors for
suicide outside the context of depression and
substance abuse” (Moscicki, 1997, p. 511). In
terms of social work practice in health-care
settings, these fi ndings suggest that strategies
to address mental health conditions among
people with physical illness, including routine
screening, assessment, and intervention, are
central components of suicide prevention.
Experiencing a psychiatric or substance use
disorder is associated with attempted and com-
pleted suicide. The risk is increased for those
who have more than one disorder, particularly
co-occurring mood and substance use disorders
(Kessler, Borges, & Walters, 1999; Moscicki,
1997, 2001; Nock et al., 2008). Other widely
recognized risk factors for suicidality include:
• Hopelessness
• Previous suicide attempts
• Firearms in one’s home
• Incarceration
• Recent loss
• Signifi cant stressful events (e.g., diagnosis
of terminal illness, loss of employment, fi –
nancial or legal diffi culties)
• Family history of mood or substance use
disorders or suicidal behavior
• Family stress
• Limited social support
• Physical or sexual abuse
• Models of suicidal behavior among one’s
family or peer group or among celebrities
• History of impulsive behavior
• Stigma or other obstacles to seeking help
(DHHS, 2001b; Hirschfeld & Russell,
1997; Ivanoff & Smyth, 1992; Moscicki,
1997, 2001; NIMH, 2009; New York State
Department of Health, 2007; Nock et al.,
2008; Sanchez, 2001; Shaffer et al., 2001;
U.S. Public Health Service, 1999; Zametkin
et al., 2001)
In addition to these considerations, suicide
risk factors among youth include domestic
violence, rejection, and disciplinary stress
(Moscicki, 1997; Zametkin et al., 2001). The
National Cancer Institute (NCI, 2010) asserts
that people with cancer may be at increased
risk for suicide and that additional suicide risk
factors to consider include:
• Oral, pharyngeal, and lung cancers (often
associated with heavy alcohol and tobacco
use)
• Advanced stage of disease and poor
prognosis
• Confusion/delirium
• Inadequately controlled pain
• Presence of defi cit symptoms (e.g., loss
of mobility, loss of bowel and bladder
control, amputation, sensory loss,
paraplegia, inability to eat and to swallow,
exhaustion, fatigue) (NCI, 2010)
The presence of a suicide risk factor does
not mean that a person will engage in suicidal
behavior (Ivanoff & Smyth, 1992); however,
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194 Health Social Work Practice: A Spectrum of Critical Considerations
if a person is experiencing numerous factors,
the risk may increase (Moscicki, 1997, 2001).
Evaluating a person’s risk for suicide begins
with an awareness of risk factors but relies on
an individualized assessment. Suicide assess-
ment involves employing relevant knowledge
and fi nely tuned skills to assess a person’s abil-
ity to stay safe and to refrain from self-harm.
In this process, generalized information should
be considered in the context of the unique ex-
periences of each particular individual.
Assessment of Suicide
The fi rst step in suicide assessment is the
identifi cation of suicidal ideation. Many peo-
ple who complete suicide, particularly older
adults, have seen a primary care provider in
the month prior to their deaths (Andersen,
Andersen, Rosholm, & Gram, 2000; Luoma,
Martin, & Pearson, 2002), and physicians
often are unaware of clients’ history or risk
of suicidality (Gliatto & Rai, 1999; Murphy,
1975a,b). Research also suggests that patients
support routine mental health inquiries by
their physicians and that people with a history
of suicidality may be particularly supportive
of such inquiry at each visit (Zimmerman
et al., 1995). Although some individuals may
readily identify their thoughts about suicide,
others may keep them to themselves or may
convey them in indirect language. Indirect
communication may include expressions of
hopelessness, an inability to see a solution to a
problem, a feeling that others might be better
off without them, a desire to give up, or a feel-
ing that current problems are insurmountable
(Ivanoff & Smyth, 1992).
Direct inquiry about suicidal ideation has
not been shown to cause suicidal behavior
(J. W. Williams et al., 2002; Zimmerman et al.,
1995). Although the U.S. Preventive Services
Task Force (2009) recommends depression
screenings in settings with appropriate follow-
up services, it neither recommends nor dis-
courages routine screening for suicide based
on available evidence. However, particularly
in settings where people may be at high risk of
suicide, routine inquiry about suicidal ideation
as part of a mental health assessment may
facilitate early detection and assistance for peo-
ple at risk (Ivanoff & Smyth, 1992). Further-
more, results from a recent systematic review
also indicate that training primary care physi-
cians to identify and address suicidality and
depression is associated with signifi cant (22%–
73%) reductions in suicides. Finally, psychiatric
evaluation guidelines from the American Psy-
chiatric Association (2006) include assessment
of risk to self or others as a standard domain in
an overall clinical assessment.
Although a number of standardized sui-
cide assessment instruments are available and
widely used in research, the American Psy-
chiatric Association (2006) notes their limited
predictive abilities. As such, this discussion
focuses on direct inquiry about potential self-
harm and individualized follow-up questions
to assess suicidality. Direct inquiry that is
coupled with empathy can provide an inroad
into assessing suicidal ideation and intention.
For example, interwoven with a discussion in
which a client expresses hopelessness and dif-
fi culty identifying solutions to a pressing prob-
lem, a follow-up question might be: “It sounds
like you’ve been feeling pretty discouraged,
and maybe a bit desperate. Have you thought
about hurting yourself?” Or another follow-
up question might be: “It sounds like you’re
having a hard time fi nding a way out of this
situation and that you’re feeling like you have
no options. You mentioned wanting to give up.
Have you thought about wanting to die?” If the
client reports wanting to die, then the social
worker could follow up by asking “You’ve
described feeling so down you’ve wanted to
die. Have you thought about hurting your-
self?” (For additional examples, see American
Psychiatric Association, 2006; Gliatto & Rai,
1999; Hirschfeld & Russell, 1997; Ivanoff
& Smyth, 1992; Lukas, 1993; Shaffer et al.,
2001).
If a client reports suicidal ideation, the so-
cial worker’s next questions aim to (a) gather
additional information about components of
the ideation (e.g., content, timing, onset, fre-
quency, intensity) and (b) identify the level
of imminent risk associated with it (Ameri-
can Psychiatric Association, 2006; Hirschfeld
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Physical and Mental Health: Interactions, Assessment, and Interventions 195
& Russell, 1997; Ivanoff & Smyth, 1992).
Bearing in mind the risk factors previously
discussed, the imminence of suicide risk in-
creases with the intensity of the suicidal ide-
ation and the presence of these factors:
• A developed plan for hurting one’s self,
with particular attention to plans that in-
volve violence or irreversibility
• Access to the means to carry out the plan
• Intention to harm one’s self or to carry out
the plan
• Consideration of efforts to avoid being dis-
covered or interrupted
• Completion of or in process of writing a
suicide note
• Alcohol or other substance use
• Presence of psychotic symptoms, with par-
ticular attention to command hallucinations
that may be instructing the person to en-
gage in self-harm
• Hopelessness (American Psychiatric As-
sociation, 2006; Hirschfeld & Russell,
1997; Ivanoff & Smyth, 1992; USPSTF,
2009)
Making a determination regarding a client’s
level of suicide risk can be facilitated by fi ve
additional factors.
1. Gathering specifi c information in the
course of the suicide assessment will enable
the social worker to further consider the
person’s level of risk, to describe it to others
from whom consultation may be sought, and
to coordinate services as indicated (Lukas,
1993).
2. Consultation with a supervisor or with
colleagues often is a vital element in
making this assessment and in formulating
appropriate intervention.
3. Before conducting a suicide assessment,
social workers should familiarize
themselves with their organization’s policies
and procedures regarding assessment and
intervention with clients at risk of suicide.
They also should familiarize themselves
with the state laws and regulations in this
area.
4. Although social workers should be mindful
of the potential negative aspects of inpatient
hospitalization (e.g., stigma, loss of control)
and the centrality of supporting clients’ self-
control (Ivanoff & Smyth, 1992; Lukas,
1993), Lukas asserts that “you should make
a practice—both for the client’s well-being
and your own—of never letting a client
leave your offi ce until you have used all
necessary resources to satisfy yourself that
she is not at imminent risk of trying to kill
herself” (p.119).
5. Clear, thorough documentation can be
useful in recording events, decisions made,
and actions taken and in serving as a risk
management practice (Ivanoff & Smyth,
1992).
Interventions to Address Suicide Risk
If a client is at immediate risk of suicide, in-
tervention should focus on physical safety
(Hirschfeld & Russell, 1997; Ivanoff & Smyth,
1992); however, throughout the process, Iva-
noff and Smyth (1992) recommend “a bias
toward maintaining the client’s sense of self-
control and personal management whenever
possible” (p. 123). This stance suggests that
social workers should pursue collaboration
and empowerment rather than unilateral ac-
tion when working with clients at risk for sui-
cide. In social work practice, this perspective
would involve seeking clients’ input regarding
available intervention options and empowering
them to take action—for example, voluntarily
pursuing inpatient hospitalization rather than
involuntary commitment. However, if a person
is unable to pursue action that will uphold his
safety and there is imminent risk of suicide, it
is the social worker’s responsibility, or the re-
sponsibility of another direct service provider,
to intervene to support his physical safety.
When a client is at imminent risk of suicide,
someone should remain with him, and, in most
cases, an evaluation for inpatient hospitaliza-
tion should be made (Hirschfeld & Russell,
1997). If the contact with the client is over the
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196 Health Social Work Practice: A Spectrum of Critical Considerations
phone, the social worker should remain on the
phone with the client and not place the client
on hold (Millman, Strike, Van Soest, Rosen, &
Schmidt, 1998). It may be helpful to involve
a reassuring person to stay with the client so
that he is not left alone and so that emotional
support can begin to be mobilized (Ivanoff &
Smyth, 1992; New York State Department of
Health, 2007). If the client says that he has a
gun or pills during the phone contact, Millman
and colleagues (1998) recommend that he
should be asked to place the gun (unloaded) in
another part of the room or, likewise, to move
pills, to dispose of them in the toilet, or to
ask another person to keep them temporarily.
Contacting emergency medical services or the
police would be warranted if a suicide attempt
has occurred or is in the process of occurring
or if needed to transport the client for inpa-
tient hospitalization evaluation (Hirschfeld
& Russell, 1997; Ivanoff & Smyth, 1992). A
client who needs to be evaluated for inpatient
hospitalization should not drive himself there
(Holkup, 2002).
Shaffer and colleagues (2001) further spec-
ify that with children and adolescents experi-
encing suicidality, the social worker should be
in contact with the client’s family and should
address the importance of treatment as well as
its feasibility and family preferences. In addi-
tion, they recommend gathering information
from multiple sources (e.g., interviews with
the client and people who know the client,
observation of behavior, completion of stan-
dardized scales) and consulting with the cli-
ent’s caregiver. Consultation with the client
and caregiver should focus on these topics: (a)
restricting access to alcohol or drugs because
of their disinhibiting effects, (b) securing or
removing any fi rearms or lethal medications,
(c) identifying that someone supportive will be
at home, (d) discussing stressful situations that
may precipitate suicidality and coping strate-
gies to address them, and (e) confi rming that
an appointment for follow-up care has been
made.
Verbal and written safety contracts often
are made with clients and their families when
their risk of suicide is found to not be imminent
(American Psychiatric Association, 2006;
Shaffer et al., 2001). These contracts typically
include an agreement that the client will not
harm himself and that the client will take ac-
tion to stay safe, including contact numbers
and whom to call if he is not able to stay safe
(Holkup, 2002; Ivanoff & Smyth, 1992). Writ-
ten contracts typically are signed by both the
client and the social worker, and each retains
a copy (Holkup, 2002). Although such con-
tracts may be widely used, there are important
caveats to consider in their use, perhaps most
important of which are that they lack empiri-
cal research support (Garvey, Penn, Campbell,
Esposito-Smythers, & Spirito, 2009; Rudd,
Mandrusiak, & Joiner, 2006; Shaffer et al.,
2001) and that the American Psychiatric Asso-
ciation (2006) cautions against their use as evi-
dence of a client’s ability to stay safe or of his
eligibility for discharge from outpatient ser-
vices or inpatient hospitalization. In addition,
the American Psychiatric Association does not
recommend the use of safety contracts with
clients who display impulsivity, agitation, psy-
chosis, or substance intoxication or with cli-
ents who are not well known to the provider or
who are seen in emergency contexts. Garvey
and colleagues (2009) also caution clinicians
regarding the use of such contracts. In par-
ticular, they emphasize their limited evidence
base, the client’s ability to give informed con-
sent, the importance of a comprehensive sui-
cide risk assessment, and the legal liabilities
that may be involved with such contracts. In
recognition of the limitations of safety con-
tracts, Rudd and colleagues (2006) propose
a commitment-to-treatment statement (CTS)
that includes attention to roles and expecta-
tions of the client and clinician, clear com-
munication about treatment and suicide, and a
plan to access crisis services as needed. The
authors note that the CTS requires empirical
investigation; however, it may address some
of the limitations of safety contracts. McMyler
and Pryjmachuk (2008) also suggest alternate
strategies to the safety contract, including safety
and crisis planning, nonintrusive observation
and reducing environmental risks on inpatient
units, addressing precipitants to suicidality, and
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Physical and Mental Health: Interactions, Assessment, and Interventions 197
attending to the centrality of communication
between the client and clinician. The available
evidence base of these alternatives varies.
When a client is at risk for suicide but not
imminently, recommended interventions in-
clude mobilizing her support system by asking
her permission to contact and involve a person
with whom she has a close relationship; acting
to restrict her access to any fi rearms, ammu-
nition, lethal medication, or other potentially
lethal methods of self-harm; thoroughly fol-
lowing up with her through additional con-
tacts (including phone contact, visits, letters,
or scheduled meetings); and providing appro-
priate intervention or referral to address any
co-occurring psychiatric or substance use dis-
orders she may be experiencing (Hirschfeld
& Russell, 1997; Ivanoff & Smyth, 1992;
New York State Department of Health, 2007;
Shaffer et al., 2001). The Substance Abuse and
Mental Health Services Administration (Of-
fi ce of Applied Studies, 2009) has developed
a fi ve-step pocket guide to suicide assessment
and immediate intervention that may be useful
for quick reference (see http://download.ncadi
.samhsa.gov/ken/pdf/SMA09-4432/SMA09
-4432 for this resource).
A growing body of evidence-based informa-
tion guides intervention with people at risk of
suicide. Effective strategies generally include
intensive follow-up and a combination of psy-
chotherapy and pharmacotherapy (American
Psychiatric Association, 2006; Hirschfeld &
Russell, 1997; Ivanoff & Smyth, 1992; Shaffer
et al., 2001). Because repeat suicide attempts
often occur within the fi rst weeks following
intake or hospital discharge (Hunt et al., 2009;
Meehan et al., 2006), active and immediate fol-
low-up is warranted. It is important to note that
while some studies of chain-of-care networks,
follow-up mailings, and easy access to psy-
chiatric care (Morgan, Jones, & Owen, 1993)
indicate that such follow-up is helpful in reduc-
ing suicidality, other types of follow-up have
not consistently been more effective than usual
care (Mann et al., 2005). In particular, there
have been mixed fi ndings regarding the added
value of phone-based interventions. For ex-
ample, a Swedish study found no added benefi t
of two phone interventions (contact at 4- and
8-month follow-up) among 216 people who had
attempted suicide and received psychiatric care
(Cedereke, Monti, & Öjehagen, 2002). Another
study conducted in the United States found that
three phone contacts over one year, together
with two visits with a depression specialist and
personalized mailings, improved medication
adherence and depressive symptoms among
386 people with major depression or dysthymia
who received primary care. (Katon et al., 2001).
Although the second study did not examine ef-
fects on suicidality, the combined intervention
shows promise to improve medication adher-
ence and depression, which may reduce suicid-
ality. These fi ndings suggest that phone-based
interventions may be more effective when part
of a multifaceted follow-up plan. Furthermore,
the effectiveness of more intensive follow-up by
phone cannot be assessed by this research that
focuses on highly specifi ed interspersed phone
contacts. Of critical importance is timely thera-
peutic follow-up for people at risk of suicide
(Hunt et al., 2009).
Cognitive-behavioral therapy (CBT) and
interpersonal psychotherapy may be useful
with persons experiencing depression and sui-
cidality; dialectical behavior therapy and psy-
chodynamic therapy may be useful for persons
experiencing borderline personality disorder,
which often is associated with suicidal and
self-harming behavior (American Psychiatric
Association, 2000, 2006; Mann et al., 2005).
For example, in a study with 120 adults who
recently attempted suicide, cognitive therapy
(10 sessions) was associated with 50% lower
likelihood of reattempting suicide than the
usual care condition (Brown et al., 2005). An
eight-year follow-up of psychodynamic par-
tial hospitalization (18 months) and outpatient
group treatment (18 months) with 41 people
experiencing borderline personality disorder
found approximately 60% lower likelihood
of suicidality among those in the experimen-
tal group compared with those in usual treat-
ment (Bateman & Fonagy, 2008). Medication,
including lithium, neuroleptics, and antide-
pressants, also has been shown to reduce the
risk of suicide (Angst, Angst, Gerber-Werder,
JWBT514_ch08.indd 197JWBT514_ch08.indd 197 9/21/11 7:42 PM9/21/11 7:42 PM
http://download.ncadi.samhsa.gov/ken/pdf/SMA09-4432/SMA09-4432
http://download.ncadi.samhsa.gov/ken/pdf/SMA09-4432/SMA09-4432
http://download.ncadi.samhsa.gov/ken/pdf/SMA09-4432/SMA09-4432
198 Health Social Work Practice: A Spectrum of Critical Considerations
& Gamma, 2005; Angst, Stassen, Clayton,
& Angst, 2002; Baldessarini et al., 2006;
Isacsson, Holmgren, Ösby, & Ahlner, 2009).
In some cases, when a person is experiencing
severe unremitting depression, electroconvul-
sive therapy (ECT) may be indicated (Ameri-
can Psychiatric Association, 2006; Hirschfeld
& Russell, 1997; NIMH, 2008).
Research with older adults experiencing
depression suggests that interpersonal psy-
chotherapy or medication (primarily citalo-
pram, a selective serotonin reuptake inhibitor
[SSRI]) provide more timely relief from sui-
cidal ideation than does usual care while
also facilitating improvements in depression
(Bruce et al., 2004). In their practice pa-
rameters for intervention with children and
adolescents experiencing suicidality, Shaf-
fer and colleagues (2001) draw on research
with adolescents experiencing depression to
cite evidence for the use of these approaches
to assist youth at risk of suicide: CBT, inter-
personal psychotherapy, dialectical behavior
therapy, and family psychoeducation (Brent et
al., 1997; Brent, Poling, McKain, & Baugher,
1993; A. L. Miller, Rathus, Linehan, Wetzler,
& Leigh, 1997; Mufson, Weissman, Moreau,
& Garfi nkel, 1999). The American Academy
of Child and Adolescent Psychiatry’s (2007)
recent practice parameters to assist children
and adolescents experiencing depression also
recognize the usefulness of CBT, interpersonal
psychotherapy, family therapy, and psychody-
namic psychotherapy to address depression
among youth, however, its review suggests the
need for additional research regarding family
therapy and psychodynamic psychotherapy.
Shaffer and colleagues (2001) discuss sev-
eral psychopharmacological interventions to
assist children and adolescents experiencing
suicidality, including lithium, valproate, carba-
mazepine, SSRIs, and, in particular, fl uoxetine.
Concerns regarding increased risk of suicid-
ality with the use of antidepressants among
youth have received considerable attention in
recent years (March, Silva, Vitiello, & TADS
Team, 2006; Olfson, Marcus, & Shaffer, 2006;
Schneeweiss et al., 2010; Simon, Savarino,
Operskalski, & Wang, 2006; Tiihonen et al.,
2006) and infl uenced the Food and Drug Ad-
ministration’s (FDA) 2005 decision to request
that drug manufacturers include a black-box
warning on antidepressants regarding in-
creased risk of suicidal ideation and behavior
among children and adolescents (FDA, 2007).
In 2007, the FDA proposed revised warnings,
including language to indicate that elevated
risk continues until age 24 years and that psy-
chiatric disorders play the primary role in sui-
cide risk. Upon review of available science,
the AACAP (2007) provided this summary:
[I]t appears that spontaneously reported
events are more common in SSRI treatment.
Nevertheless, given the greater number of
patients who benefi t from SSRIs than who
experience these serious adverse effects, the
lack of any completed suicides, and the de-
cline in overall suicidality in rating scales,
the risk/benefi t ratio for SSRI use in pediatric
depression appears to be favorable with care-
ful monitoring. (p. 1516)
Close monitoring should include routine
inquiry regarding suicidality and attention to
worsening depressive symptoms, behavioral
changes, and akathisia, a side effect that may
increase risk of suicidality (NIMH, 2010b;
Shaffer et al., 2001).
For social workers in health-care settings,
these fi ndings suggest that, depending on
one’s role and setting, training in the provi-
sion of CBT, interpersonal, psychodynamic,
dialectical behavior, and family therapies or
referring clients to such therapies may be in-
dicated. In addition, collaboration with physi-
cians who can evaluate the use of psychotropic
medications, in particular medications that are
not lethal in overdose, would be warranted
(Hirschfeld & Russell, 1997; Murphy, 1975a).
PSYCHOSOCIAL
INTERVENTION STRATEGIES
IN HEALTH-CARE SETTINGS
Social work practitioners strive to match in-
tervention strategies to individuals in their
ecological contexts and to the identifi ed
JWBT514_ch08.indd 198JWBT514_ch08.indd 198 9/21/11 7:42 PM9/21/11 7:42 PM
Physical and Mental Health: Interactions, Assessment, and Interventions 199
problems (Berlin & Marsh, 1993). They do
this with the best available evidence and the
client’s preferences for intervention (Culpeper,
2003; Gambrill, 2000; J. W. Williams et al.,
2002). Comprehensive assessment enables
social workers to fully consider the range of
factors that may be contributing to the prob-
lem and the range of interventions that may
resolve it effectively. Furthermore, it enables
social workers to discuss intervention options
with the client (Gambrill, 2000). As described
above, differential assessment involves identi-
fying the type of mental health issue a person
is experiencing, its possible infl uences, and
possible ways to address it. The psychosocial
interventions described next begin with strate-
gies to support coping and overall well-being
and then address strategies to assist people
who are experiencing depression and anxiety
disorders.
Routine Screening of Psychosocial
Conditions
Because of the signifi cant implications of
mental health in health-care settings, includ-
ing the relationship between psychological
distress and physical health conditions, the
role of behavior in health, the importance of
suicide prevention, and the power of social
ties in supporting health, routine screening
of psychosocial conditions is highly relevant
in health-care settings. Program planning and
policy-level initiatives are warranted to ensure
the availability of this core element of overall
health care.
Transdisciplinary Collaboration and
Coordination of Services
Another central component of supporting men-
tal health in health-care settings involves trans-
disciplinary collaboration with the team of
providers working with the client. Transdisci-
plinary collaboration is particularly relevant in
underscoring the importance of mental health
in physical health conditions and outcomes,
examining intersections between the client’s
mental health and physical condition, and
coordinating comprehensive care with numer-
ous providers. When a client is experiencing
psychological distress that warrants consulta-
tion for psychopharmacological intervention,
transdisciplinary collaboration can be helpful
in accessing this service and in considering
the possible interactions between psychotro-
pic medications and any medications the client
currently is taking for another condition.
Social workers often serve as brokers of
services (Hepworth et al., 2002). In this role
social workers can facilitate referrals and ac-
cess to needed resources, including physical
and mental health care, health insurance cover-
age, housing, food, and community-based case
management when indicated. Gambrill (2000)
highlights the importance of being aware of
the effectiveness of services to which clients
are referred. Beyond simply linking a client
to a given service, the social worker should
consider the overall quality of that resource.
In some communities, available resources may
be limited and may require macro-level advo-
cacy to adequately meet the needs of people
within the community. In addition to simply
providing a phone number or a contact name,
the social worker may help facilitate the refer-
ral by obtaining written consent from the client
to contact the referral agency, by following up
with the agency directly, and then by follow-
ing up with the client to ensure that the contact
was made.
Information and Psychoeducation
Information and psychoeducation are cen-
tral components of helping individuals and
families understand the physical or mental
health condition, including its course, expected
outcome, treatment, and psychosocial com-
ponents (A. Johnson, Sandford, & Tyndall,
2003; Rolland, 1994). Educational and psy-
choeducational approaches typically differ by
scope, focus, and qualifi cations of the service
provider. Education generally focuses on pro-
viding information about an illness, including
expected course, treatment, and components of
self-care by a person who may not necessarily
have professional training. Psychoeducation
JWBT514_ch08.indd 199JWBT514_ch08.indd 199 9/21/11 7:42 PM9/21/11 7:42 PM
200 Health Social Work Practice: A Spectrum of Critical Considerations
generally builds on these components by also
including psychotherapeutic strategies, such as
behavioral and cognitive interventions, led by
a person with professional training in mental
health services (Lukens & Thorning, 1998).
Psychoeducational approaches support the
emotional and cognitive processing of infor-
mation and may assist people with developing
a psychosocial understanding of the condition
and its meaning in their lives (Rolland, 1994).
Based on a review of studies that compared
the usefulness of written and verbal informa-
tion for parents of children discharged from
acute hospitals, A. Johnson and colleagues
(2003) concluded that greater satisfaction and
knowledge were associated with the provision
of both written and verbal information. In addi-
tion, they underscore the potential for client in-
volvement in creating the written information,
the importance of its culturally relevant pre-
sentation, and attention to the literacy level of
written material. Written and verbal informa-
tion and psychoeducational interventions are
important components of facilitating knowl-
edge and strengthening coping with physical
and mental health conditions. Furthermore, as
described in the sections titled “Stress Man-
agement” and “Strengthening Health-Support-
ing Behaviors,” such interventions also may
play an important role in reducing health risks
and promoting longevity.
Adherence Counseling
Adherence to medication and treatment are
key contributors to health outcomes. However,
nonadherence is highly prevalent, impact-
ing approximately 1 in 4 people (DiMatteo,
2004b). Social workers often assist people
with adherence to medications and treatment.
For comprehensive guidance to support adher-
ence in health-care settings, see Chapter 20 in
this book.
Stress Management
Several strategies have shown promise in help-
ing people to manage stress and in supporting
overall health, including mindfulness-based
stress reduction (MSBR; Kabat-Zinn, 2003;
Weissbecker et al., 2002), exercise (McEwen
& Gianaros, 2010), and relaxation training.
Research on these approaches includes com-
pelling fi ndings regarding their ability to af-
fect not only mood and quality of life but
also physical functioning and outcomes. For
example, a recent randomized controlled
trial of MBSR with 84 women who survived
breast cancer found that MBSR was associ-
ated with greater reductions in depression and
fears of recurrence and greater improvements
in energy and physical functioning compared
with usual care (Lengacher et al., 2009). In a
nonrandomized controlled study involving 75
women with early-stage breast cancer, MBSR
was associated with greater improvements in
quality of life, coping, and immune function-
ing and reduced cortisol levels compared with
the control group (Witek-Janusek et al., 2008).
Similarly, research involving 133 adults ex-
periencing chronic pain found MBSR to be
associated not only with improved mental
health but also with improved pain and physi-
cal functioning (Rosenzweig et al., 2010). A
recent meta-analysis indicated small physical
effects of MBSR among people with can-
cer, but it found greater mental health effects
(Ledesma & Kumano, 2009). Another meta-
analysis found small but signifi cant mental
health effects of MBSR among people with
chronic physical illness. The authors suggest
that mindfulness-based cognitive therapy may
be associated with greater gains, particularly
in depression, among people with serious
and persistent physical illness (Bohlmeijer,
Prenger, Taal, & Cujipers, 2010).
There have been mixed fi ndings about
the effectiveness of some relaxation training
and stress management interventions among
people with cardiac problems (IOM, 2001). A
comprehensive review of 36 studies by Rees,
Bennett, West, Davey, and Ebrahim (2004),
18 of which examined the effectiveness of
stress management strategies, suggested that
psychological and stress management inter-
ventions among people with coronary heart
disease were associated with some decreased
depression and anxiety; however, fi ndings
JWBT514_ch08.indd 200JWBT514_ch08.indd 200 9/21/11 7:42 PM9/21/11 7:42 PM
Physical and Mental Health: Interactions, Assessment, and Interventions 201
did not demonstrate reductions in cardiac
mortality, which may be due to methodologi-
cal limitations of the published research and
the range of interventions included in the
review. In contrast to these fi ndings, as pre-
viously discussed, a meta-analysis of 37 stud-
ies found that stress management and health
education interventions were, in fact, associ-
ated with reduced risk of cardiac mortality as
well as reductions in associated risk factors
such as smoking, dietary habits, cholesterol,
and blood pressure (Dusseldorp et al., 1999).
These fi ndings, in conjunction with additional
research conducted with people experiencing
cancer and other serious illnesses, seem to
suggest that stress management interventions
are best partnered with psychoeducation to
reduce risk factors and to enhance coping and
survival (Butow et al., 1999; Conn, Hafdahl,
Brown, & Brown, 2008; Dusseldorp et al.,
1999; Fawzy et al., 1993, 1995; Spiegel et al.,
1998).
Strengthening Health-Supporting
Behaviors
Smoking cessation, healthful eating, and
weight management are key behaviors that
can help improve health (IOM, 2001). Engag-
ing people in the change process and facilitat-
ing motivation to change behavior are central
elements of supporting such health behaviors.
Two paradigms—the transtheoretical/stages
of change model (Prochaska & DiClemente,
1983) and motivational interviewing (Miller
& Rollnick, 1991, 2002; Rollnick, Miller, &
Butler, 2008)—have received considerable at-
tention as models to inform assisting people
with behavior change efforts. Although empiri-
cal research has prompted questions regard-
ing the theoretical validity of Prochaska and
DiClemente’s transtheoretical model (IOM,
2001; Littell & Girvin, 2002), and further
research suggests that perceptions of self-
effi cacy, expectations about outcomes, and
self-control of behavior may predict behavioral
changes more effectively, the stages of change
model may be useful as a framework for con-
ceptualizing readiness for change (IOM, 2001).
The stages of change model proposes that
a person’s readiness for behavior change can
be understood in the context of fi ve stages:
precontemplation, contemplation, prepara-
tion, action, and maintenance (Prochaska,
DiClemente, & Norcross, 1992). The stages
refl ect (a) the degree of awareness a person
has about making a behavioral change (e.g., a
move from precontemplation to contemplation
refl ects increasing awareness of a behavior to
be changed and increasing consideration of the
possibility of change), (b) the time frame in
which behavioral change will happen (e.g., a
move from contemplation to preparation re-
fl ects increased intention to take action in the
near future), and (c) the action a person is tak-
ing to achieve behavioral change (e.g., prepa-
ration involves planning for change, action
involves active modifi cation of behavior or en-
vironment to support behavioral change, and
maintenance involves steps to uphold change)
(Prochaska et al., 1992). Together, Miller and
Rollnick’s (1991, 2002) model of motivational
interviewing and the stages of change model
may provide useful tools for conceptualizing
and enhancing motivation and for helping
people change behaviors (IOM, 2001). Both
of these models are discussed further in Chap-
ter 17 of this book. In addition, more detailed
information regarding motivational interview-
ing in the context of health care can be found
in a recent book by Rollnick, Miller, and Butler
(2008). As noted earlier, connecting individu-
ally focused behavior change interventions with
attention to familial, social, and environmental
factors, including access to safe places to exer-
cise and availability of healthful food, is likely
to strengthen their effectiveness (IOM, 2001).
Coping Enhancement
A large body of research suggests that inter-
ventions to enhance coping can assist people
experiencing psychological stress (Noh &
Kaspar, 2003). Rather than focusing on spe-
cifi c mental health symptoms among people
experiencing physical illness, Folkman and
Greer (2000) focus on “psychological well-
being and the coping processes that support it”
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202 Health Social Work Practice: A Spectrum of Critical Considerations
(p. 11). Informed by Lazarus and Folkman’s
(1984) cognitive model of stress and coping
and relevant research that focuses on elements
of effective coping while experiencing illness,
Folkman and Greer propose an approach that
relies heavily on pursuing meaningful goals
to support coping when faced with illness. In
essence, this model focuses on continuing to
seek goals that matter; facing the inspiring yet
potentially frightening possibility that the goal
may or may not be realized; and taking action
to achieve the goal. Implicit in this model is
the notion that pursuing goals that matter and
that are not necessarily illness specifi c can be
an important mechanism for fostering coping
and continued engagement with positive as-
pects of life in the midst of illness.
In this model, the social worker fi rst focuses
on creating “conditions for challenge” which
refl ect a positive appraisal that something
valuable can be gained through the experience
(Folkman & Greer, 2000, p.16). The impor-
tance of challenge in this model is based on
the premise that such appraisal holds the pos-
sibility of achieving a meaningful goal through
the client’s own efforts and of enhancing the
client’s sense of control and ability. This chal-
lenge combines the exciting possibility of
achieving the goal and the potentially worri-
some risk of striving without success. Normal-
izing this combination of emotions may be
helpful. To create the conditions for challenge,
Folkman and Greer (2000) suggest exploring
what matters to the client, whether it relates
to his illness or to other parts of his life. The
social worker “needs to help the patient defi ne
what is important now, what matters most”
(p. 16). Probing recent events and specifi c as-
pects of those events that have meaning and
that matter to the client will help create con-
ditions for challenge. Identifi cation of what
matters to the client also may be fostered
even as clients discuss negative events. Nega-
tive events can be explored and followed with
inquiry regarding positive events or personal
strengths. Folkman and Greer (2000) offer
these specifi c questions: “Tell me about a time
when something happened that made you feel
good” or “Tell me about a time when things
were really going well. What was going on?’”
(p. 16). Other sample questions might include
“What are some of your strengths? When was
a time that you used that strength?” Explora-
tion of what was involved in those times, of
how the client was feeling, and of “what mat-
tered” to the client can help identify what is
important to him (p. 16).
Identifying what matters to the client then
informs the creation of a realistic goal that has
meaning to him. The goal may be created inde-
pendently by the client or with input from the
social worker or signifi cant others. Most rel-
evant is that the goal matters to the client and
that it emphasizes personal control. Folkman
and Greer (2000) describe the goal of a person
experiencing metastatic bowel cancer to make
tea for his companion although he was feel-
ing weak physically and somewhat powerless
emotionally. They go on to describe that in set-
ting this goal and considering steps to achieve
it, “the patient realized that there were still
things he could control, and this helped lift
his spirits” (p. 16). Goals may involve read-
ing a book to a loved one, having a conversa-
tion with a friend, pursuing a cherished hobby,
formulating a system to manage medical treat-
ments or side effects, or writing a letter to a
partner; what is important is that the goal has
value to the client and strengthens a sense of
control.
The next step focuses on encouraging the
client’s achievement of the goal, including
continued support or revision of the goal if
the task seems overwhelming. Key elements
of this step include active engagement of the
client in pursuing a goal that has meaning to
him, focusing on steps to achieve the goal, and
continuing to create the conditions of positive
challenge. The fi nal component of the model
involves maintaining “background positive
mood” (Folkman & Greer, 2000, p. 17), which
may include asking clients to talk about posi-
tive happenings in their lives and encouraging
them to plan activities that yield feelings of
enjoyment and accomplishment.
This theoretically informed and research-
guided model provides a framework for en-
hancing coping and psychological well-being
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Physical and Mental Health: Interactions, Assessment, and Interventions 203
when a person is experiencing serious ill-
ness. Key elements of this model include its
attention to normative coping and supporting
a sense of control and mastery in the context
of illness. This model has the potential to sup-
port meaning, growth, and well-being in the
midst of challenges associated with signifi cant
illness (Cordova, Cunningham, Carlson, &
Andrykowski, 2001; Folkman & Greer, 2000;
Towsley, Beck, & Watkins, 2007).
Family and Social Support
and Spiritual Resources
Psychosocial responses to physical and men-
tal illness among individuals and their fami-
lies are likely to vary according to the timing,
onset, course, degree of incapacitation, and
anticipated outcome of the illness (Rolland,
1994). Family and social support infl uence
health outcomes via these pathways: direct bi-
ology (e.g., airborne, bloodborne, and genetic
conditions), health behavior (e.g., lifestyle,
caregiving, and medical adherence support),
and psychophysiology (e.g., physiological ef-
fects of emotions and cognitions). Generally
evidence-based family interventions include
illness-specifi c education and psychoeduca-
tion to support knowledge and coping and
therapy to address relational problems, as
indicated (Campbell, 2003). Multiple family
groups, ongoing assessment of family mem-
bers’ psychosocial experiences, support for
normative coping, early intervention in the
event of psychological distress, self-help or
professionally facilitated support groups, and
the structuring of services to actively involve
family members also are recommended (IOM,
2001; Fobair, 1998; Rolland, 1994; Weihs et
al., 2002). Enhancing social support and cop-
ing skills through support groups and peer
support also is likely to improve quality of
life and health status. Finally, involvement in
religious organizations is linked with positive
health outcomes (IOM, 2001). Additional in-
formation regarding families and health can be
found in Chapter 13, and information regard-
ing spiritual resources among families can be
found in a recent book by Walsh (2009).
Targeted Interventions for People With
Depression and Anxiety Disorders
There is a growing body of evidence to guide
intervention with people experiencing depres-
sion and anxiety disorders (DHHS, 1999).
Unfortunately, most people in the United
States who likely need care do not receive ap-
propriate treatment, even when “appropriate
treatment” is defi ned based on minimal rec-
ommended levels of antidepressant medication
or at least four meetings focusing on mental
health with a mental health specialist or pri-
mary care provider (Young, Klap, Sherbourne,
& Wells, 2001). With a nationally represen-
tative sample of those likely experiencing a
depressive or anxiety disorder, only 30% re-
ceived appropriate treatment, although 83%
had seen a health-care provider. Likelihood of
not receiving appropriate care was associated
with being male, African American, less well
educated, younger than 30 years, or older than
59 years. Income and insurance status were
not associated with appropriate treatment, al-
though insurance was associated with seek-
ing care. No difference in accessing care was
found between people who were White Ameri-
can or African American, but African Ameri-
cans were less likely to receive appropriate
treatment; this discrepancy underscores the
importance of addressing cultural competence
in mental health care. In addition, the research
also underscores the importance of addressing
mental health-care disparities associated with
race and SES (DHHS, 2001a; Young et al.,
2001).
These treatment recommendations to assist
people experiencing depression and anxiety
disorders are informed by empirical studies
and consensus statements (Ballenger et al.,
2000, 2004; DHHS, 1999; Hollon, Thase,
& Markowitz, 2002; NIMH, 2008, 2009;
Young et al., 2001). For depression, CBT
and interpersonal therapy (IPT) are evidence-
based psychotherapeutic interventions that
have demonstrated effectiveness with adoles-
cents, adults, and older adults (DHHS, 1999;
Hollon et al., 2002; NIMH, 2008). A recent
review of effective approaches to depression
JWBT514_ch08.indd 203JWBT514_ch08.indd 203 9/21/11 7:42 PM9/21/11 7:42 PM
204 Health Social Work Practice: A Spectrum of Critical Considerations
among older adults also recognizes the value
of problem-solving therapy and supportive
psychotherapy. A new approach, ecosystem-
focused therapy, recently has been developed
and aims to assist older adults whose cognitive
or physical challenges limit gains in therapies
that rely heavily on problem-solving strategies
(Alexopoulos & Kelly, 2009). NIMH (2010a)
notes that light therapy, melatonin, and expres-
sive or creative arts therapy have shown prom-
ise in the treatment of depression.
Antidepressant medications including
SSRIs, serotonin and norepinephrine reup-
take inhibitors (SNRIs), tricyclics, and mono-
amine oxidase inhibitors (MAOIs) may be
helpful for people experiencing depression. It
is important to note that antidepressants can
take several weeks to achieve therapeutic ef-
fects and that if one medication is ineffective,
an effective alternative often can be found.
Furthermore, some people require additional
medications, particularly to address co-occur-
ring physical and mental health conditions
(NIMH, 2008). When people are experienc-
ing severe unremitting depression for which
other treatments are not effective or that
co-occurs with psychotic symptoms, consid-
eration of electroconvulsive therapy (ECT)
may be indicated (DHHS, 1999; Hollon et al.,
2002; NIMH, 2008).
For people experiencing anxiety disorders,
CBT has been demonstrated to be effective as
have several antidepressant and antianxiety
medications and beta-blockers (DHHS, 1999;
NIMH, 2009; Young et al., 2001). A recent
clinical trial found that both CBT and short-
term psychodynamic psychotherapy improved
anxiety among 57 adults with generalized anx-
iety disorder, but the CBT group experienced
greater gains related to worry, depression,
and trait anxiety (Leichsenring et al., 2009).
A growing body of empirical research sug-
gests that psychodynamic psychotherapy, long
used to assist people experiencing a range of
mental health concerns, outperforms wait-list
or usual-treatment control groups and often
is comparable to CBT and other psychothera-
pies across psychiatric conditions. Further re-
search is needed to examine the effi cacy and
effectiveness of psychodynamic psychother-
apy to assist people with specifi c mental health
conditions and to assess the optimal match be-
tween clients and approaches (Leichsenring
& Leibing, 2007; Leichsenring, Rabung, &
Leibing, 2004; Leichsenring et al., 2009).
Recommended intervention for people ex-
periencing PTSD differs based on when the
traumatic event occurred. Immediately fol-
lowing the traumatic event, recommendations
include attending to safety, providing educa-
tion about trauma, accessing natural support
systems, and providing supportive counseling
(Ballenger et al., 2000; Foa, Hembree, Riggs,
Rauch, & Franklin, 2005; National Center
for PTSD, 2010). Psychological fi rst aid is a
research- and culturally informed model for
addressing these and related considerations
with children, adults, older adults, and fami-
lies in the wake of natural disasters or terror-
ism (Brymer et al., 2006). A detailed guide to
providing psychological fi rst aid is available
electronically at the National Center for PTSD
Web site (www.ptsd.va.gov/professional/manuals
/psych-fi rst-aid.asp).
Psychoeducation regarding trauma, nor-
mal responses, coping strategies, and, when
indicated, psychotherapeutic and psychophar-
macologic interventions may be particularly
useful in primary care. Neither single sessions
of critical incident stress debriefi ng nor ben-
zodiazepines are recommended as early in-
tervention strategies (Ballenger et al., 2004).
Ballenger and colleagues underscore the im-
portance of encouraging clients who may ac-
cess Internet information to pursue it from
reputable health-care or advocacy organiza-
tions rather than commercial, nonspecialist, or
chat room Web sites.
People experiencing high levels of dis-
tress with psychological or somatic symptoms
should be assisted with relief of symptoms;
CBT may be useful in reducing the risk of later
PTSD (Ballenger et al., 2004). If after three
or four weeks and two assessment sessions the
client continues to experience signifi cant dis-
tress and symptoms of PTSD, treatment that
includes either SSRIs, CBT, or a blend of these
strategies is recommended. Further research
JWBT514_ch08.indd 204JWBT514_ch08.indd 204 9/21/11 7:42 PM9/21/11 7:42 PM
http://www.ptsd.va.gov/professional/manuals/psych-first-aid.asp
http://www.ptsd.va.gov/professional/manuals/psych-first-aid.asp
Physical and Mental Health: Interactions, Assessment, and Interventions 205
is needed to address possible relapse upon
completion of treatment. People experiencing
persistent PTSD may benefi t from medication
regimens lasting one year or more. CBT may
help enhance gains during pharmacotherapy
and sustain gains after treatment concludes
(Ballenger et al., 2004).
As noted by the National Center for PTSD
(Hamblen, Schnurr, Rosenberg, & Eftkhari,
2010), available treatment guidelines are
unanimous in their support of CBT to assist
people experiencing PTSD. Exposure-based
therapy has been studied most and has strong
empirical support (Hamblen et al., 2010; IOM,
2008). A recent study of brief eclectic psycho-
therapy (BEP), which draws upon CBT and
psychodynamic therapies, found that BEP
outperformed a wait-list control group among
24 Dutch adults experiencing PTSD (Lindauer
et al., 2005). Although further research is
needed, the fi ndings suggest that this approach
holds promise for helping people experiencing
PTSD. Another approach with wide support is
eye movement desensitization and reprocess-
ing (EMDR) (Hamblen et al., 2010).
Recommended interventions with children
and adolescents experiencing PTSD include
trauma-focused psychotherapies that may
draw on CBT, psychodynamic, and attach-
ment theories; active involvement of primary
caregivers in the helping process; and attention
to resilience, functioning, and positive devel-
opment in addition to psychological distress.
Trauma-focused cognitive behavioral treat-
ment (TF-CBT) has the strongest evidence
base and is employed most frequently. Several
studies suggest that Cognitive-Behavioral In-
tervention for Trauma in Schools (CBITS), a
group model that is similar to TF-CBT, can be
adapted for use with diverse cultural groups
and can reduce symptoms of posttraumatic
stress and depression (AACAP, 2010; Ngo
et al., 2008). Psychoeducation with children
and caregivers, a component of TF-CBT, is
recommended to provide information about
PTSD and treatment, facilitate coping, and aid
parental efforts to support the child or adoles-
cent (AACAP, 2010; Cohen et al., 1998). Al-
though EMDR has some research support for
use with children, recent practice parameters
note signifi cant limitations of much of the cur-
rently available research. Finally, SSRIs com-
bined with psychotherapy may assist children
and adolescents experiencing PSTD. Other
medications including risperidone, clonidine,
propranalol, and morphine (used with children
experiencing burns in one study) also may
be helpful (AACAP, 2010). Further informa-
tion can be found online through the AACAP
(http://www.aacap.org/).
Substance use problems and mental health
concerns often co-occur. In general, integrated
treatment that addresses these concerns simul-
taneously is preferred (CSAT, 2005; NIDA,
2009). Promising treatment approaches and
the value of trauma-informed and trauma-
specifi c services are discussed in Chapter 17.
More detailed information can be found in two
electronically available treatment improve-
ment protocols (CSAT, 2005, 2009).
CONCLUSION
This chapter addresses myriad intersections
between physical and mental health in health-
care settings. In many ways, we end where we
started—the recognition of the complexity of
the mutual infl uences between physical and
mental health and ecological contexts. Al-
though the general information provided can
contribute to one’s evidence-based practice
knowledge, it is critical that any knowledge
base be informed by the unique preferences
and ecological contexts of the people served.
When crossing the many intersections between
physical and mental health in health-care set-
tings, it is important to proceed with engaged,
thoughtful attention to assessments and in-
terventions that refl ect competence to serve
individuals and families across culture, race,
ethnicity, SES, sexual orientation, spiritual
background, physical ability, gender, and age.
This engaged, thoughtful attention, in con-
junction with leading-edge, evidence-based
practice knowledge, will enable social work-
ers to provide the high-quality services that all
people deserve.
JWBT514_ch08.indd 205JWBT514_ch08.indd 205 9/21/11 7:42 PM9/21/11 7:42 PM
http://www.aacap.org
206 Health Social Work Practice: A Spectrum of Critical Considerations
SUGGESTED LEARNING
EXERCISES
Learning Exercise 8.1
Discuss the following questions: How do
physical and mental health conditions inter-
sect? How can attention to psychosocial and
ecological concerns infl uence health? What
challenges exist in addressing psychosocial
and ecological concerns in your practice set-
ting? What resources are available to assist
with these challenges? What is one step you
can take to improve your and your organiza-
tion’s ability to address intersections between
physical and mental health among the clients
you serve?
Learning Exercise 8.2
Discuss the following questions: How does
your cultural background infl uence your un-
derstanding of physical and mental health, ex-
pressions of emotion and pain, and appropriate
paths to help? How might these understand-
ings infl uence your direct practice with clients
and your interactions with the transdisci-
plinary health-care team? How do you address
culture in your direct practice with clients?
What are your strengths and areas for growth
in this area? How might you and your organi-
zation strengthen the cultural competence of
provided services?
Learning Exercise 8.3
Discuss the following questions: What are
key components of differential assessments in
health-care settings? How do assessments in-
form interventions? Either discuss or role-play
how you would engage in differential assess-
ment and subsequent intervention in the next
hypothetical cases.
Exercise 8.3.1
Darren is a 25-year-old man of African Ameri-
can background. He and his wife, Paula,
have been married for 2 years. Last year he
was diagnosed with HIV and hepatitis C. He
recently was prescribed a combination of pro-
tease inhibitors and interferon-alfa. He was
referred to the social worker by his physician
because his feelings of depression are caus-
ing him distress; he feels easily fatigued and
recently has missed several days of work be-
cause he “could not get going.” He is worried
about his job and about being able to pay his
bills if he does not go to work. He describes
having experienced feelings of sadness and
worry as a teenager, but prior to two months
ago, those feelings had not surfaced for several
years.
Exercise 8.3.2
Sandy is a 40-year-old woman of Native Amer-
ican background. She and her partner of 15
years, Racquel, have two children, ages 11 and
9. Sandy has experienced asthma since her early
20s; she entered the hospital yesterday with ex-
acerbated symptoms. While talking with you,
she describes intense fears about the possibil-
ity of another asthma attack. She also describes
that she has felt increased diffi culty breathing
over the past couple of weeks. She was so busy
with household and child-care responsibilities
that she did not have time to see the doctor to
adjust her medication regimen. She describes
feeling worried and restless when you meet
with her. She has no prior history of mental
health diffi culties or of mental health treatment.
Learning Exercise 8.4
Discuss the following questions: How might
you proceed in direct practice with Joseph,
who was described in the fi rst case example
in this chapter? What additional information
might you need to inform the assessment?
What goals might be collaboratively set with
Joseph? How might you intervene to address
these goals?
Learning Exercise 8.5
In small groups, defi ne mental health and
mental illness. Half of your group should de-
velop a principled argument in support of the
utility of the DSM-IV-TR and the other half
JWBT514_ch08.indd 206JWBT514_ch08.indd 206 9/21/11 7:42 PM9/21/11 7:42 PM
Physical and Mental Health: Interactions, Assessment, and Interventions 207
should develop a principled argument against
the utility of the DSM-IV-TR. Return to one
large group to discuss the strengths and limi-
tations of the DSM-IV-TR in direct social
work practice.
Learning Exercise 8.6
Discuss the following questions: What factors
are associated with suicide risk? What are key
ingredients of suicide assessment and inter-
vention? In pairs, role-play the assessment of
Georgina’s suicide risk in the next hypotheti-
cal case. What might short- and long-term in-
tervention involve?
Exercise 8.6.1
Georgina is a 45-year-old widowed woman
of Mexican American background who was
diagnosed with breast cancer 5 years ago. At
that time she had a mastectomy followed by
reconstructive surgery, radiation, and chemo-
therapy. She recently has been diagnosed with
a recurrence of cancer. Georgina describes a
deep sense of sadness and hopelessness about
this diagnosis. She fears feeling pain, going
through chemotherapy, and losing her hair
again and believes “it won’t do any good any-
way.” She also describes feeling alone. Al-
though her son and her daughter live nearby,
they are both busy with their families and
jobs. Georgina and her long-time companion
separated 6 months ago. Georgina feels over-
whelmed by her hopelessness, does not feel it
will get better, and says that she wants to die.
She has thought about notes that she would
write to her family to say good-bye, and she
has stored pain medication at her home that
she plans to take.
Learning Exercise 8.7
Discuss the following questions: What prac-
tice theories currently guide your clinical
work with clients? How do these theories fi t
with the evidence-based approaches addressed
in this chapter? What are the implications of
this fi t for providing optimal clinical services
to clients?
Learning Exercise 8.8
Discuss the following questions: What addi-
tional information would be helpful for you to
gain in order to enhance the effectiveness of
your assessments and interventions with peo-
ple experiencing physical and mental health
diffi culties?
Learning Exercise 8.9. Homework
You have been asked to conduct a comprehen-
sive assessment of your organization’s capacity
to effectively address co-occurring physical and
mental health concerns among its clients. This
assessment should consider the organization’s
strengths and challenges in this area. Although
the assessment will readily address the avail-
ability and accessibility of appropriate screen-
ing, assessment, and intervention, it also should
address other factors that infl uence clients’ ex-
periences in the organization. Based on your
comprehensive assessment, you are asked to
provide a thorough action plan that prioritizes
steps the organization can take to improve its ef-
fectiveness in serving clients with co-occurring
physical and mental health concerns.
SUGGESTED RESOURCES
Condition-Specifi c Organizations
American Cancer Society—www.cancer.org
American Heart Association—www.heart
.org/HEARTORG
Join Together—www.jointogether.org
National Alliance for the Mentally Ill—
www.nami.org
National Center for PTSD—www.ptsd
.va.gov/index.asp
National Child Traumatic Stress Network—
www.nctsn.com/nccts/nav.do?pid=hom
_main
Cultural Competence
Association of Black Cardiologists, Inc.—
www.abcardio.org
Cross Cultural Health Care Program—
www.xculture.org
JWBT514_ch08.indd 207JWBT514_ch08.indd 207 9/21/11 7:42 PM9/21/11 7:42 PM
http://www.cancer.org
http://www.heart.org/HEARTORG
http://www.jointogether.org
http://www.ptsd.va.gov/index.asp
http://www.nctsn.com/nccts/nav.do?pid=hom_main
http://www.abcardio.org
http://www.xculture.org
http://www.heart.org/HEARTORG
http://www.nctsn.com/nccts/nav.do?pid=hom_main
http://www.ptsd.va.gov/index.asp
208 Health Social Work Practice: A Spectrum of Critical Considerations
Cultural Competence in Care with Older
Adults—www.stanford.edu/group/
ethnoger
Offi ce of Minority Health—minorityhealth
.hhs.gov
www.stanford.edu/group/ethnoger
Evidence-Based Practice
Evidence-Based Practice in Health Care
-Cochrane Collaboration—www.cochrane
.org
National Registry of Evidence-Based Pro-
grams and Practices—www.nrepp.samhsa
.gov
Practice Guidelines—Consumers and
Patients—www.ahrq.gov/consumer
Practice Guidelines—National—www.guide
line.gov
U.S. Preventive Services Task Force—
www.ahrq.gov/clinic/pocketgd.htm
Gay, Lesbian, Bisexual, and Transgender
Resources
Gay and Lesbian Health—American Pub-
lic Health Association—www.apha.org/
about/Public+Health+ Links/LinksGay
andLesbianHealth.htm
Gay and Lesbian Medical Association—
www.glma.org
Parents, Families, and Friends of Lesbians
and Gays—www.pfl ag.org
Government Organizations
Agency for Health Care Quality and Re-
search—www.ahrq.gov
Bureau of Primary Health Care—http://
bphc.hrsa.gov
National Institute on Drug Abuse—http://
drugabuse.gov/nidahome.html
National Institute of Mental Health—www
.nimh.nih.gov
Offi ce of Minority Health—http://minority
health.hhs.gov
Substance Abuse and Mental Health Ser-
vices Administration—www.samhsa.gov
Medication Information
U.S. National Library of Medicine and Na-
tional Institutes of Health—www.nlm
.nih.gov/medlineplus/aboutmedlineplus
.html
Search Engines
Google Scholar—http://scholar.google.com
PubMed—www.ncbi.nlm.nih.gov/pubmed
Suicide
Suicide Prevention—National Institute of
Mental Health—www.nimh.nih.gov/health
/topics/suicide-prevention/index.shtml
Suicide Prevention—Substance Abuse
and Mental Health Services Adminis-
tration (SAMHSA)—National Suicide
Prevention Lifeline, 1-800-273-TALK;
h t tp : / /menta lhea l th . samhsa .gov /
suicideprevention/
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9
Social Work Practice and
Disability Issues
REBECCA BRASHLER
Disability bridges the study of health care and
the study of diversity within the social work
curriculum. People with disabilities generally
have a greater number of health-care encounters
than do people without disabilities; therefore,
they have a considerable stake in issues such
as access to medical care, insurance, quality of
care, and the delivery of health services (De-
Jong & Basnett, 2001). Disability studies, how-
ever, is a distinct, emerging fi eld in academia
that embraces the examination of humanities,
social science, and the history of people with
disabilities and is analogous to identity studies
or group studies, such as women’s studies, Af-
rican American studies, or Jewish studies. For
social workers, the study of disability often fo-
cuses on the psychology and the politics of dif-
ference—the stigma associated with those who
fall outside the mainstream as well as the ben-
efi ts found when differences are embraced and
societal barriers eliminated. This chapter pres-
ents a review of these issues for social workers
who provide counseling to individuals with dis-
abilities in a variety of settings.
Chapter Objectives
• Discuss the challenges faced when attempt-
ing to defi ne disability.
• Review disability models and discuss their as-
sumptions as well as their power to infl uence
our perspectives as social workers.
• Provide an overview of common challenges
social workers encounter when working
with clients who have disabilities.
• Explore societal values regarding difference
and disability that infl uence both personal
perspectives and clinical approaches.
DEFINING DISABILITY
Depending on one’s perspective, disability
may be viewed as a personal characteristic,
much like blue eyes, brown skin, or curly
hair—an identifying but not necessarily de-
fi ning feature. Others may view disability as
a disease or an abnormality—something to
be avoided at all costs; something that will
bring with it hardship, suffering, and stigma.
Still others may view disability as a source
of pride, an entrée into the rich world of dis-
ability culture and a disability community
that celebrates differences while empowering
people with disabilities to demand their rights.
When discussing disability, examining one’s
perspective becomes critical. Doing this can
be challenging because our perspective is ever
changing, infl uenced by life experiences, age,
and health as well as societal norms, histori-
cal context, and our own self-image as people
with or without disabilities.
To make matters more complex, there
is no universally accepted defi nition of the
word disability. Oxford’s Concise Medical
Dictionary defi nes disability as “a loss or
restriction of functional ability or activity as
a result of impairment of the body or mind”
(Martin, 2010). The Americans with Disabili-
ties Act defi nes a person with a disability as
a person who “meets at least one of the three
criteria: (1) having a physical or mental im-
pairment that substantially limits one’s ability
to perform one or more major life activities,
(2) having a record of such an impairment,
or (3) being regarded as having such an
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220 Health Social Work Practice: A Spectrum of Critical Considerations
impairment” (National Council of Disability,
1997, Appendix F).
The Social Security Administration (SSA)
will consider a person disabled if “you can-
not do work you did before and we decide
that you cannot adjust to other work because
of your medical conditions(s). Your disability
also must last or be expected to last for at least
a year or to result in death” (www.benefi ts.gov
/benefi ts/benefi t-details/4343).
The widely quoted defi nition of disability
by the World Health Organization (WHO) in
the International Classifi cation of Impair-
ments, Disabilities, and Handicaps (ICIDH)
distinguishes among the three related concepts
of impairment, disability, and handicap:
Impairments are defi ned as “disturbances of
body structures or processes.” A disability
“is any restriction or lack (resulting from an
impairment) of ability to perform an activity
in the manner or within the range considered
normal for a human being.” And a handicap
is “the social disadvantage individuals expe-
rience as a result of impairment or disability.”
(WHO, 1980)
This defi nition was revised subsequently by
WHO’s ICIDH-2 classifi cation, which places
further emphasis on the role of environmental
or social factors in “personal activity limita-
tions” and “social participation restrictions.”
Because disability identifi cation is so elu-
sive, attempts to count the number of people
with disabilities in our communities are “sub-
ject to methodological bias and the distortion
of the cultural lens” (Fujiura & Rutkowski-
Kmitta, 2001, p. 72). The U.S. Census Bureau
(2010) indicates that 19% of the population 5
years and older have some type of disability.
Global estimates abound in popular literature,
and often people with disabilities are referred
to as the nation’s “largest minority” or as “a
minority that we all, if we live long enough,
join” (Shapiro, 1994, p. 13). Some of us may
never have a disability ourselves yet will spend
a large portion of our lives caring for and lov-
ing a family member with a disability. Further-
more, disability happens to people at different
times; some will be born with a disability
while others will acquire one through illness or
accident. Many people will spend most of the
time as individuals without a disability only to
experience alterations in functioning as they
enter the fi nal years of their lives.
Disabilities can be sorted by impairment
type (e.g., mobility impairments, cognitive im-
pairments, sensory impairments), or they can
be viewed on a continuum from mild to mod-
erate to severe, depending on the limitations
they cause. Some disabilities are unnoticable
by others while others are immediately obvi-
ous. Complex typologies have been developed,
such as John Rolland’s, which classify disabil-
ities according to onset, course, outcome, and
incapacity (Rolland, 1994). Although they are
of interest to clinicians, most people with dis-
abilities seem largely indifferent to these sta-
tistics, defi nitions, and classifi cation schemes.
What may matter most to people with disabili-
ties is that they are fully included in schools,
communities, and workplaces and that they are
viewed by others as people with value. The
perspective that others embrace dramatically
shapes the lives of people with disabilities.
HISTORICAL CONTEXT
In the early 19th century, many in the West-
ern world viewed disease and disability in the
same way that they viewed poverty and di-
saster—as “a visitation of a just God upon a
frail and erring person . . . a direct consequence
of undesirable personal or social behavior”
(Trattner, 1974, p. 73). It is not surprising,
given this view, that people with disabilities
were historically shunned, institutionalized,
and feared. What may be surprising are how
these same views, left unchallenged and fu-
eled by social Darwinism, led to the eugen-
ics movement in the United States during the
early 20th century (Braddock, 2002; Pfeiffer,
1999). American physicians during this pe-
riod routinely facilitated the deaths of babies
with birth defects and sterilized institutional-
ized residents with intellectual disabilities so
that their “inferior genes” would not weaken
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Social Work Practice and Disability Issues 221
our society. The true horror of the eugenics
movement became evident in Nazi Germany
during the 1930s and 1940s, when hundreds
of thousands of German citizens with disabili-
ties were murdered after being “unworthy of
life” (Lifton, 1986, p. 128). This program of
euthanasia carried out by physicians under the
guise of medical treatment often is seen as the
prelude to the mass killings of Jews in concen-
tration camps during World War II.
Throughout the 20th century in the United
States, people with disabilities, when not
locked away in large, poorly funded institu-
tions, often were exploited as curiosities, pa-
raded before the public for amusement and
profi t in circuses and freak shows that re-
mained popular well into the 1950s and 1960s
(Thomson, 1996). Given this backdrop, the ad-
vent of religious and secular organizations that
presented people with disabilities as objects of
pity and deserving of charity seemed compara-
tively humane. However, the era of telethons
and poster children offered a view of people
with disabilities only as victims of tragic cir-
cumstances. Telethons and other charity fund-
raisers created sympathy by manipulating the
fears of their viewers in order to get them to
“open their wallets” (Shapiro, 1994, p. 13).
The viewers’ sense of vulnerability could be
relieved by sending money that would fund
a cure for the unfortunate children—the only
acceptable solution, for rarely were images of
adults with disabilities shared with the public.
Today we fi nd ourselves in innovative times
as the disability rights movement replaces the
charity movement and people with disabilities
claim their right to equal opportunities and full
participation in all aspects of society (Bick-
enbach, 2001). Through hard-fought legisla-
tive battles, the grassroots independent living
movement, and individual efforts to change
attitudes, the prevailing view of people with
disabilities has changed dramatically in recent
years. People with disabilities, previously seen
as “the embodiment of misery and lost oppor-
tunity,” now claim pride in their identities,
willingly embrace a disability subculture, and
force us to question our preconceived ideas of
capacity and value (Trent, 2000, p. 214). These
changing views of disability challenge social
workers and other mental health profession-
als to reevaluate their roles and reassess tradi-
tional thoughts about treatment.
DISABILITY MODELS
Medical Model
The medical model of treatment can be illus-
trated clearly by following a person who wakes
up with acute abdominal pain. The person may
go to the emergency room, where she becomes
a “patient”—someone in need of care from an
expert medical professional. The transforma-
tion from “person” to “patient” during hospital
admissions was described by Goffman (1961)
in his study of institutions as a “leaving off
and a taking on, with the midpoint marked by
physical nakedness” (p. 18). The physician
completes an assessment, usually consisting
of a physical examination and history, some-
times augmented by further tests to determine
the problem or pathology. The physician then
arrives at a diagnosis, which in turn leads to a
course of treatment or intervention. Often dur-
ing the intervention phase the patient is asked
to give up a fair amount of autonomy and con-
trol to health-care professionals. This is easily
seen in a patient hospitalized for an appendec-
tomy who is instructed on what to eat, what
to wear, when to get out of bed, and when to
interact with visitors. In the best scenario, the
treatment leads to a cure or a resolution of
the problem, returning the patient to an exis-
tence without pain or dysfunction. In the case
of abdominal pain diagnosed as appendicitis
and leading to an appendectomy, the medical
model seems to provide a satisfactory process
for delivering care.
For individuals with chronic illnesses
and disabilities, however, the medical model
holds some troubling challenges. The diagno-
sis of a chronic or permanent condition, one
not amenable to cure, seems to trap the indi-
vidual in the “patient” or “sick” role forever.
As a perpetual patient, people with disabili-
ties may never be well and are forever stuck
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222 Health Social Work Practice: A Spectrum of Critical Considerations
in a position of reduced status and power.
Furthermore, because the intervention phase
is prolonged for months or years, the person
with a chronic illness or disability is asked to
give up autonomy to the “expert” health-care
professional for an undetermined period, a po-
sition that may foster feelings of dependency
and helplessness. In addition, the failure of the
person with a chronic illness or disability to be
cured—a failure to be “a good patient”—often
elicits unexpected and negative reactions from
physicians and caregivers. Health-care profes-
sionals treating patients who cannot be cured
may become disheartened and retreat behind
an impersonal technical approach (Halpern,
2001). Professionals also may abandon incur-
able patients in order to protect themselves
from feelings of failure and vulnerability and
may move on to treat others who are more
likely to have successful outcomes (Gans,
1983; Gunther, 1994).
The diagnostic phase of the medical model
also holds some troubling risks for people with
disabilities. Diagnostic labels and words used
to describe people with disabilities often have
served to stigmatize them. As Zola writes,
people with disabilities are “de-formed, dis-
eased, dis-ordered, ab-normal, and most tell-
ing of all . . . in-valid” (Zola, 1982, p. 206).
Diagnoses such as “imbecile,” “moron,” and
“Mongoloid idiot” were used historically to de-
scribe people with cognitive impairments. The
self-fulfi lling prophecy and low expectations
associated with some diagnoses encouraged
institutionalization for many people who later
would prove capable of living successfully in
the community. It is critical to note that the
desire for differential diagnosis schemes and
classifi cation systems for physical and men-
tal diseases has never been driven by patient
needs. The goal of these diagnostic manuals
is to “enable clinicians and investigators to di-
agnose, communicate about, study, and treat
people with various [mental] disorders” (APA,
1994, p. 4). For example, the introduction to
the Diagnostic and Statistical Manual of Men-
tal Disorders (DSM-IV) cautions readers that it
is not a “classifi cation of people” but a “clas-
sifi cation of disorders that people have” (p. 7).
Although this distinction is an important one,
it offers no assurance that clinicians and others
will not view the individual differently once
the label or diagnosis has been determined.
The labeling process appears to be inevitably
stigmatizing, and in the case of chronic illness
and disability, the stigma it creates may last a
lifetime.
In the medical model, disability resides
within the individual—the model assumes
that there is something wrong with the per-
son. People with disabilities are deviant or
abnormal. They may be missing body parts,
lacking in function, unable to perform typical
tasks, and incapable of going through life like
their able-bodied peers. This model focuses
exclusively on the pathology and, some would
argue, reduces people to laundry lists of ail-
ments while ignoring their value and humanity.
Rehabilitation and Biopsychosocial
Models
The fi eld of rehabilitation medicine evolved in
the mid-1900s and adopted a multidisciplinary
team approach with physical therapists, oc-
cupational therapists, speech pathologists,
social workers, vocational counselors, and
psychologists joining physicians and nurses to
treat people with disabilities (Albrecht, 1992).
Rehabilitation professionals realized that
the medical model did not necessarily fi t the
needs of their patients and began to ask if “in
chronic illness and disability, is it the profes-
sional who treats the illness, or is it the patient
(or the patient and his family) who actually
carries out the routine treatment day after
day” (Anderson, 1975, p. 19). The rehabilita-
tion model of treatment acknowledges that the
patient is not a passive recipient of care but
an active member of the treatment team and
that the goal of rehabilitation is not a cure but
restoration of the best possible physical and
psychological functioning. Furthermore, in
rehabilitation medicine, there was a distinct
shift from focusing solely on the individual
with a disability to focusing on the individual,
the family, and the community in which that
individual resided. Rehabilitation in this sense
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Social Work Practice and Disability Issues 223
embraced the biopsychosocial model of health
care (Engel, 1977).
The biopsychosocial model expanded
thinking beyond the narrow confi nes of bodily
pathology and greatly shifted the focus to psy-
chological and family issues. However, this
shift in focus sometimes led to a tendency to
pathologize patients’ psychological makeup
along with their bodies. It is not diffi cult to fi nd
literature that promotes the belief that physical
disability invariably infl icts horribly disruptive
and negative psychological consequences and
leads to a whole host of personality disorders.
For example, a review of the literature reveals
that patients with arthritis
have been said to have weak egos; to repress
hostility; to be compliant and subservient;
to be potentially psychotic; to be depressed,
dependent, conscientious, masochistic, emo-
tionally labile, compulsive, introverted, con-
servative, perfectionistic, moody, nervous,
worried, tense, overconcerned about personal
appearance, and prone to express psycho-
pathology in physical symptoms. (Shontz,
1970, p. 112)
For years, the mind-set among many mental
health professionals seemed to be that patho-
logical bodies led to pathological personali-
ties, and they set out to analyze the “disabled
personality” in spite of having limited re-
search data to back up their assumptions. Far
from freeing patients from the stigma of la-
bels, early applications of the biopsychosocial
model may have added to the stigma of dis-
ability by labeling patients fi rst physically and
then psychologically.
Relatives, particularly mothers, of indi-
viduals with disabilities also found themselves
being labeled and diagnosed as the focus of
treatment widened to encompass the entire
family system. The classic example of this
phenomenon may be Bruno Bettleheim’s the-
ory, later disputed, that autism was actually a
psychological disturbance arising from cold
and detached mothering (Bettleheim, 1967).
Others wrote about “narcissistic mothers” of
children with asthma who were unable to be
“consistently giving” or of the “overprotective
mothers” of hemophiliacs whose denial and
guilt feelings were “manifested in severe, un-
disguised anxiety” (Travis, 1976, p. 178).
The biopsychosocial model leads one to
think about the interactions between the per-
son with a disability and the person’s family,
community, and social system. It highlights
the connection between biological and psy-
chological functioning. It also challenges
some underlying principles of traditional med-
ical thinking, allowing people with disabilities
to be seen as active participants in their care
and to have legitimate goals and needs even
in the absence of a cure. It suggests that peo-
ple with disabilities are much more than their
functional limitations, but it remains at heart a
medical paradigm, one that is prone to misin-
terpretation and not completely free from the
dangers of labeling.
Social Model and Minority Group
Paradigm
The social model of disability shifts the focus
from the impairment within an individual or
family system to the environment in which the
individual interacts. Advocates for the social
model challenge traditional beliefs that physi-
cal and cognitive differences are inherently
bad and generally lead to a lifetime of suffer-
ing. According to this model, “the culprit is
not the biological, psychic, or cognitive equip-
ment but the social, institutional, and physical
world in which people with impairments must
function—a world designed with the charac-
teristics and needs of the nondisabled majority
in mind” (Asch, 2001, p. 300).
Using the medical model approach, a child
who uses a wheelchair and cannot enter a
school with a fl ight of stairs at its entrance
is seen as suffering from a “mobility impair-
ment.” Furthermore, the medical model would
classify her mobility impairment as having a
neurological basis (spinal cord injury) with
a predictive course (static), a traumatic onset
(motor vehicle accident at the age of 5 years),
and a distinct prognosis (permanent but not
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224 Health Social Work Practice: A Spectrum of Critical Considerations
terminal). The child’s inability to walk cre-
ates her problem and limits her ability to go to
class with “normal” children, leading to a host
of social and psychological diffi culties. Using
the social model, however, the same child in
that situation is seen as healthy and whole but
socially excluded and unable to exercise her
rights to a free public education by a system
unwilling to accommodate her needs. The
focus moves from the person to the environ-
ment and in the process forces us to examine
social norms, issues of discrimination, and po-
litical concerns.
It can be diffi cult to switch frameworks
and think about disability as a purely socially
constructed concept. We are taught to think
about health and wellness as ideal states and
to view all variation from the norm as un-
desirable. Often anthropological studies can
help dissect medical model assumptions. In
her book Everyone Here Spoke Sign Lan-
guage, Groce (1985) writes about hereditary
deafness on Martha’s Vineyard in the 18th
and 19th centuries. Because the island was
populated by large numbers of individuals
with hearing impairments, the general popu-
lation was fl uent in Island Sign Language,
which eliminated the typical communication
barriers. Individuals with deafness often were
sent off the island to school and therefore re-
ceived more extended formal education, mak-
ing them more literate than their neighbors
and generally fi nancially secure. They were
completely integrated into society to the point
that oral historians had diffi culty remember-
ing who had deafness and who did not. In
essence, the disability disappeared because it
was no longer seen as a limitation or a sig-
nifi cant characteristic. The study led Groce to
conclude that if disability “is a question of
defi nition, rather than a universal given, per-
haps it can be redefi ned, and many of the cul-
tural preconceptions summarized in the term
‘handicapped,’ as it is now used, eliminated”
(Groce, 1985, p. 108).
The social model helps us recognize par-
allels between people with disabilities and
people of other recognized minority groups
defi ned by race, gender, sexual orientation, or
nationality. Like other minority groups, people
with disabilities often are judged solely by a
single characteristic. They are segregated in
nursing homes and institutions, they receive
separate and unequal education, and they have
limited access to jobs, which, in turn, leaves
them with less power and money than those
with majority status. People with disabilities
have to fi ght to protect their most basic civil
rights and in this regard truly share the experi-
ences of other oppressed groups.
Critics of the social model, however, argue
that it ignores the real and often distressing as-
pects of living life with limitations and illness.
It is diffi cult for some to view their disability
as a neutral characteristic or based solely in
society when they are struggling to live with
chronic pain, caring for a loved one who is
minimally conscious, or attempting to adjust
to the progressive loss of physical and cog-
nitive abilities that accompany, for example,
amyotophic lateral sclerosis (ALS, Lou Geh-
rig’s disease) or Alzheimer’s disease. In gen-
eral, we recognize that “all of the problems
associated with disability cannot be entirely
eliminated by any imaginable form of social
arrangements” (Shakespeare, 2006, p. 56).
INTEGRATING MODELS FOR
SOCIAL WORK PRACTICE
Undeniable tensions exist among these differ-
ent models, and whether one truly can fi nd a
synthesis between medical and social frame-
works is not clear (Shakespeare, 2006; Turner,
2001). For example, it is diffi cult to advocate
for medical advances or searches for a cure, as
the actor Christopher Reeve did after his spi-
nal cord injury, without sometimes offending
those working in the arena of disability rights.
Some fear that “Reeve, perhaps inadvertently,
bolstered the case against disability rights by
offering a story of the disability experience
that concurred with those who insisted that
what people with severe disabilities faced
were personal, medical problems, that what
they needed was compassion—and a cure”
(Johnson, 2003, p. 129).
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Social Work Practice and Disability Issues 225
However, it may be equally closed-minded
to think that everyone with a disability will
or should approach their situation from the
same perspective or that we should make no
attempt to mitigate the medical conditions
that lead to disability as we advocate for so-
cial changes (Kirschner, 2000). Some well-
adjusted individuals will choose to celebrate
their disabilities and view their disability as a
“central element of their identity” while others
who seem equally well adjusted may choose
to minimize their differences and shy away
from the disability rights movement (Glastris,
1997). The challenge for many social work-
ers, particularly those who practice in medical
facilities, is to balance the skill set needed to
negotiate their practice setting while remain-
ing ever cognizant of the lessons learned from
years of social oppression, institutional dis-
crimination, and attitudinal barriers.
CLINICAL PRACTICE ISSUES
AND THE ROLE OF THE
SOCIAL WORKER
Initial Counseling and Framing
the Disability
Social workers in many settings will be called
on to provide support and counseling for in-
dividuals who are encountering disability for
the fi rst time. Whether counseling parents who
have learned that their unborn child will have
a congenital disability, meeting a child who
recently was diagnosed with juvenile diabetes
at school, seeing a patient in the intensive care
unit who has sustained a spinal cord injury and
will not walk again, or helping a family in a
private medical practice whose grandmother is
disabled from a stroke, the primary challenge
is to frame the event in a way that will promote
a positive adjustment.
It is important to recognize that social
workers are rarely, if ever, capable of simply
relaying facts and communicating a diagnosis
without revealing their own bias. The profes-
sionals involved in presenting disability news
to individuals must appreciate that the words
they choose, the tone they adopt, their affect,
their body language, and their message inter-
twine to create a subtle but sometimes lasting
infl uence. The parents of a child with Down
syndrome might be told:
I’m afraid we have some very bad news
about your child. He has Down syndrome.
This is an incurable genetic disorder due to a
mutation in one of his chromosomes. He has
many of the characteristic physical features
associated with this syndrome, including epi-
canthal folds, a sloping forehead, a fl at nose,
and short limbs. Children with this disorder
are also moderately to severely mentally re-
tarded and sometimes have other associated
medical complications. We will need to con-
sult with several specialists before you leave
the hospital to make sure that appropriate
care can be provided for him.
Alternatively, the parents could be told:
We just saw baby Elizabeth and have to say
that she is quite beautiful and wonderfully
alert! She looks perfectly healthy, but we
recommend that she see another physician
because she has Down syndrome and may
have some associated medical problems.
Children with Down syndrome typically lead
very normal lives, go to regular school, and
are capable of developing very close rela-
tionships. However, she also may have some
special learning needs and physical delays,
so it will be important that you have an op-
portunity to talk with other parents who have
children with Down syndrome in order to
fully understand some of the programs and
services that can help Elizabeth.
Although neither introduction to Down syn-
drome is ideal, complete, or without bias, the
fi rst clearly frames the disability as a tragedy
due to a host of abnormalities and requiring
a future of specialized medical care. The em-
phasis is on the child’s differences, and the
explanation focuses solely on medical con-
cerns. The second presentation frames the
disability as a manageable set of challenges
that will be faced by a beautiful child and her
loving parents. The emphasis is on the child’s
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226 Health Social Work Practice: A Spectrum of Critical Considerations
relationship to others, and the identifi ed ex-
perts needed for consultation are other families
who have experienced life with a child who
has Down syndrome.
During the framing process, which can en-
compass multiple conversations, social work-
ers and other professionals must realize that
they carry preconceived ideas about what life
with a disability is like. The literature on at-
titudes toward disability clearly indicates that
health-care providers often harbor extremely
negative views about disability, including
beliefs that death is preferable to life with
extensive disability and that incurable dis-
ability causes irremediable suffering. In fact,
research studies have found quality of life to
be only weakly correlated with level of im-
pairment and that people with disabilities re-
peatedly rate their quality of life higher than
others would predict they might (Bach & Til-
ton, 1994; Craig, Hancock, & Dickson, 1994;
Fuhrer, Rintala, Kare, Clearman, & Young,
1992; Gerhart, Koziol-McLain, Lowenstien, &
Whiteneck, 1994; Longmore, 1995; Sprangers
& Aaronson, 1992). In light of this knowledge,
it is imperative that social workers who engage
in initial counseling closely examine their own
perceptions.
One of the most valuable commodities
during the framing process is access to a
nonjudgmental counselor who is willing to
provide information based on “the views of
a wide range of health professionals involved
in caring for people affected by the condition,
together with the views of individuals and
families affected by the condition” (Marteau &
Anionwu, 2000, p. 126). It seems critical that
at some point during the framing process peo-
ple with newly defi ned disabilities have an op-
portunity to interact with others who actually
live with similar conditions. Support groups,
peer counselors, or access to fi rst-person nar-
ratives about life with disabilities can be in-
valuable when constructing a value-neutral
frame. The overriding message always must
be that, although the individual now belongs
to a specifi c diagnostic class, he or she remains
a “distinct and idiosyncratic human,” one
who will not by virtue of a single diagnosis
share all the characteristics of others with the
same genetic mutation, physical limitation, or
chronic illness (Berube, 1996).
Providing adequate time and a safe envi-
ronment during these sensitive counseling
sessions is also vital. Too often, initial conver-
sations are hurried and take place in hospital
hallways or school classrooms. There is often
a rush to send the family on to the next expert
or to refer them immediately for additional
examinations and further treatment. The clini-
cian’s own discomfort in the face of disability
may be what leads to this kind of truncated
interaction when, in fact, what individuals
need most is the “opportunity to ask their own
questions in their own way; to go over diffi –
cult, often insoluble, problems in an unhurried
manner; and to feel supported” (Harper, 2000,
p. 59). One mother’s advice to professionals in
similar situations should be heeded carefully:
“Do not disappear. Do not leave the room.
Make eye contact. Look me in the eye and ask
me what you can do to help me deal with this”
(Berube, 1996, p. 38).
Responses to Disability
Therapists over the years have searched for
concrete models that predict and explain the
experience of people as they encounter dis-
ability and adapt to changes in appearance or
altered functioning. Various models of adjust-
ment to disability can be found in the litera-
ture, but it is important to recognize that there
is limited empirical data in this area and no
universally accepted theory regarding disabil-
ity adjustment.
Stage models of adjustment to disability
are derived from Elisabeth Kübler-Ross’s
work with terminally ill patients with can-
cer (Kübler-Ross, 1969). These models sug-
gest that individuals confronted with a new
diagnosis of disability experience predictable
stages or reactions, such as shock, denial,
anger, bargaining, or depression, and that the
desired end point is a fi nal stage of adaptation
or acceptance. The value of stage theories is
that they can depathologize the process of
adjustment by emphasizing that even healthy
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Social Work Practice and Disability Issues 227
and ultimately well-adjusted individuals may
experience periods of disruption in func-
tioning when fi rst confronting a disability.
However, in order to have any utility, stage
theories cannot be taken literally and must ac-
count for individual differences. The adjust-
ment process is rarely linear, and individuals
with disabilities have both good and bad days
along their journey. Not everyone will pass
through the stages in the same order; some in-
dividuals may skip a stage completely while
others will linger longer than expected in a
particular stage without experiencing a nega-
tive outcome (Gunther, 1969; Livneh, 1992;
Olkin, 1999).
Grief models compare reactions to disabil-
ity with the process of bereavement following
a death. Mourning often is defi ned as the ad-
aptation to loss (Worden, 1991) and can have
relevance to the loss of a limb, the loss of func-
tion, or the loss of the dream for a healthy child.
The primary difference between bereavement
and adaptation to disability is that death by its
very nature is fi nite while disability is ongo-
ing or chronic. The concept of chronic sorrow,
or periods of grief that resurface from time to
time (often associated with key developmen-
tal milestones), acknowledges this distinction.
Although on the surface the idea of chronic
sorrow may seem depressing and pessimis-
tic, it does serve to caution professionals not
to become impatient during the adjustment
process and not to think of prolonged adjust-
ment periods as evidence of neurosis. It also
challenges professionals “to abandon the sim-
plistic and static concept of . . . acceptance,” at
least acceptance that will be reached through a
handful of therapy sessions (Olshansky, 1970,
p. 22). Others have remarked that the losses as-
sociated with disability, particularly those that
accompany disabilities like severe brain injury
and late-stage Alzheimer’s disease, are more
ambiguous and complex than those that sur-
round death (Boss, 2000). In these situations,
the individual survives but often has lost the
essence of the person he had previously been.
There is a death of sorts, but one that often
is devoid of any comforting rituals and that is
largely unrecognized by society.
Crisis intervention models emphasize the
temporary disruption in functioning and emo-
tional stability that is created whenever one
experiences an event that is perceived to be a
threat to one’s life or the life of a loved one or
that has the potential to become overwhelming
(Aguilera & Messick, 1978). This framework
has some utility when thinking about disability
because it values the perception of the person
involved in the crisis. A young couple learn-
ing that their toddler has been diagnosed with
cerebral palsy may indeed feel that they are
in the midst of a crisis, while a single par-
ent who chooses to bring home a child with
a similar disability from an adoption agency
may view the event as joyful. A professional
violinist who loses a fi nger in an accident may
feel that she is facing a crisis of great mag-
nitude while a machinist may view the same
injury as minor and unimportant. A crisis can
be defi ned only by the person, not by others
who may have a different perspective of the
same experience. Because crises are viewed
as turning points or opportunities for growth,
this framework also reminds the client and the
therapist that people frequently emerge from
crisis with improved coping skills and greater
feelings of competence. The notion that people
actually benefi t from adversity is one that can
be very reassuring to people experiencing dis-
ability challenges (Elliot, Kurylo, & Rivera,
2002; McMillen, 1999).
Regardless of which adjustment model
frames their work, it remains critical that so-
cial workers not become so distracted by the
disability adjustment process that they fall into
the trap of blaming the disability for any and
all diffi culties an individual experiences. In-
dividuals with disabilities experience marital
problems, life-adjustment issues, child-rearing
challenges, and emotional problems that may
bring them to a therapist’s offi ce. Assuming
that disability is the root cause of any of these
diffi culties is dangerous. This assumption may
be particularly lethal for situations in which
individuals with disabilities present with sui-
cidal ideation and are treated less aggressively
because of beliefs that anyone in their physical
condition rationally would prefer to be dead.
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228 Health Social Work Practice: A Spectrum of Critical Considerations
People with disabilities turn to suicide in re-
sponse to the same triggers as people without
disabilities, and “there is no evidence of a
unique death-seeking dynamic associated with
disability that . . . is somehow more rational
than ‘ordinary’ suicide” (Gill, 2004, p. 185).
In 1986, Elizabeth Bouvia, a woman in her
20s with cerebral palsy and arthritis, requested
that a California hospital admit her and allow
her to die by keeping her sedated while she
stopped her gastric feedings. Although indi-
viduals without disabilities with suicidal in-
tentions are routinely hospitalized and treated
for their emotional distress, the courts in this
case ruled that Ms. Bouvia should be allowed
to facilitate her death because her life with
disabilities was regarded as intolerable (Asch,
2001). They were completely willing to over-
look the fact that this young woman had lived
successfully with her disability since birth but
recently had experienced multiple losses, in-
cluding the death of her brother, a miscarriage,
a divorce, and withdrawal from her master’s-
level graduate school program in social work.
The presence of a disability is often only one
of many factors that will prompt an individual
to question the value of life and exhibit signs
of depression, hopelessness, and anxiety.
The most useful of adjustment perspectives
are those that can account for the paradoxical
feelings and ideas that most individuals have
toward disability (Larson, 1998). They ac-
knowledge that an individual can hold simul-
taneously seemingly contradictory thoughts
about life with differences. Individuals do not
really move through stages; they live in two
or more stages at the same time. They do not
experience distinct, easily defi ned periods of
grieving; distress about losses may come and
go in unpredictable patterns for years. Often
people with disabilities experience a series of
crises rather than a single event followed by
adjustment. One can be absolutely devastated
about not being able to walk yet simultaneously
hopeful about the future. One can truly love a
child unconditionally yet simultaneously pray
that she will be cured miraculously. One can
bitterly grieve for the lost capacity to talk yet
simultaneously be grateful to be alive. One can
be angry about the barriers created by society
yet simultaneously be joyful about newfound
resourcefulness in the face of those barriers.
One can completely dismiss a physician’s prog-
nosis as overly pessimistic yet simultaneously
engage in prescribed therapies. Adaptation to
disability is never simple, it is rarely black and
white, and, in this sense, it does not lend itself
well to any single theory or model.
There are several critical points for clini-
cians to remember when assessing adjustment
and thinking about structuring interventions:
• When confronted by disability, individu-
als are likely to encounter a period of dis-
rupted functioning that, in and of itself, is
not pathological or abnormal. Repeatedly
normalizing the process may be the single
most important service a social worker can
provide.
• There is no right or wrong way for patients
to approach disability adjustment.
• Each individual will perceive his or her dis-
ability differently, and it is the individual’s
perceptions, not ours, that are most relevant.
Social workers must listen carefully to their
clients’ perceptions, inform them that their
perceptions may be fl uid, and expose them to
other perspectives when appropriate.
• People’s perceptions of their disability
change over time, and people often hold
paradoxical views regarding disability.
• The adaptation process cannot be defi ned
in terms of weeks or years. It may ebb and
fl ow throughout one’s lifetime. Just as in-
dividuals adjust to different stages of life,
individuals adjust to different stages of life
with a disability. Social workers should
remain available well beyond the initial
adjustment phase yet not associate this
availability with the notion that our clients
will never be psychologically well.
• Individuals may experience periods of de-
pression or anxiety that require treatment
at any point during their experience with
disability, but therapists cannot assume that
these symptoms are caused solely by the
disability; rather, they may be related to and
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Social Work Practice and Disability Issues 229
interwoven with other life issues or be the
result of frustration over societal barriers.
• People with disabilities often have a history
of unsatisfactory health-care encounters and
may be distrustful or disillusioned about the
benefi ts of seeking treatment. Be prepared to
review this history with them to learn about
their experiences, build rapport, and create a
solid therapeutic alliance.
• There is no idealized state of fi nal adapta-
tion or acceptance with a disability, just as
there is no idealized state of adjustment to
life without a disability.
DISABILITY AND ETHICS
Some of the most pressing ethical issues of
our times involve disability on some level.
Physician-assisted suicide, stem cell research,
genetic engineering, health-care resource al-
location, and end-of-life care are just a few
examples. Examining a landmark case in de-
tail can help tease apart how the disability
perspective alters one’s thinking about ethi-
cal dilemmas and may lead to asking differ-
ent questions and possibly drawing different
conclusions.
On February 25, 1990, Terri Schiavo had
a cardiac arrest resulting in severe hypoxic-
ischemic encephalopathy. Fifteen years later,
her name and face became widely known as
physicians, lawyers, journalists, and the gen-
eral public discussed the many complex and
controversial issues that surrounded her situ-
ation and the choice of removing her from
life support. Her private family confl ict be-
came painfully public, and political lines were
drawn based on “right to life” and “right to
die” slogans. Legal and legislative history was
made when the case was debated in Congress,
and journalists struggled to summarize some
of the most complex ethical issues into sound
bites suitable for the nightly news. In the midst
of this activity, many were surprised to fi nd
that disability advocates were among those
deeply invested in the outcome of the pro-
ceedings that were taking place to determine
if Schiavo’s feeding tube could be withdrawn.
Furthermore, the disability perspective brought
a unique way of viewing the feeding tube that
was keeping Schiavo alive—one that others
may not have considered previously (Brashler,
Savage, Mukherjee, & Kirschner, 2007).
The prevailing medicolegal view is that the
“right of competent patients to refuse unwanted
medical treatment, including artifi cial hydra-
tion and nutrition, is a settled ethical and legal
issue” (Quill, 2005, p. 1631). Furthermore,
the courts have ruled that this right is not lost
when a patient becomes incompetent as long
as there is clear and convincing evidence that
withdrawal of the artifi cial feeding is consis-
tent with the patient’s prior wishes. The Catho-
lic church and many others, however, viewed
the removal of Schiavo’s feeding tube as inhu-
mane. Pope John Paul II stated that there was
a “moral obligation” to provide tube feedings
to patients in vegetative states (Vatican, 2004).
Those who adhered to this viewpoint felt that
removal of the feeding tube could be consid-
ered euthanasia by omission and worried that
Schiavo would “starve to death.”
A third view, articulated by individuals
with disabilities, was that Schiavo’s feeding
tube was simply a disability accommodation,
not much different from a wheelchair for an
individual who cannot walk. People with
chronic conditions who use feeding tubes on
a daily basis because of swallowing problems
often begin to think of the tube as a tool or an
implement similar to a fork. The tube gradu-
ally becomes devoid of medical meaning and
simply allows them to ingest food effi ciently
and safely. For example, wheelchairs may
seem frightening to individuals who walk, and
feeding tubes may seem equally foreign to
those who ingest food orally. But the insider
perspective of those who use these items rou-
tinely is dramatically different. Some individu-
als with disabilities felt a kinship to Schiavo,
not only because they shared her dependence
on adaptive equipment but also because of the
judgments being made about her quality of
life. Some worried that if it was acceptable to
remove Schiavo’s feeding tube, it also would
be permissible to remove feeding tubes from
people who were still conscious or who used
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230 Health Social Work Practice: A Spectrum of Critical Considerations
them for other reasons. They feared that “we
would be starting down a slippery slope where
we might eventually wind up removing tubes
from people who are profoundly disabled but
not in a permanent vegetative state” (Shep-
herd, 2009, p. 12).
The Schiavo case had many observers think-
ing carefully about that slippery slope and try-
ing to determine for themselves what makes
life worth living and when they would want
life-sustaining treatments to be withdrawn.
The disability concerns embedded in this case
became intertwined with profound questions
about the value of life and our obligation to
protect vulnerable individuals in society.
ADVOCACY
Most social workers provide not only counsel-
ing but concrete case management services to
clients with disabilities. Counseling and ad-
vocacy efforts ideally are provided in an inte-
grated fashion rather than being packaged as
discrete functions. Counseling an individual
experiencing the recent onset of a disability
that prevents a return to work without provid-
ing information and advocacy around income
maintenance would be fruitless, just as assist-
ing an older person with a nursing home place-
ment without addressing the issues of losses
associated with aging and illness would be
irresponsible. Throughout the United States,
there are confusing arrays of fragmented fi nan-
cial, legal, educational, medical, and family
services available to people with disabilities,
many of which have complex application and
eligibility requirements. Social workers in
private practice, in schools, and in medical
settings must educate themselves about the
community resources available to their clients
to assist them to navigate the overwhelming
maze of disability services that are available.
Disability can bring devastating fi nancial
burdens in three areas: (1) hospital/medical
expenses, (2) loss of income or earning po-
tential for the individual and her family care-
giver, and (3) additional community/living
expenses. Medicare, Medicaid, managed care,
indemnity, worker’s compensation, veterans’
benefi ts, and other forms of health insurance
may cover medical expenses related to disabil-
ity, but people often are unfamiliar with their
coverage, uncertain how to apply for cover-
age, and unaware of what types of medical
care may not be paid for under their policies.
In cases of catastrophic injuries, fears about fi –
nancial ruin may be very real. People who are
uninsured and underinsured are certain to have
concerns about access to quality health care.
For many people, managing the overwhelming
amount paperwork required to fi le a claim or
navigate the bureaucracy of a large managed
care company is more than they can handle
while in the midst of a medical crisis. Social
work assistance in this area is invaluable.
Income maintenance may be available from
Social Security disability insurance, supple-
mental security income, the Veteran’s Admin-
istration, crime victims’ compensation, private
disability insurance, and worker’s compensa-
tion. These programs are complex, and ser-
vices sometimes are diffi cult to secure. When
returning to work, individuals with a disabil-
ity also may encounter challenges related to
employer biases, disincentives built into the
system, and infl exible benefi ts. Knowing both
entitlement eligibility and legal protections is
important for social workers in this area.
Community living expenses include the
cost of transportation, affordable/accessible
housing, and attendant care services. Advo-
cating for better transportation, housing, and
attendant care consumes many local disability
rights groups, which understand that access to
these basic services frequently mean the dif-
ference between being able to live freely in the
community and having to live in an institution
or nursing home. The politics that surround
community living programs are complex, and
a bias toward the institutionalization of people
with disabilities in our current government
programs remains. Even when it may cost less
to care for people with a disability in the com-
munity, they may end up in a nursing home
because they cannot piece together the support
systems needed to allow for independent liv-
ing. Attendants are diffi cult to fi nd and keep
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Social Work Practice and Disability Issues 231
because the job often pays less than other non-
skilled jobs in the community and often does
not include health-care coverage or other ben-
efi ts. Family members willing to provide care
in their homes often do so at the expense of
their own careers and at the risk of their own
health. They remain an invisible source of free
labor that goes unrecognized and unaccounted
for by traditional economic measures (Gould,
2004).
The right to free and appropriate public
education for children regardless of the type
or extent of their disability has been secured
in the United States through passage of Pub-
lic Law 94-142 (1975), later amended and
renamed the Individuals with Disabilities Act
in 1990. Before this law was enacted, it was
estimated that “at least 1 million children in
the United States were being excluded from
public schools because of their disabilities”
(Switzer, 2003, p. 61). With this law, parents
became participants in planning for their chil-
dren’s education through the use of Individual
Education Programs, and schools were man-
dated to place children in the “least restrictive
environment.” However, these government
regulations also led to a complex system of
registration, case study evaluations, multidis-
ciplinary conferences, placement protocols,
and procedural safeguards. Parents often feel
the need for an advocate to help them through
the process, particularly if there are disagree-
ments about their child’s needs. Controversies
still surround the move from no education to
separate schools to mainstreaming in regular
schools with separate classrooms and fi nally to
full inclusion. Social workers can help parents
and children in their quest to secure the most
appropriate and inclusive educational program
available in their community.
Advocating for clients who have disabili-
ties—whether they face discrimination in the
workplace, diffi culties accessing health care,
or problems researching available commu-
nity services—is a critical role for most so-
cial workers. During this process, however,
social workers must remain sensitive to the
very real power differential that invariably ex-
ists between the professional and the client
seeking services, particularly when the client
is a member of a vulnerable and oppressed
group. Social service professionals who work
with vulnerable groups often are seen as exten-
sions of the bureaucracies that employ them or
gatekeepers who must be manipulated in order
to receive needed services. This has been par-
ticularly true for many people with disabilities.
Patients with disabilities are not “cases,” and
they do not need to be “managed.” They need
information and support at times, but “help is
useful only when it leads to empowerment”
(Charlton, 1998, p. 5). True empowerment for
people with disabilities, as with other minority
groups, will be realized only when they reach
positions of status in hospitals, universities,
legislative bodies, and governmental agencies
in meaningful numbers. Making sure that peo-
ple with disabilities represent themselves and
assume a primary role in shaping the services
they require must be the ultimate goal of social
workers whenever we act as advocates.
FINDING MEANING
The search for meaning is a journey than can
take many years. It is a universal process in
which every person engages, but for people
with disabilities, it may have some added poi-
gnancy and importance. Many mental health
professionals have noted the need to shift
our focus from examining the parameters of
patients’ physical conditions or analyzing cli-
ents’ psychological makeup to helping them
clarify their values in an effort to create posi-
tive meaning. Trieschmann (1999) writes:
I have become increasingly dissatisfi ed with
the conceptual models of traditional west-
ern medicine and psychology because they
do not offer me comfortable viewpoints or
strategies that are really helpful in teaching
people to fi nd happiness. When people do
fi nd happiness, it derives from a reevaluation
of what is important in their lives, usually ac-
companied by a deepening of their spiritual-
ity and usually accomplished by themselves
without help from professionals. (p. 32)
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232 Health Social Work Practice: A Spectrum of Critical Considerations
The work of Victor Frankl, a psychiatrist
who developed a therapy model he called logo-
therapy, is particularly helpful when thinking
about the process of fi nding meaning. Frankl
wrote extensively about his experiences in a
concentration camp during World War II and
how survival became dependent on fi nding ac-
ceptable meaning for an unacceptable atrocity.
He wrote that if “one cannot change a situation
that causes his suffering, he can still choose his
attitude” (Frankl, 1984, p. 148). Frankl and oth-
ers emphasize that the meaning people create
must be uniquely theirs based on their own life
experiences, religion, culture, family structure,
worldviews, and belief systems. Health-care
professionals can facilitate this search for mean-
ing, but it will be different for each individual.
First-person narratives from people living
with a disability illustrate how varied their in-
dividual meanings can be, yet they all seem to
refl ect changing perspectives, a reassessment
of values, or a process of “sifting out the trivial
from the important” (Wright, 1983, p. 191).
One father takes comfort in the randomness of
the universe by saying:
I’ve come to believe that there’s no design for
tragedy nor a design whereby the sins of the
past return to punish the sinner. . . . This means
that there’s no method to the madness and sad-
ness found here on Earth. Life is as random
and unpredictable as the shape of the next
snowfl ake, and we all must take our chances
if we are to stick. (Seerman, 1995, p. 89)
Others fi nd meaning in religious terms:
I have a higher power, my God, who is with
me always, even though I may not feel that
presence all the time. I know that I can make
it; I know that I can keep up hope; I know
that even if things do not turn out as they
should, I am not alone. . . . What more could
a person want? (Kahlback, 2001)
Another father writes about the essence of
humanity:
Peering into the crib of a child with disability
in the predawn moonlight can bring tears of
truly unconditional love, love that will not be
based on the report card performance, scores
as a star quarterback or excellent perfor-
mance as a trial lawyer. This love is for who
the person is, for their qualities, their trials
and for the inner strength they must develop
to take their place. (Kappes, 1995, p. 25)
A writer with a facial difference due to cancer
surgery struggles to tease out the difference
between internal and external images. She
once thought:
I was my face, I was ugliness . . . the one
immediately recognizable place to point to
when asked what was wrong with my life.
(Grealy, 1994, p. 7)
She later writes:
I experienced a moment of the freedom I’d
been practicing for behind my Halloween
mask all those years ago. As a child I had
expected my liberation to come from get-
ting a new face to put on, but now I saw it
came from shedding something, shedding
my image. (Grealy, 1994, p. 222)
A mother of a son with autism who lives and
works on a university campus writes:
To have an autistic child is to learn to love
difference, the humanity that runs far deeper
than the success and achievement we are all
taught to value. . . . I was forced to confront
my deepest prejudices. . . . Living all my adult
life in an academic environment, I had never
been forced to consider that intellect is not
the same as merit, it is not the same as virtue.
It is a gift of nature as surely as any other.
(McDonnell, 1993, p. 324)
A man with a spinal cord injury fi nds meaning
by shifting his focus from the negative to the
positive and says:
Before I was paralyzed, there were ten thou-
sand things I could do, ten thousand things
I was capable of doing. Now there are nine
thousand. I can dwell on the one thousand or
JWBT514_ch09.indd 232JWBT514_ch09.indd 232 9/21/11 7:42 PM9/21/11 7:42 PM
Social Work Practice and Disability Issues 233
concentrate on the nine thousand I have left.
And of course the joke is that none of us in
our lifetime is going to do more than two or
three thousand of these things in any event.
(Corbet, 1980, p. 32)
An important social work role is to help peo-
ple formulate a meaning that works for them, a
meaning that brings them to a place where the
disability becomes understood and therefore
less frightening. American society places a
premium on youth, athleticism, independence,
power, wealth, beauty, and achievement. Help-
ing people look beyond these ubiquitous values
and treasure the spirit that they and their loved
ones bring to our world, a spirit uniquely theirs
that transcends the mundane issues of how one
walks or talks or eats or looks or thinks, can be
tremendously rewarding work.
SUGGESTED LEARNING
EXERCISE
This learning exercise helps students explore
their personal values related to people with
disabilities and facilitate an open discussion of
societal ideals.
Learning Exercise 9.1
Students are told that they comprise the board
of directors of a small community hospital.
Their community has been hit with a new
illness that is 100% fatal—usually within a
few hours. The only successful treatment is
an injection of a new drug that has just been
developed and cures the patient almost im-
mediately. Unfortunately, the drug is in short
supply, and diffi cult decisions have to be
made regarding which patients will be treated
and which patients will be left to die from
the infection. The hospital currently houses
10 patients who have the infection and are in
dire need of treatment. The hospital has just
received a shipment of fi ve doses of the medi-
cation. The board members must decide which
of the patients, based only on the next profi les,
will get the injection.
1. A 65-year-old nun who has spent her entire
life in a secluded convent and has devoted
herself to a life of prayer and poverty.
2. A 44-year-old African American, sin-
gle, foster mother who has adopted fi ve
hard-to-place children with disabilities
and is raising them on her own.
3. A 24-year-old male model who recently
was voted one of the 10 most beautiful
people in the United States. He is single
and has just been cast in his fi rst fi lm.
4. A 5-year-old Hispanic American boy who
is blind, deaf, and mentally retarded. He
is well adjusted and lives with his mother,
grandmother, and six siblings in a loving
and secure home.
5. A 23-year-old woman who is working on
her MSW and is engaged to be married.
She sustained a spinal cord injury in a car
accident 10 years ago. She uses a wheel-
chair for mobility and is independent in
self-care.
6. A 77-year-old Nobel Prize–winning re-
searcher who is working on a cure for
arthritis and has made several important
breakthroughs in recent months.
7. A 10-year-old Caucasian boy who likes to
play soccer and video games. He lives in
the suburbs with his parents and his sister
in an upper-middle-class home. He has
learning disabilities and sometimes strug-
gles with impulse control/anger manage-
ment.
8. A 50-year-old accomplished concert pia-
nist. He is moody, temperamental, and a
self-described loner. Never married, he
has few friends and lives for his music.
9. A 40-year-old beloved coach of the U.S.
Women’s Olympic Softball team, which
is preparing to compete in the next Olym-
pics in 18 months.
10. A 21-year-old African American teen cur-
rently incarcerated on drug charges. He is
due to be paroled in 6 months. While in jail,
he completed his general equivalency di-
ploma and started an innovative program to
help teens stay out of gangs.
JWBT514_ch09.indd 233JWBT514_ch09.indd 233 9/21/11 7:42 PM9/21/11 7:42 PM
234 Health Social Work Practice: A Spectrum of Critical Considerations
After the exercise, the group should list the de-
ciding factors that drove their choices. Is age
more important than lifestyle? Is intellectual
capacity more important than artistic ability?
Did patients without obvious disabilities fare
better than others? Is past behavior more criti-
cal than future potential? What value do we
place on the patient’s capacity to relate to oth-
ers? Assuming that the board of directors will
have its choices scrutinized by the community
at large, will any of its decisions meet with
community disagreement or outrage? Why or
why not?
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http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fi amc_en.html
http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fi amc_en.html
http://www.prnewswire.com/news-releases/us-census-bureau-facts-for-features–20th-anniversary-of-americans-with-disabilities-act-july-26-94914034.html
http://www.prnewswire.com/news-releases/us-census-bureau-facts-for-features–20th-anniversary-of-americans-with-disabilities-act-july-26-94914034.html
http://www.prnewswire.com/news-releases/us-census-bureau-facts-for-features–20th-anniversary-of-americans-with-disabilities-act-july-26-94914034.html
http://www.prnewswire.com/news-releases/us-census-bureau-facts-for-features–20th-anniversary-of-americans-with-disabilities-act-july-26-94914034.html
237
10
Communication in Health Care
SARAH GEHLERT
Good communication is central to the provision
of effective health care. If patient and provider
are able to communicate in a way that leads to
the accurate exchange of information, health
outcomes will be enhanced in several ways.
Diagnosis is more accurate, for example, when
social workers and other health-care providers
are able to establish rapport with patients, take
cues from them, and pose questions in a way
that is understandable. Likewise, when patients
are able to express their symptoms and concerns
in a way that can be understood by providers, it
is more likely that their conditions will be diag-
nosed and any problems assessed with accuracy.
Treatment plans based on those assessments will
be more effective because they will better refl ect
patients’ unique health-care and social needs. It
therefore is easy to agree with Fisher’s (1992)
assessment that the best scientifi c knowledge in
the world is insuffi cient if communication be-
tween patient and provider is fl awed.
In this chapter, the goal of health communi-
cation is defi ned as obtaining and disseminat-
ing the maximum amount of information with
the minimum amount of distortion and dis-
comfort for the communicators. The chapter’s
purpose is to describe (a) the negotiations in-
herent in health-care encounters, (b) common
sources of communication error, and (c) ways
in which communication can be enhanced in a
variety of clinical settings.
Chapter Objectives
• Convey the structure and dynamics of the
clinical encounter between patient (or patient
system) and provider in health-care settings.
• Convey how health beliefs impact health
communication.
• Determine how group differences by race,
ethnicity, gender, socioeconomic status,
religion, and geography can affect health
beliefs.
• Discuss the dynamics of health-care teams.
• Outline evidence-based methods for im-
proving how health messages and informa-
tion are communicated to patients and their
families and how information is solicited
by health-care providers.
• Outline evidence-based methods for im-
proving how patients and families present
information to and question health-care
providers.
• Distinguish interpretation from translation.
• Provide guidelines for accurate translation
of health-care information between
patients and providers in health-care
settings.
This chapter is designed to be used in con-
cert with other chapters in this book, especially
those on physical and mental health (Chapter
8), chronic illness (Chapter 20), and alternative
health (Chapter 12). Active cross-referencing
of these chapters by readers will optimize their
learning of how communication can be en-
hanced to maximize health-care outcomes.
STRUCTURE AND
DYNAMICS OF THE
CLINICAL ENCOUNTER IN
HEALTH CARE
In a seminal article on communication in health
care, Kleinman, Eisenberg, and Good (1978)
described the clinical encounter between
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238 Health Social Work Practice: A Spectrum of Critical Considerations
patient and provider as a negotiation between
two cultural constructions of reality that yields
clinical reality. The authors defi ned clinical re-
ality as the interactions between patients and
providers that occur during the health-care
encounter and the outcomes that accrue from
those interactions. Outcomes may include: (a)
the development of treatment plans; (b) adher-
ence to those plans; (c) health consequences,
such as reduction in asthma attacks or sei-
zures; and (d) social consequences, such as a
child’s ability to return to school.
Kleinman et al. (1978, 2006) noted that pa-
tients bring to their encounters with providers
sets of beliefs, expectations, values, and goals
that are culturally constructed in the sense
that they are determined by each individual’s
life experiences. The authors note that illness
is shaped by cultural factors governing the
perception, labeling, explanation, and evalu-
ation of discomforting experiences, the latter
of which are analogous to symptoms. These
processes are embedded in complex family,
social, and cultural nexuses. Prior experience
with the illnesses of family members and how
these illnesses were managed, for instance,
has a signifi cant effect on the ways in which
individuals approach or deal with their own
illnesses and those of their families. These
prior experiences can be as subtle as a child
overhearing her parents talk about the serious
illness of a family member.
As described by Rolland in Chapter 13
on families and chronic illness, families vary
greatly in their approaches to illness. They
vary in the extent to which and how they work
together to deal with the management of an ill-
ness, how they work with providers, and how
they communicate with one another and others
about the illness. The parents of a child with
epilepsy in one family, for instance, may not
talk about the condition within the family, may
attempt to hide seizures from others, and may
take a passive role with the child’s physician.
Another set of parents might organize the fam-
ily around the child’s seizures, talking freely
about the condition, with all members respon-
sible for monitoring symptoms, becoming ac-
tive in advocacy groups, and joining the child
at clinic visits. A third family may have inte-
grated the child’s seizures into family life so
that the condition is neither hidden nor domi-
nates activities. Each of these three approaches
to dealing with a child’s epilepsy likely would
have a unique effect on the lifetime responses
to illness of the child with epilepsy and his
siblings. Determining an individual’s family
illness history thus can be a powerful tool for
health social workers because it provides valu-
able insights into how prior experiences might
have shaped the individual’s cultural construc-
tion of reality.
Pachter (1994) says that patients’ cultural
constructions of reality almost never differ
entirely from the biomedical constructions
held by health-care providers but instead vary
on a continuum between lay or ethnocultural
constructions on one end and biomedical con-
structions on the other. In fact, most patients’
cultural constructions of reality represent
combinations of “ethnocultural beliefs, per-
sonal and idiosyncratic beliefs, and biomedical
concepts” (p. 690). The farther that patients’
constructions diverge from those of providers,
the greater the likelihood that communication
problems will occur.
Providers, too, bring to clinical encounters
sets of beliefs, expectations, values, and goals
that are shaped by their own unique life experi-
ences as well as the professional cultures into
which they have been socialized (Hall, 2005).
Professional cultures, such as those of physi-
cians, nurses, health social workers, and physi-
cal therapists, entail shared language, rules of
behavior, dress, and ways of acknowledging
status. Rosenthal (1993, p. B1) described the
socialization of medical students, for instance,
in this way: “[F]rom the beginning, medical
students are told that they are in school to learn
to think like a doctor. And when they emerge
4 years later, many will have adopted a profes-
sional demeanor such that they not only think
like one, but talk like one, and dress like one,
too.” Some have gone so far as to suggest that
providers’ socialization and culture may con-
tribute to health disparities in the United States
(Institute of Medicine [IOM], 2002; van Ryn
& Fu, 2003).
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Communication in Health Care 239
Health Beliefs and Communication
Health beliefs are components of cultural con-
structions of reality that guide health behavior
and communication. They are guided by cul-
ture and dictate (a) how symptoms are identi-
fi ed and which are considered appropriate to
take to providers, (b) how patients understand
the causes and treatment of their illnesses, (c)
what patients expect of providers, and (d) what
personal and moral meanings patients ascribe
to their illnesses and how they address ques-
tions such as “Why me? What did I do to de-
serve this?” (Weston & Brown, 1989, p. 77).
Leventhal (1985) adds that the natural his-
tory of illnesses can shape patients’ health be-
liefs and constructions of reality in much the
same way that culture shapes health beliefs.
This is particularly true with chronic illnesses.
Patients’ awareness and understanding of ill-
ness increase through time as they are exposed
to health information and become more famil-
iar with how their bodies respond to chronic
illness. This heightened awareness can infl u-
ence how symptoms are evaluated and in which
situations patients deem it appropriate to seek
formal treatment. A patient who initially was
frightened by symptoms and sought treatment
frequently may in time feel capable of illness
self-management as she becomes more famil-
iar with the pattern of her symptoms.
From a global perspective, illness is seen as
due either to natural causes, such as infection
or accident, or to supernatural causes, such as
spirit aggression, sorcery, witchcraft, or mysti-
cal retribution (Erasmus, 1952; Foster, 1976;
see Table 10.1). Although supernatural causes
may seem exotic to many, they are part of the
health belief systems of many residents of
the United States, especially those who were
born outside the country. In 2000, 1 in 10 U.S.
residents (28.4 million) was born outside the
country (Lollock, 2001). According to data
from the 2000 U.S. census (Spector, 2004),
51% were from Latin America, 25.5% from
Asia, 15.3% from Europe, and 8.2% from
other areas; these fi gures do not include undoc-
umented immigrants. Although their numbers
are diffi cult to estimate, around 10.9 million
undocumented immigrants were thought to be
living in the United States in the fi rst quarter of
2009 (Camarota & Jensenius, 2009).
Health beliefs, like cultural constructions
of reality in general, are learned through so-
cialization. They are often long-held cultural
beliefs that remain with a group, especially
one that is cut off from mainstream society for
socioeconomic, religious, geographic, or po-
litical reasons. Religious and political groups
might, for example, have reason to hold on to
certain beliefs and to eschew mainstream con-
structions. Jehovah’s Witnesses, for example,
hold strong beliefs against the sharing of blood
products and come into confl ict with health-
care providers who prescribe transfusions
during surgery or after accidents. A number
of high-profi le court cases have resulted from
situations in which parents who are Jehovah’s
Table 10.1 Four Theories of Supernatural Causation by Region of the World
Theory Defi nition Region
Mystical retribution Acts in violation of some taboo or moral injunction causing
disease indirectly
Africa
Sorcery Ascription of impairment of health to the aggressive use of
magical techniques by a human being, either independently or
with the assistance of a specialized magician or shaman
North America
Spirit aggression Aspiration to the direct, hostile, arbitrary, or punitive action of
some malevolent or affronted supernatural being, such as nature
spirits, disease, demons, departed ancestors, or ghosts
East Asia, insular Pacifi c,
South America
Witchcraft Ascription of impairment of health to the suspected voluntary or
involuntary aggressive action of a member of a special class of
human beings believed to be endowed with a special power and
propensity for evil
Circum-Mediterranean
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240 Health Social Work Practice: A Spectrum of Critical Considerations
Witnesses refused to allow their children to
receive transfusions prescribed by physicians.
Orthodox Jews who observe strict dietary
laws may come into confl ict with staff mem-
bers when admitted to hospitals that are not
equipped to provide kosher meals.
Geography can act to maintain traditional
health beliefs by limiting access to mainstream
sources. Rural areas of the United States are
characterized by lower population density, fewer
specialized health-care providers, and greater
distance between health-care facilities (Coward
& Kout, 1998). Because exposure to mainstream
culture is likely to be limited to media sources,
fewer mainstream health messages are received,
and traditional health beliefs are less likely to be
challenged. Christakis and Fowler (2007) exam-
ined a densely interconnected social network of
12,067 people assessed repeatedly from 1971 to
2003 through the Framingham (Massachusetts)
Health Study and found evidence that obesity
spreads through person-to-person social ties.
A network member’s chances of becoming
obese during a certain period of time increased
57% if that person had a friend who became
obese during the same period of time. Similar
results were found for the spread of alcohol-
consumption behavior (Rosenquist, Murabito,
Fowler, & Christakis, 2010).
Residents born outside the United States
are more likely than their native-born counter-
parts to live in the center of cities and to live
in poverty (Lollock, 2001). They, like many
native-born residents of inner cities, often live
in homogeneous groups with strong within-
group social network ties. These strong ties
are benefi cial to health in that they provide
opportunities for support from other group
members. If others in the group are similarly
impoverished, however, they might not be able
to provide fi nancial support in times of need
or assist with travel to health-care facilities.
Also, strong within-group ties are often at the
expense of weak ties to mainstream culture,
which represent important sources of health in-
formation (Pescosolido & Levy, 2002). Women
with weak ties to mainstream culture, for ex-
ample, are much less likely to receive informa-
tion on breast self-examination and where to
obtain free mammograms. Parents with weak
ties to mainstream culture are less likely to
know about health-care funding opportunities
for their children (see Chapter 5 in this book).
In her book Walkin’ over Medicine (1993),
Loudell Snow describes the impact of patients’
health beliefs on their health behavior, observed
during her work at a community health clinic
serving predominantly African American pa-
tients in Lansing, MI. Clinic providers were
concerned about nonadherence to prescribed
medications, such as medications to lower blood
pressure (called antihypertensive medications).
Through interviews with clinic patients, Snow
found that a number of patients included anemia
under the rubric of “low blood.” Many patients
in this group had discontinued their medica-
tions after providers made statements such as
“Congratulations, you’ve brought your blood
pressure down. It’s low now!” What seemed to
providers to be a healthy state (i.e., low blood
pressure among those prone to hypertension)
seemed unhealthy to patients, causing them to
discontinue taking their medications.
In another example, Snow (1993) was con-
sulted on high rates of unplanned pregnancy
among young African American women. As
part of clinical practice, women were being
prescribed oral contraceptives and trained in the
rhythm method of contraception. Through in-
terviews, Snow determined that the two means
of birth control confl icted with the beliefs of a
number of women that menstruation was im-
portant to health because it allowed toxins and
pollutants to be eliminated that might other-
wise cause ill health. Oral contraceptives were
viewed as deleterious to health because they
diminished menstrual fl ow. The rhythm method
similarly was seen as dangerous to health be-
cause of its prescription that sex should occur
near menstruation, a time when women felt that
their bodies were particularly open and thus
more vulnerable to toxins and pollutants. Ac-
cording to the group’s health beliefs, the days
most distant from menstruation were safest for
sex because the body was least open. This was
problematic because days distant in time from
menstruation are when women ovulate and are
most likely to become pregnant.
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Communication in Health Care 241
In both of these examples, a clinical reality
could be negotiated that addressed the incon-
gruities between the health beliefs of patients
and providers. In the case of antihypertensive
medications, the task was as simple as identify-
ing the two meanings of “low blood” and ad-
vising providers to use instead “normal blood
pressure” or “good blood pressure.” In the case
of confl icting views of birth control, methods
that neither restricted menstrual fl ow, as was the
case with oral contraception, nor involved hav-
ing sex during menstruation, when women con-
sidered the body to be particularly vulnerable
(e.g., the rhythm method), were emphasized.
Numerous empirical studies have supported
the link between health beliefs and success of
behavior-change efforts. Patterson, Kristal,
and White (1996) measured the baseline be-
liefs about the association between diet and
cancer of a population-based sample of 607
people in Washington state. They found those
with stronger beliefs signifi cantly decreased
their percentage of fat consumed and signifi –
cantly increased their fi ber intake. In a second
study, low-income, rural, African American
women who did not believe themselves to be
at risk for breast cancer, whether they had pos-
itive family histories or not, were less likely to
get mammograms than women who believed
themselves to be at risk (West et al., 2003).
ILLNESS VERSUS DISEASE
The clinical encounter can be seen as a set of
transactions or negotiations between patients
and providers. Success is determined at least
partly by the extent to which the two can reach
a measure of congruence. In general, the more
dissimilar the cultural constructions of real-
ity of the two, the more diffi cult will be the
negotiation. A gross example of dissimilarity
between the patient’s and the provider’s cul-
tural constructions of reality is that patients
experience illness while physicians treat dis-
ease. Disease is defi ned by Kleinman and
colleagues (2006) as malfunctioning or mal-
adaptation of biologic and psychophysiologic
processes in the individual. Helman (1985)
says that a disease construction reduces ill
health to physicochemical terms and overem-
phasizes biological (as opposed to social or
psychological) information in reaching a di-
agnosis. Illness, however, represents personal,
interpersonal, and cultural reactions to disease
or discomfort (Kleinman et al., 2006). Accord-
ing to Helman (1985), illness is a wider and
more diffuse concept that is patterned by so-
cial, psychological, and cultural factors.
Disease is determined objectively while ill-
ness is determined subjectively. Thus, disease
can exist in the absence of illness, for example,
when a patient has a biological abnormality of
which she is not aware. A woman could, for
instance, have a malignant ovarian tumor in
the absence of symptoms. Likewise, illness
can occur in the absence of disease. Common
complaints such as headache and gastroin-
testinal distress may be very problematic for
patients and cause disruption in social func-
tioning, such as the ability to work or go to
school, yet occur in the absence of any abnor-
mality in the structure or function of body or-
gans or systems.
Illness conditions that are specifi c to cer-
tain cultures, such as susto in Mexico (Rubel,
1977), koro in Malaysia, and pibloktoq among
Eskimos (Foulks, 1972; see Table 10.2), fall
Table 10.2 Culture-Specifi c Syndromes
Syndrome Description Cultural Origins
Koro An episode of sudden, intense anxiety in which the penis recedes into the
body and that may cause death
Malaysia
Pibloktoq
(Arctic hysteria)
Sudden-onset bizarre behavior that is short lived and thought to be
induced by fright
Circumpolar regions
Susto Illness arising from fright in which the soul is thought to leave the body Mexico
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242 Health Social Work Practice: A Spectrum of Critical Considerations
under the rubric of illness rather than disease.
Although these culture-specifi c syndromes
are considered real by the culture groups that
recognize them, providers do not universally
recognize them. They are not included in the
International Statistical Classifi cation of Dis-
eases and Related Health Problems (ICD), a
compendium of internationally recognized
diseases published by the World Health Or-
ganization. The ICD, now in its tenth revision
(ICD-10; World Health Organization, 2003),
is the international standard diagnostic classi-
fi cation used for monitoring the incidence and
prevalence of diseases worldwide and allow-
ing the compilation of mortality and morbidity
statistics by member nations.
That illness and disease are not directly
correlated with one another can be a source of
miscommunication and lead to nonadherence
to medical treatment recommendations. Con-
ditions such as brain cancers are considered se-
rious diseases by physicians, yet in their early
stages, they may cause less distress and social
disruption for patients than muscle spasms of
the lower back. In addition, patients with the
same degree of organ or system pathology (i.e.,
disease) report different levels of well-being
and social dysfunction (i.e., illness). In other
words, some patients with rheumatoid arthritis
might report adequate well-being and are able
to perform their own activities of daily living
(ADLs) while others at the same stage of the
disease might report that their well-being is
diminished markedly and that they require as-
sistance to perform ADLs.
Optimal patient and provider communica-
tion can infl uence health outcomes in a num-
ber of direct and indirect ways (Street, Makoul,
Arora, & Epstein, 2009). Clinical encounters
in which providers focus on disease and pa-
tients focus on illness are likely to result in
frustration, mistrust, and less favorable health
outcomes because providers may feel that their
recommendations are not being given due con-
sideration by patients and patients may per-
ceive that their complaints are not being taken
seriously. A poignant real-life example comes
from a book entitled The Spirit Catches You
and You Fall Down (Fadiman, 1997). This
book describes non-English-speaking Hmong
immigrant parents of a young girl with epi-
lepsy who viewed her illness through the eyes
of their culture, namely as the fl ight of her soul
from her body. They treated the condition ac-
cording to their beliefs, with animal sacrifi ces
and traditional remedies. The Merced County,
CA, physicians who were treating the child fo-
cused on her condition as a disease (epilepsy)
requiring fi ne-tuned dosages of prescribed
anticonvulsant medications. Both sides were
operating with the best intentions and compas-
sion, yet their inability to communicate with
one another and subsequent mutual mistrust
and blaming resulted in a situation in which
the two sides could only watch impotently as
the child’s situation deteriorated to the point of
serious disability.
Social workers who are aware of incon-
gruent understandings between patients and
providers can help to remedy the situation by
pointing out the discrepancy, interpreting each
side’s frustration to the other, and helping to
establish a clinical accord. Setha Low (1984,
p. 13) wrote: “[O]ften the social worker is the
only person who can see both sides of the cul-
tural picture—the bureaucratic, mainstream, and
the ethnic or subcultural perspective—and from
this vantage point may be the single most criti-
cal actor in the provision of care and informa-
tion.” This is congruent with Richard Cabot’s
notion of social workers as translators in health-
care environments (see Chapter 1 in this book).
A list of questions developed by Kleinman
(1980) can serve as a valuable tool for social
workers and other providers in their efforts to
elicit patients’ health beliefs. These questions
include:
• What do you think caused your problem?
• How severe do you think the problem is?
• Do you think that its course will be short
or long?
• What diffi culties is the problem causing for
you?
• About what are you most concerned?
JWBT514_ch10.indd 242JWBT514_ch10.indd 242 9/21/11 7:43 PM9/21/11 7:43 PM
Communication in Health Care 243
• What treatment do you think is warranted
for your problem?
• What benefi ts do you expect to receive
from the treatment?
A vivid example of what might occur if
a provider is not aware of a patient’s health
beliefs comes from the work of Young and
Flower (2001, p. 91). A young man named
Pete who worked in a fast-food restaurant
went to the emergency room after injuring
his ankle. He assumed that his ankle was
fractured because he was in a great deal
of pain and heard the same cracking sound
that he had heard when he had fractured his
ankle in the past. His greatest concern was
that he would lose his job if he missed work.
Pete lost trust in the physician when he was
told that his ankle was sprained rather than
fractured and that the only possible treat-
ment was to stay off it for 5 days. He had
framed the problem very differently from
the physician and had given the situation
different meaning. Because his cultural con-
struction of reality weighted serious sprains
and fractures differently, he assumed that he
would not be granted sick leave from his em-
ployer if his ankle were sprained rather than
broken. The clinical situation deteriorated
rapidly with the physician, who had given
Pete no opportunity to tell his story, perceiv-
ing Pete as being uncooperative and wanting
to get off work for no reason. Pete left the
encounter assuming that the physician had
made a mistake. He promptly threw away
the Ace bandage that he had been given for
his sprain and returned to work. This left his
ankle prone to reinjury and his view of phy-
sicians compromised. The physician’s view
of patients as malingerers was reinforced.
Social Workers on Health-Care Teams
Although written over 20 years ago, Cleora
Roberts’s (1989) observations on the strain in-
herent in the professional relationship between
social workers and physicians still rings true
today. Roberts suggested that an appreciation
of this strain and the necessary tension that it
produces could catalyze successful collabora-
tion between social workers and physicians.
The fi ve areas of major difference in perspec-
tives are that:
1. A physician’s goal is to save lives while the
social worker’s focus is more on quality
than quantity of life.
2. Physicians are more likely to base decisions
on objective data, such as laboratory tests,
while social workers consider patients’ sub-
jective interpretations of events.
3. Physicians are likely to develop treatment
plans based on the assumption that the goal
of treatment is improved health and the lon-
gest possible life, while social workers are
trained to encourage self-determined treat-
ment goals.
4. Social workers are more likely than physi-
cians to feel comfortable in dealing with
patients’ emotional problems.
5. Physicians are more likely to take charge on
health-care teams while social workers are
accustomed to collaboration.
A few studies have examined social worker
and physician collaborations. Mizrahi and
Abramson (1985) examined self-reports of
collaborations between 50 social worker–
physician pairs and found the two professions
to have similar perspectives in many cases.
Social workers were more likely to identify
family problems with adjustment to illness
and problems with availability of and access to
resources than were their physician collabora-
tors. This fi nding is congruent with Roberts’s
observation that social workers are more likely
than physicians to consider quality rather than
quantity of life and less likely to focus on
objective data.
Turner (1990) describes social work in
health care as a transcultural resource. He im-
plicates three phenomena in Western medicine
as particularly culture specifi c and value laden
and thus potential obstacles to health commu-
nication. Each of the three confl icts with the
JWBT514_ch10.indd 243JWBT514_ch10.indd 243 9/21/11 7:43 PM9/21/11 7:43 PM
244 Health Social Work Practice: A Spectrum of Critical Considerations
values of social work. The “scientifi cation”
of medicine is a trend toward addressing the
somatic aspects of health at the expense of be-
havioral and social aspects. Turner describes
the “recurrent, unoffi cial, and popular ‘anti-
scientifi c’ theme” (p. 14) of social work as
counter to the trend toward scientifi cation. A
second trend is toward increased specializa-
tion, which Turner says leads to decreased
sensitivity to the whole person. Social work’s
holistic perspective broadens the health-care
team’s view to consider the individual as a
whole. The third trend noted by Turner is med-
icine’s increasingly patient-only focus, to the
exclusion of salient others, events, and issues
in the environment. Again, the emphasis of so-
cial work on person in environment broadens
the scope of the health-care team.
An appreciation of the complex interplay
of biological, social, and behavioral factors in
health (see, e.g., McGinnis, Williams-Russo,
& Knickman, 2002) has led to new concep-
tualizations of team science and disciplinary
collaboration (Abrams, 2006; Hiatt & Breen,
2008). In 2003, Elias Zerhouni, the director of
the National Institutes of Health (NIH), initi-
ated the Roadmap for 21st Century Medical
Research, which for the fi rst time encour-
aged professionals from different disciplines
to work together in new ways and to include
community members as active participants in
scientifi c investigations. NIH personnel, scien-
tists, and community members are all consid-
ered stakeholders in research.
New professional collaborations fostered
by the NIH Roadmap take research from the
multidisciplinary and interdisciplinary ap-
proach to the new concept of transdisciplinary
(see Table 10.3). In the latter, investigators
from the biological, social, and behavioral sci-
ences work so closely together in addressing
major health issues that they must develop new
shared languages that incorporate key words
from their separate disciplines, pool the best
of their disciplinary theories, and forge new
methodologies and analytical approaches that
allow inclusion of factors at multiple levels
in the same analyses (Gehlert et al., 2010).
Kahn and Prager (1994) point out that, for
true transdisciplinary teams to be successful,
university structures, such as rewards for pub-
lishing frequently and on narrow topics, must
be modifi ed, a sentiment echoed in a report by
the National Academies (National Academy of
Sciences, National Academy of Engineering,
& IOM, 2005).
Social work education faces similar chal-
lenges, especially in providing suffi cient
biological and genetic training to students in-
terested in working in health care so that they
can operate effectively on transdisciplinary
teams. Toward that purpose, a guide to under-
standing medical terminology is located in an
appendix to this chapter.
Additional challenges presented by the
transdisciplinary approach to health include
preparing students to work with professionals
from other disciplinary cultures (Hall, 2005)
and teaching them new ways to include com-
munity members in health-care decision mak-
ing. The tradition of family support in social
work education can provide guidance for the
latter.
Although the NIH Roadmap addresses re-
search directly, it has major implications for
how health care is viewed and delivered in
Table 10.3 Types and Descriptions of Health-Care
Teams
Type Description
Multidisciplinary Team members represent
a variety of professional
backgrounds. Although part
of the same team, they have
separate bodies of professional
knowledge and maintain
different disciplinary languages.
Interdisciplinary Team members from a variety of
professional backgrounds share
their bodies of knowledge and
disciplinary languages.
Transdisciplinary Team members from a variety
of professional backgrounds
develop a shared language based
on their separate disciplinary
languages, pool bodies of
knowledge and theories, and
jointly develop new methods
and analytical techniques.
JWBT514_ch10.indd 244JWBT514_ch10.indd 244 9/21/11 7:43 PM9/21/11 7:43 PM
Communication in Health Care 245
the United States. NIH is the largest funder of
medical research in the world, and hospitals
and other health-care facilities depend on re-
search funding for their operations. This has
been the case with teaching hospitals for some
time but is increasingly becoming the case for
community clinics, other outpatient facilities,
illness-specifi c consumer organizations (e.g.,
the American Heart Foundation), and advo-
cacy groups. The broad view of health as a
complex interplay of biological, social, and
behavioral factors and of community residents
as important contributors presented by the NIH
Roadmap is signifi cant for how social work is
viewed in health care for two major reasons: It
forces a broader view of health that includes
social and behavioral factors, and it places a
premium on being able to establish and ac-
cess community ties. Because social work is
recognized by other health-care professionals
as particularly expert in these two areas, the
profi le of the profession is likely to rise.
Group theory traditionally has been used
by social workers in health care to understand
patients as members of groups. It also serves
them well in helping to understand the dy-
namics of the teams on which they serve. The
often-used classifi cation of group roles that
include opinion giver, coordinator, gatekeeper,
and special-interest pleader (Benne & Sheets,
1948) works as well for health-care teams as
for patient groups. Likewise, the phases of
small groups (see e.g., Northouse & Nort-
house, 1997)—namely orientation, confl ict,
cohesion, working, and termination—work
equally well for patient and provider groups in
health care, although health-care teams often
are ongoing and not time limited.
Yalom (1998) provides a list of factors
through which groups work to achieve thera-
peutic aims. Understanding factors such as (a)
catharsis, which occurs when team members
are able to express openly or ventilate their
frustrations; (b) the corrective recapitulation
of the primary family group, in which group
members experience interactions that mimic
those they experienced with their parents and
siblings but in a more positive way; and (c)
interpersonal learning, in which members
learn from one another through observation,
can be useful in understanding why members
of a health-care team are behaving as they are.
Many social workers report anecdotally that
they have become team diagnosticians and that
other professionals turn to them for advice on
personal matters.
Beginning in the 1980s, a number of au-
thors have examined the role of social work-
ers on health-care teams. Sands, Stafford, and
McClelland (1990), for example, echoed the
sources of confl ict between social workers and
physicians noted by Roberts (1989) and Turner
(1990; also see Mizrahi & Abramson, 1985)
and added others germane to social workers’
relationships with other health-care team pro-
fessionals. These include status differences
between disciplines that interfere with demo-
cratic functioning and the competition that
arises when professional roles and functions
overlap.
At the same time, there is evidence that
interprofessional collaborations involving so-
cial workers are effective. In an experimental
study, Sommers, Marton, Barbaccia, and Ran-
dolph (2000) compared teams of primary care
physicians, nurses, and social workers to pri-
mary care physicians working alone in terms of
number of hospital admissions; readmissions;
offi ce visits; emergency department visits; and
changes in self-rated physical, mental, and so-
cial functioning of patients. The collaborative
team approach resulted in signifi cantly fewer
hospitalizations, readmissions, and offi ce vis-
its for patients as well as an increase in their
levels of social activity. As noted in Chapter
1, social workers in health care have been
less likely than other professionals to have
roles identifi ed as uniquely their own. This
phenomenon was noted originally in a 1980
study by Lister in which health profession-
als from 13 disciplines were surveyed on role
expectations. No role was assigned uniquely
to social work. This leads to confusion when
psychologists, nurses, and therapists perform
some of the same functions, such as taking so-
cial histories or helping patients prepare psy-
chologically for medical procedures. Overlap
of roles is more likely in some settings than
JWBT514_ch10.indd 245JWBT514_ch10.indd 245 9/21/11 7:43 PM9/21/11 7:43 PM
246 Health Social Work Practice: A Spectrum of Critical Considerations
others. Settings that rely more on technology,
such as emergency departments or intensive
care units, generally exhibit more role distinc-
tion and more hierarchical decision making. In
settings less tied to technology, such as long-
term care facilities or nursing homes, profes-
sionals’ roles are less distinct and more likely
to overlap. Decision making is more likely to
be democratic.
Sands et al. (1990) note that confl ict has
a function in health-care teams: to ensure
that situations and issues facing the team are
viewed from a variety of perspectives. Confl ict
can be a catalyst for growth and contribute to
good decision making if team members are
able to speak freely, negotiate effectively, and
achieve resolution. Group think (Janus, 1972),
which occurs when group members feel pres-
sured to conform, has been implicated in some
of the worst disasters in history, including the
Bay of Pigs invasion and the escalation of the
war in Vietnam.
A number of authors have offered sugges-
tions for improving interprofessional function-
ing while minimizing pressure to conform
(Freeth, 2001; Satin, 1987; Vanclay, 1996).
Vanclay suggests that the keys to sustaining
effective collaboration between social work-
ers and physicians are interprofessional edu-
cation, a clear understanding of the roles and
responsibilities of other disciplines, regular
face-to-face contact, shared information on
structures and procedures, and support from
senior management.
Communication Patterns in
Health-Care Settings
A landmark study of communication in outpa-
tient settings noted a pattern in which patients
were cut off by physicians before they were
able to express all of their health concerns.
Beckman and Frankel (1984) recorded 74 out-
patient return visits and measured physicians’
questioning style and whether they interrupted
patients during their opening statements of
concern. In 8% of visits, physicians failed to
solicit patients’ concerns entirely and asked
only closed-ended questions. In 69% of visits,
physicians interrupted patient within 18 sec-
onds of their beginning to talk and redirected
interviews. In only 1 of 74 instances (less than
1%) did a physician allow a patient to return to
his initial statement of concerns. In the remain-
ing 23% of visits, patients were allowed to
complete their opening statement of concerns
without interruption. The authors cautioned
that the physician-directed style observed in
their study would almost certainly result in
the exclusion of information pertinent to diag-
nosis and treatment planning. In a subsequent
interview, Frankel (Goleman, 1991) stated that
physician interruptions are particularly trou-
bling in light of the fact that patients rarely list
their most troubling complaint fi rst but instead
submerge it in a list of less troubling concerns.
The third complaint listed by patients is gener-
ally the most troubling for them.
Clinical encounters are even more prob-
lematic when providers and patients are from
different racial or ethnic groups or different
socioeconomic status (SES), especially when
providers are White American and patients are
low income or members of a minority group.
A 2002 report issued by the IOM implicated
physician behavior in the growth of health dis-
parities in the United States, which often are
based on racial, ethnic, or SES differences.
McGinnis and colleagues (2002), based on a
review of the best available empirical studies,
attributed 10% of early deaths in the United
States to shortfalls in medical care; a portion
of that percentage was thought to be due to
provider behavior.
Johnson, Roter, Powe, and Cooper (2004)
conducted a study to determine the extent to
which patient race and ethnicity affect commu-
nication between providers and patients. The
outpatient clinic visits of 458 White American
and African American patients and 61 physi-
cians in the Washington, DC/Baltimore area
were rated by experts in terms of physician
verbal dominance (measured by dividing the
total number of physician statements by the
total number of patient statements), patient-
centeredness (measured by dividing the total
amount of socioemotional talk by the total
amount of biomedical talk), and emotional
JWBT514_ch10.indd 246JWBT514_ch10.indd 246 9/21/11 7:43 PM9/21/11 7:43 PM
Communication in Health Care 247
tone (affect) of the interviews. Physicians were
23% more verbally dominant and communica-
tion was 33% less patient-centered during phy-
sician visits with African American patients
than with White American patients. African
American patients and their physicians also
were rated as exhibiting lower levels of posi-
tive affect than were White American patients
and their physicians.
Beach and colleagues (2010) analyzed
354 encounters between patients infected
with human immunodefi ciency virus (HIV)
and their providers across four HIV care sites
(Portland, OR; Detroit, MI; Baltimore, MD;
and New York, NY) using the Roter Interac-
tion Analysis System to explore racial differ-
ences in communication. As was the case in
the 2004 study by Johnson and colleagues,
physicians were more verbally dominant with
African American than with White American
patients. The total number of socioemotional
statements made did not differ between the
two groups, however, in the study by Beach
and colleagues.
In attempting to tease out the sources of
unintentional provider bias that might be im-
pacting health disparities, Burgess, Fu, and
von Ryn (2004) outlined a number of pos-
sible explanations. They suggest that White
American providers unknowingly may con-
vey negative affect toward African American
patients, which triggers the patients’ own
negative affect, resulting in a situation that is
suboptimal for communication. They suggest
that the majority of providers hold conscious
beliefs on equality that are inconsistent with
their automatic, unconscious reactions to low-
income and minority patients. The authors go
on to say that in clinical situations in which
the time allotted for information gathering is
almost never suffi cient, providers tend to fi ll
in the gaps with information based on group
stereotypes and behave in ways that confi rm
those stereotypes.
An example of this phenomenon comes
from a study by Lewis, Croft-Jeffreys, and
David (1990). In this study, 139 psychiatrists
completed a questionnaire after reading one
of two versions of a case that varied only by
whether the patient was Afro-Caribbean or
White American. Another two versions of the
vignette varied only in terms of the patient’s
gender. All vignettes described the behavior
of a patient with psychosis. Respondents rated
the Afro-Caribbean case as more violent and
criminal and less likely to need narcoleptics
than the White American case. Female cases
were rated as less violent, less criminal, and
less likely to need narcoleptic medications
than male cases.
Two additional studies linked patient race
to physicians’ treatment recommendations.
In the fi rst, van Ryn and Burke (2000) gath-
ered survey data from 618 patients visiting
193 physicians after an angiogram. Physicians
tended to rate African American patients as
lower in intelligence and less likely to adhere
to treatment recommendations and more likely
to exhibit risk behaviors than White American
patients. They attributed patients of lower and
middle SES less favorably than upper-SES
patients on measures of personality, ability,
role demands, and behavioral tendencies. In
a second study (Schulman et al., 1999), 720
primary care physicians attending two national
meetings viewed a taped interview with a pa-
tient and reviewed hypothetical data on the
same patient. They were then surveyed about
how they would manage the patient’s chest
pain. Women and African American patients
were less likely than men and White Ameri-
can patients to be referred for cardiac cath-
eterization. African American women were
signifi cantly less likely to be referred for the
procedure than White American men.
Little work has focused on how SES dif-
ferences between providers and patients might
impact communication, and thus health out-
comes, above and beyond the effect of racial
and ethnic differences. Jensen, King, Guntz-
viller, and Davis (2010) surveyed 131 low-
income adults living in Indiana about their
satisfaction with their communication with
health-care providers. Interestingly, satisfac-
tion was lower among younger White Ameri-
can patients with higher levels of literacy than
among older patients with lower rates of lit-
eracy who were African American or Hispanic
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248 Health Social Work Practice: A Spectrum of Critical Considerations
Americans. The authors suggest that the for-
mer group may be more assertive while the
latter group may withdraw during health-care
encounters.
Biases in communication by gender have
been observed in the few studies that have
addressed the topic. Although little is known
about variation in communication by gender of
patient, a number of studies have demonstrated
differences in communication between male
and female physicians. Roter, Hall, and Aoki
(2002) reviewed available studies from 1967
to 2001 and found 26 that used a communica-
tion database that could be analyzed by raters.
They found no gender differences in the quan-
tity or quality of biomedical communication
or social conversation between male and fe-
male physicians. Female physicians, however,
exhibited signifi cantly more patient-centered
talk than their male colleagues, specifi cally
emotionally focused talk, psychosocial coun-
seling, psychosocial question asking, active
partnership behaviors, and positive talk. Clinic
visits to female physicians were on average
two minutes longer (10%) than visits to male
physicians.
The 2001 IOM report and empirical studies
by Roter and colleagues (2002) and Burgess,
Fu, and von Ryn (2004) are aimed at physi-
cians, despite the fact that the latter authors use
the generic term provider. Yet issues of cross-
cultural communication are equally important
to social workers in health care. Although the
perspectives and values of social workers dif-
fer from those of physicians, as aptly pointed
out by Roberts (1989) and Turner (1990), so-
cial workers are as vulnerable to stereotyping
and heuristics as other professions and there-
fore have to grapple with the same issues and
biases when attempting to communicate with
people with other cultural constructions of
reality.
There is evidence that being ill equipped
to communicate with patients from different
cultural backgrounds has consequences for
providers as well as patients. Ulrey and Ama-
son (2001) measured the cultural sensitivity,
intercultural communication skills, and lev-
els of state anxiety of 391 employees of two
hospitals and four clinics in the U.S. South
and found low levels of sensitivity and com-
munication skills to be signifi cantly correlated
with high levels of anxiety. In other words,
providers who were high in cultural sensitivity
and better intercultural communicators expe-
rienced less anxiety than providers who were
less sensitive and less adept at intercultural
communication.
The idea that communication problems can
be as problematic for providers as patients is
supported by a Dutch study (Zandbelt, Smets,
Oort, Godfried, & de Haes, 2004) in which the
authors measured the same fi ve visit-specifi c
relationship phenomena in 30 physicians and
330 patients following outpatient clinic visits.
They found physicians to be less satisfi ed in
general with health encounters than patients.
Patients were most satisfi ed with physicians
whom they thought attended better to their
health concerns and from whom they were
able to obtain information. Physicians reported
greater satisfaction after medical encounters
with patients who were better educated, had
better mental health, and preferred to receive
fewer details about their care.
Patient–Provider Communication and
Health Outcomes
A number of empirical studies have linked im-
proved provider and patient communication to
positive changes in physiological and behav-
ioral measures of health status. In addition to
helping to ensure an accurate exchange of in-
formation, enhanced provider communication
skills are thought to improve health outcomes
by motivating patients to engage actively in
their treatment and increasing their confi dence
in their ability to infl uence their health. Ma-
guire and Pitceathly (2002, p. 697) add that
patients’ propensity for anxiety and depression
is lessened when communication is effective;
effective communication also enhances pro-
viders’ well-being.
Several studies have linked better commu-
nication between patients and providers with
improved adherence to treatment regimens
and other favorable health-care outcomes.
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Communication in Health Care 249
Schneider, Kaplan, Greenfi eld, Li, and Wilson
(2004), for instance, linked better communi-
cation to improved adherence (measured on
a 4-point scale) to antiretroviral therapy in a
sample of 554 patients treated at 22 outpatient
HIV clinics. The study’s seven independent
variables were (1–6) quality of physician-
patient communication, measured using six
available scales—general communication,
HIV-specifi c information, egalitarian deci-
sion-making style, overall physician satisfac-
tion, willingness to recommend physician, and
physician trust—and (7) the extent to which
patients thought their physicians understood
and were able to solve problems with their an-
tiretroviral regimens. Six of the seven physi-
cian-patient communication variables (all but
egalitarian decision-making style) were sig-
nifi cantly associated with adherence to antiret-
roviral therapy. Conteh, Stevens, and Wiseman
(2007) found better communication to be as-
sociated with increased adherence to malaria
treatment in rural Gambia.
In another study (Stewart et al., 2000), the
outpatient visits of 315 patients and their 39
family physicians were audiotaped and rated
on patient-centered communication (measured
as the extent to which the physicians explored
patients’ disease and illness experiences, under-
stood patients as whole persons, and discussed
and sought agreement with patients on treat-
ment plans). Patients were asked to rate their
encounters for patient-centered communication
independently. Outcomes measured were pa-
tients’ health and health care, specifi cally di-
agnostic tests taken, referrals made, and visits
to the family physician in the two months fol-
lowing the audiotaped visit, all of which were
extracted from patients’ charts. Higher rates of
patient-centered communication were associ-
ated signifi cantly with better recovery from the
complaint that brought the patient to the phy-
sician in the fi rst place, fewer diagnostic tests,
and fewer referrals. Additional empirical stud-
ies link better communication to reduced pain
after surgery (Egbert, Battit, Welch, & Bartlett,
1964) and other physiological outcomes (Orth,
Stiles, Scherwitz, Hennrikus, & Vallbona, 1987;
Skipper & Leonard, 1968).
METHODS FOR IMPROVING
HEALTH COMMUNICATION
The body of literature on interventions that im-
prove providers’ and patients’ communication
skills has grown in recent years.
Changing Providers’ Behavior
Interventions range from prompting physi-
cians to check patients’ understanding of in-
formation to complex, comprehensive training
programs that address a number of factors
thought to improve communication.
Based on data obtained from observations
of the clinical performance of 25 physicians,
Sideris, Tsouna-Hadjis, Toumanidis, Vardas,
and Moulopoulos (1986) developed a four-
hour training seminar for physicians on health
communication. Physicians were taught how
to: (a) explain diagnoses, treatment objectives,
and prognoses; (b) provide oral and written in-
structions; (c) check patients’ comprehension;
and (d) convey positive affect. Communica-
tion scores were obtained prior to and after the
training seminar by asking dyads of participat-
ing and nonparticipating physicians and their
patients a series of complementary questions
about the medical encounter. Adherence was
measured by comparing patients’ behavior
with instructions given. Both communication
and adherence scores of the dyads of physi-
cians who participated in training and their
patients were statistically signifi cantly higher
than those of dyads in which the physicians
did not participate in training.
Maiman, Becker, Liptak, Nazarian, and
Rounds (1988) tested an intervention in which
pediatricians were trained to use simple in-
formational and motivational techniques for
enhancing mothers’ adherence to prescribed
treatment recommendations. The intervention
focused on how to: (a) express sincere con-
cern and empathy; (b) provide information in
a way that can be understood and remembered;
(c) simplify treatment regimens; (d) elicit, as-
sess, and modify health beliefs; (e) elicit and
meet mothers’ expectations for treatment; and
(f) monitor adherence to prescribed treatment
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250 Health Social Work Practice: A Spectrum of Critical Considerations
recommendations. Mothers whose physicians
were in the intervention group were signifi –
cantly more likely to adhere to medication
recommendations and to keep follow-up ap-
pointments than mothers whose physicians
were in the control condition.
Kinmonth, Woodcock, Griffi n, Spiegal,
and Campbell (1998) tested a 1.5-day train-
ing program for nurses and physicians aimed
at increasing levels of patient-centered com-
munication. Teams of physicians and nurses
from 41 practices were randomly assigned to
an experimental or a control condition. Nurses
in the experimental condition were offered
a half day of training to review evidence for
patient-centered interviewing and a full day of
facilitated practice in implementing patient-
centered interviewing skills. Physicians in
the experimental group received a half day
of training in active listening and negotiating
behavioral change. Nurses received two ad-
ditional support sessions with the facilitator.
Nurse/physician dyads in the control condi-
tion received no training. The quality of life,
well-being, hemoglobin A1c and lipid concen-
trations, blood pressure, and body mass index
(BMI) of 250 patients with type 2 diabetes
from the same practices as the nurse-physician
dyads were measured one year after training.
Patients also were asked to rate the quality of
communication of their nurses and physicians
and their satisfaction with care. Patients of
dyads in the experimental condition reported
better communication, greater satisfaction
with care, and greater well-being than did
patients of dyads in the control condition. Pa-
tients whose nurses and physicians were in the
experimental group did not, however, exhibit
more favorable hemoglobin A1c or lipid con-
centrations, blood pressure readings, or BMI
than the control group.
A second study (Brown, Boles, Mullooly,
& Levinson, 1999) failed to fi nd gains in
patient satisfaction after a communication
skills training program titled “Thriving in a
Busy Practice: Physician-Patient Communi-
cations.” Sixty-nine primary care physicians,
surgeons, medical subspecialists, physician-
assistants, and nurse practitioners participated
in a 4-hour interactive workshop focused on
skills for building effective relationships with
patients (active listening, expressing concern,
understanding, respect, and responding to
feelings) followed by 2 hours of homework
in which they were asked to audiotape at least
two patient interviews and listen to the record-
ings. A 4-hour follow-up session focused on
teaching skills for effective negotiation with
patients was conducted one month after the
fi rst 4-hour session. Patients of the providers
who received training were asked to complete
the Art of Medicine survey, which measures
both satisfaction with providers’ communica-
tion abilities and global visit satisfaction. No
difference was seen in the Art of Medicine
survey scores of patients whose providers had
or had not participated in the communication
skills training program.
A systematic review by Rao, Anderson,
Inui, and Frankel (2007) assessed 21 random-
ized clinical trials published between 1996
and 2005 (none of the studies mentioned ear-
lier were included in this group of 21) that
tested an intervention to change physicians’
communication behaviors. Most interventions
included multiple modalities, such as infor-
mation, feedback, modeling, and practice,
and were delivered in one or more sessions.
In 17 of these trials, physicians practiced and
received feedback on their communication.
Most studies reported improvement in physi-
cians’ behavior. Those that did not, however,
involved interventions in which physicians had
little or no opportunity to practice and receive
feedback on their communication skills.
Changing Patient Behavior
A number of studies have focused on modi-
fying patient behavior during interviews with
physicians to improve health-care communica-
tion and outcomes. Most focus on increasing
patients’ participation in treatment.
Roter (1977) developed a 10-minute inter-
vention in which a health educator assisted
patients in formulating questions for their phy-
sicians and asking the questions early in clinic
visits. Patients in a control condition were
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Communication in Health Care 251
provided only with information on services.
Interestingly, patients in the experimental con-
dition reported more anxiety than did control
patients but were signifi cantly more likely to
keep appointments during the 4-month follow-
up period of the study. Although patients in
the experimental group asked signifi cantly
more direct questions of their physicians than
did control patients, their visits were no longer
than those of patients in the control condition.
In other words, the intervention changed the
nature of the clinic visit without increasing its
length.
In another early study of patient and physi-
cian communication, Greenfi eld, Kaplan, and
Ware (1985) developed and tested an interven-
tion in which patients were helped to read the
medical records from their last clinic visit.
In a 20-minute session, patients were taught
to identify relevant medical issues and deci-
sions from their records, devise ways to ne-
gotiate these decisions with their physicians,
and ask questions. The audiotaped interviews
of patients who participated in the interven-
tion were compared with those who did not.
No signifi cant difference in length of visits
was found between the two groups. Patients
who received training, however, were found to
be signifi cantly more assertive in their interac-
tions with physicians. They exhibited a 48%
higher ratio of patient-to-physician utterances
than the control group and elicited about twice
the number of factual statements from their
physicians.
Kaplan, Greenfi eld, and Ware (1989) re-
ported the results of an intervention study in
which patients with ulcer disease, hypertension,
breast cancer, and diabetes were given cop-
ies of their medical records and an algorithm
for interpreting the information and coached
in behavioral strategies for increasing their
participation in clinical interviews with their
physicians. The interviews prior to and after
the intervention were audiotaped and coded by
experts. More patient control and more affect,
especially negative affect on the part of both
the patient and physician, and more informa-
tion provided by physicians in response to pa-
tients’ seeking of information were associated
with better health status, including better con-
trol of diabetes and hypertension. The authors
interpreted negative physician affect, such as
tension, nervous laughter, frustration, and anx-
iety, as benefi cial because it conveyed caring
on the part of the physician.
Thompson, Nanni, and Schwankovsky
(1990) tested a simple intervention to improve
patients’ participation in communication dur-
ing outpatient clinic visits. Sixty-six women
were randomly assigned to a control group or
a group that was asked to prepare three writ-
ten questions for their physician. The group
that prepared questions asked signifi cantly
more questions during their clinic visits and
reported less anxiety after the visits than did
women in the control group.
McCann and Weinman (1996) prepared a
pamphlet explaining how patients could in-
crease their participation in interviews with
their primary care physicians. The pamphlet
encouraged patients to take a more active
part in their interactions with their physi-
cians. The pamphlet fi rst asked patients to
describe the nature of their problems and to
consider the problems’ possible causes and
treatments and likely impacts. The pamphlet
then outlined how to voice concerns during
visits as well as how to ask questions about
diagnosis and treatment and check under-
standing. The 59 patients who received the
intervention materials prior to their visits
asked signifi cantly more questions of their
physicians than did the 61 individuals in the
control condition who received an educa-
tional pamphlet.
In another study (Davison & Degner, 1997),
60 men newly diagnosed with prostate cancer
in a community urology clinic were randomly
assigned to either an experimental group that
received written information about prostate
cancer, a list of questions to ask their physi-
cians, and an audiotape of the medical consul-
tation or to a control group that received only
information on prostate cancer. Although the
two groups did not differ signifi cantly in lev-
els of depression, the men in the intervention
group took a more active role in treatment de-
cision making and reported signifi cantly lower
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252 Health Social Work Practice: A Spectrum of Critical Considerations
levels of anxiety 6 weeks after the intervention
than did men in the control condition.
Another study included 205 patients with
chronic health conditions who were randomly
assigned to experimental and control condi-
tions. Those in the experimental condition
were given copies of their medical record
progress notes and asked to prepare two ques-
tions about their conditions that would be at-
tached to the front of their charts. Patients in
the control conditions received educational
materials and completed suggestion lists for
improving clinic care. Those in the experimen-
tal group reported signifi cantly better overall
physical functioning and satisfaction with
their physicians’ care and were signifi cantly
more interested in seeing their medical records
than those in the control group. In addition, pa-
tients in the experimental group reported a sig-
nifi cantly better overall health status than they
had prior to the intervention (Maly, Bourque,
& Engelhardt, 1999).
Additional Techniques for Improving
Health Communication
Several techniques have been suggested for
improving health-care communication. They
can be divided roughly into individual-level
techniques that address building empathy
and elicit patients’ thoughts and feelings and
group- or community-level techniques.
Coulehan and colleagues (2001) devised
a method for improving empathy, which they
defi ned as “the ability to understand the pa-
tient’s situation, perspective, and feelings and
to communicate that understanding to the pa-
tient” (p. 221). Their method involved active
listening, framing or signposting, refl ecting
the content, identifying and calibrating the
emotion, and accepting and requesting cor-
rection. Active listening involves verbal and
nonverbal techniques, such as the mirroring
of facial expression, making direct eye con-
tact, assuming a posture indicating attention,
and exhibiting facilitative responses such as
nods of understanding. Framing or signpost-
ing is analogous to the empathic responding
advocated by social work clinicians (see, e.g.,
Hepworth, Rooney, & Larsen, 2002) and may
take forms such as “Sounds like you are say-
ing. . . .” Refl ecting the content is another term
for paraphrasing. Identifying and calibrating
the emotion is a means of eliciting the nature
of emotion through the use of statements such
as “I have the sense that you feel strongly, but
I’m not sure I understand exactly what the feel-
ing is. Can you tell me?” (p. 222). Requesting
and accepting correction comes after state-
ments of providers’ understanding of what pa-
tients have said through phases such as “Did I
get that right?” The sequence—patient’s nar-
rative, provider’s statement of understanding
and request for correction—is repeated until
the provider’s understanding is validated by
the patient.
DuPre (2001) outlines four additional tech-
niques to elicit patients’ feelings and thoughts,
which she gleaned from a review of interviews
conducted by a physician well known for her
communication skills. These are: (1) involving
patients in decision making, (2) talking openly
about patients’ fears, (3) asking open-ended
questions, and (4) self-disclosing. The latter is
appreciated more by some patients than oth-
ers based on their personal preferences and
cultural expectations. The decision to self-
disclose always should be based on cues and
responses from patients.
A category of techniques in which provid-
ers partner with groups or communities to
achieve health-care goals have gained popu-
larity. These techniques fall under the rubric
of community-engaged research (CEnR), a
major category of which is community-based
participatory research. The hallmark of CEnR
approaches is the active involvement of com-
munity members at every stage of the research
process. They share an aim to “enhance under-
standing of a given phenomenon and the social
and cultural dynamics of the community and
integrate the knowledge gained with action
to improve the health and well-being of com-
munity members” (Israel et al., 2003, p. 54).
CEnR approaches have been used with a va-
riety of culture groups and illness conditions.
A novel approach was developed in the
Wai’anae Cancer Research Project (Matsunaga
JWBT514_ch10.indd 252JWBT514_ch10.indd 252 9/21/11 7:43 PM9/21/11 7:43 PM
Communication in Health Care 253
et al., 1996) to test the effectiveness of a cul-
turally appropriate intervention for increasing
the participation of native Hawaiian women
in cervical and breast cancer screening. The
impetus for the intervention was that native
Hawaiians had the second highest cancer rates
in Hawaii. An advisory committee made up
of community residents was selected to work
collaboratively with project scientifi c investi-
gators to devise and test an intervention over a
period of years. The intervention was a series
of health-focused support groups using exist-
ing social networks based on the traditional
Hawaiian value of a mutual willingness to
help others without expectation of reciprocity
and without having to be asked. Native Hawai-
ian paraprofessionals recruited women to host
groups, presented information to the groups,
and facilitated discussion about breast and
cervical cancer screening. Peer group leaders,
who volunteered to host groups, helped in-
vestigators access community groups. Group
discussion took traditional “talk story” form,
which was familiar to the women and thus
more acceptable. Vouchers for free mammo-
grams, breast examinations, and Pap smears
were provided to each participant and one
of each woman’s friends who was unable to
participate. An evaluation of the program in-
dicated that it had a positive impact on com-
munity knowledge, attitudes, and behaviors
about breast and cervical cancer screening.
In addition, investigators learned a great deal
about traditional Hawaiian health beliefs and
forged positive relationship with community
members and groups.
Recent efforts have aimed at improving
the patient–physician partnership by work-
ing with the two groups independently and in
patient–physician dyads. An example is the
Patient-Physician Partnership Study (Cooper
et al., 2009), a culturally tailored, multicom-
ponent intervention aimed at improving health
outcomes for members of racial and ethnic
minority groups and people of lower SES.
The intervention, which will be tested using a
randomized clinical trial, includes a computer-
ized self-study communication skills training
program for physicians.
Working With Patients With Limited or
No English-Language Profi ciency
Perhaps the greatest challenge to health com-
munication comes when patients and fami-
lies have very limited or no English-language
skills. This is an issue in health care today be-
cause, according to data from the 2000 census,
19 million people in the United States have
limited profi ciency in English (Marcus, 2003).
The optimal approach to working with
a patient and family who have limited or no
English-language skills is to work with a pro-
fessional medical interpreter. In fact, federal
law mandates that health-care facilities that
receive Department of Health and Human Ser-
vices funding provide interpreter services to
all people seeking or receiving medical care.
The mandate is enforced by the federal Offi ce
for Human Rights. Some states also require
the use of interpreters. Illinois, for example,
passed the Language Assistance Services Act,
which requires that nursing homes and hospi-
tals make interpreter services available in per-
son or by telephone 24 hours a day.
Professional medical interpreters are spe-
cially trained individuals who can take a spo-
ken message in one language and render it into
another language (Luckman, 2000, p. 152).
Their task is not merely to change a word in
one language to one in another but they are
supposed to accurately refl ect differences in
culture that infl uence communication. For this
reason, Luckman refers to professional medi-
cal interpreters as culture brokers. Interpreta-
tion differs from translation in that it deals
with spoken language while translation deals
with written language.
Several points are known to enhance the ac-
curacy of interpretation. It is important for the
provider to face and speak directly to the patient
instead of to the interpreter. Doing this helps
to ensure that some measure of relationship
and rapport is established between patient and
provider. Providers should make eye contact
with patients when they are speaking or listen-
ing unless it is inappropriate for the patients’
culture group. Appropriateness of eye con-
tact can be determined from the professional
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254 Health Social Work Practice: A Spectrum of Critical Considerations
interpreter or from family members. Questions
and comments should be interpreted exactly as
they are stated by the provider and in the same
voice (i.e., in fi rst person). If the provider said,
for example, “I would like to know why you
came in today,” the interpreter should interpret
the statement in the fi rst person rather than
saying “The doctor would like to know why
you came in today.” The provider should avoid
asking more than one question at a time (e.g.,
“How are you feeling and why did you come
in today?”) and avoid using acronyms or collo-
quialisms (e.g., “Did you hurt your noggin?”),
which might be diffi cult to interpret.
The interpreter should be positioned be-
hind and to the side of the patient and be-
tween the patient and the provider, so that
the three form a triangle. If the interpreter
has questions for the provider, they should
be spoken directly to the provider in English
after informing the patient that this will occur.
Similarly, questions or requests for clarifi ca-
tion from patients should be made directly to
the patients, after informing the provider that
this is to occur.
Because interpreting from one language
to another entails more than merely render-
ing a word from one language into a second
language, some interpretation may entail ad-
ditional explanation. This might occur when a
phenomenon does not take the same form in
one culture as it does in another. If a patient
refers to a culture-specifi c condition, such as
evil eye, for instance, a direct word-for-word
interpretation would not be suffi cient to con-
vey the patient’s meaning to the provider. In
these situations, after interpreting word for
word, the interpreter should tell the provider
that the words do not have the same meaning
in English as in the patient’s language and pro-
vide an explanation (e.g., “mal ojo or evil eye
is a condition in Mr. Garcia’s culture in which
illness is thought to occur suddenly when one
person casts his gaze on another”). The patient
also should be informed that the interpreter is
explaining a condition that does not occur in
the same way in the two cultures. Otherwise,
the patient may wonder why the length of the
interpreter’s statement to the provider in Eng-
lish took twice or three times as long his re-
sponse in his own language.
Some facilities contract with telephone in-
terpretation services, especially for unusual
languages. An example is the AT&T Language
Line, a 24-hour service available in all parts
of the country that employs interpreters in 140
languages. In some states, Medicaid covers
the cost of this service. The interview usually
is done using the telephone’s speaker feature.
The disadvantage of using telephone interpre-
tation services is that they do not provide the
interpreter with valuable nonverbal cues. Also,
people who work for telephone interpretation
services often are not familiar with medical
terminology.
A key advantage to using in-person profes-
sional medical interpreters is that they have
no stake in patients’ answers to physicians
because they presumably are strangers. When
no interpreter is available, such as in com-
munity health centers, it may be necessary to
use a family member of the patient or some-
one working in the facility who is bilingual.
Using family members as interpreters poses
problems with objectivity, and patients may
be reluctant to discuss sensitive information
in front of their relatives. Families also might
want to make a patient look good to provid-
ers and thus minimize problems they think are
socially less acceptable, such as hallucinations
(Slomski, 1993). Finally, a family member’s
English skills may be only slightly better than
those of the patient.
Using nonfamily members who speak the
patient’s language, such as workers in other
units of the hospital, may be expeditious but
yield poor results, because they may be unfa-
miliar with medical terminology and may not
understand how to interpret precisely and ob-
jectively (Luckman, 2000). Using nonfamily
members also can cause serious privacy issues
in the health setting. Regional differences in
word use between different countries or cultures
that speak the same language also may pres-
ent problems. In a review of audiotaped tran-
scripts of interviews with six Spanish-speaking
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Communication in Health Care 255
patients in which a nonprofessional interpreter
was used (either a bilingual employee or family
member), 165 errors were noted, 77% of which
had the potential to cause serious clinical prob-
lems (Flores et al., 2003). These included tell-
ing a mother to put antibiotics in a child’s ears
instead of his mouth and failing to translate
questions about drug allergies.
Although it may be necessary to use bilin-
gual relatives or employees to interpret in situ-
ations in which a patient has no or very limited
English skills, it is preferable to use a profes-
sional medical interpreter who is familiar with
medical terminology. Telephone interpreting
services, with the interpreter participating via
telephone, are viable options, especially if they
employ interpreters with expertise in medical
terminology. In situations involving bilingual
family members or employees or telephone in-
terpreters who have not been trained in medi-
cal terminology, the provider should (a) take
time to explain the importance of interpret-
ing objectively and without editing what the
provider says and (b) use less technical terms
that are more likely to be understood by the
person interpreting and the patient (e.g., “Have
you been running a temperature?” rather than
“Have you been febrile?” or “Have you gone
to the bathroom today?” instead of “Have you
voided today?”). The more technical the lan-
guage, the less likely it is that it will be under-
stood in the same way by provider, interpreter,
and patient.
CONCLUSION
Clinical encounters in health care are prob-
lematic and require negotiation when patient
and provider come with markedly different
cultural constructions of reality and hold dif-
ferent health beliefs. Good communication
between patient and provider can help to
overcome divergent beliefs and smooth the
path toward a negotiated clinical reality that
optimizes the fl ow of information, motivates
patients to engage actively in their treatment,
increases patients’ confi dence in their ability
to infl uence their own health, and enhances
the well-being of both patient and provider.
This type of communication has the potential
to decrease group differences in health in the
United States.
A number of techniques for promoting ef-
fective communication were outlined and dis-
cussed. A number of techniques for increasing
patients’ participation in treatment have dem-
onstrated empirical support and show promise
for use in clinical settings. Techniques for im-
proving providers’ communication skills by
attending more to the nonsomatic aspects of
patients’ health and making interviews more
patient-centered have stood up less well in em-
pirical testing.
Social work input is needed in the de-
velopment and testing of interventions to
improve communication in health care. Al-
though the majority of studies reviewed in
this chapter had strong research designs,
they were almost exclusively atheoretical.
Interventions based on strong social science
theory constructed by social workers with
experience in health care likely would fare
better. Similarly, techniques for maximizing
the accuracy of communication with people
with no or limited English-language skills
need empirical testing.
More challenging for social work and other
disciplines is how to acknowledge and mini-
mize often subtle provider bias toward patients
from sociodemographic groups that are very
different from the provider’s own. This is as
much a challenge for social workers as for any
other professional group. Empirical evidence
of the outcomes of health encounters between
majority providers and patients from minority
and lower- and middle-SES groups is sober-
ing, especially in terms of its potential nega-
tive impact on health outcomes. A great deal
more work is needed to develop interventions
for providers to sensitize them to the dangers
of unacknowledged bias and provide guid-
ance for overcoming that bias. Social workers
clearly have a role in developing and testing
these interventions and in serving as models
of good practice through their positions on
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256 Health Social Work Practice: A Spectrum of Critical Considerations
transdisciplinary health-care teams. The suc-
cess of these efforts could profoundly diminish
the contribution of the shortfalls in health care
noted by McGinnis and colleagues (2002)
to health disparities in the United States and
other parts of the world.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 10.1
Determine what groups of recent immigrants
or refugees are in your area or in the metro-
politan area closest to your college, univer-
sity, or place of work. Choose the group that
is greatest in number. Investigate the group’s
culture by consulting library and Internet ser-
vices. Interview a health provider who serves
the group. This might be someone from the
local health department, a community clinic,
or a federally qualifi ed health center. Ask if it
would be possible to interview a member of
the group. Obtain answers to the next ques-
tions and include them in a fi ve-page paper:
1. What are the major health problems faced
by the group (both in its country of origin
and in the United States)?
2. What are the barriers to treating these health
problems?
3. How has communication between providers
and members of the group progressed?
4. What are the major barriers to communica-
tion between providers and members of the
group?
5. What medical interpretation services are
available?
6. How easy or diffi cult are these services to
access?
Conclude your paper by outlining your reac-
tions to the situation and what recommenda-
tions you would suggest to improve it. For
extra credit, suggest for how group members
might be included in decision making using
a CEnR approach. You can supplement prac-
titioner interviews with written materials,
academically published or otherwise, but be
careful to distinguish and attribute sources of
information throughout your paper.
Learning Exercise 10.2
Using the procedure for understanding medi-
cal terminology that is outlined in the appen-
dix that follows, determine the meanings of the
next 20 terms:
1. Retroperitoneal
2. Neoplasia
3. Hypertrophy
4. Paranasal sinuses
5. Microcephaly
6. Cardiac arrhythmia
7. Myalgia
8. Bronchitis
9. Visceroptosis
10. Splenomegaly
11. Prostatic hypoplasia
12. Arteriosclerosis
13. Hemolysis
14. Prenatal
15. Mammography
16. Metastasis
17. Epigastric
18. Nephritis
19. Cardiomyopathy
20. Bradycardia
APPENDIX 10.1 MEDICAL
TERMINOLOGY
This appendix describes how medical terms
can be understood by breaking them into their
component parts and following a few decision
rules. Breaking down medical words into their
components and learning the meaning of those
components allows a person to understand
the meaning of a wide range of terms. This is
JWBT514_ch10.indd 256JWBT514_ch10.indd 256 9/21/11 7:43 PM9/21/11 7:43 PM
Communication in Health Care 257
especially important in preparing social work-
ers to work in transdisciplinary environments
in which they must communicate with team
members from a variety of disciplines.
In analyzing medical terms, begin with the
end of the word (the suffi x). For example, the
word neurology ends in -LOGY, which means
“the study of.” Next, go to the beginning of
the word. NEUR- is the word root, or the com-
ponent of the word that provides its essential
meaning. The root NEUR- means “nerve.”
The third part of the word, the letter O, has
no meaning of its own but connects the suffi x
and the root. It is called a combining vowel.
Putting it all together, we get “the study of
nerves.”
Another word is gastroenteritis. The suf-
fi x -ITIS means “infl ammation.” The root is
GASTR-, which means “stomach.” The word
has a second root, ENTR-, which means “in-
testines.” The connector is O. The word is read
from the suffi x, back to the beginning, and
then across, from left to right. Gastroenteritis
thus means “infl ammation of the stomach and
intestines.”
It helps to look for the connector in dividing
the word into its component parts. The com-
bining vowel and root together are referred
to as the combining form. Some words have
two combining forms. In this case, the rule
is to drop the combining vowel before a suf-
fi x that starts with a vowel. In gastroenteritis,
for example, the root ENTER- does not have
a combining vowel before it joins with -ITIS,
because -ITIS begins with a vowel. The com-
bining vowel between root components is kept
(as in GASTR-O-ENTER), even if the root be-
gins with a vowel. Another example of a word
with two combining forms is electroencepha-
logram. The suffi x -GRAM means “record
of.” The combining form ELECTRO- means
“electricity.” The combining form ENCEPH-
ALO- means “brain.” So the word electroen-
cephalogram means “record of the electricity
in the brain.”
In addition to suffi xes, roots, combining
vowels, and combining forms, some words have
components attached to their beginnings, which
are called prefi xes. Prefi xes can change the
meanings of words to which they are attached.
An example is the word pericardial. The suf-
fi x -AL means “pertaining to.” CARDI- is a
root that means “heart.” PERI- is a prefi x that
means “surrounding.” So pericardial means
“pertaining to the area that surrounds the heart.”
RETRO- is a prefi x means “behind.” Thus,
retrocardial means “pertaining to the area be-
hind the heart.” Because the prefi x EPI- means
“above,” the word epicardial means “pertaining
to the area above the heart.”
Tables 10.4 to 10.6 provide a number
of common medical suffi xes, prefi xes, and
roots. The information provided is general
because of space considerations and should
be seen as a resource for learning rather than
a complete list of medical terms. A number
of excellent manuals are available that can
supplement the information in this text and
provide medical terms germane to specialty
areas. A number of these manuals are listed
in the “Suggested Resources” at the end of
this appendix.
The information in these three tables should
allow social workers in health care to decon-
struct and understand medical terms that they
encounter. Remember these fi ve steps in iden-
tifying medical terms:
1. Identify the suffi x and determine its mean-
ing.
2. Identify any prefi x that may occur and de-
termine its meaning.
3. Identify the fi rst root and combining vowel,
which make up the combining form, that
occur after a prefi x or in the absence of a
prefi x. Determine its meaning.
4. Identify additional combining forms that
may occur after the fi rst combining form
that was identifi ed. Determine their mean-
ings. Recall that the last root before a suf-
fi x that begins with a vowel will not have a
combining vowel.
5. Read the word from its suffi x to its prefi x to
its combining forms or roots.
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258 Health Social Work Practice: A Spectrum of Critical Considerations
Table 10.4 Common Medical Prefi xes, Their Meanings, and Examples of Their Use
Prefi x Defi nition Example
a-, an- not, without apnea
ante- before, forward antepartum
anti- against antibiotic, antiseptic
auto- self, own autoimmune
bi- two bilateral, bifurcation
brady- slow bradycardia
cata- down catabolism
con- with, together congenital
contra- against, opposite contralateral
de- down, lack of dehydration
dia- through, apart, complete dialysis, diarrhea
dys- bad, painful, diffi cult dyspnea
ec-, ecto- out, outside ectopic
en-, endo- in, within endoscope
epi- upon, on, above epithelium
eu- good, well euphoria
ex- out, away from exopthalmia
hemi- half hemiplegia
hyper- excessive, above hyperplasia
hypo- below hypothermia
in- not, in insomnia, incision
infra- beneath infracostal
macro- large macrocephalia
mal- bad malignant
meta- change, beyond metastasis
micro- small microscope
neo- new neoplasm
pan- all pancytopenia
para- alongside of, near, beside, beyond parathyroid, paralysis
peri- surrounding pericardial
poly- many, much polyneuritis
post- after, behind postmortem, postnatal
pre- before, in front of prenatal, precancerous
pro- before, beyond prodrome, prolapse
pseudo- false pseudocyesis
re- back, again relapse
retro- behind, backward retroperitoneal
sub- below, under subcutaneous
supra- above, upper supracutaneous
syn-, sym- together, with synthesis, symphysis
tachy- fast tachycardia
trans- across, through transfusion
uni- one unilateral
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Communication in Health Care 259
Table 10.5 Common Medical Roots and Connecting
Vowels and Their Defi nitions
Root Defi nition
abdomin/o abdomen
aden/o gland
angi/o vessel
arthr/o joint
carcin/o cancer
cardi/o heart
cerebr/o cerebrum (largest part of the brain)
chondr/o cartilage
cutane/o skin
encephal/o brain
enter/o intestines
gastr/o stomach
gynec/o women, female
hepat/o liver
hemat/o blood
lapar/o abdominal wall
mamm/o breast
mast/o breast
nephr/o liver
neur/o nerve
onc/o tumor
opthalm/o eye
orch/o testes
oste/o bone
ovari/o ovary
ped/o child
psych/o mind
pulmon/o lung
rhin/o nose
sarc/o fl esh
thel/o nipple
thorac/o thorax
thyr/o thyroid
trache/o trachea
urethr/o urethra
Table 10.6 Common Medical Suffi xes, Their
Meanings, and Examples of Their Use
Suffi x Meaning Example of use
-algia pain neuralgia
-centesis surgical puncture
to remove fl uid for
analysis
amniocentesis
-coccus berry-shaped
bacterium
streptococcus
-cyte cell lymphocyte
-dynia pain mastodynia
-ectomy removal of, excision tonsillectomy
-genesis producing, forming carcinogenesis
-genic producing, produced carcinogenic
-gram record mammogram
-itis infl ammation tonsillitis
-logy study of morphology
-lysis breakdown,
separation
paralysis
-malacia softening osteomalacia
-megaly enlargement splenomegaly
-oma tumor, collection myoma
-osis condition, usually
abnormal
necrosis
-pathy disease condition cardiopathy
-penia defi ciency leucopenia
-plasia development, growth achondroplasia
-plasty surgical repair angioplasty
-ptosis sagging, drooping visceroptosis
-sclerosis hardening arteriosclerosis
-stasis stopping, control metastasis
SUGGESTED RESOURCES
Chabner, D. (2008). Medical terminology: A
short course. Philadelphia, PA: Elsevier.
Chabner, D. (2010). The language of medi-
cine. Philadelphia, PA: Elsevier.
Stedman, J. M.. (2008). Stedman’s medical
dictionary for the health professions and
nursing. Philadelphia, PA: Lippincott,
Williams & Wilkins.
Steiner, S. S. (2002). Quick medical termi-
nology: A self-teaching guide. Hoboken,
NJ: Wiley.
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J., Wilson, I. B., . . . Moore, R. (2010). Patient-provider
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260 Health Social Work Practice: A Spectrum of Critical Considerations
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Beckman, H. B., & Frankel, R. M. (1984). The effect of
physician behavior on the collection of data. Annals of
Internal Medicine, 101, 692–696.
Benne, K. D., & Sheets, P. (1948). Functional roles of
group members. Journal of Social Issues, 4, 41–49.
Brown, J. B., Boles, M., Mullooly, J. P., & Levinson,
W. (1999). Effect of clinician communication skills
training on patient satisfaction. Annals of Internal
Medicine, 131, 822–829.
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263
11
Religion, Spirituality,
Health, and Social Work
TERRY A. WOLFER
This chapter provides information to assist
social workers in developing religious and
spiritual competence. It begins by briefl y
summarizing data regarding the importance
of religion for Americans. Then it defi nes
religion and spirituality and summarizes a
variety of terms associated with a multidi-
mensional conceptualization of these over-
lapping terms. Next it summarizes some
empirical research on the relationships
among religion, spirituality, and aspects of
physical and mental health. Finally, it intro-
duces a variety of assessment strategies for
use in clinical practice ranging from brief
tools to in-depth interviews.
Chapter Objectives
• Describe levels of religiosity in the Ameri-
can population and why this matters to
health social workers and other health pro-
fessionals.
• Defi ne the concepts of religion and spiri-
tuality, their multiple dimensions, and how
they interrelate.
• Discuss the major pathways that link reli-
gion and spirituality to physical and mental
health and the empirical evidence to sup-
port these pathways.
• Outline a rationale for assessing client
spirituality and major methods of spiritual
assessment (including brief screening in-
struments, pictorial tools, and in-depth in-
terview formats).
• Discuss the importance for health social
workers of understanding a client’s religion
and spirituality.
Several recent and ongoing controversies
demonstrate the complex relationship be-
tween religion and health in American soci-
ety. For example, Oregon was the fi rst state
in the United States to legalize euthanasia—
allowing people to choose and hasten their
own deaths—usually in the context of a termi-
nal illness. Euthanasia remains illegal in most
other states partly because of religiously based
concern for the value of human life.
A recent court case in Oregon involved simi-
lar issues but in a different context. The case
involved members of the Followers of Christ
Church (Mayes, 2010). A couple was charged
with criminal negligence in the death of their
16-year-old son for failing to obtain medical care
for his urinary tract infection. In this case, the
parents rejected medical care in favor of prayer,
anointing with oil, and the ceremonial laying
on of hands. The Followers of Christ Church
is one of several groups, including the better-
known Church of Christ, Scientist, that refuse
medical care on religious grounds. For most
Americans, including most religious people, the
group’s refusal of medical care seems extreme
and unwarranted. But it also represents the sig-
nifi cant diversity of religious belief and practice
in America related to health care and social ser-
vices. (A child welfare worker had visited the
family only months before the teen died.) Health
social workers in situations like this need to bal-
ance respect for the religious rights of patients
and their families with protecting the individual
lives, especially those of minors.
Obviously, euthanasia, or physician-assisted
suicide, differs from refusing medical treatment
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264 Health Social Work Practice: A Spectrum of Critical Considerations
on religious grounds. Nevertheless, the two situ-
ations have some important things in common:
profound religious or ethical disagreements about
issues regarding the value of preserving human
life, quality of life, patient self-determination,
religious freedom, and paternalism.
Another example of religiously based con-
troversy in health care involves organ dona-
tion. Because almost all organ donations come
from patients who are brain dead rather than
cadavers, organ procurement teams often must
obtain consent from family members for organ
removal. Intense debate has arisen regarding
religious and ethical issues surrounding brain
death and organ donation. Two facts make this
debate more intense: (1) The number of dona-
tions remains steady; and (2) the number of
people awaiting organ transplants each year
continues to grow. As a result, the pressure to
donate organs is on the rise.
Bresnahan and Mahler (2010) identify the
perspectives of the fi ve major religious tradi-
tions regarding organ donation in the context
of brain death and then compare the perspec-
tives to information readily available online.
These authors found that health-care work-
ers and most Internet sources typically report
that major religious traditions support organ
donation. However, some Internet Web sites
may contradict this information. This mat-
ters because consumers increasingly turn to
the Internet for information. A health social
worker might be fl ummoxed by the refusal of
family members to consider donation for reli-
gious reasons if the social worker knows that
major religious groups generally approve of
organ donation but does not know of this con-
tradictory information online. As a result, the
social worker might be less able to assist the
family in respectfully exploring their concerns
and reaching a satisfactory decision. Health
practitioners who wish to establish and main-
tain trust with deeply religious families must
treat their religious arguments and points of
view with respect (Röcklinsberg, 2009).
Currently there is heated debate about an-
other ethical issue involving religious per-
spectives: whether health-care practitioners
may refuse to provide medical treatments that
they personally oppose on ethical or religious
grounds. This issue was heightened during the
recent debates about national health-care re-
form. Many Americans agree that health-care
professionals should have a right to refuse to
provide services to which they have moral or
religious objections. At the same time, many
Americans also believe that patients have a
right to information about all legal options
for medical treatment. Occasionally these ex-
pectations are in confl ict. Curlin, Lawrence,
Chin, and Lantos (2007) surveyed a national
sample of physicians regarding controversial
procedures, such as “administering terminal
sedation in dying patients, providing abor-
tion for failed contraception, and prescribing
birth control to adolescents without parental
approval” (p. 593). They found that most phy-
sicians believe it acceptable to express reserva-
tions regarding treatments they fi nd personally
objectionable but also that most feel obligated
to provide information to their patients about
all legal options and willingly refer their pa-
tients to other practitioners for treatments they
oppose. Nevertheless, Curlin and colleagues
(2007) report that a substantial number of phy-
sicians “do not believe they are obligated to
disclose information about or provide referrals
for legal yet controversial treatments” (p. 597).
Health social workers may encounter this
ethical issue in two ways. Like physicians,
some social workers may struggle with decid-
ing whether to help patients obtain interventions
they fi nd morally objectionable, or whether to
inform patients of such interventions. Or they
may work with physicians or other health-care
professionals who oppose certain interventions
that they do not. This puts them in a position
to discuss these controversial interventions
with their mutual patients. Health social work-
ers must be aware of these controversies, draw
their own conclusions, and be prepared to work
with professional colleagues whose beliefs
may differ from their own.
It should not be surprising that health and
health care are fraught with religious, spiri-
tual, and moral issues. In one form or another,
physical and mental health often involve
pain and suffering and questions regarding
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Religion, Spirituality, Health, and Social Work 265
meaning and the beginning and ending of life.
Health and health care involve profound as-
pects of human existence, aspects historically
addressed by religion and religious institu-
tions, and increasingly addressed by scientifi c
research. At the same time, medical innova-
tions have pressed boundaries and opened
doors previously unimagined, often raising
profound religious and spiritual concerns. For
all these reasons, social workers who work in
health care need to be aware of and sensitive
to religion and spirituality in the lives of their
clients, the families of these clients, their col-
leagues, and themselves.
This chapter provides information to as-
sist social workers in developing religious and
spiritual competence. Before going further, it
may be helpful to refl ect on what is known
and not known about religion and spirituality.
What individuals know and believe, to a large
extent, is infl uenced, if not determined, by per-
sonal experience. Individuals, including health
social workers and patients, have positive or
negative experiences within their families,
with friends, and with colleagues. They also
have learned things from formal education and
cultural media of many types. They use their
own experiences and education to understand
others. Although that is true with any topic,
it seems uniquely diffi cult with religion and
spirituality, because it often happens with less
awareness and self-refl ectiveness. Because
people have such different experiences, it is
important to avoid assumptions and work hard
at understanding others. A Brazilian physician
and researcher put it this way:
Studying spirituality scientifi cally is a very
exciting although somewhat precarious
enterprise. This is a fi eld fi lled with preju-
dices, biases for and against spirituality.
Many people have opinions to give, but
usually these judgments are not based on
an in-depth analysis of the evidence avail-
able. It is easy to slip into an intolerant and
Pyrrhonean skepticism or to give a naive ac-
ceptance of doubtful claims. Regardless of
whether we hold spiritual or materialistic
beliefs, religious or anti-religious postures or
not, we have a responsibility to explore the
relationship between spirituality and health
in order to improve our knowledge and our
care for human beings. (Moreira-Almeida,
2007, pp. 3–4)
RELIGIOSITY AND
SPIRITUALITY IN THE
AMERICAN POPULATION
There are a variety of ways to gauge the im-
portance of religion for Americans. Perhaps the
simplest and most direct is simply to ask. For ex-
ample, according to the Pew Forum on Religion
and Public Life (2009), more than half (56%) of
Americans state that religion is “very important”
in their lives. The percentage of people stating
that religion is “very important” ranges from a
low of 36% in New Hampshire and Vermont to
a high of 82% in Mississippi. As another exam-
ple, according to Pew, nearly two fi fths (39%)
of Americans report that they “attend worship
services at least once a week,” while many oth-
ers attend worship services less frequently. By
comparison, according to the 2008 General
Social Survey (www.norc.uchicago.edu/GSS),
more than one quarter (27.5%) of the population
attends worship services at least weekly while
nearly half (48.3%) attend at least monthly.
Again, weekly attendance varies by state, from
a low of 22% in Alaska to a high of 60% in Mis-
sissippi (Pew Forum, 2009). Nearly half (48%)
of Americans report that they “pray at least once
a day,” with a low of 40% in Maine and a high
of 77% in Mississippi (Pew Forum, 2009). By
comparison, according to the 2008 General So-
cial Survey, a majority (57.6%) of Americans
pray at least daily, and others (17.7%) pray
at least once a week (Association of Religion
Data Archives [ARDA], n.d.). More than 90%
of Americans state that they “believe in God
or a universal spirit,” and more than two thirds
(71%) state that they are “absolutely certain” in
this belief (Pew Forum, 2009).
There is considerable disparity in these
variables across the United States. In general,
these surveys suggest that southern states have
higher rates on each of these measures, while
northeastern and western states have lower
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http://www.norc.uchicago.edu/GSS
266 Health Social Work Practice: A Spectrum of Critical Considerations
rates. But the rates suggest that social work-
ers in any geographical area are likely to en-
counter some patients who consider religion
important, who attend worship services on a
weekly basis, and who pray daily. Culturally
competent health social work practice requires
that social workers be prepared to understand
and take account of these realities.
The region in which a social worker prac-
tices will infl uence the likelihood of encoun-
tering people from certain religious traditions.
“The Midwest most closely resembles the re-
ligious makeup of the overall population. The
South, by a wide margin, has the heaviest con-
centration of members of evangelical Protes-
tant churches. The Northeast has the greatest
concentration of Catholics, and the West has
the largest proportion of unaffi liated people, in-
cluding the largest proportion of atheists and ag-
nostics” (Pew Forum, 2009, p. 8). Nevertheless,
given the nation’s signifi cant religious diversity,
social workers may encounter people with little
or no religious faith in any region of the United
States. That is clearly true in metropolitan areas
but often is also true in rural areas. For example,
one may encounter atheists or agnostics in rural
areas and small towns in Nebraska or conserva-
tive evangelicals in Southern California.
This religious diversity is evident in another
way. Although more than 3 out of 4 Americans
(78.4%) identify themselves as “Christian,”
this diverse grouping includes Protestants (in-
cluding evangelical, mainline, and historically
African American denominations), Catholics,
Mormons, Jehovah’s Witnesses, Orthodox,
and others (Pew Forum, 2009). About 1 in 6
(16.1%) Americans report no religious affi li-
ation, including atheists and agnostics (1.6%
and 2.4%, respectively). Slightly fewer than
1 out of 20 Americans (4.7%) identify with
all other religions, including Jewish, Muslim,
Buddhist, Hindu, and others. More than 4 out
of 5 (80.8%) Americans identify with one of
the three Abrahamic traditions (i.e., Christian,
Jewish, Muslim). Looked at another way,
97.2% of Americans who identify themselves
as religious identify with one of the Abraha-
mic traditions, including 93.4% who identify
as Christian (Pew Forum, 2009).
Research on religion and spirituality over
the life span is confounded by age, cohort, and
period effects (Smith, 2009, p. 10). In other
words, some changes in religiosity apparently
result from the aging process itself (i.e., life
cycle experience and concern with mortality)
while others result from conditions and ex-
periences shared by people born at about the
same time or by events that occur at the time
of survey or interview (Smith, 2009). For ex-
ample, research on Millennials—people born
after 1980—shows they are generally less
religious in terms of belief, attendance, and
practice than previous generations of adults
(Pond, Smith, & Clement, 2010). However,
it also fi nds them similar to previous genera-
tions, when they were a similar age. Pond et al.
(2010) conclude: “This suggests that some of
the religious differences between younger
and older Americans today are not entirely
generational, but result in part from people’s
tendency to place greater emphasis on religion
as they age” (p. 2). If previous trends con-
tinue, we may expect young people to become
somewhat more religious as they age.
In summary, while sizable groups within
the American population do not self-identify
as religious, attend worship services, or pray,
large groups of Americans do. Furthermore,
this is true in every region of the country. It is
also true for people across the life span and ap-
pears to increase with age. Finally, people ex-
periencing severe stress, disability, illness, or
dying (and their family members) often have
heightened interest in spirituality, and these
are the very people encountered by health so-
cial workers.
These data suggest that health social work-
ers must be prepared to work with people of
faith. In the United States, that usually will
mean people who identify themselves as
Christian, although that designation itself in-
cludes great diversity. But social workers also
must be prepared to work with people of other
faiths or no religious faith.
The United States often is referred to as a
religiously diverse nation (Eck, 2001). Indeed,
the United States has been religiously diverse
since colonial times. In the early 1600s, for
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Religion, Spirituality, Health, and Social Work 267
example, there were “Huguenots in Charles-
ton, Anglicans in Tidewater Virginia, Catholics
in St. Mary’s City, Swedish Lutherans along
the Delaware River, Quakers and Presbyteri-
ans further up the river, Dutch Reformed in
Manhattan, Puritans in New England, Baptists,
and Heaven-knows-what-else in Rhode Island”
(Gaustad, 1968, p. 835). Notably, this diver-
sity occurred primarily within the Christian
tradition. But from the beginning, American
religious diversity also included and was in-
fl uenced by Native American and African reli-
gious traditions. “Since then,” as Smith (2002)
writes, “America has continued to both import
foreign and spawn indigenous religions” (p. 1).
Historically, changes in U.S. immigration
laws signifi cantly increased the fl ow of immi-
grants, many of who come from non-Christian
traditions. In particular, the Immigration and
Nationality Act of 1965 substantially increased
the fl ow of followers of other religious tradi-
tions. According to the 2000 census, 11.1% of
the U.S. population was foreign born. After
Mexico, the leading countries are China,
the Philippines, India, and Vietnam. “While
Americans still overwhelmingly adhere to
their traditional faiths, the United States is
home to all of the world’s religions and non-
Judeo-Christian religions make up a small, but
growing, share of America’s religious mosaic”
(Smith, 2002, p. 4).
WHY CONSIDER RELIGION
AND SPIRITUALITY IN
HEALTH CARE?
Demographics alone suggest that social work-
ers must consider religion and spirituality when
conducting psychosocial assessments with pa-
tients. Because so many Americans report that
religion and spirituality are important parts of
their lives and regularly participate in individ-
ual and corporate religious activities, it seems
important that social workers routinely inquire
about those activities. In health-care settings,
however, it is even more important. For many
people, religion and spirituality have numer-
ous profound connections with their health
and well-being as well as their illnesses, suf-
fering, disability, recovery, coping, and dying.
According to the 2004 General Social Survey,
more than half of Americans (51.2%) agree
that at least daily, “I fi nd comfort in my religion
or spirituality” (ARDA, n.d.). Another quarter
(26.9%) agree with this statement “some days”
or “most days.” Likewise, the same survey
found that nearly half (48%) agree that at least
daily, “I fi nd strength in my religion or spiritu-
ality,” and another quarter (28.5%) agree with
this statement “some days” or “most days”
(ARDA, n.d.). Indeed, religion and spirituality
often represent important resources for pre-
venting or coping with illness and dying. “By
keeping patients’ beliefs, spiritual/religious
needs and supports separate from their care,
we are potentially ignoring an important ele-
ment that may be at the core of patients’ cop-
ing and support systems and may be integral to
their well-being and recovery” (D’Souza, 2007,
p. S57). More than that, “religion provides
things that are good for health and well-being,
including social support, existential meaning,
a sense of purpose, a coherent belief system
and a clear moral code” (Eckersley, 2007,
p. S54). Of course, these benefi ts also can come
from other sources, but they often are associ-
ated with religion. “The process of ‘human-
izing’ health care involves the consideration
of individuals’ unique psychosocial reso urces,
including their spirituality, during illness and
recovery. Spirituality encompasses feelings of
connection to others and fi nding meaning in
life” (Dalmida, Holstad, Dilorio, & Laderman,
2009, p. 120).
DEFINING RELIGION
AND SPIRITUALITY
It may be helpful to consider formal defi nitions
for the terms religion and spirituality and how
they are related. In fact, there are many con-
fl icting defi nitions for these terms. More than a
decade ago, Scott (1997) scanned 20th-century
social science for defi nitions of religion and
spirituality. She found 31 defi nitions of reli-
giousness and 40 defi nitions of spirituality.
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268 Health Social Work Practice: A Spectrum of Critical Considerations
Interestingly, she found that these defi nitions
were quite evenly distributed across nine con-
tent categories, suggesting both considerable
diversity within defi nitions for either religious-
ness or spirituality and considerable overlap
between the two. Scott’s fi ndings should alert
health social workers to the diffi culty and
complexity of defi ning the terms.
Adding to this complexity, in recent de-
cades, popular and scholarly understandings
of religion and spirituality have changed. “The
word ‘religion’ comes from the Latin root re-
ligio which signifi es a bond between humanity
and some greater-than-human power” (Hill et
al., 1998, p. 15). Historically, it was under-
stood to mean: “(1) a supernatural power to
which individuals must respond; (2) a feeling
present in the individual who conceives such
a power; and (3) the ritual acts carried out in
respect of that power” (p. 15). These meanings
depict religion as a profound and pervasive
part of human experience. However, growing
secularism and disillusionment with religious
institutions have disrupted the historically
close relationship between religion and spiri-
tuality. Many people now differentiate spiritu-
ality and religion, associating spirituality with
personal experience of the transcendent and
religion with possible restrictions and barriers
to such experience. As a result, they tend to
view spirituality more positively and religion
more negatively (p. 16) and also to emphasize
spirituality as subjective (i.e., individualized)
and religion as institutional.
Distinguishing between religion and spiri-
tuality makes it possible for people to identify
themselves as either religious or spiritual, both
religious and spiritual, or neither. In fact, the
General Social Survey found that while most
Americans identify themselves as equally reli-
gious and spiritual, a growing minority in 2008
identify themselves as more spiritual than reli-
gious, compared with the number who did so
in 1998 (Smith, 2009).
Despite the trend, dichotomizing religion
and spirituality in this way may be problem-
atic. Hill and colleagues (1998) argued that
dichotomizing religion and spirituality poses
several dangers. “The fi rst subtle danger can
be expressed in two forms of polarization:
individual vs. institutional and good vs. bad”
(p. 18). They go on to explain that speaking
of individual spirituality and institutional re-
ligion ignores two basic facts: “(1) virtually
all religions are interested in matters spiritual,
and (2) every form of religious and spiritual
expression occurs in some social context.” In
other words, religions consistently address
matters of transcendent or ultimate concern,
and all beliefs and practices, whether religious
or spiritual, occur in a social and cultural envi-
ronment. Furthermore, Hill et al. (1998) write,
“to argue that spirituality is good and religion
is bad (or vice-versa) is to deny a substantial
body of research demonstrating that both reli-
gion and spirituality can be manifested in both
healthy and unhealthy ways” (p. 18). A simple
dichotomy obscures this complexity.
Hill and colleagues (1998) identify yet an-
other danger, one they argue is perhaps most
serious: losing the distinctive sacred core of
religion and spirituality. In religion, the sacred
“has to do with a higher power, God, or ul-
timate truth. This sacred content is often de-
fi ned through institutional mechanisms, such
as ecclesiastical authority, sacred writings, and
traditions” (p. 19). In spirituality, the sacred
also has to do with matters of transcendent or
ultimate concern (i.e., beyond ordinary expe-
rience or material existence). Yet spirituality
often emphasizes a highly individualized, ex-
periential path for each person. This potentially
trivializes, and may even obscure, the search
for the sacred by individuals. In light of these
issues, the authors agree that the sacred core is
central to the experience of both religion and
spirituality. Furthermore, they agree that both
religion and spirituality involve a search for
the sacred. Thus, they defi ne spirituality and
religion in ways that highlight their similarities
(see Table 11.1).
These defi nitions highlight the signifi cant
overlap these constructs have in the lives of
people. Spirituality involves a search for the
sacred. Likewise, religion involves a search for
the sacred, a search for other, nonsacred goals
in a context primarily concerned with the sa-
cred, or both. Religion also involves the means
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Religion, Spirituality, Health, and Social Work 269
and methods of this search, supported by a
group. In short, while spirituality and religion
both involve a search for the sacred, religion
also incorporates the sociocultural context
(and other goals in that context). Defi ned in
this way, spirituality for an individual always
involves a search for the sacred. But religion
for an individual may involve a search for the
sacred or a search for nonsacred goals (e.g.,
social identity, health) in the context of a group
organized to search for the sacred. The group
may legitimate nonsacred goals, the search for
either sacred or nonsacred goals, and the meth-
ods or means of the search. By these criteria,
spirituality may be considered as the more
fundamental category, with religion being
the more concrete one. Consistent with these
defi nitions, Hufford (2005) defi nes spirituality
most simply as “personal relationship to the
transcendent” and religion as “the community,
institutional aspects of spirituality” (p. 2).
The importance of this emphasis on the
sacred in both religion and spirituality be-
comes more apparent when one considers it
in terms of research. Without this emphasis
on the sacred, spirituality cannot be readily
distinguished from humanism or positive psy-
chology (Koenig, 2008). If that is the case,
researchers cannot distinguish between and
draw clear conclusions about the relationships
among spirituality, humanism, positive psy-
chology, and health. These distinctions be-
come especially diffi cult in relation to mental
health. As Koenig notes, spirituality research-
ers sometimes confuse causes and conse-
quences. “Simply defi ning spirituality as good
mental health and including mental health in-
dicators as part of the measures of spirituality
precludes any ability to actually study the rela-
tionship between spirituality and mental health”
(p. 18). The result would be tautological, essen-
tially correlating a concept with itself.
Koenig (2008) argues that the meaning of
spirituality has changed and currently is too
vague for research purposes. But this ambigu-
ity actually may be useful in clinical care set-
tings. In clinical practice, social workers must
attend to the idiosyncratic perspectives and
needs of individual clients. Thus, Koenig ad-
vocates the use of primarily religious catego-
ries for research purposes—because they lend
themselves to more reliable operationaliza-
tion—with the addition of spiritual categories
for clinical care—because these encourage
and enable understanding of client uniqueness.
Before reviewing research on the relation-
ships among religion, spirituality and health, it
is helpful to explore further how these concepts
can be operationalized, whether for research or
for clinical assessment. The next section clari-
fi es the numerous ways people can be involved
with religion and spirituality.
Dimensions of Religiosity
and Spirituality
Early research on religion and health typically
focused on the patient’s religious affi liation or
denomination. In approximately 250 studies
conducted between 1937 and 1984, the “inves-
tigation of religion [was] confi ned to compari-
sons of morbidity and mortality rates across
religious denominations’’ (Levin & Markides,
1986, p. 589). Often these distinctions went no
further than Catholics, Protestants, and Jews.
Beginning in the 1960s, some health research-
ers began asking respondents how often they
attended religious services, generally referred
to as “church attendance” in the research
Table 11.1 Defi ning Religion and Spirituality
Criterion for Spirituality
The feelings, thoughts, and behaviors that arise from a
search for the sacred. The term “search” refers to attempts
to identify, articulate, maintain, or transform. The term
“sacred” refers to a divine being, ultimate reality, or
ultimate truth as perceived by the individual.
Criterion for Religion/Religiousness
The feelings, thoughts, and behaviors that arise from a
search for the sacred (a divine being, ultimate reality, or
ultimate truth as perceived by the individual); and/or a
search or quest for non-sacred goals (such as identity,
belongingness, meaning, health, or wellness).
Source: From “Defi nitions of Religion and Spirituality,”
by P. C. Hill, K. I. Pargament, J. P. Swyers, R. L.
Gorsuch, M. E. McCullough, R. W. Hood, and R. F.
Baumeister, 1998. In D. B. Larson, J. P. Swyers, and
M. E. McCullough (Eds.), Scientifi c Research on Spirituality
and Health: A Consensus Report (p. 21). Rockville, MD:
National Institute of Healthcare Research.
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270 Health Social Work Practice: A Spectrum of Critical Considerations
literature. It usually was measured by a single
survey item, such as “How often do you attend
Sunday worship services?” (Hall, Meador, &
Koenig, 2008, p. 140). Subsequently, research-
ers began to use self-reported, global assess-
ments of religion. These often take the form
of a question asking “To what extent do you
consider yourself to be a religious person?”
(p. 142) or “How important is religion for
you?” (Veenhoven, 2003, p. 145). In the past
decade, however, researchers have attempted
to conceptualize and measure numerous addi-
tional dimensions of religion and spirituality.
This section briefl y reviews these dimensions
as a basis for understanding current empirical
research and, more generally, expanding our
recognition and understanding of religion and
spirituality in the lives of patients.
Table 11.2 compares domains of religious-
ness identifi ed by several groups of scholars.
King and Hunt (1972) led an early attempt
to identify domains empirically by factor-
analyzing numerous religiously oriented items.
Larson, Swyers, and McCullough (1998) pres-
ent a “consensus report,” based on a series of
conferences sponsored by the John Temple-
ton Foundation and the National Institute for
Healthcare Research. Their report refl ects the
thinking of more than 70 prominent research-
ers in the area of religion and spirituality.
One chapter of the report provides a defi ni-
tion of religion and spirituality (Hill et al.,
1998). Funded by the Fetzer Institute and the
National Institute on Aging (NIA), a smaller
national working group of scholars created a
new tool, the Multidimensional Measurement
of Religiousness/Spirituality for Use in Health
Research (Fetzer Institute/National Institute of
Aging, 1999). This measure includes 11 do-
mains of religion and spirituality. The instru-
ment has been embedded in the General Social
Survey, and domain-specifi c components have
been widely used in health research. Hill and
Hood (1999) compiled what remains the larg-
est collection of standardized measures of
religiosity and developed a list of domains.
Likewise, Koenig, McCullough, and Larson
(2001) identifi ed a variety of domains based
on their comprehensive review of the empirical
literature through 2000. Their review included
more than 1,200 studies and 400 research re-
views. Table 11.2 lists the various domains
identifi ed by these groups to highlight unique
and overlapping categories.
Going well beyond demographic variables
reported earlier, the concepts listed in Table
11.2 allow a fi ne-grained understanding of re-
ligiosity and spirituality in people’s lives. Of
these dimensions, religious affi liation is the
most widely used by researchers. As recently
as four decades ago, scholars and health pro-
fessionals were content to inquire whether
people were Catholic, Protestant, or Jewish.
But changes in religious demographics result-
ing from social dynamics and immigration
have made these categories inadequate. Like-
wise, another common measure of religious
participation—weekly worship attendance—
has been recognized as an overly crude mea-
sure of religiosity.
Table 11.2 makes clear that numerous other
dimensions of religion and spirituality may be
signifi cant for particular populations of pa-
tients seen in health or other settings. A reli-
gious or spiritual history may be the best means
of assessing these intertwined and overlapping
dimensions. A history identifi es crucial, often
idiosyncratic, formative factors in the client’s
experience. Religious and spiritual histories
are especially well suited to clinical practice,
but because they are highly qualitative, they
are less amenable to research on religion and
health outcomes. These dimensions are inter-
related. For example, besides participating in
weekly worship services, many people par-
ticipate in private religious activities, such as
prayer, watching religious television, listen-
ing to religious radio, meditation, or reading
scripture or other religious literature. Such
activity may be encouraged by organizational
participation but also may occur in its absence.
Religious activities—both organizational and
private—probably contribute to people’s re-
ligious knowledge, beliefs, and values (three
separate yet overlapping dimensions). Reli-
gious knowledge, beliefs, and values may fos-
ter religious meaning making and appraisals
regarding one’s own life. Furthermore, they
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Religion, Spirituality, Health, and Social Work 271
Table 11.2 Dimensions of Religion and Spirituality
King and Hunt
(1972)
Larson, Swyers, and
McCullough (1998)
Fetzer Institute/
National Institute
of Aging (1999)
Hill and Hood
(1999)
Koenig,
McCullough, and
Larson (2001)
Creedal assent Beliefs and values Beliefs Belief and practice Belief
Belief versus nonbelief
Certainty of belief
Orthodoxy of belief
Religious knowledge Values Moral values
Preference or affi liation Religious
preference
Affi liation or
denomination
Organizational
activity
Social participation Organizational
religiousness
Institutional
religion
Organizational
religiosity
Congregational
involvement
Membership
Church attendance Attendance at religious
services
Social activity
Study/Prayer groups
Church leadership
(elder, deacon)
Sacramental/Ritual
participation
Financial support Financial support
Devotionalism Private practices Private religious
practices
Spirituality and
mysticism
Nonorganizational
religiosity
Private prayer
Private reading
(scripture/theology)
Religious television/
radio
Salience Subjective religiosity
Behavior Importance of religion
Cognition Self-rating religiosity
Orientation to
religion
Commitment Commitment Commitment
orientation
Commitment and
motivation
Growth and striving Intrinsic
Extrinsic Extrinsic
Meaning “Quest” (search for truth)
Experiences Daily spiritual
experiences
Experience Experience
Religious well-being
Coping Coping Coping and
problem solving
Coping
History History History (spiritual history)
Development Maturity
(continued)
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272 Health Social Work Practice: A Spectrum of Critical Considerations
Table 11.2 Dimensions of Religion and Spirituality (Continued)
King and Hunt
(1972)
Larson, Swyers, and
McCullough (1998)
Fetzer Institute/
National Institute
of Aging (1999)
Hill and Hood
(1999)
Koenig,
McCullough, and
Larson (2001)
Attitudes Attitudes and Practices
Motivation for regulating
and reconciling
relationships
Forgiveness Forgiveness
Support Support
Concept of God
Fundamentalism
View of afterlife
Divine intervention
Source: Adapted from “Measuring Religiousness in Health Research: Review and Critique,” by D. E. Hall, K. G.
Meador, and H. G. Koenig, 2008, Journal of Religion and Health, 47(2), 134–163.
may contribute to religious and spiritual coping
(i.e., the use of religious ideas and practices to
deal with stressors). Furthermore, participation
in organized religiosity may specifi cally con-
tribute to exchange of religious and spiritual
support (i.e., support within religious groups
or for religious reasons, a form of social sup-
port). Religious and spiritual thinking and be-
havior also may lead to religiously infl uenced
motivation. For example, religiosity may pro-
vide substantive content for ideals and goals
(e.g., honesty, fi delity, apology, forgiveness).
Over time, it may encourage behavior consis-
tent with these ideals and, subsequently, build
commitment to their achievement. Some peo-
ple report experiences of the sacred, ranging
from a sense of peace or awe to more explicit
and direct involvement, such as conversion or
healing. Just as people vary in their experience
of the sacred, they also differ in their sense of
subjective or personal religiosity. Some people
experience a sense of quest and adventure in
relation to religious and spiritual experience,
and many people can identify the presence or
absence of spiritual well-being in their lives.
Do religion and spirituality do all of these
things? Perhaps not on the individual level, but
for groups of people in various combinations,
they probably do. Although religious and
spiritual involvement may vary dramatically
between individuals and groups, these differ-
ences provide some of the key dimensions for
understanding and assessing them. As Krause
(2008) argues, it is time to move beyond simple
conceptualizations of religion and spirituality.
“If researchers hope to better understand the
relationship between religion and health, then
more attention must be given to the complex
ways in which religion is measured” (pp. 5–6).
A complete list of religiosity domains may
serve four purposes.
1. It reveals the multifaceted nature of the un-
derlying concepts of religion and spiritual-
ity.
2. It provides a starting point for researchers
wishing to operationalize these concepts,
and for practitioners considering how to in-
clude them in client assessment.
3. It provides a basis for understanding and
interpreting empirical research on the
relationships between religion and spiritu-
ality and health.
4. More generally, it may help to untangle
vague and overlapping conceptualizations
of religion and spirituality and to develop
more precise understanding of these im-
portant concepts. This will provide a
foundation for exploring how religion and
spirituality relate to health.
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Religion, Spirituality, Health, and Social Work 273
EMPIRICAL RESEARCH ON
RELIGION AND HEALTH
In 2001, Koenig et al. published the Handbook
of Religion and Health, a 700-page review of
empirical research on the relationship between
religion and a variety of physical and mental
health conditions. The authors examined more
than 1,200 research studies and 400 research
reviews, with the goal of including all English-
language published studies available at that
time. Koenig and his colleagues published the
second edition of the Handbook in 2011, and
the current edition reviews research from the
past decade. Refl ecting the dramatic growth of
scholarly interest in the topic, more research
has been conducted in the decade since the
fi rst edition was published than in the entire
previous century (H. Koenig, personal com-
munication, February 8, 2008). Rather than
provide a comprehensive review, this section
discusses the major pathways through which
religion and spirituality are theorized to infl u-
ence health.
In the burgeoning empirical literature, sev-
eral potential pathways have been theorized
for the infl uence of religion and spirituality on
health. Some of these are less inclusive while
others involve biological and physiological
mechanisms. The latter are not reviewed in
this chapter.
First, some religious groups prescribe and
encourage what Oman and Thoreson (2005)
refer to generally as lifestyle health behav-
iors. For example, George, Ellision, and Lar-
son (2002) note that Mormons prohibit use of
alcohol and illegal drugs, cigarette smoking,
and nonmarital sex. Mormons also provide
guidelines for diet and sleep. Likewise, Sev-
enth Day Adventists prohibit consumption of
alcohol, illegal drugs, tobacco, and caffeine
and encourage a vegetarian diet and Sabbath
keeping. Less directly, many religious groups
promote gratitude for the gift of life and en-
courage respect and care for the human body
as the temple of God (Park, 2007, p. 322) or
as an instrument of God’s service (Oman &
Thoreson, 2005). These positive messages
are assumed to contribute to healthy choices
(George et al., 2002).
Indeed, empirical data supports this psy-
chosocial mechanism. Based on their review
of evidence-based literature, for example,
Powell, Shahabi, and Thoreson (2003) con-
clude that “the relationship between religion
or spirituality and cardiovascular death is, to a
large extent, explained by the encouragement
that religion or spirituality provides for living
a healthier lifestyle” (p. 42). As another ex-
ample, religious prohibitions regarding smok-
ing represent a major factor for some religious
groups in lowered tobacco-related cancers.
Despite substantial recent declines in smok-
ing, tobacco-related cancers remain the lead-
ing cause of cancer deaths in the United States
(Centers for Disease Control [CDC], 2010).
Building on recent psychological research,
Geyer and Baumeister (2005) proposed spiri-
tual self-regulation as a means of understand-
ing how people use religion to increase their
self-control in an attempt to align their lives
with important values.
Related to healthy behaviors, religion is
associated with increased use of preventive
health care and adherence to medical regi-
mens (Oman & Thoreson, 2005, p. 446). For
example, in a nationally representative sample
of older adults, Benjamins and Brown (2004)
found that people who reported high levels
of religiosity were more likely to use preven-
tive services (fl u shots, cholesterol screening,
breast self-exams, mammograms, pap smears,
and prostate screening). They speculate that
religious beliefs may motivate healthier living
and use of preventive care, or that religious set-
tings may directly provide information, instru-
mental support (e.g., transportation), or on-site
preventive services. Either by encouraging use
of preventive health care or facilitating access
to such care, religious involvement appears to
increase older adults’ use of preventive health
care and to improve their health outcomes.
More broadly, most religious groups pro-
vide signifi cant social support for their mem-
bers, especially when members need it most
(Koenig, 2008, p. 57f). “This is not surprising
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274 Health Social Work Practice: A Spectrum of Critical Considerations
because virtually all religions in the world extol
the virtues of loving one another and caring for
those who are in need. In fact, this is one rea-
son why some researchers maintain that social
ties in the church are specially close-knit and
may be more benefi cial than social relation-
ships that arise in secular setting” (Krause,
2008, p. 1216). Like religion and spirituality,
social support is a complex, multidimensional
construct. This creates the possibility of nu-
merous relationships. For example, religious
and spiritual involvement correlates with
larger and more stable social networks, more
interaction within social networks, greater per-
ception of social and emotional support, and
greater satisfaction with support (George, Lar-
son, Koenig, & McCullough, 2000; Oman &
Thoreson, 2005).
Social support provides a context for in-
dividuals to be open and disclose their health
conditions and concerns. In turn,
disclosure evokes cognitive and affective
responses, which can ameliorate stress and
moderate its deleterious effects on human
physiology. In addition, confi ding in others,
human or divine, and reinforcing reciprocal
bonds of assistance among individuals, or
with divine others, has both health-promotive
and disease-preventive consequences for
populations, as shown through decades of
social and epidemiologic research on social
support. (Levin, 2009, p. 90)
Religious groups often promote what Krause
(2008) terms “close companion friends,” an in-
tense type of relationship uncommon outside
of families.
In research on religion and health, a com-
monplace fi nding is that people’s religious in-
volvement is related to both the amount and
the quality of social support they experience
(Koenig, 2008). This is especially true for
older adults and for people with health prob-
lems. For example, older adults are more likely
to be involved with religious groups than other
social groups, and controlling for other factors,
this involvement has greater effects on their
happiness and health (Koenig, 2008; Krause,
2008).
Religious traditions provide signifi cant
resources to help members fi nd meaning and
purpose in their struggles, to make sense of their
experience, and to establish a sense of coherence
(George et al., 2002). Through religion, “people
understand their role in the universe, the purpose
in life, and develop the courage to endure suf-
fering” (George et al., 2000, p. 111). Interest-
ingly, there is no assumption that the meanings
are positive. It appears that simply being able to
make sense of experience is most critical.
Likewise, religious traditions provide a vari-
ety of coping resources to assist people in deal-
ing with illness, suffering, and death (Koenig,
2008). Somewhat ironically, for many people,
trust in God appears to enhance their sense of
control and to promote active coping (Hood,
Hill & Spilka, 2009; Pargament, 1997). “For
example, persons adopting a ‘collaborative’
coping orientation with the divine, viewing
God as a partner, experienced better outcomes
than persons using either a primarily ‘deferring’
coping style (involving passive attitude toward
problems) or a primarily ‘self-directive’ coping
style” (Oman & Thoreson, 2005, p. 445).
Although religious coping may be benefi –
cial in general, it appears especially benefi cial
for people dealing with chronic illness or with
the loss of a loved one (Hood et al., 2009).
There is limited evidence for benefi cial ef-
fects of religious coping on physical health; it
appears that the effects may be obscured by
the failure to distinguish negative and positive
coping (Park, 2007). Nevertheless,
an impressive number of studies done in a
wide range of social settings indicate that
people who rely on positive religious cop-
ing responses are more likely to avoid the
pernicious effects of stress than individuals
who do not turn to religion in an effort to
deal with the adversity that confronts them.
(Krause, 2004, p. 1217)
Psychosocial resources, such as self-esteem,
self-effi cacy, and mastery, also may partly ex-
plain the health benefi ts of religious participa-
tion. Religious participation is associated with
higher levels of these psychosocial resources,
although the evidence to support this connection
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Religion, Spirituality, Health, and Social Work 275
is based on cross-sectional data (Krause, 2008).
There also is evidence that these psychosocial
resources are associated with better health, al-
though, again, this conclusion rests largely on
the results of cross-sectional studies
Most religious traditions endorse forgiving
attitudes and behaviors (McCullough, Bono &
Root, 2005; Oman & Thoreson, 2005). Krause
(2004) suggests that forgiveness may help
people in several ways. First, those unwilling
to forgive “often relive the hurtful act over
and over” (p. 1218). This rumination may pro-
duce stress and lead to poor health outcomes.
Conversely, “forgiving others helps restore and
renew social ties that were previously a source
of signifi cant support.” These ties may pro-
duce better health. Finally, “forgiving others
promotes positive emotions.” At noted previ-
ously, these actions exert a benefi cial effect on
health. Furthermore, interventions to promote
forgiveness improve psychological well-being,
reduce chronic stress and anger, reduce anxi-
ety and depressive symptoms, and increase
self-esteem and hope (Enright & Coyle, 1998;
as cited in McCullough et al., 2005). For these
reasons, it seems plausible that forgiveness
may contribute to improved health.
Likewise, religious traditions promote altru-
ism and service to others by offering both reasons
and opportunities for involvement. For example,
volunteering, philanthropy, altruism, and other
kinds of helping behavior are generally higher
among religious people, and these activities are
associated with both mental and physical health
(Koenig, 2008). “Regular church attendance
may encourage meaningful social roles that pro-
vide a sense of self-worth and purpose through
the act of helping. This is in contrast to the more
common conceptualizations of social support
where the emphasis is on being helped” (Powell
et al., 2003, p. 48). Beyond this, religious in-
volvement promotes formal volunteer work and
informal helping, both of which may be associ-
ated with improved health outcomes.
Religious and spiritual people often exhibit
qualities such as gratitude, hope, optimism,
and compassion (referring to, respectively, an
appreciation for life, expectancies of favorable
outcomes, a sense that one can achieve these
outcomes, and a deep and abiding sense of
love for all of humankind) may provide in-
dividuals with a deeper sense of meaning in
life and a source of direction and comfort in
diffi cult times. (Park, 2007, p. 322)
Furthermore, they may experience positive
psychological states as a result of better cop-
ing, meaning derived from religious goals, the
experience of forgiveness, helping others, and
faith-related expectancy (Oman & Thoreson,
2005). If so, these positive psychological states
may contribute to positive health outcomes.
These positive emotional states, in turn,
may affect health by reducing allostatic load
(AL). AL represents the cumulative wear and
tear on one’s body from adapting to the de-
mands of everyday living. These demands
require ongoing adjustments to maintain phys-
iological systems within normal operating
ranges. The adjustment process itself may be-
come damaged, especially when the demands
are chronic, the adjustment is inadequate, or
for other reasons it does not shut off. Thus, AL
is conceptualized as a failure of bodily systems
to regulate normally and posited to mediate the
relationship between stress and health, thus in-
creasing the risk of illness (Maselko, Kubzan-
sky, Kawachi, Seeman, & Berkman, 2007).
Oman and Thoreson (2005) speculate that at-
tachment styles also provide a plausible pathway
between religion and health. Secure attachment
to God is linked with greater life satisfaction
and lower levels of anxiety, depression, and
loneliness, and these, in turn, are related to better
physical health (Oman & Thoreson, 2005).
Considering macro-level relationships be-
tween religion and health, faith-based efforts
to improve community health are becoming
more popular. Griffi th and colleagues (2010)
describe a community health promotion ef-
fort that was successful in partnering with
African American churches in the Flint, MI,
area to reduce HIV/AIDS. Working with
these churches, the community groups were
able to reach over 4,000 congregants across 11
churches to increase awareness, knowledge, and
understanding of human immunodefi ciency
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276 Health Social Work Practice: A Spectrum of Critical Considerations
virus (HIV)/acquired immunodefi ciency syn-
drome (AIDS). Duru, Sarkisian, Leng, and
Mangione (2010) conducted the fi rst random-
ized controlled trial of a faith-based physical
activity program to increase physical activity
in older African American women at three
Los Angeles churches. As part of that trial,
congregants followed a curriculum that in-
cluded Bible reading and prayer in addition
to walking. Their research suggests that a
church-based physical activity program may
be successful in promoting physical activ-
ity among members. A majority of the par-
ticipants in rural North Carolina focus groups
about community kidney disease screenings
by Jennette, Vupputuri, Hogan, Falk, and
Harward (2010) suggested that such screen-
ings would be most successful if held in com-
munity churches. One focus group member
stated: “I think the church is a good place if
you want to start in the community because
that’s a common place, no matter how poor
or rich we are” (p. 7). Campbell et al. (2007)
suggest that collaborative partnerships with
churches can improve community health and
that program leaders of such partnerships
should incorporate key components of com-
munity-based participatory research (such as
involving churches in program design and de-
livery) to be most effective.
This brief summary of potential pathways
linking religion and health refl ects a growing
body of empirical evidence. “To summarize,
we conclude that a relationship between reli-
gion or spirituality and physical health does
exist but that it may be more limited and
more complex than has been suggested by
others” (Powell et al., 2003, p. 50). As Park
(2007) notes, “[W]hile it is useful to keep
[the pathways] conceptually distinct, they
likely interact and overlap in many ways”
(p. 321).
Suicide
Social workers in many settings, including
health care, encounter clients who contemplate
or attempt suicide. It is well known that in the
United States suicide attempts and suicide rates
vary signifi cantly by gender, age, and ethnic-
ity (CDC, 2010). Suicide is a leading cause of
death among young people but actually occurs
more frequently among older adults. Non-
Hispanic Whites, American Indians, and Native
Alaskans are twice as likely to commit suicide
as other ethnic groups (CDC, 2010). It may be
less known that suicide risk and suicide rates
are also associated with religion.
Research consistently has demonstrated
that suicide rates vary by religious tradition
and by level of participation: Both religious
affi liation and religious participation serve
as protective factors for suicide (Gearing &
Lizardi, 2009; Lizardi & Gearing, 2010). In
a review of 68 studies, Koenig and Larson
(2001) report that 84% found lower rates
of suicide or more negative attitudes toward
suicide among more religious persons. Most
religious traditions condemn taking one’s
own life, provide reasons for living, and dis-
courage aggressive behavior and hostility.
More broadly, religious participation also
may contribute to social support and increase
emotional well-being. Because of this protec-
tive potential, psychosocial assessment for
suicide risk should consider religion. Indeed,
Gearing and Lizardi (2009) recommend that
social workers ask a variety of questions to
assess: the importance of religion to the cli-
ent, the role of religiosity in previous times
of stress and diffi culty, how suicide is con-
ceptualized in the client’s religion, and the
potential benefi t of encouraging the client’s
religiosity (pp. 237–238).
SPIRITUAL ASSESSMENT
The previous discussion about components of
religion and spirituality alerts us to the mul-
tiple ways that religion and spirituality may
relate to health. Furthermore, it suggests ways
that religion and spirituality may infl uence the
development and course of particular diseases
and psychosocial problems across the life
course. It suggests the importance of consid-
ering religion and spirituality as an integral
part of a thorough psychosocial assessment
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Religion, Spirituality, Health, and Social Work 277
process. Indeed, several authors have offered
a variety of reasons for including religion and
spirituality in the assessment process.
If the spiritual and religious diversity pres-
ent in the United States is taken seriously,
data may be overwhelming. But it may be
less important that social workers know de-
tails about specifi c religions and spiritual ap-
proaches and more important that they know
how to ask about a patient’s religious and
spiritual beliefs and involvement. As a subset
of cultural competence, religious and spiritual
competence requires the ability to explore the
unfamiliar. Given time and attention, patients
often are willing to teach health-care provid-
ers about their health concerns and how these
relate to religion or spirituality. Barnes and
Harris (2001) recommend “respectful curios-
ity” as an important way to approach clients.
“The broader skill—as in all effective medi-
cal care—involves developing the capacity to
listen differently, in a way that is personally
respectful, clinically insightful, and aimed at
understanding rather than agreement or dis-
agreement” (pp. 7–8).
In a brief chapter such as this, it is impos-
sible to provide an adequate introduction to
the variety of religious and spiritual beliefs
and practices that health social workers may
encounter in their professional practices.
Furthermore, there is great diversity within
as well as between religious groups. Thus,
religiously competent practice requires con-
tinual efforts to individualize assessments
and to avoid stereotyping and making as-
sumptions.
Rationale for Spiritual Assessment
There are a number of reasons for social
workers to address religion and spirituality
with patients and their families. As previ-
ously discussed, many Americans identify
themselves as religious or spiritual and in-
dicate that this is important for them. Things
that are important for people, such as reli-
gion and spirituality, likely will have impli-
cations for their health care. If so, it appears
that social workers will want to determine
whether this is true for particular patients
and incorporate this information into their
work with those patients. For example, re-
ligion and spirituality may shape people’s
beliefs about pain and suffering, quality of
life, meaning and purpose, and mortality.
Those beliefs also may infl uence patients’
access to social support and other resources.
The purpose of conducting religious or spiri-
tual assessment is to clarify their roles in the
lives of patients, which allow the develop-
ment of more complete and better-informed
treatment plans.
Why should we assess and attempt to ad-
dress religious and spiritual issues with our pa-
tients? Koenig (2008) and others give several
reasons (for additional information, see Canda
& Furman, 2010). As discussed previously,
many patients are religious, and most would
like to have their faith considered in their
health care (Cloninger, 2006; Koenig, 2008).
Also, a large proportion of Americans iden-
tify themselves as religious or spiritual, and
of these, a large percentage report religion or
spirituality is an important part of their lives.
For these patients, inquiring about religion
and spirituality signals an interest in the whole
person and may further enhance the treatment
relationship and the therapeutic effects of
treatment (D’Souza, 2007).
Religion and spirituality infl uence people’s
efforts and ability to cope with illness, whether
physical or mental. More specifi cally, religion
may infl uence “motivation toward self-care,
willingness to cooperate with plan treatments,
and ability to comply with medical therapies”
(Koenig, 2008, p. 157). Because these are
important contributors to treatment success,
it is important for social workers and other
health-care providers to take religion into ac-
count. In particular, religion may be critical for
discharge planning and aftercare—a frequent
focus for social workers in health settings—
because religious groups often represent a
signifi cant source of concrete assistance (e.g.,
transportation, meals) and social support
for their newly discharged members. Many
churches, for example, have health ministries
or outreach efforts.
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278 Health Social Work Practice: A Spectrum of Critical Considerations
In addition, religious beliefs and practices
may infl uence medical outcomes (Koenig,
2008). As Koenig suggests, unmet spiritual
and emotional needs may create physiological
stress, thus impacting body systems. These,
in turn, infl uence the way patients respond to
surgical and medical treatments. Thus, identi-
fying and trying to address spiritual needs may
reduce stress and enhance medical treatment.
Hospitalized patients often are isolated
from their usual spiritual care and support. Pa-
tients may be hospitalized far from home and
their spiritual communities. Even when they
are not distant, their clergy may have limited
time and ability to visit. In such situations, so-
cial workers may play a critical role in helping
patients acquire spiritual care and support,
by initiating contact with the patient’s clergy,
clergy within the community, or the hospital
chaplain. In addition, most clergy will have
limited understanding of medical conditions
and medical procedures and thus have limited
ability to connect these with spiritual con-
cerns. In these situations, social workers may
serve as intermediaries among patients, clergy,
and other health professionals. This may be of
considerable importance when patients wish
for spiritual counsel regarding certain proce-
dures (e.g., starting or stopping life support).
As outlined by Koenig (2008), religious be-
liefs and rituals may confl ict with or otherwise
infl uence medical decisions that patients make,
particularly when they are seriously ill. Reli-
gious beliefs and rituals may infl uence medical
decisions by family members as well, in ways
that may or may not be consistent with the
patient’s wishes. Although uncommon, such
confl icts often are high profi le and attract dis-
proportionate attention. These include avoid-
ance of medical care by Christian Scientists,
suspicion of psychiatric care by fundamental-
ist Christians, refusal of blood transfusions by
Jehovah’s Witnesses, and so on. Health social
workers must be prepared to work with people
holding these views and intercede with health-
care administrators, attorneys, and members of
the judicial system.
Whether and to what extent a patient par-
ticipates in a religious congregation may have
signifi cant implications for follow-up care. For
example, religious communities may provide
a variety of signifi cant material and emotional
supports. Potential supports include meals,
transportation, social visits, prayers, telephone
calls, supervision, caregiving, and respite for
caregivers. Such supports may hasten and fa-
cilitate discharge to the community, prolong
community stay, and improve the quality of
life. These congregational supports may be
especially important for patients who do not
have many family members nearby or whose
family members cannot provide much support.
Major professional organizations now
recommend or even require practitioners to
conduct routine spiritual assessment as part
of competent practice. In recognition of the
foregoing benefi ts, the Joint Commission for
the Accreditation of Hospital Organizations
requires a spiritual assessment of all patients
in hospitals, nursing homes, and home-health
agencies (Hodge, 2006). Related to this, the
Joint Commission also requires that medical,
nursing, and psychiatric training programs pre-
pare their students to provide culturally sensi-
tive health care, including sensitivity to deeply
held religious beliefs (Koenig, 2008). Like-
wise, the World Health Organization (WHO)
has emphasized the importance of addressing
religion and spirituality in clinical practice
(WHO, 1998; WHOQOL SRPB Group, 2006).
Other groups of health professionals also have
recommended spiritual assessment as part
of competent practice in palliative care (e.g.,
American College of Physicians; Qaseem et al.,
2008), cancer care (National Cancer Institute,
2009), and mental health (Substance Abuse and
Mental Health Services Administration, 2006;
Royal College of Psychiatrists, 2010).
The National Association of Social Workers
(NASW) has promulgated standards in several
areas of professional practice that recommend
assessment of spirituality. These include NASW
Standards for Services in Long-Term Care Fa-
cilities (NASW, 2003), Social Work Practice in
Health Care Settings (NASW, 2005b), and So-
cial Work Practice with Clients with Substance
Use Disorders (NASW, 2005a). The standards
for health-care settings include this assertion:
“Social workers recognize that ethnic, cultural,
spiritual, and religious factors can have an
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Religion, Spirituality, Health, and Social Work 279
impact on healthcare choices and adherence to
regimens of care” (NASW, 2005b, p. 18). More
generally, NASW recommends spiritual assess-
ment as an essential aspect of cultural compe-
tence (NASW, 2001, 2007). Thus, professional
competence will require assessment of spiritual
and religious factors.
Approaches to Assessment
This chapter has identifi ed numerous dimen-
sions of religion and spirituality. Scholars
have developed a variety of standardized mea-
sures for assessing religion and spirituality in
empirical research, even though they tend to
focus on only a few of the specifi ed dimen-
sions. The Multidimensional Measurement of
Religiousness/Spirituality for Use in Health
Research is one of the best measures for study-
ing the relationships between religion, spiritu-
ality, and health. It can be used in its entirety
or particular sections can be selected for more
focused investigations. Hill and Hood (1999)
compiled a large collection of religious mea-
sures developed for research purposes, many
of which are appropriate for health research.
More recently, Hill and Maltby (2009) iden-
tifi ed measures of religion and spirituality
related to well-being. The National Cancer
Institute (NCI, 2010) also identifi ed several
measures for research on religion and health.
To add religion and spirituality to a larger
health study, the Duke University Religion
Index (DUREL) is a simple fi ve-item measure
that taps several key dimensions (Koenig &
Büssing, 2010). Developed for use in epide-
miological studies, it can be easily incorpo-
rated into health research.
At the same time, scholars have developed
a variety of tools for assessing religion and
spirituality in clinical practice. This chapter
provides a set of categories for such tools and
discusses exemplars in each category. Tools for
assessing spirituality in clinical practice can be
categorized as brief screening tools, pictorial
interview tools, and in-depth interviews. By
including several tools in each category, this
chapter enables practitioners to select an ap-
proach that fi ts client needs and priorities, and
the practitioner’s own preferences. These tools
may be included with a conventional intake
procedure or used as part of a more thorough
psychosocial assessment process.
Health social workers have several ways to
address religious and spiritual concerns with
patients. They can wait for patients to bring
up spiritual concerns. They can routinely use
brief paper-and-pencil assessment or oral
screening tools with patients. Or they can use
a spiritual inquiry or assessment to explicitly
address these issues and indicate their open-
ness to further discussion (NCI, 2010). These
approaches have different strengths and weak-
nesses. Uncertain of how their social worker
will respond, some patients may be reluc-
tant or fearful to raise spiritual concerns on
their own. Some may think it inappropriate
to discuss their spiritual concerns with a so-
cial worker while others wish to do so. Some
patients may be relieved to have their social
worker indicate openness to address these is-
sues. For these reasons, a brief routine inquiry
may adequately signal practitioner interest
and openness without putting undue pressure
on the patient. As the NCI suggests,
simply inquiring about an area such as reli-
gious or spiritual coping may be experienced
by the patient as an opening for further ex-
ploration and validation of the importance of
this experience. Evidence suggests that such
an inquiry will be experienced as intrusive
and distressing by only a very small propor-
tion of patients. (NCI, 2010)
Brief Screening Tools
Several brief screening tools are available for
use by health-care practitioners, including
physicians, nurses, and social workers. Most
provide an acronym to remind practitioners
of the recommended questions or topics. For
example, the HOPE questions (Anandarajah &
Hight, 2001, p. 86) address:
H Sources of hope, meaning, comfort,
strength, peace, love, and connection
O Organized religion
P Personal spirituality and practices
E Effects on medical care and end-of-life
issues
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280 Health Social Work Practice: A Spectrum of Critical Considerations
These few questions highlight the existential,
social, and personal aspects of religion and spir-
ituality and invite patients to comment on how
these might be related to their medical care.
Similarly, another set of four questions for
physicians focus on “the meaning and effect of
spirituality in the patient’s life and coping sys-
tem” (Frick, Riedner, Fegg, Hauf, & Borasio,
2006, p. 238). The SPIR questions (p. 240)
address:
S Would you describe yourself—in
the broadest sense of the term—as a
believing/ spiritual/ religious person?
P What is the place of spirituality in your
life? How important is it in the context
of your illness?
I Are you integrated in a spiritual
community?
R What role would you like to assign to
your doctor, nurse, or therapist in the
domain of spirituality?
These questions emphasize patients’ prefer-
ences regarding spiritual identity and its sig-
nifi cance, their involvement with a spiritual
community, and the role of health-care profes-
sionals in spirituality.
Yet another set of four questions may be
the most widely used as a brief screening tool
in health care (Puchalski, 2004; Puchalski &
Romer, 2000). Puchalski’s model uses the ac-
ronym FICA and provides specifi c questions
to guide spiritual assessment (Pulchalski &
Romer, 2000, p. 131):
F Faith and Belief: “Do you consider
yourself spiritual or religious?” or “Do
you have spiritual beliefs that help you
cope with stress?” If the patient responds
“No,” the health-care provider might
ask, “What gives your life meaning?”
Sometimes patients respond with answers
such as family, career, or nature.
I Importance: “What importance does
your faith or belief have in our life? Have
your beliefs infl uenced how you take
care of yourself in this illness? What role
do your beliefs play in regaining your
health?”
C Community: “Are you part of a spiritual or
religious community? Is this of support to
you and how? Is there a group of people
you really love or who are important to
you?” Communities such as churches,
temples, and mosques, or a group of like-
minded friends can serve as strong support
systems for some patients.
A Address in Care: “How would you like
me, your health-care provider, to address
these issues in your health care?”
Like previous models, FICA invites patients
to: self-identify whether they are religious
or spiritual and let health-care professionals
know what terminology they prefer, indicate
how important religion and spirituality is and
how it may relate to their illness, identify their
religious or spiritual communities as potential
support networks for patients, and indicate
their comfort with and preferences for health-
care professionals to engage openly these
matters. In short, the FICA helps health-care
professionals determine what may be not only
permissible but also desirable in their collabo-
ration with patients.
Any of these brief screening tools elicit
basic information about a patient’s spiritual-
ity and provide a foundation for initiating the
professional/ patient relationship. Of course,
professionals still must decide whether and
how to use this information. If a health-care
professional has reason to believe that religion
and spirituality play a signifi cant role in a pa-
tient’s history, medical condition, or potential
response to treatment, then she may decide to
pursue additional information using one of the
methods discussed next.
Pictorial Interview Tools
Although brief screening tools provide a good
place to begin, they generally provide only
limited information about religion and spiri-
tuality in patients’ lives. To go further, social
workers need additional, interview-based
tools. Starting with assessment tools widely
used in social work direct practice, Hodge
(2005a) has adapted assessment tools for use
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Religion, Spirituality, Health, and Social Work 281
in social work practice. Specifi cally, he has
proposed several pictorial tools for supple-
menting verbal interviews regarding religion
and spirituality, something that many patients
will appreciate for disclosing sensitive reli-
gious and spiritual experiences.
Spiritual Life Maps
Hodge (2005a,c) proposed spiritual life maps
as an alternative to exclusively verbal spiritual
histories. Hodge (2005a) notes that life maps
have several advantages for clinical practice:
(a) They encourage an active role for clients
in the assessment process; (b) they provide a
respectful context for discussing potentially
sensitive matters; (c) they may facilitate com-
munication by less verbal clients and those for
whom English is not the fi rst language and
provide a concrete focus for subsequent ex-
ploration; and (d) they help to make concrete
what otherwise may seem amorphous and
subjective, thus making it more readily avail-
able for intervention. Furthermore, construc-
tion of a life map may itself represent a form
of intervention. The process of selecting and
refl ecting on past experience may promote in-
sight and help patients to articulate things they
have not understood previously, reinterpret or
reframe themselves and their experience more
positively, and generally encourage greater
narrative coherence. Many of these advantages
apply to other pictorial interview tools as well.
Constructing a spiritual life map simply
requires a large sheet of paper and writing
instruments. Along a line representing the cli-
ent’s life, the client can draw or paste pictures
and write words representing key events and
experiences that have spiritual signifi cance.
These events may be positive or negative,
great or small, public or private. The process
of constructing the life map serves as a trig-
ger for memory and a focus for conversation
in the clinical encounter. To encourage greater
creativity, practitioners may provide color pen-
cils or crayons, construction paper, magazines
for cutting photos, scissors, and glue. They
can continue clinical conversation while the
patient works on the life map, inviting patients
to talk about the events chosen for inclusion.
Although clients and practitioners may learn
most from constructing life maps in a clinical
session, they also can be assigned as home-
work and discussed in the next session. In
either case, the life map provides a concrete
point of reference to which practitioners may
return in treatment (i.e., to discuss particular
incidents, strengths, responses). Of several
pictorial tools, spiritual life maps probably are
least structured and, thus, most fl exible and
client directed.
Canda and Furman (2010) suggest spiritual
development timelines, a similar tool that has
slightly more structure than the life map. Their
timelines also are designed to help clients tell
the story of their lives; however, they assume a
developmental process that brings some narra-
tive coherence to the story. Their timelines in-
clude a horizontal axis that marks the passage
of time and a vertical axis that represents de-
velopmental stages of spiritual consciousness.
Spiritual Genograms
Much as spiritual life maps focus on the life
course of an individual patient, spiritual geno-
grams frame the patient’s life in its historical
family context. Building on the traditional
portrayal of family trees, family genograms
capture additional qualitative information
about family relationships and highlight fam-
ily patterns over time (McGoldrick, Gerson,
& Shellenberger, 1999). Going further, spiri-
tual genograms emphasize the spiritual and
religious aspects of family experience within
and across generations (Frame, 2000; Hodge,
2001b, 2005a). Because genograms usually in-
clude information about three or more genera-
tions of a family system, they can illuminate
the ways that religion and spirituality have both
strengthened and disrupted family functioning.
For example, genograms can help patients to
recognize those members who have been key
contributors to their spiritual socialization and
support and how religion may relate to alli-
ances and confl ict in the family system, and
can highlight patterns of continuity and change
over time. They also may trigger memories of
how family members used religion and spiritu-
ality to deal with illness positively.
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282 Health Social Work Practice: A Spectrum of Critical Considerations
As described by Hodge (2001b, 2005a),
spiritual genograms resemble traditional geno-
grams, except that they use additional symbols
to represent religion and spirituality and spe-
cifi cally include information about religion
and spirituality. For example, in addition to
the traditional squares for males and circles
for females, practitioners can use triangles to
represent key religious fi gures from outside
the family system. By using different col-
ors for different religious traditions, they can
highlight interfaith marriages and the multi-
plicity of religious backgrounds in an extended
family. Likewise, they can use lines to refl ect
spiritual and religious bonds between indi-
viduals. They also include words and symbols
to convey other important information about
people, relationships, and events. See Hodge
(2001b) and Frame (2000) for vignettes dem-
onstrating use of a spiritual genogram and for
possible interview questions to explore com-
pleted genograms more deeply.
Spiritual Ecomaps
In contrast to spiritual life maps and genograms,
spiritual ecomaps emphasize patients’ current
ecological contexts rather than personal or re-
lational histories. In short, they focus attention
on religious and spiritual resources as well as
relationships in which patients currently are
involved. By doing so, ecomaps highlight and
affi rm what is already present and may clarify
what is absent. Both types of information can
be useful for intervention planning. As Hodge
(2000) notes, patients who may be skeptical of
exploring past relationships nevertheless may
appreciate how current relationships infl uence
their situations. Indeed, spiritual ecomaps fi t
well with the emphasis on relationships and so-
cial support prevalent in most religion traditions.
The ecomap was fi rst developed by Hartman
(1995) to depict a client’s ecological context,
for example, including connections with the
extended family, work, school, and social
services. Spiritual ecomaps essentially bring
a focus on religious and spiritual aspects of
this context. The ecomap consists of a central
circle depicting the patient and patient’s fam-
ily with a series of additional circles arranged
around the perimeter of the page. The sur-
rounding circles are labeled to represent key
elements in the patient’s environment and then
connected to the central circle with different
types of lines to represent the nature of each
relationship. For a spiritual ecomap, Hodge
(2000) suggests these categories for the sur-
rounding circles: God/transcendence, religious
community, spiritual leader, transpersonal be-
ings, ritual/practice, and religious traditions of
patient’s parents. He also discusses how the
categories may be applied and provides a vi-
gnette to demonstrate use of the ecomap.
Spiritual Ecogram
Hodge (2005b) also describes the spiritual eco-
gram, a combination of the spiritual genogram
and ecomap. The spiritual ecogram provides a
dual focus on history and current context and
thus helps patients and practitioners to recog-
nize complex interactions. But this tool is also
the most complex and time-consuming of the
pictorial ones described here. For that reason,
practitioners must decide whether its comple-
tion warrants the effort and time required. The
spiritual ecogram can be constructed following
guidelines already provided for both ecomaps
and genograms.
In-Depth Interviews
In situations where religion and spiritual-
ity loom signifi cant, it may be appropriate
to conduct an in-depth interview focused on
relevant aspects. Nelson-Becker, Nakashima,
and Canda (2007) recommend beginning an
interview on religion and spirituality with two
prefatory questions:
1. Is spirituality, religion, or faith important in
your life?
2. What terms do you prefer to talk about
spirituality, religion, or faith? Please explain.
Such questions ensure that the social worker
can use the patient’s preferred language for
discussing these issues.
Canda and Furman (2010) provide guidance
for exploring the role of religion or spirituality
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Religion, Spirituality, Health, and Social Work 283
in the lives of patients in depth. Although
their interview suggestions are not specifi –
cally targeted to health-care settings, most are
relevant to such practice environments. They
distinguish among three types of spiritual as-
sessment: implicit, brief explicit, and detailed
explicit. For example, questions for implicit
spiritual assessment include:
• What currently brings a sense of meaning
and purpose to your life?
• Where do you go to fi nd a sense of deep
inspiration or peace?
• What are the important sources of strength
and help for you in getting through times
of diffi culty or crisis?
• What are the deepest questions your
situation raises for you? (p. 102)
For remembering their brief explicit spiritual
assessment, Canda and Furman offer the ac-
ronym MIMBRA. This stands for: meaning,
importance, membership, beliefs, relevance,
and action. The corresponding questions are:
• What helps you to experience a deep sense
of meaning, purpose, morality, hope, con-
nection, joy, or peace in your life?
• Are spirituality, religion, or faith impor-
tant to you? Please explain why or why
not.
• Are you a member of any groups or com-
munities (such as a religious group, sup-
port group, or cultural group) that give
you a sense of belonging and help you
fi nd meaning and support in life? Please
explain.
• Please describe any important beliefs,
practices (such as prayer, meditation, ritu-
als, or holistic therapies), or values that
shape your understanding and response to
your current situation.
• From what we discussed so far, what if
anything is relevant to your current situ-
ation and your goals for our work to-
gether?
• Is there anything we discussed that you
would like us to act on in our work to-
gether? For example, is there anything
that has been helpful that we could apply
or unhelpful that we should avoid or deal
with? Are there close friends, relatives,
mentors, clergy, or spiritual teachers who
I should be aware of or contact? Please
explain. Thank you. (Canda & Furman,
2010, p. 267)
In an appendix, Canda and Furman (2010)
provide a more complete set of interview ques-
tions organized in 10 categories:
1. Spiritual group membership and partici-
pation
2. Spiritual beliefs
3. Spiritual activities
4. Spiritual experiences and feelings
5. Moral and value issues
6. Spiritual development
7. Spiritual sources of support
8. Spiritual sources of transformation
9. Spiritual well-being
10. Extrinsic/intrinsic styles of spiritual
propensity
Within these categories, they provide more
than 50 questions. Depending on what seems
important for a particular patient, a health so-
cial worker could select one or more of these
categories for further exploration.
Nelson-Becker et al. (2007) identify a similar
set of interview categories and provide a smaller
set of questions for each category. But they also
provide helpful vignettes to demonstrate how
client responses to questions in each category
may yield increased understanding of clients
and their unique situations. For that reason, their
article may be especially helpful for understand-
ing the potential payoff of questions in particular
categories. Although the vignettes portray older
adults, social workers can use the interview
questions with other populations as well.
Specifi cally formulated for oncology set-
tings, the NCI (2009) recommends that
spiritual assessment interviews with patients
address these categories:
• R eligious denomination, if any
• Beliefs or philosophy of life
• Important spiritual practices or rituals
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284 Health Social Work Practice: A Spectrum of Critical Considerations
• Using spirituality or religion as a source of
strength
• Being part of a community of support
• Using prayer or meditation
• Loss of faith
• Confl icts between spiritual or religious be-
liefs and cancer treatments
• Ways that health-care providers and care-
givers may help with the patient’s spiritual
needs
• Concerns about death and afterlife
• Planning for the end of life
No assessment approach will work with all
patients (Hodge, 2005b). For this reason, it
seems important that practitioners be familiar
with several different assessment approaches,
so they can choose the appropriate approach
for individual patients. Beyond the choice of
a brief screening tool or initial interview ques-
tions, the preferred assessment approach will
require practitioner judgment regarding client
preferences, areas of substantive importance,
and time constraints.
APPROACHES TO
INTERVENTION
Koenig and colleagues (2001) identify several
ways in which health professionals can ad-
dress or incorporate religion and spirituality in
health care. As suggested, clinicians should as-
sess the role of religion and spirituality in a pa-
tient’s life. Besides gathering basic information
that may guide treatment, doing so will com-
municate that the health professional is open
to discussing religious and spiritual concerns.
If a patient’s religious beliefs and practices
appear helpful, the professional may encour-
age or “support those that the patient fi nds
helpful” (p. 441). It may be helpful to ensure
that the patient has access to desired religious
resources, ranging from religious reading or
listening material to hospital chaplains. It may
be even more helpful to ensure that patients
have visits with clergy and other members
of their religious communities. As a related
matter, health professionals should recognize
chaplains or community religious leaders as
part of the health-care teams, especially in
hospitals, residential institutions, and hospice
agencies. Health professionals also should be
prepared to address spiritual concerns directly
and substantively when chaplains or other
clergy are unavailable. Finally, health profes-
sionals may wish to use spiritual interventions
in particular situations with specifi c patients.
But they must do so with caution. “Patients
and situations should be carefully selected and
the interventions highly individualized to fi t
the patient’s religious background and spiri-
tual need” (Koenig et al., 2001, p. 443).
Potential Spiritual Interventions
Besides these efforts to incorporate spiritual
concerns of clients in health care, there is an
emerging category of explicitly religious or
spiritual therapies. In a recent article, Hook
et al. (2010) conducted a systematic review
of studies reporting on empirically supported
and explicitly religious and spiritual thera-
pies. The criteria for inclusion in the study
specifi ed mental health interventions for di-
rect practice with individuals or groups and
excluded medical interventions or religious
interventions outside a therapy context. Fur-
ther, the review included only those inter-
ventions that explicitly integrate religion or
spirituality, thus excluding many interven-
tions that have a basis in spirituality (i.e.,
mindfulness). Finally, the review included
only randomized clinical trials. A total of
24 studies met these selection criteria. The
studies included treatments for depression
(8 studies), anxiety (6), unwillingness to for-
give (3), eating disorders (2), schizophrenia
(1), alcoholism (1), anger (1), and marital
issues (1). The religions represented were
Christianity (10 studies), Islam (7), Taoism
(1), Buddhism (1), and a generic spiritual-
ity (5). Most of the interventions consisted
of a religious or spiritual add-on to standard
secular interventions.
Several of the treatments were found to be
benefi cial for clients, with gains maintained at
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Religion, Spirituality, Health, and Social Work 285
follow-up. One study found that religious ther-
apy was effective for highly religious clients but
no more effective than secular alternatives for
other clients. Given the generally positive fi nd-
ings but small number of studies, the authors
suggest that selecting religious or spiritual ther-
apies may be primarily a matter of client prefer-
ence or therapist comfort. The authors conclude
with a call for more research on these therapies.
CONCLUSIONS
In an article on religion, aging, and health,
Krause (2004) makes three general observa-
tions that seem relevant here as well.
1. The associations between religion and
health are imperfect. Religion appears to
have some benefi ts, but not for everyone
or for all conditions. Given the multidi-
mensional nature of religion and spiritual-
ity, we need to know much more about the
specifi c relationships between health and
religion.
2. It is important to remember that everyone
dies, including those who are religious or
spiritual, and most people become ill before
they die. That means there are obvious lim-
its to any benefi ts of religion.
3. “[S]ome (but not all) deeply religious people
strongly believe that religion should not be
pursued for the purpose of improving one’s
health” (Krause, 2004, p. 1220). In other
words, an instrumental focus on the health
benefi ts of religion and spirituality may lead
to extrinsic rather than intrinsic religion, un-
dermining the essential and primary purposes
of religion and spirituality.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 11.1
The Association for Religion Data Archives
(n.d.) provides a fascinating, easy-to-use
tool for understanding religious diversity in
the United States. Using a Graphic Informa-
tion System (GIS), it maps population sta-
tistics by zip code for the years 1980, 1990,
and 2000. For example, it reports percentages
of the population by major religious groups
(Catholic, mainline Protestant, evangelical
Protestant, Jewish, Muslim, Orthodox) as well
as by more than 130 specifi c denominations
(e.g., Baha’i, Roman Catholic, Presbyterian
Church, Southern Baptist, Unitarian Univer-
salist Association). In small groups or pairs,
spend some time with its online GIS resource
to learn about religious affi liation in the area
where you live or work. Discuss how this re-
source may be helpful to health social workers
in settings in which social workers collaborate
with a team to help individuals and those in
which social workers work with a community,
neighborhood, and other organizations.
Learning Exercise 11.2
The Pluralism Project at Harvard (Eck, 2010)
provides an introduction to numerous religious
traditions present in the United States. Among
other things, this Web site includes extensive
information organized by either state or reli-
gious tradition. Individually, read about one
spiritual tradition with which you are unfamil-
iar. In small or large groups, share the informa-
tion you learned from this project, and discuss
how this information can help health social
workers intervene on both an individual pa-
tient level and a community/organization level.
Learning Exercise 11.3
To learn more about spiritual assessment and
how to use one brief screening tool, go to the
George Washington Institute on Spirituality and
Health Web site (www.gwish.org/). It offers a
free, multimedia training module, Spiritual As-
sessment in Clinical Practice, for “assessing the
spiritual beliefs, values, and practices important
in your patients’ responses to illness or stress.”
The course provides detailed information about
how to use the FICA, one of the tools mentioned
in this chapter. Using this module and tool, role-
play a spiritual assessment with a partner.
JWBT514_ch11.indd 285JWBT514_ch11.indd 285 9/21/11 7:43 PM9/21/11 7:43 PM
http://www.gwish.org
286 Health Social Work Practice: A Spectrum of Critical Considerations
Learning Exercise 11.4
For additional resources on spiritual assess-
ment in health care, browse the Spirituality and
Health Online Education and Resource Center
(SOERCE). Funded by the John Templeton
Foundation, “SOERCE aims to be the premiere
online location for educational and clinical re-
sources in the fi elds of spirituality, religion,
and health.” It is available at www.gwumc.edu
/gwish/soerce/. The Web site includes articles;
assessment tools; case studies; teaching mod-
ules, methods, or exercises; guides, handbooks,
and manuals; video or audio presentations; and
patient or caregiver educational materials.
Learning Exercise 11.5
For in-depth group discussion, facilitators may
select cases from Spirituality and Religion in
Social Work Practice: Decision Cases for So-
cial Work Practice, a casebook published by
the Council on Social Work Education. All of
the open-ended decision cases in this collec-
tion were based on interviews with actual so-
cial workers, and most come from health-care
settings.
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291
12
Developing a Shared
Understanding: When Medical
Patients Use Complementary and
Alternative Approaches
PENNY B. BLOCK
The use of alternative medicine in this coun-
try represents neither a passing trend nor a
marginal sociological phenomenon. National
surveys conducted in the 1990s trumpeted
the substantial and escalating use of alterna-
tive treatments among Americans but profi led
the typical user of such care by drawing from
a limited population sampling, thus misiden-
tifying the adults who seek such therapies
as primarily White, middle-age females with
higher education and income (Astin, 1998b;
Eisenberg et al., 1993, 1998). A later correc-
tive report that relied on data representative
of wider demographics came up with a differ-
ent conclusion: Use of at least one alternative
therapy was prevalent across all ethnic groups,
income levels, and age ranges (MacKenzie,
Taylor, Bloom, Hufford, & Johnson, 2003).
Only the patterns of preferred healing mo-
dalities varied among different ethnic groups;
these fi ndings were echoed by comparable
conclusions from a later analysis (Hsiao et al.,
2006). To be truly effective in our professional
role with ethnically and socially diverse cli-
ents and to respond with genuine respect and
helpful sensitivity to individuals from many
cultural backgrounds presenting in a medi-
cal setting, it is essential to reach beyond our
own predominantly biomedical backgrounds
and augment our understanding of divergent
health philosophies and practices. Knowing
about and demonstrating regard for noncon-
ventional modalities that are important to
clients is a precondition to developing con-
fi dence, trust, and mutual respect. Doing so
should help engage clients and patients in
the cooperative planning of their treatment
strategy by bridging conventional thinking
with individual health beliefs and strengthen
therapeutic alliances that enhance adherence
to comprehensive and individually meaningful
medical treatments. Moreover, when informed
about benefi cial synergies or problematic in-
teractions among therapies, social workers
can coordinate services for optimal health care
more completely.
Chapter Objectives
• Learn about the patterns and prevalence of
alternative and complementary use among
different populations.
• Distinguish alternative, complementary,
and integrative categories.
• Discuss divergent health models and thera-
pies grouped under the alternative umbrella.
• Understand the rationale for use of alternative
therapies, examples of supporting research,
and effective applications.
• Learn about potentials for engaging clients
in an open discussion about their personal
health practices.
• Identify appropriate applications of mind–
body strategies as stress-mitigating tools.
• Provide resources for more detailed in-
formation and evaluation of nonallopathic
therapies.
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292 Health Social Work Practice: A Spectrum of Critical Considerations
ALTERNATIVE AND
COMPLEMENTARY
PRACTICES IN THE
UNITED STATES
Although some experts have predicted that
the popularity of unconventional practices
might fade, increasing numbers of Americans
are seeking health treatments outside modern
Western medicine. Adults across the United
States schedule more sessions with noncon-
ventional providers (600 million annually)
than medical visits with physicians. In the
1998 follow-up to their eye-opening 1993 re-
port, Eisenberg and colleagues documented a
25% increase in the use of alternatives among
Americans, expanding from 33% in 1990 to
42.1% in 1997. During this same time period,
the number of estimated annual visits to un-
conventional practitioners swelled from 427
million to 629 million, an upsurge of 47.3%,
or a projected 243 million more visits than
to all U.S. primary care physicians that same
year. This escalating trend continued so that by
2002, national surveys indicated that 74.6% of
U.S. adults had used at least one form of com-
plementary and alternative medicine (CAM)
(Barnes, Powell-Griner, McFann, & Nahin,
2004). The concomitant fi nancial outlay had
become substantial. Refl ecting only data from
1997, those Americans using alternative care
were spending approximately $27 billion,
which was not reimbursed, on unconventional
therapies—up 45.2% from 1990, a total that
slightly exceeded out-of-pocket expenditures
on total physician services (Eisenberg et al.,
1998). Later surveys revealed that 33.9 billion
out-of-pocket dollars had been spent by U.S.
adults for CAM treatments during the preced-
ing 12 months alone (Nahin, Barnes, Stussman,
& Bloom, 2009). In a sample of 453 patients
with different cancer diagnoses, 69% reported
using at least one type of nonstandard practice
or product within the preceding year (Spar-
ber et al., 2000). Variant rates appear in the
records for pediatric use, with some surveys
showing approximately 21% of parents treat-
ing their children with alternative or comple-
mentary practices but seeking unconventional
modalities for 73% of children diagnosed with
cancer (Noonan, 2002).
Represented in these surveys were a range
of relaxation techniques, herbal treatments,
massage therapies, chiropractic practices, spir-
itual healing, megavitamins, self-help groups,
imagery, dietary plans and other lifestyle pro-
grams, folk remedies, energy healing, homeop-
athy, hypnosis, biofeedback, and acupuncture
(Eisenberg et al., 1998). Although biofeed-
back, hypnosis, guided imagery, relaxation
techniques, lifestyle, diet, and vitamin supple-
mentation fall closer to conventional medicine
on a continuum (i.e., seem more readily ac-
cepted by mainstream medicine for specifi c
chronic conditions), these therapies accounted
for less than 10% of alternative practitioner
visits (Eisenberg et al., 1998). What usually
propels people toward modalities outside the
conventional armamentarium are chronic dis-
orders unrelieved by allopathic methods (e.g.,
back problems, allergies, fatigue, arthritis,
headaches, neck problems, high blood pres-
sure, insomnia, skin problems, digestive dif-
fi culties, depression, anxiety), but unremitting
back pain or annoying allergies top the list as
the disorders most commonly treated with un-
conventional techniques (Eskinazi, 1998).
These combined data refl ect a consumer-
driven revolution in the health-care system that
seems to be gaining momentum—not a simple
fascination with exotic practices or passing fad
but a manifestation of the growing public de-
mand for a broader medical armamentarium
than the more limited inventory in the conven-
tional medicine cabinet. In response to rather
startling survey data and certain political pres-
sures, a 1998 congressional mandate led the Na-
tional Institutes of Health (NIH) to redesign its
Offi ce of Alternative Medicine to the National
Center for Complementary and Alternative
Medicine (NCCAM) with a budget that grew
from an initial $2 million (1992 total) to more
than $100 million allocated to research the ef-
fi cacy and safety of alternative treatments and to
develop a public clearinghouse of information
(Goldberg, Anderson, & Trivieri, 2002). Federal
appropriations for NCCAM grants continued
to expand gradually so that by 2010, they had
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Developing a Shared Understanding 293
reached $125,471,000, representing an increase
of 2.7% over what had been allocated in 2009.
Even with a surge in patient use of noncon-
ventional therapies in conjunction with a con-
tinuation of conventional treatments, only a
small proportion of patients actually divulged
or discussed their use of these alternatives with
their medical doctor. The 1998 report revealed
that 1 in 3 adults consulting a conventional doc-
tor for a serious condition simultaneously uti-
lized an alternative therapy, but less than 40%
of those patients ever mentioned such thera-
pies to their physicians; specifi cally, 39.8% of
alternative therapies were disclosed to physi-
cian in 1990, with a slight downward trend to
38.5% in 1997 (see Table 12.1). A follow-up
2008 paper emphasized that as many as 72%
of Americans never revealed their use of CAM
therapies. The authors of this study empha-
sized that the percentage of disclosure was es-
timated to be substantially lower among racial/
ethnic minorities (Chao, Wade, & Kronenberg,
2008). What is perhaps even more problem-
atic is a 1994 assessment that indicated that
83% of those diagnosed with a serious medi-
cal condition combined unconventional along
with conventional treatment but often did so
surreptitiously—that is, 72% of these patients
withheld this information from their doctor
(Brown, Cassileth, Lewis, & Renner, 1994).
Believing that their primary care physician
would not be interested or approve and thus
would dismiss CAM practices summarily, or
feeling too embarrassed and deeming their
traditional or alternative practices irrelevant
to medical dialogue, many patients will not
broach the subject in medical consultations
(Brown et al., 1994; Richardson, Sanders,
Palmer, Greisinger, & Singletary, 2000). Chao
and colleagues (2008) found that most patients
would discuss their nonconventional practices
more readily and openly if they perceived this
discussion would be acceptable to their phy-
sicians. Disclosure of CAM utilization might
well affect treatment outcomes by virtue of
physicians being biased against complemen-
tary and alternative practices.
Accompanying this picture of nondisclo-
sure and contributing to legitimate medical
worry are statistics showing soaring herbal
use. The percentage of Americans taking
herbal remedies almost quadrupled in 1998–
2008, and growth in high-dose vitamin supple-
mentation has surged 130%, which Sullivan
(2000) speculates places an estimated 15 mil-
lion adults taking prescription medicines con-
currently with supplemental agents at risk for
possible adverse interactions. Specifi c supple-
ments possibly could produce drug-action in-
hibition, substantial interference with effi cacy,
or magnifi cation of the bioavailability of cer-
tain pharmaceuticals, resulting in serious com-
plications that demand attention. Too often,
contraindicated practices remain unknown
and unaccounted for in the medical setting.
It is here, at the nexus of alternative use and
medical implications, that the social worker,
intervening on behalf of the patient as liaison/
coordinating presence with the medical pro-
vider, is so critical to the larger health needs
of individual clients.
ALTERNATIVE USE AMONG
ETHNIC MINORITIES
One fi nding echoed in several surveys but in-
consistent with expectations is that alternative
use is uncommon among ethnic minorities. Al-
though Eisenberg and colleagues’ data (1993,
1998) described the typical CAM user as
White, female, and of higher educational and
socioeconomic status (SES), this description
belies what we know from ethnomedicine and
Table 12.1 Reasons for Nondisclosure of
Complementary Therapies Utilization
Not important for doctor to know 61%
Doctor never asked 60%
None of doctor’s business 31%
Doctor wouldn’t understand 20%
Doctor would disapprove or discourage use
of alternatives
14%
Source: From “Perceptions about Complementary
Therapies Relative to Conventional Therapies Among
Adults Who Use Both: Results from a National Survey,”
by D. M. Eisenberg et al., 2001, Annals of Internal
Medicine, 135(5), 344–351.
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294 Health Social Work Practice: A Spectrum of Critical Considerations
is contradicted by data in medical anthropol-
ogy research (Barnes et al., 2004; Becerra &
Iglehart, 1995; Hsiao et al., 2006; MacKenzie
et al., 2003; Ni, Simile, & Hardy, 2002) and
experience with populations using traditional
healing techniques (Culliton & Kiresuk, 1996).
The Eisenberg teams acknowledged that their
database was neither suffi ciently large nor ad-
equately inclusive of different ethnicities to
refl ect minority use (MacKenzie et al., 2003).
Even though the Eisenberg team (1998) re-
ported that the typical users of CAM—48%
of those surveyed—were in a higher income
bracket (with an annual income of $50,000 or
more), their data revealed that 43% of those
utilizing CAM interventions were in the low-
est income bracket (earning less than $20,000
annually). In addition, the three earlier national
surveys of CAM trends (Astin, 1998a; Eisen-
berg et al., 1993, 1998) were conducted only in
English, whereas MacKenzie and colleagues’
2003 data relied on surveys conducted in
multiple languages (e.g., Spanish, Mandarin,
Cantonese, Vietnamese, Korean). Analyzing
the 1995 National Comparative Survey of Mi-
nority Health Care, the MacKenzie team found
that use of nonstandard approaches did not dif-
fer by ethnicity; 43.1% of adults surveyed used
at least one such therapy with no statistically
signifi cant difference in percentage of use
among African Americans, Hispanic Ameri-
cans, Asian Americans, Native Americans,
and non-Hispanic Whites. With their analysis,
they concluded that earlier prevalence stud-
ies that reported that CAM practices were not
medically signifi cant among ethnic minorities,
and especially among lower-SES populations,
were as a result inaccurate. Only preferences
for specifi c alternatives—categorized as herbal
medicines, acupuncture, chiropractic, tradi-
tional healer, and home remedies—were found
to vary among ethnic populations (e.g., using
herbal formulations was more common or
popular among Asian and Native Americans,
whereas White Americans were found to use
chiropractic services more frequently). Even
with MacKenzie and colleagues’ recharacter-
ization of CAM demographics, surveys may
be prone to underestimation because some
cultural traditions consider home remedies
such as special foods, botanicals, herbals, and
spices as the norm and thus do not report them
as “alternative” (Committee on the Use of
Complementary and Alternative Medicine by
the American Public, 2005).
The MacKenzie investigation clearly as-
serts that aggregate statistics of alternative and
complementary use, ignoring divergent mo-
dalities, obscure actual usage among different
minorities. For data to mirror the true profi le
of users, surveys must distinguish divergent
practices lumped summarily under the CAM
umbrella (see Table 12.2).
CAM use, they conclude, does not belong
to any single demographic—not ethnicity, in-
come, age, or being foreign-born predicted
Table 12.2 Patterns of Alternative Use Among Racial
Groups
Categories of
Practice Prevalence of Use
Herbal medicines Asian Americans 3 times
more likely than White
Americans to use
Latino Americans 2 times
more likely than White
Americans to use
African Americans 1.5 times
more likely than White
Americans to use
Acupuncture Asian Americans 12.84 times
more likely than White
American counterparts
Uninsured respondents 2 times
higher rate than insured
Traditional healera Beyond high school
education—about 3 times
more likely
Home remedy African Americans
1.24 times more likely to use
than White Americans
Women 1.24 times more
likely to use than men
Uninsured 1.5 times more
likely to use than insured
a This label is more academic than commonly used and
understood terms such as curandero (medicine man or
root-worker).
Source: From “Ethnic Minority Use of Complementary
and Alternative Medicine (CAM): A National Probability
Survey of Cam Utilizers,” by E. R. MacKenzie, L. Taylor,
B. S. Bloom, D. J. Hufford, and J. C. Johnson, 2003,
Alternative Therapies, 9(4), 50–56.
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Developing a Shared Understanding 295
use—so understanding these various prac-
tices and their true prevalence is essential to
the delivery of culturally competent medical
care. Even with their more complete detail-
ing, the MacKenzie team (2003) noted cer-
tain defi cits that skewed their accounting.
For example, they did not survey religious or
spiritual healing practices, keystones of most
traditional medicines, or home remedies and
special diets. In addition, the label traditional
healer—more of an academic reference than
the common terms used in different ethnic
circles, such as curandero, “medicine man”
or “root-worker”—might not have elicited
true numbers of followers because of the un-
familiar terminology. Beyond its particulars,
MacKenzie and colleagues’ (2003) message
is a compelling reminder that medicine is al-
ways a cultural construct, that the biomedical
model is but one paradigm that originated in
European science, and that many Americans
continue to follow health-care approaches
that emerged from nonallopathic medical phi-
losophies. As a fi nal caution, having data on
ethnic patterns of medical preferences is es-
sential but should not blind the social worker
to individual divergences from cultural norms,
which can be identifi ed only with appropriate
questions through supportive inquiry (Becerra
& Iglehart, 1995; Krajewski-Jaime, 1991;
Pachter, 1994).
DEFINITION OF
TERMS: DISTINCTIONS
AMONG ALTERNATIVE,
COMPLEMENTARY, AND
INTEGRATIVE
Alternative, complementary, and integrative
are labels often used loosely and interchange-
ably to refer to nonstandard medical practices.
But this changing, elusive, and overlapping
terminology perpetuates confusion and im-
precision in efforts to distinguish the merits
of different practices. Surprisingly, despite
the swelling proportion of Americans seeking
nonconventional therapies in the past decade,
a governmental agency dedicated to studying
such treatments with vast expansion in fed-
eral funding for this purpose, and signifi cant
growth of insurance coverage, no clear or con-
sistent defi nition of alternative medicine has
emerged. Experts still fumble with negative
conceptualizations, the most prominent ex-
ample of which is what is not taught in U.S.
medical schools and what is not insurance re-
imbursed (Eisenberg et al., 1993). Yet even by
1997, several insurance carriers had initiated
cost coverage for certain alternative practices
(Wetzel, Eisenberg, & Kaptchuk, 1998), and in
2002, complementary and alternative course-
work appeared in the curriculum of 98 out of
125 medical schools (Barzansky & Etzel, 2003).
Using terminology such as alternative, un-
conventional, and unproven to indicate prac-
tices outside the armamentarium of Western
medicine implicitly censures such therapies
(Scholten & Van Rompay, 2000). What words
connote can subtly but effectively sabotage or
substantially infl uence acceptance and cred-
ibility. For example, using the label orthodox
to identify the currently dominant medical sys-
tem in the United States confers automatic au-
thority because the words accepted, approved,
established, and standard are understood as
synonyms for orthodox. Even the word bio-
medical presumes that all practices under this
umbrella are based on scientifi c confi rmation,
obscuring other evidence that the human or-
ganism is more than a biochemical entity and
obviating the value of mind–body approaches
(MacIntosh, 1999). The next discussion is of-
fered to help unravel the tangled meanings
of the terms alternative, complementary, and
integrative so that professional dialogue with
colleagues and conversations with clients will
be less susceptible to misinterpretation.
Alternative Medicine
Alternative medicine is not a singular practice
or tradition but divergent systems and prac-
tices of health care that emerge from widely
disparate medical philosophies. Alternative
medical systems are complete diagnostic
and treatment approaches with distinctive
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296 Health Social Work Practice: A Spectrum of Critical Considerations
theoretical foundations, such as those tradi-
tional to non-Western cultures (e.g., traditional
Chinese medicine [TCM] and Ayurveda) and
those developed in Western cultures (e.g.,
homeopathy and naturopathic medicine). In
distinction, alternative practices are specifi c
discrete treatments or modalities independent
of comprehensive or coherent medical schema
(MacIntosh, 1999). The chief commonality
connecting disparate alternative practices and
systems is that they differ in some obvious re-
spect from modern biomedicine and therefore
are seen as challenges to the prevailing medical
paradigm. Indeed, the term alternative often is
employed to indicate medical practices used
in place of modern medical treatments (e.g.,
iridology used as diagnostic technique instead
of conventional blood assays).
Beyond the defi ning characteristic of alter-
natives just mentioned, there are several more
positive, shared premises. For one thing, these
alternative modalities see the human organism
as an indivisible system, an ecological whole.
This is the fundamental assumption that body,
mind, and spirit are not separable but dynami-
cally interconnected, stimulating the healing
process as a unifi ed system. In distinction,
the Western medical model presumes that the
psyche and soma are separate entities to be
treated independently; it is believed that a disor-
der of one organ is not interrelated with the dys-
function of another. Also, in biomedicine, the
body as a machine with interworking but semi-
independent anatomic parts is assumed and re-
fl ected in specialties of medicine that commonly
do not interact. Also, alternative practices share
a core belief in the body’s inherent potential for
self-healing with medical regimens designed to
encourage and support that process.
Next, the primary objectives of alternative
methods are optimal health and total heal-
ing, not elimination of symptoms and signs
of the presenting complaint. Western medi-
cine maintains a fi xation on physical sickness;
the concepts of disease and restoring health,
however, are not the same thing. Jonas (1998)
refers to this nonallopathic emphasis on health
as “salutogenesis” compared to the biomedi-
cal fi xation on “pathogenesis.” Furthermore,
traditional systems presuppose that ill health
results from a disturbance or imbalance in life
force or energy (e.g., qi, pronounced “chee,” in
China, ki in Korea and Japan, prana in India,
and “vital force” in homeopathy or other tradi-
tional Western systems) for which there is no
Western anatomical equivalent. Restoring that
balance will reestablish health in all dimen-
sions of being. Alternative practices also share
the principle of the patient’s active engagement
or partnership in the healing process. In addi-
tion, they share an assumption that spirituality
is inseparable from physical and psychological
health and is critical to a full resolution of what
Western physicians diagnose and treat solely
as a biological disorder (see full discussion in
Chapter 11). This spiritual underpinning of al-
ternative practices is refl ective of each culture’s
dominant religious and cosmological beliefs;
for example, TCM is connected to Taoism, Ay-
urveda rests on the Hindu belief system, and
Tibetan medicine is congruent with specifi c
Buddhist precepts (Eskinazi, 1998).
In some cases, what is casually labeled
as alternative actually may mesh effectively
with the dominant model of medicine (e.g.,
hydrazine sulfate treatments for cancer) and
therefore may be considered more accurately
a complementary adjunct. The same allopathic
paradigm still determines the architecture of
care, with an herbal or botanical medicament
substituted or added alongside a convention-
ally prescribed drug, but the diagnostic cat-
egories and essential treatment planning is
consistent with orthodox Western medicine
(Pietroni, 1994).
Complementary Approaches
As certain alternatives (e.g., acupuncture,
mind/body techniques including meditation,
relaxation and biofeedback, chiropractic,
massage therapies) gained access to modern
medical centers/medical mainstream, new sta-
tus brought new nomenclature (Brown et al.,
1994). Complementary medicine—actually
a misnomer—is not a comprehensive system
of health care but a heterogeneous assortment
of hundreds of treatment modalities lumped
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Developing a Shared Understanding 297
under one categorical label. These therapies
are used in conjunction with, rather than in
lieu of, conventional treatments and often are
implemented to relieve discomfort or sec-
ondary consequences of modern medical in-
terventions (i.e., specifi c herbals used with
prescription drug therapies to help mitigate
untoward effects, relaxation strategies to ac-
company and alleviate symptomatic distress
of surgery or chemotherapy). When applied,
the model that prevails over the implementa-
tion of complementary treatments is still the
Western medical paradigm (Pietroni, 1994).
Although many times used interchangeably
with the word alternative, complementary by
defi nition means something that completes or
provides what is lacking (Merriam-Webster,
2003), whereas alternative indicates some-
thing that is mutually exclusive of, “offering
a choice between two incompatible courses.”
If what was judged alternative is brought in-
house—joined to mainstream medicine pro-
tocols—and institutionalized, it is assigned a
peripheral or ancillary role and therefore is no
longer perceived as competitive or challenging
to the dominant medical model. Complemen-
tary is more a designation that identifi es the
relationship of diverse treatments to the pre-
vailing health system than a term that actually
describes different healing techniques.
In records of CAM usage, the most com-
mon health complaints have been disorders
that seem unremitting, such as chronic back
pain, insomnia, arthritic problems, headaches,
musculoskeletal diffi culties, and psychological
distress (Campion, 1993; Institute of Medicine,
2005). Among those who do seek CAM thera-
pies for more severe health concerns, a large
majority (83%) continue treatment with their
standard provider, but 85% of those using non-
standard therapies choose not to inform their
physicians they have done so (Eisenberg et
al., 2001). At the time of the Cassileth, Luck,
Strouse, and Bodenheimer paper (1984), 60%
of CAM practitioners were physicians—that
is, those providing unorthodox therapies were
not stereotypical untrained charlatans; this
proportion has increased steadily, but few
CAM practitioners are oncologists (Cassileth
& Chapman, 1996). It is when conventional
and nonstandard treatment are uncoordinated
that CAM can prove most harmful.
CAM practices are a frequent choice for pa-
tients diagnosed with cancer (Campion, 1993;
Eisenberg et al., 2001; Ernst & Cassileth,
1998). According to Campion’s (1993) report,
a full 58% were convinced that such treatments
likely would provide a cure. Even data from
1984 revealed that 54% of patients surveyed in
a major U.S. cancer center were CAM adher-
ents, but at least 40% of patients at that cen-
ter at one point had abandoned their standard
medical treatments to pursue CAM exclusively
(Cassileth & Chapman, 1996). A systematic
review found that the proportion of cancer
patients using an amalgam of CAM and con-
ventional treatments—either simultaneously
or sequentially—was 64% (Ernst & Cassileth,
1998). In another survey of cancer patients que-
ried soon after completing chemotherapy, 91%
reported routinely utilizing at least one CAM
modality during their treatment cycles (Yates
et al., 2005). Certainly a major concern arises
if patients desert potentially effective conven-
tional care, opting to use only alternatives,
even ones that as complements could prove
truly helpful, because these patients could lose
their way on an unnecessarily perilous treat-
ment path. Most analyses seem to concur that
CAM applications—including diet therapies;
healing relaxation programs; metabolic thera-
pies; acupuncture; homeopathy; manual and
body therapies; vitamin, herbal, and botanicals
or other supplemented compounds (e.g., Isca-
dor, a proprietary cancer treatment formulation
derived from mistletoe)—represent a global
phenomenon. Eisenberg acknowledges CAM
as an “invisible mainstream” within current
health care (Cassileth, 1998; Eisenberg, 1997).
Integrative Medicine
Integrative medicine, a term in current parlance,
designates an approach to health care that
combines, in careful treatment programming,
mainstream medical treatments and certain com-
plementary therapies that have demonstrated
safety and potential effi cacy. Not a specifi c
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298 Health Social Work Practice: A Spectrum of Critical Considerations
traditional system of health care based on a
distinguishing philosophical or theoretical
foundation, integrative medicine is used by pro-
viders who are formally trained in allopathic
therapies and equally profi cient in or knowl-
edgeable about relevant alternative modalities.
To produce a truly melded protocol of integra-
tive care, practitioners must be fully versed in
and able to anticipate positive synergies as well
as problematic interactions that can occur when
previously unfused therapies are combined.
Even though it is not a single system of medi-
cine, there are certain consistent, identifi able
standards of care in this medical fi eld. A true
integrative approach requires a systematic fu-
sion of conventional and alternative treatments
intended to marshal the body’s own recovery
processes; it maintains an openness to para-
digms other than Western allopathy, focuses on
the larger goal of optimal health beyond ame-
liorating specifi c disease issues, and begins by
creating a partnership of provider and patient.
This last principle echoes and is consistent with
one of the key practice tenets of social work, re-
affi rming the true professional fi t for the health-
care social worker in the integrative sphere.
Proponents postulate therapeutic advan-
tages if regimens are integrated properly and
tailored to each individual’s particular health
needs. What is required are treatment plans
for individual patients that rely on a sound
coupling of therapies from both conventional
protocols (e.g., prescription medications) and
alternative practices (e.g., herbal/botanical
agents), a melding guided by evidence-based
information, and a watchful eye to potentially
problematic interactions (certain combinations
contraindicated because of specifi cs about
medical status of a patient or intervention).
The totality of an integrative program can yield
a better-than-sum-of-its-parts outcome; that is,
a comprehensive and coherent treatment plan
can produce full synergistic benefi ts beyond
mere adjunctive add-ons of disconnected, ex-
otic practices. Nevertheless, an unanswered
conundrum hovers over the enthusiasm of in-
tegrative intentions: Can systems shaped by
dissimilar, nonparallel paradigms of health
and healing ever be fully blended?
REASONS FOR SEEKING
ALTERNATIVE TREATMENTS
More than a decade after the Eisenberg and
colleagues’ initial report (1993), the disagree-
ment surrounding actual determinants of CAM
still smolders. Discussing this dispute does not
simply serve in the interest of debate or polem-
ics but familiarizes us with proposed reasons to
encourage an open but knowledgeable discus-
sion with patients, to act as an informed liaison
between patients and the medical team, and to
impact an administrative response to cultural
and medical pluralism in effective programs.
Some argue, based on results from surveys,
that dissatisfaction with orthodox treatments is
not a signifi cant predictor of alternative usage.
Astin (1998a) cites data showing that 54% of
those using alternatives reported feeling very
satisfi ed with their conventional experience.
Astin’s conclusion supports a “philosophi-
cal congruence theory.” That is, patients felt
aligned with comprehensive treatments de-
signed to promote health rather than oriented
wholly on pathology and disease and with ap-
proaches that value dietary, mind–spirit, and
lifestyle factors in self-care programs. From
this perspective, modern medicine represents
a necessary but insuffi cient response to health
concerns.
Others contend that even philosophical
congruence can be construed as an indicator of
disappointment with orthodox care. Although
most users of CAM are not distrustful of or
totally displeased with mainstream medical
treatments, many would concur that electing
to use an alternative implicitly signifi es some
dissatisfaction with results of the conventional
armamentarium—that conventional therapies
have not been fully effective, prompting the pa-
tient to seek other and more (Baldwin, 1998).
From this perspective, electing CAM therapies
suggests that even if patients do not eschew
conventional interventions, they are not fully
pleased with their experience in mainstream
medical facilities. It has been argued that be-
cause Astin (1998b) did not include a direct
question about perceived effi cacy (i.e., “Has
conventional treatment worked for you?”) and
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Developing a Shared Understanding 299
because satisfaction with treatment is a pri-
mary determinant of each individual’s medi-
cal choice, Astin’s conclusions are based on
inadequate data. In Baldwin’s words, “patients
in general would not part with good money
unless they felt they were getting better re-
sults outside conventional health care” (1998,
p. 1660).
Although standard Western medicine is un-
paralleled at crisis intervention—trauma and
emergency care—and battling microbial dis-
ease, it has been less successful at identifying
how to achieve and maintain optimal health
or how to respond to unalleviated chronic
ailments: problems that fail to disappear. No
doubt the drive toward CAM can be very id-
iosyncratic, but certain recurring themes lead
people to unorthodox practices:
1. Discomfort with an impersonal quality per-
vasive in institutional settings
2. Discontent with technological procedures
that presume a mechanistic and reduc-
tionistic model of human health (Borins,
2002)
3. Unresolved chronic medical problems
(e.g., arthritis and allergies that often do
not respond to conventional interventions)
and reduced faith in the ability of medical
breakthroughs to eliminate vexing health
concerns (Jonas, 1998; Testerman, Morton,
Mason, & Ronan, 2004)
4. Growing fascination in spiritual dimensions
of health
5. Mounting unease about the toxic potential
and adverse consequences of invasive medi-
cal practices (Jonas, 1998) combined with
confi dence in lower toxicity and greater
safety of most alternative treatments
6. The repeated experience of dispiriting or
perfunctory communications from medical
providers
7. The desire to regain a modicum of personal
control over the direction and process
of care
This last reason—the intent to reclaim
responsibility for treatment decisions and
medical care rather than remain passive re-
cipients of medical interventions and invasive
technology—frequently propels cancer pa-
tients toward nonstandard practices (Lerner &
Kennedy, 1992). Beyond avoidance of dreaded
side effects and iatrogenic consequences,
many people diagnosed with a malignancy
suspect that pollution, dietary patterns, and
stressors are implicated in the etiology of their
disease; the logical recovery strategy requires
altering food intake and a personal regimen
of lifestyle adjustments (Borins, 2002). Fur-
ther motivating cancer patients to adopt CAM
practices is a desire to augment biological
factors deemed vital in battling malignancy
to mitigate symptoms, such as fatigue, pain,
and nausea; diminish side effects; and en-
hance emotional well-being (Molassiotis et
al., 2005). Although 43% of patients believed
that their supplement programs were a truly
effective tactic in their cancer battle (Cassileth
et al., 1984), when cancer patients elect al-
ternative or complementary modalities, they
usually do not limit CAM options to a sin-
gular practice. The likelihood of CAM use
is heightened the longer a patient has been
dealing with their cancer (Lerner & Ken-
nedy, 1992). In addition, oncology patients
choose these combination therapies because
conventional treatments hold out poor cure
and remission statistics—very bleak show-
ings on desired outcomes—and seem unable
to deliver desired outcome. All of these rea-
sons indicate dissatisfaction, if not total disil-
lusionment (Borins, 2002; Lerner & Kennedy,
1992). Added to these issues is an increasing
frustration among patients—and substantial
numbers of doctors—with their experience
in standard medicine, perpetuated by a man-
aged care economics that permits too little
physician time and encourages a system that
often feels impersonal (Weil, 2001). There-
fore, although most users of alternatives may
not be truly distrustful of mainstream medical
treatment—and in fact stay with conventional
regimens simultaneous to alternative and
complementary modalities—neither are they
fully satisfi ed with the results of their conven-
tional modalities.
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300 Health Social Work Practice: A Spectrum of Critical Considerations
SYSTEMS AND PRACTICES
Learning the divergent cultural models of
health and medicine that are the philosophical
underpinnings of specifi c alternative interven-
tions is as critical for social workers as is be-
coming familiar with names and types of single
practices, agents, or therapies. Traditional or
indigenous health-care systems emerge from
centuries-old philosophical principles and
fundamentals of health care that differ ap-
preciably from those underlying the model
of biomedicine. They developed from ancient
texts and medical ideologies embedded in and
refl ective of the specifi c traditions and societal
and spiritual beliefs of each culture.
Traditional Chinese Medicine
In the traditional Chinese medical system,
health is understood as the unimpeded fl ow of
vital energy (qi) traveling through a network
of bioelectrical pathways that have no exact
correlate in the Western model of anatomy.
In addition, health implies a balance of op-
posed universal forces of yin and yang within
all systems—body, mind, and spirit—and with
the larger external environment. To reestablish
balance and optimize health, traditional Chi-
nese doctors prescribe a complex regimen of
dietary adjustments, meditative physical exer-
cises (e.g., tai chi, qi gong), specifi c massage
treatments, herbal formulations, and acupunc-
ture. These recommendations are tailored to
match the individual’s diagnosis (e.g., hot liver
excess; TCM diagnoses bear no exact corre-
spondence to Western disease categories) and
are determined by pulse evaluations (again,
unlike Western pulse taking or blood pressure
readings) and other signature indicators (e.g.,
tongue signs, vocal tone, skin quality). In diag-
nosis, the practitioner identifi es the underlying
cause of body’s pattern of disharmony that is
unique to that individual and at that time. For
example, an individual diagnosed as suffering
from cold-defi ciency disease will be placed
on a regimen of specifi c foods known as body
heating (not synonymous with temperature,
but a quality believed to strengthen the blood).
Acupuncture
Because disrupted energy fl ow is understood
as the basis of disease, acupuncture treatment
involves the insertion of very thin needles at
blockage junctures or specifi c meridian points
to release or restore fl ow of energy through
channels or meridians. It is theorized that there
are more than 2,000 points connected to par-
ticular organ systems. Although deemed alter-
native in the United States, acupuncture is a
traditional, standard healing practice in China,
with origins in the classic text of Chinese med-
icine, the Nei Ching (ca. 2500 b.c.). Currently
it is the most commonly used medical practice
worldwide, applied as a full diagnostic and
healing treatment in Asian cultures (Gerber,
1988; NCCAM, 2000).
A report published in 1998 calculated that
more than 5 million visits are made to acupunc-
ture practitioners annually in the United States
(Eisenberg et al., 1998). With research primar-
ily on its effectiveness at alleviating different
degrees and types of discomfort, acupuncture
has earned gradual medical acceptance for cer-
tain pain syndromes (NIH, 1992). Even though
its specifi c mechanisms continue to elude sci-
entifi c explanations, compelling evidence has
found acupuncture effi cacious beyond placebo
in relieving chronic and acute pain (Jackson,
1997; Takeda & Wessel, 1994), easing the se-
verity of drug withdrawal (Gandhi, 1996), and
diminishing chemotherapy-induced nausea
and vomiting (Beinfi eld & Korngold, 2003;
Ezzo et al., 2005). Beyond analgesic and an-
esthetic applications, when administered as an
adjunct for cerebral vascular episodes, acupunc-
ture reduced recovery time by 50% and per-
patient cost by $26,000 (Johansson, Lindgren,
Widner, Wiklund, & Johansson, 1993). In
broader medical settings, acupuncture has
been gaining favor as a therapy for asthma,
gastrointestinal problems, and chronic fatigue
(Sullivan, 2000) and as an effective treatment
for night sweats, diarrhea, vomiting, diges-
tive diffi culty, insomnia, and other debilitating
symptoms of acquired immunodefi ciency syn-
drome (AIDS) symptoms, particularly when
combined with moxibustion (specially heated
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Developing a Shared Understanding 301
herbs applied to parts of the body) and herbal
formulas (Hudson, 1996). For those who are
truly needle phobic, resistance to acupuncture
might interfere with and obstruct anticipated
benefi ts (D. P. Lu, Lu, & Kleinman, 2001).
Ayurvedic Medicine (or Ayurveda)
The traditional medical system known as Ay-
urvedic medicine has roots in 5,000-year-old
Indian texts that, similar to TCM, explain ill-
ness as disruption of harmony and balance in
the vital life force, or prana. Restoration of
health—reestablishing balance—depends on
individualized dietary, herbal, massage, and
meditative therapies that correspond to the in-
dividual’s predominant constitutional or meta-
bolic body type, known as a dosha (e.g., kapha,
pitta, and vatta) (Chopra, 1989). Rather than
focusing exclusively on disease particulars and
their specifi c treatment, Aurvedic plans of care
are equally directed at systematic preventive
care and optimization of health.
Alternative Health-Care Systems
Homeopathy
Homeopathy, a complete system of medi-
cine, originated during the latter 1790s and
early 1800s in Germany and is founded on
the theory that “like cures like,” also spoken
of as similia similibus curantur or “law of
similars” (Moore & Schmais, 2000). In this
country, homeopathy was not only popular
but was highly regarded professionally as a
full medical approach during the 1800s and
early 20th century. By 1900, homeopathic
institutions included 22 medical schools and
approximately 200 hospitals; 15% of physi-
cians were homeopathic doctors. The advent
of allopathic standards, the pervasive impact
of our cultural ideal of empiricism, and the
increasing infl uence of the American Medical
Association and its determination of accept-
able practices (Wharton, 1999) diminished
homeopathy’s stature, another manifestation
of cultural and social confi guration of medi-
cal models. However, homeopathy is more
widely used globally than any other system of
medical care, is commonly applied in Western
Europe (Sullivan, 2000), and has been attract-
ing research interest and gaining advocacy
once again in the United States.
The principles of homeopathy seem para-
doxical and defy conventional pharmaco-
logical explanations. That is, homeopathy
treats health disorders by administering tiny,
dilute doses of natural substances—mineral,
plant extracts, metals, even disease-produc-
ing germs, diluted in pure water or alcohol
(Goldberg et al., 2002)—that, if given in a
larger quantity, could produce the undesired
symptoms or medical complaint. This doc-
trine of practice is referred to as the law of
infi nitesimal doses: The more highly dilute
dosages (30 successive dilutions) are con-
sidered more potent than less dilute (6×)
formulations (Moore & Schmais, 2000). The
basic assumption is that these precisely for-
mulated microdosages target the root causes
of disease by initiating the body’s inherent
healing mechanisms. In this system of care,
symptoms are viewed as a functional attempt
of the organism to right or heal itself (Taylor,
1995) and therefore are not the primary focus
of treatment. For instance, two patients pre-
senting with the very same Western medical
disease diagnosis might exhibit very different
symptoms. After careful analysis of other sub-
tly related indicators, pointing to noncompa-
rable origins of their malady, the practitioner
would recommend entirely different homeo-
pathic remedies (choosing among hundreds)
in contradistinction to the precise algorithms
of Western medicine that would identify a sin-
gular protocol for a single diagnosis.
Although homeopathic assumptions con-
tradict Western medical precepts, more than
80 randomized trials show homeopathic ef-
fi cacy for disorders such as severe diarrhea
among young children (Jacobs, Jimenez,
Gloyd, Gale, & Crothers, 1994), asthma, der-
matitis, and otitis media (Sullivan, 2000). A
meta-analysis found measurable benefi ts for
disorders as various as hay fever, asthma,
and infl uenza (Kleijnen, Knipschild, &
Riet, 1991).
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302 Health Social Work Practice: A Spectrum of Critical Considerations
Naturopathic Medicine
With an ebb-and-fl ow history, naturopathy is now
regaining popular interest and recognition and is
formally licensed in 15 states and the District
of Columbia. Originating in the United States in
the early 1900s (fi rst with Benjamin Lust and
later systemized in Henry Lindlahr’s texts on
natural therapeutics), this is a medical discipline
of nontoxic regimens derived from worldwide
healing systems. Treatment plans are designed
to enhance the body’s inherent healing capac-
ity (vis medicatrix naturae) and are based on a
meticulous composite of therapeutic diet, herbal
medicine, homeopathic remedies, acupuncture,
detoxifi cation therapies (colonic irrigation, salt-
water baths, and fasting), hydrotherapy, physical
therapies, spinal/soft tissue manipulation, and
hyperthermia—the compendium derived from
various traditional healing modalities. The most
common application of naturopathy is treatment
of chronic and degenerative problems rather
than acute or trauma conditions.
A basic principle of naturopathy (primum
no nocere) and of Western medicine holds that
disease symptoms are the body’s innate mech-
anism for correcting unhealthy imbalances. It
is believed, for example, that reducing a fever
or medicating infl ammation—simple manifes-
tations of imbalance—rather than eliminating
the root cause (tolle causam) of an elevated
temperature or the infl ammatory condition will
perpetuate the disorder and result in chronic
disease. Often during the therapeutic regimen
to remove causative factors, a patient will ex-
perience an acute episode, or a healing crisis,
which, according to naturopathic thinking, in-
dicates an expected reaction to treatment and
a signal that the therapy is on track. It is as-
sumed that subsequent to this amplifi cation of
symptoms, the adverse condition will subside
naturally (Goldberg et al., 2002).
Folk Medicines
In dictionary terms, folk medicine (or lay
medicine) refers to a tradition of health beliefs
and illness treatments transmitted orally and
by imitation among a group of people with a
common cultural or ethnic identity (Hurdle,
2002; Merriam-Webster, 2003). What this
term inaccurately seems to conjure is a set
of quaint practices predominant among rural
or nonacculturated populations. In a 1995
paper, Becerra and Iglehart reported the com-
mon practice of folk medicine, particularly
for minor disorders or as preventive, among
diverse urban populations who do have ac-
cess to modern scientifi c interventions. For
example, Chinese Americans may selectively
apply traditional Chinese practices while con-
tinuing to follow modern medical recommen-
dations, deeming each differentially effective
with particular health problems. Surprisingly,
from surveying parents from different ethnic
groups (Chinese American, African American,
Mexican American, and non-Hispanic Whites),
Becerra and Iglehart (1995) observed that level
of assimilation was not predictive of reliance
on folk medicine, but personal injury or ill-
ness of children during the prior 6 months was.
Why these medicines still attract loyal adher-
ents and are resilient even in modern urban so-
cieties can be attributed fi rst and foremost to
their effectiveness for specifi c problems plus
an unwillingness to abandon heritage and tradi-
tion, a desire to preserve self-determination in
personal health, affordability, and congruence
with spiritual belief systems (Neff, 2004).
Although specifi c remedies or “cures” em-
braced by folk medicines often are used in
combination with conventional medicine, these
practices are not easily tagged as complemen-
tary. That is, folk practices will not neatly fi t
the allopathic model. Their theoretical under-
pinnings and diagnostic and healing categories
can be incompatible with biomedical thinking.
This may pose a substantial challenge to pro-
fessional providers trained in the conventional
medical paradigm. Folk medicines represent
consistent and coherent patterns of practice,
not disconnected assortments of remedies and
preventives. Each folk system refl ects its cul-
tural source with a distinct explanatory model
of sickness appreciably different from that of
Western biomedicine that divorces spiritual
and religious meaning from disease etiology
and treatment.
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Developing a Shared Understanding 303
These folk diagnostics and curatives seem
to share the belief that a patient’s disorder and
subsequent health are embedded in an environ-
ment that is simultaneously social, ecological,
and spiritual—a tenet that echoes and coheres
with the person-in-environment fundamental
of professional social work. Another important
distinction is that, unlike allopathic medicine,
which prescribes treatments even when dis-
ease causation is unknown or uncertain, folk
systems do not proceed with curative therapies
before identifying clear etiology (Krippner,
1995).
Because it is not feasible in one chapter to
present a full discussion of the complex topic
of folk medicine, examples will be used to
highlight certain distinctions among systems
and identify possible points of incongruity
between modern medical thinking and folk
models—ones that refl ect vastly different
ways of construing health and sickness issues.
For the health-care social worker, familiarity
with folk practices helps bridge separate cul-
tures of medicine and engender mutual respect
for a more effective delivery of services.
As an example, among Mexican Americans,
curanderismo, or folk healing, is a continu-
ing and stable presence in family health care
(Becerra & Iglehart, 1995). Not an assortment
of piecemeal remedies, this is a comprehensive
tradition that holds religion as a core element
with practices that derive from an elaborate
classifi cation of maladies. These maladies
have no exact corollary in orthodox medicine,
thus may not be resolvable by Western medi-
cal techniques and, as a result, necessitate folk
healer (curandera or curandero) interventions.
Although disease causation is not understood
as God’s punishment, the divine is viewed as
the ultimate source of relief and recovery from
illness (Becerra & Iglehart, 1995). Most often,
the curandera determines a diagnosis by read-
ing the patient’s aura or energy body, by ques-
tioning both patient and family about signs
or symptoms and peculiar patterns of patient
behavior, and ultimately by information from
the spirit guide in dreams (Krippner, 1995).
In curanderismo diagnostics, there are fi ve
principal folk sicknesses, four of which are
deemed natural disorders (males naturales)—
caida de la mullera (fallen fontanel in infants
due to mother’s neglect), empacho (a diges-
tive disorder understood as obstruction in the
bowel or stomach by saliva or soft foods), mal
ojo (the evil eye, which occurs when stared
at with envy or desire), and susto (shock or
fright)—and one with its source in witchcraft
or sorcery—mal puesto, due to a hex (Becerra
& Iglehart, 1995; Krippner, 1995). Symptom
patterns can be complex and include fever,
headaches, vomiting, and drooping eyes for
mal ojo but do not in and of themselves de-
fi ne the problem. Depending on diagnosis,
curatives can involve herbals, incantations,
manipulations, and spiritual practices with the
curandera present to enlist divine assistance or
the intercession of helpful spirits (Krippner).
A patient case example of the ethnomedical
condition known in Latin American traditions
as empacho exemplifi es a successful folk-
biomedical interface. A 20-month-old Puerto
Rican toddler was admitted to a hospital for
dietary and behavioral observation because
of “failure to thrive”—the diagnosis in bio-
medical terminology for his continuing weight
loss—but assumed by his parents to signify
empacho, a disorder with no correspondence
in modern medicine. Respecting the convic-
tion and insistence of both parents, the doc-
tors invited a local santiguadora along with the
owner of a botanica (a local Puerto Rican shop
selling herbs, remedies, and specifi c religious
artifacts) into the hospital unit to perform rit-
ual healing with massage and other folk me-
dicaments, concurrent with conventional care.
Within days, the boy was able to return home
after evidencing appropriate weight gain. Im-
portantly, achieving this successful outcome
did not require the parents to relinquish their
culturally determined beliefs about illness, nor
was the physician compelled to concur with
those beliefs. This result suggests how dis-
crepant explanatory models can be negotiated
effectively—can peacefully coexist and de-
liver effective care—in a conventional medi-
cal environment that demonstrates openness
and the ability to suspend judgmental thinking
(Pachter, 1994).
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304 Health Social Work Practice: A Spectrum of Critical Considerations
Other folk practices persist in an urban set-
ting. For example, without abandoning their
modern medical care, African Americans may
specifi cally seek herbal remedies (“root” work)
or spiritual practices to cure sickness (“the
misery”) when illness is attributed to divine
punishment or natural or magical forces. In
contradistinction, White non-Hispanics seem
to rely more on specifi c food preparations and
mechanical applications (e.g., poultices rather
than herbals) as remedies, but, parallel to mod-
ern medicine, Anglo popular medicines (as
they are labeled by Becerra & Iglehart, 1995)
separate spiritual rituals from physical health
practices. These authors imply that although
not as elaborate and codifi ed as other folk
medicines, continuity of Anglo healing mea-
sures is ensured because it enables and echoes
values of independence and self-reliance.
Among many Native American practices, a
rigorous logic informs practice, and, in fact,
the Pima Indian model with its specialties
and subspecialties is seen by medical anthro-
pologists as perhaps as highly developed as
that of Western medical systems (Krippner,
1995). Comparisons, however, are not simple
because many diagnostic categories are not
comprehensible outside of a particular cul-
tural perspective. The Pima model holds that
one category of disease responds to external
treatment while other types may heal only
with the body’s innate mechanisms or might
not be remediable, such as infant deformities
(Krippner, 1995). According to Pima theory,
the body of each patient refl ects the accumula-
tive repository of resources and weaknesses to
be evaluated and analyzed by the shaman with
the assistance of benevolent spirit guides be-
fore the individual is assigned to the appropri-
ate intervention of other practitioners. Specifi c
behaviors inform the shaman’s diagnostic con-
clusions. In this system, “wandering sickness”
(impurities such as germs, pus, or heat that
traverse the body), identifi ed with signs such
as fever, hives, piles, and sores, is treated with
herbals and spirit entreaties. Another category
of maladies, “staying sickness” (manifestation
of proscribed behavior toward power object
from nature), persists in the body because the
individual has violated sacred laws. This group
includes “wind sickness,” “deer sickness,” and
“rabbit sickness” and requires shamanic chant-
ing and ritual removal of toxic substance from
the ill person’s body, often in conjunction with
sand painting and/or special feasting (Krippner,
1995). In some instances, a disease is deemed
untreatable (an intrinsic condition that is char-
acterologically induced), obviating interven-
tions, which would interfere with a specifi c and
necessary life lesson (Cohen, 1999).
CAM Practices
As mentioned earlier, what usually is classi-
fi ed as complementary medicine is not a true
medical system but an umbrella term for non-
standard practices that can be applied within
the allopathic model (i.e., when nonstandard
treatments dovetail with, instead of supplant-
ing, conventional plans of care). It is still the
conventional biomedical model and theory
that determine usage (MacIntosh, 1999). Al-
though a listing of CAM modalities is far too
extensive for full coverage in this chapter,
some of the more common CAM categories of
treatment are mentioned to increase familiarity
(Loveland-Cook, Becvar, & Pontious, 2000).
Body and Massage Therapies
(Manual Therapies)
The manual therapy modality encompasses
multiple distinctive therapies that primarily
use physical touch for diagnostic and treat-
ment plans (Loveland-Cook et al., 2000).
Chiropractic is foremost a system of spinal
adjustments and is the most immediately iden-
tifi able form of CAM (Lawrence & Meeker,
2007). It is estimated that 23 to 38 million Amer-
icans visit chiropractors annually (Goldberg et
al., 2002). Although the primary chiropractic
function remains treatment of back pain, one
of the most common health complaints in the
United States second only to the common
cold, in some states (e.g., Illinois), chiroprac-
tors may be licensed to perform certain inter-
ventions, such as throat cultures, and to treat
minor health issues (Rattenbury, 1995). Ac-
cording to the guiding premise in chiropractic,
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Developing a Shared Understanding 305
health ultimately is determined by the central
nervous system. Misalignment of the spine,
referred to as “subluxation,” engenders pain
and other health problems, requiring spinal ad-
justments, achieved with varying methods and
equipment, to restore healthier nerve function-
ing. Numerous studies have found chiropractic
to effect better and longer-maintained relief
of back pain than that achieved by medical
doctors (Meade, Dyer, Browne, Townsend, &
Frank, 1990) and at signifi cantly reduced cost
(Jarvis, Phillips, & Morris, 1991).
Naprapathy is a back/body modality related
to chiropractic, but this practice treats muscu-
loskeletal pain by manipulating connective
tissue and muscles rather than bones. Napra-
paths most commonly treat muscle spasms,
joint pain, infl ammation, and scar tissue
(Rattenbury, 1995).
Refl exology, another manual therapy, is
based on the premise that each body organ
or system has one or several corresponding
points on the feet and hands. By applying
precise pressure to these points, it is believed
that the practitioner can unlock disrupted path-
ways of energy that have produced pain or an
unrelieved structural disorder (Stephenson &
Dalton, 2003). Research has shown refl exol-
ogy to be an effective treatment for chronic
migraines and tension headaches (Launso,
Brendstrup, & Amberg, 1999).
Therapeutic touch (TT) has as its underly-
ing rationale the theory that bioelectrical en-
ergy fi elds make up soma and psyche of each
individual, and these fi elds interact with envi-
ronmental factors to produce health problems.
This practice involves realigning or rebalanc-
ing disturbances in this energy fi eld. Studies
regarding effi cacy have found that gentle TT
bolstered weight gain among premature in-
fants (Harrison, Olivet, Cunningham, Bodin,
& Hicks, 1996) and helped calm children dis-
tressed during hospitalization (Kramer, 1990);
other data suggest that TT aids factors that
enhance immune response, particularly an in-
crease in helper T4 cells and reduction of sup-
pressor T8 cells (Quinn & Strelkauskas, 1993).
Moreover, TT has been associated with reduced
pain of tension headaches (Keller & Bzdek,
1986) and has found applications in more than
200 hospitals (Goldberg et al., 2002).
Aromatherapy uses essential oils, distilled
from plant oils, to relieve and relax symptoms
associated with disease and side effects of
treatment and more generally to enhance over-
all well-being through the olfactory system.
The usual routes of aromatherapy are through
inhalation of oils dispensed by diffusers or
massaged directly on skin. The latter method
requires knowledgeable professional guidance
as certain oils, such as cinnamon and clove,
can burn or irritate the skin. In addition, even
the most purifi ed oils should not be ingested
because they can be quite toxic. But benefi –
cial effects abound. Lavender induces calm-
ing, almost sedative benefi ts on brain wave
activity (Birchall, 1990) and can be very help-
ful with sleep disorders, particularly sleep-
onset problems. During childbirth, lavender
and lemon relieved tension in early stages of
labor, whereas in later phases peppermint was
found to alleviate nausea and vomiting (Burns
& Blarney, 1994). In an intensive care unit,
aromatherapy combined with massage pro-
vided patients with greater observed ease and
relaxation than massage alone (Dunn, Sleep,
& Collett, 1995).
Therapeutic massage and bodywork in-
cludes multiple practices, such as Swedish,
deep tissue, sports, and lymphatic massage.
Estimates suggest they are used by 20 million
Americans annually (Goldberg et al., 2002).
Research on various forms of manual therapy
has produced substantial documentation that
massage therapy can relieve psychological
stress and lift mood (Corley, Ferriter, Zeh, &
Gifford, 1995; Dunn et al., 1995; Sims, 1986).
Physiologically, massage enhances blood and
lymph circulation and parasympathetic re-
sponse (e.g., decreased heart and respiratory
rate, relieved muscle tension, lowered blood
pressure). It has been associated with bet-
ter gastrointestinal functioning, diminished
reliance on analgesics, and improved active
functional levels (DeGood, 1996). In research
with another focus, preterm infants have ben-
efi ted, showing signifi cantly improved weight
gain and shortened hospitalization with daily
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306 Health Social Work Practice: A Spectrum of Critical Considerations
massage (Field et al., 1986). Other physical
manipulation therapies—too numerous for this
chapter—include deep-tissue work to restruc-
ture the body such as Rolfi ng or the gentler
craniosacral therapy, pressure point techniques
like acupressure, or health awareness through
movement redesign of the Feldenkrais
approach.
The term mind–body refers to a broad
category of techniques—meditation, hypno-
sis, biofeedback, autogenic training, relaxed
abdominal breathing, guided imagery, pro-
gressive muscle relaxation—based on the
understanding that psyche and soma are in-
terconnected in a dynamic, unifi ed system.
The bidirectional communication among auto-
nomic, musculoskeletal, and psychoneuroen-
docrine systems via neurotransmitters means
that stressors can exert a harmful impact on
physiology and biochemistry, but inversely,
relieving stressor impact can afford salutary
effects on the body and total health.
Blumenthal and colleagues at Duke Univer-
sity (1997) assessed patients with angina in a
16-week mind–body program and found fewer
subsequent episodes than among controls. Al-
though stressors that initiate damaging physi-
ological reactions may not be perceived or
processed consciously, both acute and chronic
psychological distress produce symptoms,
such as elevated pulse and blood pressure as
well as respiratory rates, platelet aggregation,
insulin levels, sodium retention, and decre-
ments in immune response (Seaward, 1997;
Wells-Federman et al., 1995). Techniques with
empirical support of benefi ts offsetting dam-
aging levels of stress include the techniques
discussed next.
• Guided imagery techniques have demon-
strated effectiveness, but guided imagery
also affords personal customization. For
example, a detailed mental image, using
all senses—visual, auditory, olfactory, tac-
tile—can be evoked that represents for that
individual a safe, comfortable, and healing
setting. Strong associations were reported
between such practices and mitigation of
chronic pain as well as improvements in
immune-infl uenced diseases (Benson &
Stuart, 1993; Hillhouse & Adler, 1991). In
cancer settings, guided imagery combined
with progressive muscle relaxation was
more effective at reducing the experience
of pain severity among women with stage
II, III, and IV disease than simple sup-
portive communications (Sloman, 1995);
cancer patients trained in guided imagery
were able to diminish the severe oral mu-
cositis pain that followed chemotherapy
(Pan, Morrison, Ness, Fugh-Berman, &
Leipzig, 2000). In another study among
women with breast cancer, a link was ob-
served with improved killer-cell activity
along with mood enhancement (Fawzy et
al., 1993; Newton, 1996). Also, with breast
cancer patients, enhanced interferon levels
accompanied by improved stamina and
well-being that was substantially greater
than controls resulted with this mind–body
technique (Justice, 1996). In addition,
guided imagery relieved chemotherapy-
induced nausea and vomiting in the oncol-
ogy setting (Troesch, Rodehaver, Delaney,
& Yanes, 1993).
• Meditation is a traditional practice in
many cultures with technical variations,
but when it is stripped of religious or
cultural overlay, it reveals substantial
commonalities. Basic guidelines involve
keeping the mind calmly focused on the
present moment and diminishing painful
ruminations about the past and anxious
preoccupations with the future. In the
concentrative approach of meditation,
one is instructed to maintain attention on
the breath or the repetition of a special
word, phrase, sound (mantra), or image;
alternatively, the mindfulness approach
encourages nonjudgmentally observing
sensations and thoughts as they enter the
mindscape. The psychophysiological ben-
efi ts evidenced with mindfulness-based
stress reduction, a meditative discipline
developed by John Kabat-Zinn and his
team at University of Massachusetts and
utilized in more than 200 U.S. hospitals,
include alleviation of chronic and here-
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Developing a Shared Understanding 307
tofore unremitting pain (Cassileth, 1998;
Hafner, 1982; Kabat-Zinn, Lipworth, &
Burney, 1985); 4 times more rapid heal-
ing of psoriasis (Kabat-Zinn et al., 1998);
and anxiety and stress relief with accom-
panying physiological benefi ts (e.g., re-
duced hypertension).
• Hypnosis is a practice that uses selective
attention to induce a specifi c altered state
(trance), which enhances communica-
tion between conscious and unconscious
processes (e.g., functioning of autonomic
nervous system) for therapeutic benefi t.
All hypnosis is in effect self-hypnosis—
that is, to produce a hypnotic state, the cli-
ent must be engaged actively as a willing
participant with the therapist as facilita-
tor. Although it is thought that the brain’s
limbic system, which infl uences emotions
and controls what is believed to be invol-
untary body functions, responds to hyp-
notic suggestions, a precise understanding
of how this intervention works still eludes
scientifi c explanation. By 1991, at least
15,000 health professionals practiced
hypnotherapy in combination with their
conventional medicine to ameliorate
many conditions (Goldberg et al., 2002).
Hypnotherapy helps to accelerate healing
(Ginandes, Brooks, Sando, Jones, & Aker,
2003), triggering the release of endog-
enous anti-infl ammatory properties; curb
secretion of excess stomach acids among
ulcer patients; soothe chronic and acute
pain (Montgomery, DuHamel, & Redd,
2000); relieve side effects of chemother-
apy, such as nausea and vomiting (Levi-
tan, 1992; Lynch, 1998; Marchioro et al.,
2000; Syrjala, Cummings, & Donaldson,
1992); reduce blood loss and pain medi-
cation needs associated with surgery (Dis-
brow, Bennett, & Owings, 1993; Enqvist,
1991); assist in asthma relief (Hackman,
Stern, & Gershwin, 2000); and provide
measurable relief with other diffi cult treat-
ments (Goldberg et al., 2002). Generating
important implications, a randomized clin-
ical trial comparing a 15-minute hypnosis
session just prior to a breast biopsy or
lumpectomy to a control group of patients
who did not receive hypnosis resulted in
signifi cantly reduced need for anesthetics,
reported pain intensity, and postsurgical
nausea and fatigue among the experimen-
tal group. Another striking benefi t of this
brief intervention was an institutional cost
savings of $773 per patient, which is par-
ticularly germane when considering na-
tional concerns about runaway health-care
expenses (Montgomery et al., 2007). With
a different focus, one study demonstrated
that burn patients healed more rapidly and
with less pain when a light trance was in-
duced soon after the trauma (Findlay, Po-
dolsky, & Silberner, 1991). With pediatric
patients, hypnosis was helpful with prob-
lems from recurrent migraines to sickle
cell anemia (Goldberg et al., 2002). Con-
trary to earlier estimations, approximately
94% of patients experience some relief,
and those more easily hypnotized benefi t
even more substantially (Podolsky, 1991).
• Biofeedback is a painless procedure in
which sensors, attached to electrodes, are
slipped on fi ngers or placed as upper arm
cuffs while a client observes signals on a
computer monitor indicating that he or she
is able to achieve a desired state, for ex-
ample, reduced heart rate, relief of tension
headaches, or warmer peripheral tempera-
ture (Long, Machiran, & Bertell, 1986).
This technique involves patients learning to
control seemingly involuntary body func-
tioning (e.g., skin temperature, brain wave
patterns) when they practice relaxation
tactics. It has been found useful with Rey-
naud’s disease (in which fi ngers become
painfully cold in cooler but not necessarily
frigid conditions). Numerous insurers reim-
burse the cost of this therapy (Goldberg et
al., 2002).
Mind–body techniques are congruent with
social work objectives of empowering patients
to implement positive changes through self-
management and with social work values of
respecting and tailoring to individual needs,
because each of these techniques is amenable
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308 Health Social Work Practice: A Spectrum of Critical Considerations
to individual adjustment. Moreover, through
professional training programs and workshops,
mind–body approaches can be added to clini-
cal skills and incorporated into professional
social work practice. By engaging patients and
clients in these complementary techniques—
training and treating individuals whose health
can benefi t from mind–body modalities—so-
cial workers enlarge their clinical role beyond
that of patient advocate and medical liaison
and in treatment ideals that echo social work
fundamentals.
Nutrition and Lifestyle Regimens
Traditional medical systems rely heavily on
dietary adjustments to restore or maintain bal-
ance, seen as the essence of health. Depending
on environmental factors and the individual’s
energetic status, specifi c foods are to be eaten
and others are to be deliberately avoided or
eliminated.
Macrobiotic regimen is a lifestyle and
dietary discipline emerging from Japanese
Zen practices that prescribe individualized
regimens to restore yin-yang energy balance.
Dietary guidelines are based on fresh, whole
foods, such as whole cereal grains, fresh veg-
etables, legumes, seeds, nuts, fruits, and some
fi sh, with adjustments to match the individu-
al’s particular imbalanced energy, which is
determined by evaluating condition and con-
stitution, and to correspond to changing cli-
mate exigencies.
Lifestyle Heart Trial showed patients with
substantial coronary artery disease had signifi –
cant regression of atherosclerosis when fol-
lowing a specifi c low-fat diet combined with
nonimpact exercise and relaxation strategies
(Ornish et al., 1983, 1998). Other dietary in-
formation from epidemiological and observa-
tional research suggests that vegetarian eating
may relieve rheumatoid arthritis symptoms
and may reduce arthritic incidence and allergy
problems by cutting protein triggers (Adam,
1995). Furthermore, high fi ber as well as other
aspects of whole grain, vegetable, legume, and
fresh fruit consumption is linked with healthier
gastrointestinal functioning and diminished
risk of specifi c cancers and cardiovascular
problems (Block, 1999; Burkitt, Walker, &
Painter, 1974).
Nutritional supplementation has shown
a continual and dramatic rise in use among
Americans in recent decades, despite medical
controversy (Murray & Pizzorno, 1996). This
fact reconfi rms the public conviction that bo-
tanicals, herbals, and nutrients do make a sig-
nifi cant difference and are generally less toxic
than pharmaceutical drugs. Even in the midst
of a media furor, there is little contest that spe-
cifi c agents can improve resistance to and du-
ration of certain infectious sicknesses (Hemila,
1994), even among elderly people (Chandra,
1992). Supplements can augment preventive
measures to counter severe disorders (e.g.,
protective against heart diseases as well as
certain cancers), particularly vitamins E and
C as well as carotenoids (Loveland-Cook et
al., 2000). Preliminary evidence also supports
the value of coenzyme Q10 for supportive
benefi ts with cardiovascular problems, such
as congestive heart failure (Gaby, 1999), and
protection from cardiotoxic chemotherapies
like doxorubicin (Mortensen, Aabo, Jonsson,
& Baandrup, 1986). Chromium is helpful with
type 2 diabetes (Sullivan, 2000).
Bioelectronic therapies depend on the theo-
retical premise that all living organisms are
affected by and exist within electromagnetic
(EM) fi elds. Therapeutic improvement of EM
fi elds—altering the individual’s energy for
physiological relief—is postulated by creat-
ing bodily contact of an individual’s EM fi eld
with a weak, nonthermal EM fi eld to enhance
blood and lymph circulation, cellular oxygen-
ation, and detoxifi cation, thus relieving pain,
hastening the healing process, and boosting
energy. Enhanced healing of bone fractures
was evidenced in studies reported in 1984
(Barker, Dixon, Sharrard, & Sutcliffe), and ac-
celerated wound healing was conferred by this
energy modality (Bassett, 1993; Lee, Canaday,
& Doong, 1993). Research to verify benefi ts of
magnets applied on the body has not produced
statistically signifi cant results.
Biological treatments are chemical formu-
lations for injection or ingestion theorized
to achieve very particularized physiological
JWBT514_ch12.indd 308JWBT514_ch12.indd 308 9/21/11 7:43 PM9/21/11 7:43 PM
Developing a Shared Understanding 309
responses, such as enhancing specifi c immune
factors, but are not pharmaceutical drugs that
target the elimination of disease-producing
organisms or disease processes. Chelation
therapy, for example, involves an injectable
substance (ethylene diamine tetracetic acid
[EDTA]) said to attach to toxic materials in the
body (e.g., aluminum and lead) that are then
eliminated from the body through excretion
rather than reabsorbed. Chelation has been
shown useful with cases of lead poisoning and
is being assessed for other health problems
(Chappell, 1995). EDTA has been added as an
effective adjunct for atherosclerotic problems,
including strokes and peripheral vascular
disease (Goldberg et al., 2002).
Herbal Medicines (Botanical Medicine)
Medicinal herbal applications have a
60,000-year-old history, the most ancient form
of medical treatment, with evidence dating
as far back as the Neanderthal era (Solecki,
1975). In Europe, herbal therapies hold a long-
honored tradition and are more commonly in-
corporated into standard treatment plans than
in American medicine. Even across the United
States, herbal regimens are inching into main-
stream medical plans with science verifying
what medical folklore has long posited. Herb-
als are plant substances, which can include the
root, fl ower, stem, seeds, or leaves, used to
enhance or correct improper functioning of or-
gans and represent a core treatment component
in TCM, Ayurvedic medicine, and naturopa-
thy. Garlic (and its compounds), the herb most
universally recognized for medicinal value
(Blumenthal, Goldberg, & Brinckmann, 2000;
Goldberg et al., 2002), takes a lead in varied
applications. It is ingested to help reduce prob-
lematic cholesterol and elevated blood pres-
sure (Vorberg & Schneider, 1990; Warshafsky,
Kramer, & Sivak, 1993), is taken commonly
for its antibiotic and antimicrobial properties
(Sullivan, 2000), is a popular antidote for gout
and rheumatism (Foster, 1991), and has been
shown to reverse arterial plaqueing (Koscielny
et al., 1999). In addition, in large epidemiolog-
ical studies, modest intake was linked statisti-
cally with reduced intestinal cancer (Lawson,
1997). By 1998, 1,990 research papers had
been published on the benefi cial activities of
garlic (Goldberg et al., 2002). In just one study
among heart patients, 6 milligrams garlic daily
resulted in a 35% reduction of heart attacks
and a 45% reduction in mortality compared
with placebo (Lawson, 1997).
RESEARCH DILEMMA
The best potential for increased respect and
comprehension of CAM and integrative ben-
efi ts is continuing controlled research. What
impedes full investigation are issues of eco-
nomics and real methodological conundrums.
The bias against full studies can be signifi cant,
because unlike testing of single pharmaceuti-
cal drugs, the likelihood of fi nancial gain from
CAM is minuscule and the cost is great. In
addition, most alternative systems, CAM pro-
tocols, and integrative regimens are diffi cult
to study because they usually involve com-
plex, multifaceted programs that are diffi cult
to evaluate against single therapies and seem
to defy unifocal investigative efforts, the most
common scientifi c investigational approach.
One additional puzzle is how to design a true
double-blind study on certain practices such as
meditation; that is, what can serve as a genu-
ine placebo control? And fi nding groups to
maintain as controls is a thorny task because
surveys tell us the vast numbers of patients on
their own initiative and in secret are receiving
alternative treatments. Finally, even diagnostic
categories among alternative systems do not
always correspond to those of biomedicine, so
comparisons can be inexact.
PROBLEMS AND CONCERNS
What confuses a defi nitive evidence base is that
specifi cs of treatment vary considerably (e.g.,
Chinese versus Korean acupuncture). This vari-
ance among practices can be very problematic
if counseling a client, for example, on the value
of acupuncture for musculoskeletal pain based
on documented randomized controlled trials
JWBT514_ch12.indd 309JWBT514_ch12.indd 309 9/21/11 7:43 PM9/21/11 7:43 PM
310 Health Social Work Practice: A Spectrum of Critical Considerations
due to uncertainty about real correspondence
between the methodology used by the local
acupuncturist and the precise approach tested
in the research. For another example, it is not
clear for migraines which precise acupuncture
points are most effective, the appropriate dura-
tion for needle insertion, or the necessary num-
ber of treatments (Vickers, 2003).
An unresolved quandary haunts a full
melding of practices: Can different medi-
cal models be integrated effectively and
truly? That is, when diagnostic and thera-
peutic systems are based on very different
biological and philosophical premises, can
treatment plans be merged successfully? For
example, a single disease presentation, in
Western medicine labeled as stomach can-
cer, can point to several very different mala-
dies in the Chinese system, such as stomach
yin defi ciency due to stomach heat, blood
stagnation due to chi stagnation, or stom-
ach yang defi ciency (Beinfi eld & Korngold,
2003), each demanding a distinct, even in-
congruent, treatment. Although an Ameri-
can physician would reasonably and almost
automatically prescribe one chemotherapy
protocol intended specifi cally for stomach
cancer, the Chinese doctor might advise very
dissimilar regimens for this same stomach
cancer, determined by the different Chinese
diagnostic categories.
Another continuing concern is that formal
training, credentialing, and licensure of CAM
practitioners remains inconsistently monitored
or required across the 50 states. (An excep-
tion is chiropractic, licensed in all states with
specifi c training standards.) Even though the
risk of toxicity of most herbal preparations is
usually very small because many formulations
incorporate multiple chemical substances be-
lieved to synergistically enhance their thera-
peutic potential, toxic consequences and
adverse herb–drug interactions are possible.
However, compared to prescriptive pharma-
ceuticals, supplements carry fractional haz-
ards. Furthermore, experts acknowledge that
at least 51% of prescriptive drugs can produce
severe side effects that went undetected even
in controlled testing prior to approved use
(Moore, Psaty, & Furberg, 1998). For these
reasons, expert guidance is essential when a
patient is being treated simultaneously for se-
rious disease.
Because dietary supplements are sold as
food compounds, they are unregulated by Food
and Drug Administration standards. Quality
issues, such as contamination and variation
in content and processing, are a continuing
worry for an untutored public (De Smet, 1999;
Marrone, 1999). Some formulations hit the
market with meaningless amounts of identifi ed
key ingredients; many do not even dissolve or
disintegrate after ingested; and most are not
standardized. Even if positive research fi nd-
ings are available on one product (e.g., black
cohosh) indicating safety and benefi ts, there is
no assurance that a different cohosh product
will produce the same effect because actual
dosing might be inconsistent.
Certainly some more aggressive alternative
practices do carry the possibility of untoward
consequences, but the potential for truly severe
side effects from most CAM therapies seems
dwarfed by that of pharmaceuticals or more
invasive procedures. When CAM therapies
are practiced skillfully and applied appropri-
ately, the likelihood of problematic effects is
minimized (Jonas, 1998). This consideration
does not deny limited but real concerns about
problematic interactions between alternative
practices and conventional drugs. One such ex-
ample is the use of special grapefruit prepara-
tions (as reported informally by a woman from
Jamaica, October 2003) to reduce symptoms
of hypertension. Regular grapefruit juice con-
sumption is known to increase blood volume
of specifi c antihypertensives, antihistamines,
and antidepressants by down-regulating cy-
tochrome P450, an enzyme that functions in
the body to metabolize drugs (Beinfeld &
Korngold, 2003). An example of possible
herbal contraindication is the use of Hyperi-
cum perforatum (St. John’s wort), available
for purchase in health food stores and backed
by scientifi c and popular literature as normally
safe and effective with mild to moderate de-
pressive symptoms. This usually benign herb
is known to (a) augment the metabolism of
JWBT514_ch12.indd 310JWBT514_ch12.indd 310 9/21/11 7:43 PM9/21/11 7:43 PM
Developing a Shared Understanding 311
protease inhibitors, thus reducing blood levels
of such medications; (b) elevate the body’s se-
rotonin to potentiate the impact of monoamine
oxidase inhibitor and selective serotonin reup-
take inhibitor antidepression drugs; and (c) in-
terfere with the full effectiveness of drugs such
as cyclosporine and theophylline (Croom,
2000). Another undesired herb-drug complica-
tion, Ginkgo biloba, which is commonly used
for memory and cognitive enhancement, can
inhibit platelet aggregation (as does garlic),
elevating anticoagulant effects of some pre-
scription drugs. However, warnings such as
these stem from scientifi c evaluations of each
herb as a single agent. The impact observed
is moderated when an herb or nutrient is one
component in a multiple compound formula-
tion, whereby, for instance, any anticoagulant
concern is mitigated by the presence of other
herbs. One recommendation for modifying
posited drug-supplement problems is taking
drugs separately from food consumption to
avoid undesired digestive tract interactions
(Blumenthal et al., 2000).
INSURANCE COVERAGE
ISSUES
Several third-party insurance carriers were re-
ported, even in the prior decade, to have cov-
ered 25% of the cost for CAM treatments used
by cancer patients (Campion, 1993). One of
the appeals of alternative practices to Ameri-
can consumers is fi nancial. Many alternative
treatments are less costly than conventional
therapies; exceptions may be interventions
such as antineoplastons (Ernst, 1994, 1995).
In fact, in reporting use of alternatives among
ethnic minorities, MacKenzie and her team
(2003) noted that being uninsured—paying out
of pocket—predicted greater likelihood of un-
conventional practices. Yet managed care com-
panies, confronted by fi erce competition, are
now chasing the very lucrative CAM market to
attract new enrollees from a public enamored
with these once-obscure or seemingly exotic
practices. One marketing strategy of man-
aged care corporations to counter a growing
disenchantment with health maintenance or-
ganization restrictions is to attach a rider to a
general policy to include some alternative care
options. Other groups provide discounted ac-
cess to nonconventional services—25% off
practices such as chiropractic, acupuncture,
and so on (Rauber, 1998). By 2000, 43 insur-
ers covered alternative care, up from just 2 or
3 a few years earlier, and some are marketing
packages with a blend of benefi ts (Pelletier &
Astin, 2002).
CONCLUSION
Today’s health-care terrain is a mélange of
medical preferences and practices mirroring
the nation’s cultural plurality. Encouraging
evidence implies that deep-rooted prejudices
may be fading gradually and a new consen-
sus emerging, one that holds that distinctions
between alternative and conventional medicine
are detrimental (Fontanarosa & Lundberg,
1998). Advocates of a broader medical phi-
losophy believe that there is only good or bad
medicine and that all health professionals are
mandated to maintain an open mind to what
might be most benefi cial for each patient.
On this principle, MacKenzie and her coau-
thors (2003) pointedly ask, “How well do the
health systems we have created fi t the persons
we wish to serve?” (p. 56). One attempt to
address this issue has been a corrective re-
sponse to linguistic problems to untangle and
rephrase complex medical terminology and
to improve how professionals communicate
disease and treatment information to patients
from diverse backgrounds. But this effort has
been motivated largely by the medical need to
persuade patient compliance to seemingly for-
eign and misunderstood protocols (MacKenzie
et al., 2003). Although medical professionals
have initiated efforts at greater language con-
gruence, the need to acknowledge and better
integrate components of divergent medical
practices and thinking into our biomedical par-
adigm is still unmet. To effectively serve and
support individual clients, who embrace cultur-
ally diverse or idiosyncratic health beliefs but
JWBT514_ch12.indd 311JWBT514_ch12.indd 311 9/21/11 7:43 PM9/21/11 7:43 PM
312 Health Social Work Practice: A Spectrum of Critical Considerations
who might get lost in a labyrinth of technical
and personally incongruent medical thinking,
social workers are called on in their special-
ized professional role to build an expanding
familiarity with divergent approaches as a
bridge to better care.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 12.1
Consider this question: Can medical models
shaped by dissimilar, nonparallel paradigms of
health and healing be integrated effectively? If
you believe it is possible, discuss limitations
to combining modern conventional modalities
with a treatment plan from an alternative sys-
tem of medicine using detailed examples. Also,
how would you propose that a medical team go
about helping a client or patient have access to
a treatment plan based on this integration of dis-
parate medical models? If this is not possible
in your opinion, explain why, with detailed and
specifi c examples from the different alternative
systems and how you would communicate this
impossibility to a client/patient.
Learning Exercise 12.2
Using material from this chapter in conjunc-
tion with issues addressed in Chapter 11 on
spirituality in health care and Chapter 6 on
health theories, discuss how you would engage
one of the next people in an open and support-
ive conversation of personal health practices to
enable better care.
• A 40-year-old Mexican American (or
Chinese American) woman diagnosed
with stage II breast cancer, which can be
treated effectively with chemotherapy, has
not shown up for two of her scheduled ap-
pointments. Assume for this assignment
that you have helped her fi nd appropriate
practical support and have communicated
effectively the value of treatment and
availability of pharmaceuticals to coun-
teract side effects, but you wish to under-
stand what other factors prevent her from
continuing with the oncologist’s recom-
mendations. Taking into account cultural
health values while respecting individual
preferences and examining your own med-
ical predispositions, describe your prepa-
ratory thinking and your interaction with
this woman. What do you need to consider
before you actually meet with her? What
questions and what suggestions might
you offer? Then describe how you might
present to her physician the rationale for
why she has been using practices he or she
might regard as problematic alternatives
and how the physician can best create cul-
turally and individually congruent recom-
mendations.
• Consider your advance thinking and sub-
sequent conversations with a 50-year-old
African American man with uncontrolled hy-
pertension. Either his disease is unresponsive
to medications or, as his doctor implies, he
is not adhering to his medical regimen. Al-
ternatively, consider a Native American man
in a similar scenario but with diabetes rather
than hypertension. What alternative recom-
mendations are worth consideration and in-
vestigation? What are some possible barriers
to medical effects?
SUGGESTED RESOURCES
Beinfi eld, H., & Korngold, E. (1992). Be-
tween heaven and earth: A guide to
Chinese medicine. New York, NY: Bal-
lantine Books.
Blumenthal, M. (2003). The ABC clinical
guide to herbs. Austin, TX: American
Botanical Council.
Goldberg, B., Anderson, J.W., & Trivieri,
L. (Ed.). (2002). Alternative medicine:
The defi nitive guide (2nd ed.). Berkeley,
CA: Celestial Arts.
Jonas, W. B., & Levin, J. S. (1999). Essen-
tials of complementary and alternative
medicine. Philadelphia, PA: Lippincott
Williams & Wilkins.
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Moss, D. (Ed.). (2003). Handbook of mind-
body medicine for primary care. Thou-
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Pizzorno, J., & Murray, M. T. (1998). En-
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INFORMATIONAL WEB SITES
National Center for Complementary and
Alternative Medicine (NCCAM)—Toll-
free (888) 644-6226; TTY (for deaf or
hard-of-hearing callers): (866) 464-
3615; e-mail info@nccam.nih.gov
Insurance—www.consumeraction.gov
/insurance.shtml
For a client/patient with medical insurance,
information on CAM treatment cover-
age may be provided by state insurance
departments.
Ornish, Dean—http://www.pmri.org/index
.html
Medicare has proposed coverage for Dr.
Dean Ornish’s Program (a full diet/fi tness
/stress care regimen, a possible alternative
to surgery) for Reversing Heart Disease,
scheduled to begin September 2010.
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13
Families, Health, and Illness
JOHN S. ROLLAND
Illness, disability, and death are universal expe-
riences in families. The real question is not if
we will face these issues but when in our lives
they will occur, under what kinds of conditions,
how long they will last, and how serious they
will be. With major advances in medical tech-
nology, people are living much longer with
conditions that in the past have been fatal. This
means that ever-growing numbers of families
are living with chronic disorders over an in-
creasingly long time span and coping with a
greater number of conditions, often simulta-
neously. This chapter provides a normative,
preventive model for assessment, psychoedu-
cation, and intervention with families facing
chronic and life-threatening conditions. This
model offers a systemic view of healthy family
adaptation to serious illness as a developmental
process over time in relation to the complexi-
ties and diversity of contemporary family life,
modern medicine, and existing fl awed models
of health-care delivery and access to care.
Chapter Objectives
• Outline a comprehensive family systems
model for assessment and clinical interven-
tion with families facing chronic illness and
disability.
• Describe the psychosocial demands of ill-
ness based on their pattern of onset, course,
outcome, incapacitation, and level of uncer-
tainty.
• Delineate the crisis, chronic, and terminal
phases of illness; the transitions between
phases; and the psychosocial developmental
tasks associated with each phase.
• Discuss the interface of illness, individual,
and family development; multigenerational
legacies of illness and loss; and how these
legacies relate to coping and adaptation to
chronic illness.
• Describe how health belief systems affect a
patient’s or family’s response to illness.
OVERVIEW OF THE FAMILY
SYSTEMS-ILLNESS MODEL
Over the past 30 years, family-centered,
collaborative, biopsychosocial models of
health care have grown and evolved (Blount,
1998; Doherty & Baird, 1983; Engel, 1977;
McDaniel, Campbell, Hepworth, & Lorenz,
2005; McDaniel, Hepworth, & Doherty, in
press; Miller, McDaniel, Rolland, & Feetham,
2006; Rolland, 1994a; Seaburn, Gunn,
Mauksch, Gawinski, & Lorenz, 1996; Wood
et al., 2008). There is substantial evidence for
the mutual infl uence of family functioning,
health, and physical illness (Carr & Springer,
2010; D’Onofrio & Lahey, 2010; Weihs,
Fisher, & Baird, 2002) and the usefulness of
family-centered interventions with chronic
health conditions (Campbell, 2003). Weihs and
colleagues (2002) summarized the increasing
body of research regarding the impact of se-
rious illness on families across the life span
and the relationship of family dynamics to ill-
ness behavior, adherence, and disease course.
In this report, a broad defi nition of family was
used. Family was defi ned as a “group of in-
timates with strong emotional bonds . . . and
with a history and a future as a group” (p. 8).
Most illness management takes place within
the context of the family environment. Social
work interventions in health settings aim to
JWBT514_ch13.indd 318JWBT514_ch13.indd 318 9/21/11 7:43 PM9/21/11 7:43 PM
Families, Health, and Illness 319
help families adjust to and live with the de-
mands of an illness or disability, assist fami-
lies in navigating the health-care system, and
enhance quality of life for the entire family.
There is a clear need for a conceptual
model that provides a guide useful to both
clinical practice and research, one that allows a
dynamic, open communication between these
disciplines. What is most needed is a compre-
hensive way to organize our thinking about
all the complex interactions among biologi-
cal illness, family, individual family members,
and professionals involved in providing care.
We need a model that can accommodate the
changing landscape of interactions between
these “parts of the system” over the course of
the illness and the changing seasons over the
life course.
Families enter the world of illness and dis-
ability without a psychosocial map. To master
the challenges presented by an illness or dis-
ability, families must understand the impact
of the condition on the entire family network.
The Family Systems-Illness Model that was
developed by Rolland (1984, 1987a, b, 1990,
1994a, 1998) is based on a strength-oriented
perspective, viewing family relationships as
a resource and emphasizing possibilities for
resilience and growth, not just liabilities and
risks (Walsh, 2006). This model provides so-
cial workers with a framework for assessing
the impact of an illness or disability on family
life and for structuring interventions to meet
the needs of family members.
Defi ned in system terms, an effective psy-
chosocial model for assessing the impact of
illness on family life needs to encompass all
people affected by the condition. The fi rst step
to constructing such a model is to redefi ne the
unit of care to include the family or caregiv-
ing system rather than just the ill individual
(McDaniel et al., in press). This is a departure
from the medical model’s narrow focus on the
patient alone. By using a broad defi nition of
family as the cornerstone of the caregiving
system, we can describe a model of successful
coping and adaptation based on family system
strengths. By viewing the family as the unit of
care, in which a broad range of family forms
and dynamics is normative, social workers can
apply a model that addresses the fi t between
family resources and strengths and the de-
mands of the condition over time.
In situations of chronic disorders, a basic
task for families is to create a meaning for
the illness situation that preserves their sense
of competency and mastery. At the extremes,
competing ideologies can leave families with
a choice between a biological explanation or
one of personal responsibility (e.g., illness as
retribution for wrongdoing). Families desper-
ately need reassurance that they are handling
illnesses appropriately. (Bad things do happen
to good people.) These needs often occur in
the context of a vague or nonexistent psycho-
social map. Many families, particularly those
with untimely disorders, fi nd themselves in
unfamiliar territory and without guides. This
fact highlights the need for a preventive, psy-
choeducational approach that helps families
anticipate normative illness-related develop-
mental tasks over time in a fashion that maxi-
mizes their sense of control and mastery.
To create a normative context for their ill-
ness experience, families need a four-part
foundation:
1. They need a psychosocial understanding of
the condition in systems terms. This means
learning the expected pattern of practical
and affective demands of a disorder over the
life course of the condition, including a time
frame for disease-related developmental
tasks associated with different phases of the
unfolding disorder.
2. Families need to understand themselves as
a systemic functional unit.
3. They need an appreciation of individual
and family life-cycle patterns and changes
to facilitate their incorporation of changing
developmental demands for the family unit
and individual members in relation to the
demands of a chronic disorder.
4. Families need to understand the cultural,
ethnic, spiritual, and gender-based beliefs
that guide the type of caregiving system they
construct. This includes guiding principles
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320 Health Social Work Practice: A Spectrum of Critical Considerations
that defi ne roles, rules of communication,
defi nitions of success or mastery, and fi t with
beliefs of the health-care providers. Family
understanding in these areas facilitates a
more holistic integration of the disorder and
the family as a functional family-health/
illness system evolving over time.
The Family Systems-Illness Model ad-
dresses three dimensions: (1) psychosocial
types of health conditions, (2) major develop-
mental phases in their natural history, and (3)
key family system variables (see Figure 13.1).
It attends to the expected psychosocial de-
mands of a disorder through its various phases,
family systems dynamics that emphasize fam-
ily and individual development, multigenera-
tional patterns, and belief systems (including
infl uences of culture, ethnicity, spirituality,
and gender; see Figure 13.2). The model em-
phasizes the match between the psychosocial
demands of the disorder over time and the
strengths and vulnerabilities of a family.
Psychosocial Types of Illness
The standard disease classifi cation used in
medical settings is based on purely biological
criteria that are clustered in ways to establish
a medical diagnosis and treatment plan rather
than on the psychosocial demands on patients
and their families. The alternative classifi ca-
tion scheme presented here provides a better
link between the biological and psychoso-
cial worlds and thereby clarifi es the relation-
ship between chronic illness and the family
(Rolland, 1984, 1994a). The goal of this ty-
pology is to defi ne meaningful and useful
categories with similar psychosocial demands
for a wide array of chronic illnesses affecting
individuals across the life span.
Onset
Illnesses can be divided into those that have ei-
ther an acute onset, such as strokes, or a grad-
ual onset, such as Alzheimer’s disease. For
acute-onset illnesses, emotional and practical
changes are compressed into a short period
of time, requiring families to mobilize their
crisis-management skills more rapidly. Fami-
lies that are able to tolerate highly charged
emotional situations, exchange roles fl exibly,
problem-solve effi ciently, and utilize outside
resources will have an advantage in managing
acute-onset conditions. Gradual-onset con-
ditions, such as Parkinson’s disease, allow a
more gradual period of adjustment.
Course
The course of chronic diseases generally
takes three forms: progressive, constant, or
In
di
vid
ual
, Fam
ily, and Illness Life Cycles
Be
lief
System
s – Culture/Ethnicity
Type of
Illness/Disability/L
oss
Figure 13.2 Family Systems-Illness Model
Source: From Families, Illness, and Disability: An
Integrative Treatment Model, by J. S. Rolland, 1994a,
New York, NY: Basic Books. Reprinted with permission.
Illness Type
Components of
Family Functioning
Time
Phases
Figure 13.1 Three-Dimensional Model
Source: From “Chronic Illness and the Life Cycle: A
Conceptual Framework,” by J. S. Rolland, 1987a, Family
Process, 26(2), 203–221. Reprinted with permission.
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Families, Health, and Illness 321
relapsing/episodic. With a progressive disease,
such as Alzheimer’s or Parkinson’s, the family
is faced with a perpetually symptomatic fam-
ily member whose disability worsens in a step-
wise or gradual way. The family must live with
the prospect of continual role change and ad-
aptation to continued losses as the disease pro-
gresses. Increasing strain on family caregiving
is caused by exhaustion, with few periods of
relief from the demands of the illness, and by
new caregiving tasks over time.
With a constant-course illness, the oc-
currence of an initial event is followed by
a stable biological course, such as a single
heart attack or spinal cord injury. Typically,
after an initial period of recovery, the ill-
ness is characterized by some clear-cut defi –
cit or limitation. The family is faced with
a semipermanent change that is stable and
predictable over a considerable time span.
Therefore, the potential for family exhaus-
tion exists without the strain of new role de-
mands over time.
Relapsing, or episodic-course illnesses,
such as back problems and asthma, are dis-
tinguished by the alternation of stable low-
symptom periods with periods of fl are-up or
exacerbation. Families are strained by both
the frequency of transitions between periods
of crisis and noncrisis and ongoing uncertainty
about when the disorder might recur. Families
must develop two modes of operation, one to
cope with fl are-ups and another to address
periods of relative stability. Families must re-
main fl exible as they alternate between these
two forms of organization. The wide psycho-
logical discrepancy between low-symptom
periods versus fl are-up is a particularly taxing
feature unique to relapsing diseases.
Outcome
The extent to which a chronic illness leads
to death or shortens a person’s life span has
a profound psychosocial impact. The most
crucial factor is the initial expectation of
whether a disease will cause death. On one
end of the continuum are illnesses that do not
typically affect the life span, such as allergies
or arthritis. At the other extreme are illnesses
that are clearly progressive and fatal, such as
metastatic cancer. An intermediate, more un-
predictable category includes both illnesses
that shorten the life span, such as heart dis-
ease, and those that may bring sudden death,
such as hemophilia. A major difference be-
tween these kinds of outcome is the degree
to which the family experiences anticipatory
loss and its pervasive effects on family life
(Rolland, 1990, 2004).
Incapacitation
Disability can involve impairment of cogni-
tion (e.g., Alzheimer’s disease), sensation
(e.g., blindness), movement (e.g., stroke with
paralysis), stamina (e.g., heart disease), dis-
fi gurement (e.g., mastectomy), and conditions
associated with social stigma (e.g., acquired
immunodefi ciency syndrome [AIDS]; Olkin,
1999). The extent, kind, and timing of dis-
ability imply sharp differences in the degree
of family stress. For instance, the combined
cognitive and motor defi cits caused by a stroke
necessitate greater family reorganization than
those caused by a spinal cord injury, in which
cognitive abilities are unaffected. For some ill-
nesses, such as stroke, disability often is worst
at the beginning. For progressive diseases,
such as Alzheimer’s, disability looms as an
increasing problem in later phases of the ill-
ness, allowing a family more time to prepare
for anticipated changes and an opportunity for
the ill member to participate in disease-related
family planning while still cognitively able
(Boss, 1999).
The predictability of an illness, or the de-
gree of uncertainty about the specifi c way in
which it will unfold, overlays all other vari-
ables. For illnesses with highly unpredictable
courses, such as multiple sclerosis, family cop-
ing and adaptation, especially future planning,
are hindered by anticipatory anxiety and am-
biguity about what the family will encounter.
Families able to put long-term uncertainty into
perspective are best prepared to avoid the risks
of exhaustion and dysfunction.
By combining the types of onset, course,
outcome, and incapacitation into a grid, we
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322 Health Social Work Practice: A Spectrum of Critical Considerations
generate a typology that clusters illnesses ac-
cording to similarities and differences in pat-
terns that pose differing psychosocial demands.
Time Phases of Illness
Too often, discussions of “coping with can-
cer,” “managing disability,” or “dealing with
life-threatening disease” approach illness as a
static state and fail to appreciate the dynamic
unfolding of illness processes over time. The
concept of time phases allows social work-
ers and families to think longitudinally and
to understand chronic illness as an ongoing
process with normative landmarks, transitions,
and changing demands. Each phase of an ill-
ness poses its own psychosocial demands and
developmental tasks that require signifi cantly
different strengths, attitudes, or changes from
a family. The core psychosocial themes in the
natural history of chronic disease can be de-
scribed in three major phases: crisis, chronic,
and terminal (see Figure 13.3, Table 13.1).
Crisis Phase
The crisis phase includes any symptomatic
period before diagnosis through the initial
readjustment period after a diagnosis and ini-
tial treatment planning. This phase presents a
number of key tasks for the ill member and
family. Moos (1989) describes certain univer-
sal, practical illness-related tasks, including
(a) learning to cope with any symptoms or
disability, (b) adapting to health-care settings
and treatment procedures, and (c) establishing
and maintaining workable relationships with
Figure 13.3 Timeline and Phases of Illness
Source: From Families, Illness, and Disability: An Integrative Treatment Model, by J. S. Rolland, 1994a,
New York, NY: Basic Books. Reprinted with permission.
Table 13.1 Phases of Illness Developmental Tasks
Crisis Phase
1. Family understands itself in systems terms.
2. Family has a psychosocial understanding of illness.
a. In practical and emotional terms.
b. In longitudinal and developmental terms.
3. Family appreciates developmental perspective
(individual, family, illness life cycles).
4. Family experiences crisis reorganization.
5. Family creates meaning that promotes family
mastery and competence.
6. Family defi nes challenge as shared one in “we”
terms.
7. Family accepts permanence of illness/disability.
8. Family grieves loss of family identity before
chronic disorder.
9. Family acknowledges possibilities of further loss
while sustaining hope.
10. Family develops fl exibility to ongoing psychosocial
demands of illness.
11. Family learns to live with symptoms.
12. Family adapts to treatments and health-care
settings.
13. Family establishes functional collaborative
relationship with health-care providers.
Chronic Phase
1. Maximize autonomy for all family members given
constraints of illness.
2. Balance connectedness and separateness of family
members.
3. Minimize relationship skews in the family.
4. Maximize mindfulness to possible impact on
current and future phases of family and individual
life cycles.
Terminal Phase
1. Complete the process of anticipatory grief and
unresolved family issues.
2. Support the terminally ill member.
3. Help survivors and dying member live as fully as
possible in the time remaining.
4. Begin the family reorganization process.
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Families, Health, and Illness 323
the health-care team. There also are critical
tasks of a more general, existential nature. The
family needs to (a) create a meaning for the
illness that maximizes a sense of mastery and
competency, (b) grieve for the loss of health,
(c) gradually accept the illness as permanent
while maintaining a sense of continuity be-
tween its past and future, (d) pull together
to cope with the immediate crisis, and (e) in
the face of uncertainty, develop goals for the
future.
During this initial adjustment period, health
professionals have enormous infl uence over a
family’s approach to and sense of competence
in accomplishing these developmental tasks.
Initial meetings and advice given at the time
of diagnosis can be thought of as a “framing
event.” Because families are so vulnerable
at this point, clinicians need to be extremely
sensitive in their interactions with family
members. They should be aware of messages
conveyed by their behavior in interactions with
the family. This framing event has a powerful
infl uence on what the family decides is nor-
mal. For instance, if a clinician meets with
parents separately from adolescents to give
them information about a cancer diagnosis and
prognosis, the parents may assume they were
being instructed implicitly to protect their
adolescent from any discussion of the illness.
Social workers can encourage physicians to
ask patients whom they would like to include
in important discussions or can help reframe
these experiences for families by asking them
about their preferences.
With life-threatening conditions that can
cause sudden death (e.g., heart attack), there is
a higher premium on early frank conversation.
Knowing an ill member’s wishes concerning
heroic medical efforts and life support can
benefi t everyone. For example, in one family,
the father had serious heart disease. Every-
one, including the father, became emotionally
paralyzed by fear because end-of-life decision
making had been avoided. Family consulta-
tions facilitated the father making his wishes
known regarding the limits on life-saving ef-
forts. This relieved his family members be-
cause they knew his feelings if they had to
make life-and-death decisions. For the father,
making his wishes known not only gave him
a sense of personal control over the end of
his life but also freed him to focus on living
well and maximizing his physical well-being.
Despite the short-run challenge of having end-
of-life discussions, it is important to keep in
mind that many of the most wrenching end-
of-life experiences for families occur when
the wishes of a dying member are unknown or
have been disregarded. With conditions, such
as Alzheimer’s disease, involving progressive
dementia, there is added incentive for conver-
sations before the affected person’s cognitive
impairment makes meaningful discussion im-
possible (Boss, 1999).
Chronic Phase
The chronic phase, whether long or short, is
the time span between the initial diagnosis/re-
adjustment and the third phase, when issues of
death and terminal illness predominate. This
phase can be marked by constancy, progres-
sion, or episodic change. It has been referred
to as “the long haul” or “day-to-day living
with chronic illness” phase. Often the patient
and family have come to grips psychologically
and organizationally with permanent changes
and have devised an ongoing coping strategy.
The ability of the family to maintain the sem-
blance of a normal life, attending as equitably
as possible to both the illness and to normative
developmental tasks, is key during this period.
If the illness is fatal, this is a time of living in
limbo. For certain highly debilitating but not
clearly fatal illnesses, such as a massive stroke
or dementia, the family can feel saddled by an
exhausting problem “without end.” Paradoxi-
cally, the family may feel its hope to resume
a “normal” life can be realized only after the
death of the ill member. The maintenance of
maximum autonomy for all family members in
the face of prolonged adversity helps to offset
trapped, helpless feelings.
For long-term disorders, customary pat-
terns of intimacy for couples become skewed
by discrepancies between the ill member and
the well spouse/caregiver (Rolland, 1994b).
As one young husband lamented in a clinical
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324 Health Social Work Practice: A Spectrum of Critical Considerations
meeting regarding his wife’s cancer, “It was
hard enough 2 years ago to absorb that, even if
Ann was cured, her radiation treatment would
make pregnancy impossible. Now I fi nd it un-
bearable that her continued slow, losing battle
with cancer makes it impossible to go for our
dreams like other couples our age.” Normative
ambivalence and escape fantasies often remain
underground and contribute to survivor guilt.
Psychoeducational family interventions that
normalize such emotions related to threatened
loss can help prevent destructive cycles of
blame, shame, and guilt.
Terminal Phase
In the terminal phase of an illness, the inevi-
tability of death becomes apparent and domi-
nates family life. At this point, the family must
cope with issues of separation, death, mourn-
ing, and beginning the reorganization process
needed for the resumption of “normal” fam-
ily life beyond the loss (Walsh & McGoldrick,
2004). Families that adapt best to this phase
are able to shift their views of hope and mas-
tery from controlling the illness to a successful
process of letting go. Optimal coping involves
emotional openness as well as dealing with the
myriad practical tasks at hand. This includes
seeing this phase as an opportunity to share
precious time together to acknowledge the
impending loss, to deal with unfi nished busi-
ness, and to say good-byes. If they have not
decided beforehand, the patient and key fam-
ily members need to decide about such things
as a living will; the extent of medical heroics
desired; preferences about dying at home, in
the hospital, or at hospice; and wishes about a
funeral or memorial service and burial.
Transitions Between Phases
Critical transition periods link the three time
phases. These transitions present opportuni-
ties for families to reevaluate the appropri-
ateness of their previous life structures in
the face of new illness-related developmental
demands. Unfi nished business from the previ-
ous phase can complicate or block movement
through the transitions. Families can become
permanently frozen in an adaptive structure
that has outlived its utility (Penn, 1983). For
example, the usefulness of pulling together in
the crisis phase can become maladaptive and
stifl ing for all family members in the chronic
phase. An illness timeline delineates psycho-
social developmental phases of an illness, each
with its own unique developmental tasks. It is
important for families to address normative
phase-related tasks in sequence to optimize
successful adaptation over the long haul of a
chronic disorder.
New Genetics and an Extended
Illness Timeline
With the mapping of the human genome,
burgeoning scientifi c knowledge is rapidly
increasing our understanding of the mecha-
nisms, treatment, and prevention of disease.
New genetic technologies are enabling physi-
cians to test for increased risk of developing
a serious and life-threatening illness before it
actually occurs. This means that individuals
and families now can be living with illness
risk information long before loved ones have
developed symptoms of those illnesses (Miller
et al., 2006), which signifi cantly increases the
amount of time and energy that families spend
considering an illness and lengthens the illness
timeline to include nonsymptomatic phases
(Rolland & Williams, 2005). The nonsymp-
tomatic phases are awareness, pretesting, test/
posttesting, and long-term adaptation. These
nonsymptomatic phases are distinguished by
questions of uncertainty. Fundamental issues
include the potential amount of genetic knowl-
edge medically available, decisions about how
much of that information various family mem-
bers choose to access, and living with the psy-
chosocial impact of those choices.
For some, the nonsymptomatic crisis phase
begins when predictive testing becomes avail-
able, continuing through the decision to pursue
testing and initial posttesting adaptation. For
others, this phase begins as individuals reach
signifi cant developmental milestones and
begin to consider testing. Sometimes, plans
for having children raise fears of passing on
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Families, Health, and Illness 325
a mutation and thus spark an interest in test-
ing. Some women decide to be tested for he-
reditary breast and ovarian cancer genes when
they reach an age that coincides with the age at
which another blood relative—a mother, aunt,
or older sister—was diagnosed. During the
posttesting phases, families need to accept the
permanence of the genetic information. They
must develop meanings that preserve their
sense of competency and fl exibility in the face
of future uncertainty or loss (Rolland, 2006a;
Werner-Lin, 2008).
After receiving genetic information, fami-
lies may live in limbo for years in the long-
term adaptation phase. Social workers can
help families maintain mastery during this pe-
riod by leading them to acknowledge the pos-
sibility, probability, or inevitability of illness
and loss, fi nd meaning that transcends biologi-
cal outcomes, and build family fl exibility into
planning that balances illness concerns with
normative family developmental milestones.
The involvement of the health-care system
is very different with predictive testing than
with a diagnosed illness, a fact that presents
a major psychosocial challenge. Despite the
enormous psychosocial impact of positive
testing results, families usually have limited
contact with health professionals after initial
testing. There is a need for ongoing, family-
centered, collaborative approaches to prevent
isolation and fear.
We can orient families to the value of
prevention-oriented consultations at key fu-
ture life-cycle transitions, when the experi-
ence of genetic risk likely will be heightened.
Concerns about loss may surface that family
members had postponed or thought they had
worked through. It is vital to prepare fam-
ily members for the fact that concerns about
genetic risk and decisions about whether to
pursue genetic testing will be more activated
during transitional periods, such as launching
young adults and marriage or partner commit-
ments. Such feelings also can be reactivated
by critical events, such as genetic testing of
another family member, diagnosis of a serious
illness in immediate or extended families or
friends, or death of a loved one. Social workers
can help family members decide about circum-
stances when further family discussion would
be helpful, who would be appropriate to in-
clude, and how to discuss genetic risk with
children or adolescents.
CLINICAL AND RESEARCH
IMPLICATIONS
The Family System-Illness Model provides
a framework for assessment and clinical in-
tervention by facilitating an understanding of
chronic illness and disability in psychosocial
terms. The interaction of the time phases and
typology of illness provides a framework for a
normative psychosocial developmental model
for chronic disease that resembles models for
human development. The time phases—crisis,
chronic, and terminal—can be considered
broad developmental periods in the natural his-
tory of a chronic disease. Attention to features
of onset, course, outcome, and incapacitation
provides markers that focus clinical assessment
and intervention with a family. For instance,
acute-onset illnesses demand high levels of
adaptability, problem solving, family reorgani-
zation, and balanced cohesion. In such circum-
stances, helping families to maximize fl exibility
enables them to adapt more successfully.
This framework can help in research design.
The typology and time-phase framework can
facilitate research aimed to sort out the relative
importance of different psychosocial variables
across a spectrum of chronic disorders. Par-
ticular “psychosocial types” of disorders can
be considered crudely matched as to onset,
course, outcome, incapacitation, and level of
uncertainty. Specifi c typology variables can
be utilized to analyze and compare individual
and family dynamics related to different con-
ditions over time. Time phases can facilitate
a methodology for longitudinal studies. Mul-
tiple observations can be spaced at intervals
that correspond to different time phases.
The model is guided by awareness of the
components of family functioning most relevant
to particular types or phases of an illness and
therefore can inform goal setting and treatment
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326 Health Social Work Practice: A Spectrum of Critical Considerations
planning. Using a psychoeducational approach,
social workers can work with families to create
a psychosocial map, deciding on specifi c goals
together to maximize a sense of control and re-
alistic hope. This process empowers families in
their journey of living with a chronic disorder.
This knowledge also educates family members
about warning signs that should alert them to
request brief, goal-oriented treatment at appro-
priate times. The framework is useful for timing
family psychosocial checkups to coincide with
key transition points over the course of both the
illness and individual family members’ and the
family’s development. For families with limited
resources or access to psychosocial care, social
workers can educate families in their limited
time together about what to expect at nodal
points in the illness journey to minimize future
distress.
The model also informs evaluation of gen-
eral functioning and illness-specifi c family
dynamics, such as the interface of the illness
with individual and family development; the
family’s multigenerational history of cop-
ing with illness, loss, and other adversity; the
family’s health and illness belief system; the
meaning of the illness to the family; social
support; use of community resources; and the
family’s capacity to manage illness-related cri-
ses or perform home-based medical care. At a
larger systems level, the model provides a lens
for clinicians to analyze shifts in relationships
among health-care institutions, professionals,
the patient, and family members.
Psychoeducational Family Groups
Preventively oriented family psychoeduca-
tional or support groups for patients and their
families (Gonzalez & Steinglass, 2002; Ste-
inglass, 1998) are an increasingly utilized,
cost-effective way to address illness concerns
of families and can be designed to deal with
different types of conditions (e.g., progres-
sive, life-threatening, relapsing). They can be
provided in either as 1-day or as time-limited,
weekly or biweekly meetings for three to six
sessions. Brief psychoeducational modules,
timed for critical phases of particular types
of diseases, enable families to digest manage-
able portions of a long-term coping process.
Modules can be tailored to particular phases
of the illness and to family coping skills nec-
essary to confront disease-related demands.
This method provides a cost-effective preven-
tive service that networks families, counteracts
their isolation, and helps identify families at
high risk for maladaptation.
Grounded in a family systems-based psy-
choeducational framework, these groups bring
together families facing conditions with similar
psychosocial demands. The goals of psychoedu-
cational family groups are to help families cope
as a team with the continued demands of chronic
illness, to mobilize the ill individuals’ natural
support networks, and to reduce the negative ef-
fects of both normative and illness-related fam-
ily stressors. In other words, the aim is to fi nd
“a place for the illness in the family while at the
same time keeping the illness in its place” (Gon-
zalez, Steinglass, & Reiss, 1989, p. 80). This is
achieved by providing informational support
through collaboration with health-care provid-
ers, social networking, and skill building.
These groups emphasize a resilience per-
spective, focusing on family strengths and the
development of positive coping techniques and
problem-solving skills. This allows families to
minimize negative and pathologizing views
about their adaptation to illness management.
Finally, the intervention addresses the needs
of all family members, giving each participant
the opportunity to voice concerns and to form
cross-family alliances with others in similar
family roles (Gonzalez & Steinglass, 2002;
Steinglass, 1998). Social workers facilitating
such groups may use tools such as social skills
and problem-solving training, practicing these
skills during group sessions, and encouraging
families to bring their experiences with these
skills back to the group for consideration.
FAMILY ASSESSMENT
As chronic illnesses become incorporated into
the family system and all its processes, cop-
ing is infl uenced by illness-oriented family
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Families, Health, and Illness 327
dynamics that concern the dimension of time
and belief systems.
Multigenerational Legacies of Illness,
Loss, and Crisis: Constructing a
Genogram
A family’s current behavior, and therefore its
response to illness, cannot be understood ad-
equately apart from its history (Boszormenyi-
Nagy, 1987; Bowen, 1993; Byng-Hall, 1995;
Framo, 1992; McGoldrick, Garcia-Preto, &
Carter, 2010; Walsh & McGoldrick, 2004).
Social workers can use historical question-
ing and construct a basic genogram, and
timeline to track nodal events and transitions
(McGoldrick, Gerson, & Petry, 2008; see Ap-
pendix 13.1). This process helps clinicians gain
an understanding of a family’s organizational
shifts and coping strategies as a system in re-
sponse to past stressors and, more specifi cally,
to past illnesses. Such inquiry helps explain
and predict the family’s current style of coping,
adaptation, and creation of meaning. A multi-
generational assessment helps to clarify areas
of strength and vulnerability. It also identifi es
high-risk families burdened by past unresolved
issues and dysfunctional patterns that prevent
them from adequately addressing the chal-
lenges presented by a serious condition.
A genogram oriented toward illness focuses
on how a family organizes itself and adapts as
an evolving system around major stressors,
especially previous illnesses and unexpected
crises, in the current and previous genera-
tions. A central goal is to bring to light areas
of consensus and “learned differences” that
are sources of cohesion and confl ict. Patterns
of coping, replications, discontinuities, shifts
in relationships (e.g., triangles, cutoffs), and
sense of competence are noted. These patterns
can be transmitted across generations as fam-
ily pride, myths, taboos, catastrophic expecta-
tions, and belief systems (Seaburn, Lorenz, &
Kaplan, 1992; Walsh & McGoldrick, 2004). In
one case involving a couple where the husband
was diagnosed with basal cell carcinoma, the
oncologist discussed a favorable prognosis.
In spite of this reassurance, the wife believed
her husband would die from this skin cancer.
This resulted in increased marital discord and
ultimately a couple’s consultation with the on-
cologist. In the initial interview, when asked
about prior experiences with illness and loss,
the wife revealed that her own father had died
tragically of a misdiagnosed malignant mela-
noma. This woman had a catastrophic fear
based on both sensitization to cancer (particu-
larly any related to the skin) and the possibility
of human error by health professionals. Had
the oncologist inquired about prior experi-
ences at the time of diagnosis, earlier interven-
tion would have been facilitated.
It also is useful to inquire about other forms
of loss (e.g., divorce, migration), crisis (e.g.,
lengthy unemployment, rape, natural disaster
such as Hurricane Katrina), and protracted
adversity (e.g., poverty, racism, war, political
oppression). These experiences can provide
transferable sources of resilience and effective
coping skills in the face of a serious health
problem (Walsh, 2006).
Illness Type and Time Phase Issues
Whereas a family may have certain standard
ways of coping with any illness, there may be
critical differences in its styles and success in
adaptation to different “types” of diseases. In
a social work assessment, it is important to
track prior family illnesses for areas of per-
ceived competence, failures, or inexperience.
Inquiry about experiences with different types
of illness (e.g., life-threatening versus nonlife-
threatening) may fi nd, for instance, that a fam-
ily dealt successfully with nonlife-threatening
illnesses but reeled under the weight of meta-
static cancer. Such a family might be well
equipped to deal with less severe conditions
but be particularly vulnerable to the occur-
rence of another life-threatening illness. Some
families may lack familiarity with chronic ill-
ness. The next case consultation highlights the
importance of family history in uncovering
areas of inexperience.
Tracking a family’s coping capabilities in the
crisis, chronic, and terminal phases of previous
chronic illnesses highlights legacies of strength
as well as complications in adaptation related
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328 Health Social Work Practice: A Spectrum of Critical Considerations
to different points over the course of the illness.
One man grew up with a father who was par-
tially disabled with heart disease and witnessed
his parents successfully renegotiate traditional
gender-defi ned roles when his mother went to
work while his father assumed household re-
sponsibilities. This man, who now has heart dis-
ease himself, has a positive legacy about gender
roles from his family of origin that facilitated a
fl exible response to his own illness.
Another family with a member suffering
from chronic kidney failure functioned very
well in handling the practicalities of home di-
alysis. However, in the terminal phase, their
limitations with emotional expression left a
legacy of unresolved grief. Tracking prior ill-
ness experiences in terms of time phases helps
clinicians see both the strengths and vulner-
abilities of a family, which counterbalances
the assignment of dysfunctional labels. Social
workers need to ask specifi cally about posi-
tive family-of-origin experiences with illness
and loss that can be highlighted as family suc-
cesses and used as models to adapt to the cur-
rent situation.
Although many families facing chronic dis-
ease have healthy multigenerational family
patterns of adaptation, any family may falter in
the face of multiple superimposed disease and
nondisease stressors that occur in a relatively
short period of time. With progressive, inca-
pacitating diseases or the concurrence of ill-
nesses in several family members, a pragmatic
approach that focuses on expanded or creative
use of supports and resources outside the fam-
ily is most productive.
Interface of the Illness, Individual,
and Family Development
Addressing the impact of the illness over the
life span provides a powerful way to construct
a normative framework for serious illness. In-
dividual and family life cycle perspectives ad-
dress development over time in discrete phases,
each with expectable challenges to be mastered
sequentially before continuing on to the next
phase. Illness frequently disrupts these norma-
tive challenges as family resources are directed
toward illness management and treatment. To
CASE EXAMPLE
Joe, his wife, Ann, and their three teenage
children presented for a family evaluation
10 months after Joe’s diagnosis with severe
asthma. Joe, age 44, had been employed for
many years as a spray painter. Apparently,
exposure to a new chemical triggered the
onset of asthmatic attacks that necessitated
hospitalization and occupational disability.
Although somewhat improved, he
continued to have persistent, moderately
severe respiratory symptoms. Initially, his
physicians had predicted that improvement
would occur but remained noncommittal
as to the level of chronicity to be expected.
Continued breathing diffi culties contributed
to increased symptoms of depression,
uncharacteristic temperamental outbursts,
alcohol abuse, family discord, and fi nally
admission to an alcohol detoxifi cation
unit. In the initial assessment, after
Joe’s discharge to outpatient psychiatric
treatment, the social worker inquired as to
the family’s prior illness experience. This
was the nuclear family’s fi rst encounter
with chronic illness, and their families of
origin had limited experience. Ann’s father
had died 7 years earlier of a sudden and
unexpected heart attack. Joe’s brother had
died in an accidental drowning. Neither
had experience with disease as an ongoing
process. Joe had assumed that improvement
meant “cure.” In addition, Joe had a history
of alcoholism that had been in remission for
20 years. Illness for both Joe and his wife
had meant either death or recovery. The
physician/family system was not attuned to
the hidden risks for this family coping with
the transition from the crisis to the chronic
phase of his asthma, the juncture where the
permanency of the disease needed to be
addressed.
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Families, Health, and Illness 329
place the unfolding of chronic disease into a
developmental context, it is crucial to under-
stand the intertwining of three evolutionary
threads: illness, individual, and family devel-
opment (see Rolland, 1987a, 1994a, 2010).
Individual and Family Development
It is essential to consider the interaction of in-
dividual and family development. A chronic
disorder infl uences the development of the af-
fected person and various family members in
distinct ways depending on a number of fac-
tors, including age of onset of the illness, the
core commitments in the affected person and
each family member’s life at that time, and the
phase of the family life cycle. Life cycle mod-
els can facilitate thinking proactively about the
timing and nature of strains on the family unit
and each member over the course of a major
health problem.
Life cycle and life structure are central
concepts for both family and individual devel-
opment. The term life cycle refers to a basic se-
quence and unfolding of the life course within
which individual, family, or illness uniquely
occurs. Life structure refers to the core ele-
ments (e.g., work, child rearing, caregiving) of
an individual’s or family’s life at any phase of
the life cycle.
Illness, individual, and family development
have in common the notion of phases, each
with its own developmental challenges. Mc-
Goldrick and colleagues (2010) have divided
the family life cycle into six phases, where
marker events (e.g., marriage, birth of fi rst
child, adolescence, children leaving home)
herald the transition from one phase to the
next. The family life cycle also can be viewed
as oscillating between phases where family
developmental tasks require intense bonding
or relatively higher cohesion (e.g., early child
rearing) versus phases during which time the
external family boundary is loosened, such
as families with adolescents, which often
emphasize personal identity and autonomy
(Combrinck-Graham, 1985). Levinson (1986),
in his description of individual adult develop-
ment, describes how individuals’ and families’
life structures can move between periods of
life structure transition and building/stability.
Transition periods are sometimes the most
vulnerable because previous individual, fam-
ily, and illness life structures are reappraised
in light of new developmental tasks that may
require major discontinuous change rather
than minor alterations. The primary goal of a
life structure building/maintaining period is to
form a life structure and enrich life within it
based on the key choices an individual/family
made during the preceding transition period.
These unifying concepts provide a base to
think about the fi t among illness, individual,
and family development. Each phase in these
three kinds of development pose tasks and
challenges that move through periods of being
more or less in sync with each other. The model
distinguishes: (a) the phases of the family life
cycle, particularly the kind and degree of cohe-
sion required; (b) the alternation of transition
and life structure building/maintaining periods
in family and individual development; and (c)
periods of higher and lower psychosocial de-
mands, requiring relatively greater and lesser
degrees of family cohesion over the course of
a chronic condition.
Generally, illness and disability tend to
push individual and family developmental
processes toward transition and increased co-
hesion. Analogous to the addition of a new
family member, illness onset sets in motion an
inside-the-family-focused process of socializa-
tion to illness. Symptoms, loss of function, the
demands of shifting or acquiring new illness-
related roles, and the fears of further disability
or death all require a family to focus inward.
The need for family cohesion varies enor-
mously with different illness types and phases.
The tendency for a disease to pull a family
inward increases with the level of disability
or risk of progression and death. Progressive
diseases over time inherently require a greater
cohesion than constant course illnesses. The
ongoing addition of new demands as an illness
progresses keeps a family’s energy focused
inward, often impeding or halting the natural
life cycle evolution of other members. After an
initial period of adaptation, a constant-course
disease (without severe disability) permits a
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330 Health Social Work Practice: A Spectrum of Critical Considerations
family to get back on track developmentally.
Relapsing illnesses alternate between periods
of drawing a family inward and periods of re-
lease from immediate demands of disease. But
the on-call nature of many such illnesses keeps
part of the family focus inward despite asymp-
tomatic periods, hindering the natural fl ow be-
tween phases of development.
With major health conditions, previous
norms concerning family organization may
need greater fl exibility. Enmeshment with
blurred generational boundaries is touted as the
hallmark of family dysfunction. Yet the very
real demands on older children and adoles-
cents to assume adult functions in the interest
of family survival must be distinguished from
rigid pathological descriptions of “parentifi ed”
children. For instance, when a parent develops
a serious disorder during a child-rearing phase
of development, a family’s ability to stay on
course is most severely taxed. The impact is
twofold. A new family burden is added as a
parent is “lost.” To meet simultaneous child-
rearing and caregiving needs, an older child
or grandparent may need to assume parental
responsibilities. These forms of family adapta-
tion are appropriate, if structural realignments
are fl exible, shared, and sensitive to competing
age-related developmental needs. Frequently,
however, family or cultural dictates put chil-
dren, especially girls, in highly responsible
roles before it is developmentally appropriate
to do so. Social workers can help families set
up culturally appropriate structures that do not
overburden any one family member by naming
expectations and helping families to delegate
tasks across a number of participating family
members. Social workers also can aid families
in enlisting neighbors, community members,
and religious congregations in aiding them
during particularly challenging times.
In clinical assessment, two basic questions
arise: “What is the fi t between the psychoso-
cial demands of a condition and family and
individual life structures and developmental
tasks at a particular point in the life cycle?”
and “How will this fi t change as the course of
the illness unfolds in relation to the family’s
and each member’s development?”
From a systems viewpoint, at the time of
diagnosis, it is important to know the phase of
the family life cycle and the stage of individual
development of all family members, not just
the ill member. Chronic disease in one family
member can profoundly affect developmental
goals of another member. For instance, an in-
fant disability can be a serious roadblock to
parents’ preconceived ideas about competent
child rearing, or a life-threatening illness in a
young married adult can interfere with the well
spouse’s readiness to become a parent. Family
members also frequently do not adapt equally
to chronic illness. Each member’s ability to
adapt, and the rate at which he or she does
so, is related to his or her own developmen-
tal phase and role in the family. When family
members are in tune with each other’s devel-
opmental processes, and promote fl exibility
and alternative means to satisfy developmen-
tal needs, successful long-term adaptation is
maximized.
By adopting a longitudinal developmental
perspective, a clinician will stay attuned to
future developmental transitions. Imagine a
family in which the father (a carpenter) and
primary fi nancial provider has a heart attack.
Dad’s rehabilitation is uneventful and includes
appropriate lifestyle modifi cations and a return
to work. The oldest son, age 15, seems rela-
tively unaffected. Two years later, his father
experiences a second heart attack, leaving him
with a disability. His son, now 17, has dreams
of going away to college. The specter of fi –
nancial hardship and the perceived need for a
“man in the family” creates a serious dilemma
of choice for the son and the family, which
surfaces with the boy’s precipitously declining
academic performance and alcohol abuse. In
this case, there is a fundamental clash between
developmental issues of individuation and
the ongoing demands of a progressive, life-
threatening type of heart disease on the fam-
ily. Further, there is a resurgence of fears of
loss fueled not only by the recurrence but also
its timing with a major developmental transi-
tion for the oldest son. The son may fear that
if he were to move away, he might never see
his father alive again. This case demonstrates
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Families, Health, and Illness 331
the potential clash between simultaneous tran-
sition periods—the illness transition to a more
disabling, progressive, and life-threatening
course; the adolescent son’s transition to early
adulthood; and the family’s transition from the
“living with teenagers” to “launching young
adults” phase. At the time of initial diagno-
sis, inquiry about anticipated major transitions
over the next three to fi ve years and discussing
them in relation to the specifi c kind of heart
disease and its related uncertainties would help
avert a future crisis.
The timing of chronic illness in the life
cycle can be normative (e.g., expectable in
relation to chronological and social time) or
nonnormative (e.g., “off-time”). Coping with
chronic illness and death are considered nor-
mally anticipated challenges in late adult-
hood, whereas their occurrence earlier is out
of phase and developmentally more disruptive
(Neugarten, 1976). For instance, chronic dis-
eases that occur during the child-rearing pe-
riod can be most challenging because of their
potential impact on family fi nancial and child-
rearing responsibilities. The actual impact will
depend on the type of illness and pre-illness
family roles. Families governed by fl exible
gender-infl uenced rules about who is the fi –
nancial provider and caregiver of children will
tend to have an easier adjustment.
When a parent develops a major health con-
dition during the child-rearing phases of the
life cycle, a family’s ability to stay on course
is severely taxed. For more serious and debili-
tating diseases, such as stroke, the impact of
the illness is like the addition of a new infant
member, one with “special needs” who will
compete with those of the other children for
potentially scarce family resources that are di-
minished by parental loss. Moreover, in two-
parent families, the well parent must juggle
child-rearing demands with caregiving of a
spouse (Rolland, 1994b).
With chronic disorders, an overarching fam-
ily goal is to deal with the developmental de-
mands of the illness without family members
sacrifi cing their own or the family’s develop-
ment as a system over time. It is important to
determine whose life plans were or might be
canceled, postponed, or altered and when plans
put on hold and future developmental issues
will be addressed. In this way, clinicians can
anticipate developmental nodal points related
to “autonomy within” versus “subjugation to”
the condition. Family members can be helped
to strike a healthier balance with life plans that
resolve feelings of guilt and hopelessness and
fi nd family and external resources to enhance
freedom, both to pursue personal goals and to
provide needed care for the ill member.
HEALTH/ILLNESS
BELIEF SYSTEM
When illness strikes, a primary developmen-
tal challenge for families is to create mean-
ing for the illness experience that promotes a
sense of mastery and competency (Kleinman,
1988; Rolland, 1987b, 1994a, 1997; Wright
& Bell, 2009). Because serious illness often
is experienced as a betrayal of fundamental
trust in our bodies and belief in our invul-
nerability (Kleinman, 1988), creating an em-
powering narrative can be a formidable task.
Family health beliefs help us grapple with the
existential dilemmas of our fear of death, ten-
dency to want to sustain our denial of death,
and attempts to reassert control when suffer-
ing and loss occur. They serve as a cognitive
map guiding decisions and action and provide
a way to approach new and ambiguous situa-
tions for coherence in family life, facilitating
continuity between past, present, and future
(Antonovsky & Sourani, 1988; Reiss, 1981).
Inquiry into and curiosity about family beliefs
is perhaps the most powerful foundation stone
of collaboration between families and health
professionals (Rolland, 1998; Wright & Bell,
2009). There is growing research evidence that
family members’ distress about a disease, such
as cancer, can be associated more closely to
perceived risk or appraisals of seriousness than
objective characteristics of the disease (Franks
& Roesch, 2006; Hurley, Miller, Rubin, &
Weinberg, 2006; Thompson & Kyle, 2000).
In the initial crisis phase, it is essential for
clinicians to inquire about key family beliefs
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332 Health Social Work Practice: A Spectrum of Critical Considerations
that shape the family’s illness narrative and
coping strategies. This inquiry includes track-
ing: (a) beliefs about normality and mind-body
relationship, control, and mastery; (b) assump-
tions about what caused an illness and what
will infl uence it’s course and outcome; (c)
meanings attached by a family, ethnic group,
religion, or the wider culture to symptoms
(e.g., chronic pain) (J. Griffi th & Griffi th,
1994; McGoldrick, Pearce, & Garcia-Preto,
2005), types of illnesses (e.g., life threaten-
ing), or specifi c diseases (e.g., AIDS) (Sontag,
2001) that have shaped a family’s health be-
liefs; and (e) anticipated nodal points in ill-
ness, individual, and family development when
health beliefs are strained or need to shift. A
clinician also should assess the congruence of
health beliefs within the family and its various
subsystems (e.g., spouse, parental, extended
family) as well as between the family and the
health-care system and wider culture.
Beliefs About Normality
Family beliefs about what is normal or abnor-
mal, and the importance members place on
conformity and excellence in relation to the
average family, have far-reaching implications
for adaptation to chronic disorders. Family
values that allow having a “problem” without
self-denigration have a distinct advantage, en-
abling one to seek outside help and yet main-
tain a positive identity in the face of chronic
conditions. Families that defi ne help seeking
as weak and shameful undercut this kind of
resilience. Essentially, with chronic disorders
in which problems are to be expected and the
use of professionals and outside resources is
necessary, a belief that pathologizes this nor-
mative process can be seen as adding insult to
injury.
Two excellent questions that can be used
to elicit these beliefs are: “How do you think
other average families would deal with a
similar situation to yours?” and “How would
a healthy family ideally cope with your situ-
ation?” Families with strong beliefs in high
achievement and perfectionism are prone to
apply standards in a situation of illness in
which the kind of control they are accustomed
to is impossible. Particularly with untimely
conditions that occur early in the life cycle,
there are additional pressures to keep up with
normative socially expectable developmental
milestones of age peers or other young cou-
ples. The fact that developmental goals may
take longer to achieve than anticipated or need
revision requires a fl exible belief about what
is normal and healthy. To sustain hope effec-
tively, particularly in situations of long-term
adversity, families need to embrace a fl exible
defi nition of normality.
Mind–Body Relationships
Varied conceptualizations of the mind–body
relationship have been the subject of discourse
and debate for millennia. Traditional mental
health theories and research endeavors have
been pathology based, tending to emphasize
character traits or emotional states that affect
body chemistry adversely. From this perspec-
tive, emotions can be seen to affect the body
negatively, but possible positive infl uences
of healthy attitudes are overlooked. More re-
cently, the public has been drawn increasingly
to popular literature citing the importance of
positive attitudes in healing, emphasizing the
unity of mind and body. This literature de-
scribes healing as a state of being, involving
mind and body, rather than in strictly biomedi-
cal terms where something is done to the body.
Social workers must be particularly mindful
that families may be more familiar with and
open to positive attitudes as a powerful source
of healing.
As social workers assess family beliefs about
illness, it is useful to distinguish beliefs about
the mind as a logical, thinking process that
can determine actions that may help in healing
the body (e.g., seeking medical care, chang-
ing diet or activity patterns) from those of the
mind as a source of thought or energy that can
directly impact body physiology. These beliefs
about mind and spirit often extend beyond
the individual to include family, community,
or a higher spiritual power. Anthropologists
have found tremendous diversity in the role of
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Families, Health, and Illness 333
family, community, God, or nature as a source
of healing. Such beliefs typically are expressed
in the form of rituals (Imber-Black, Roberts, &
Whiting, 2003). In our society, for example, a
family’s religious community often will orga-
nize a prayer service to promote healing for an
ill member. Social workers can inquire about
the role of spirituality in family life (Walsh,
2009), family beliefs regarding healing, and
rituals that are important expressions of those
beliefs. Sometimes important family healing
rituals confl ict with hospital rules, leading
to power struggles that alienate families and
erode a functional collaborative relationship
with the health-care team.
Family’s Sense of Mastery Facing Illness
It is important to determine how a family
defi nes mastery or control in general and in
situations of illness (Taylor, Helgeson, Reed,
& Skokan, 1991; Thompson & Kyle, 2000).
Mastery is similar to the concept of health
locus of control, which indicates beliefs about
infl uence over the course/outcome of an illness
(Lefcourt, 1982). It is useful to distinguish
whether a family’s beliefs are based on the
premise of internal control, external control by
chance, or external control by powerful others.
Families with an internal locus of control be-
lieve they can affect the outcome of a situation.
In illness, such families believe they have di-
rect control of their health and have the power
to recover from illness (Wallston, 2004). An
external orientation entails a belief that out-
comes are not contingent on the individual’s or
family’s behavior. Families that view illness in
terms of chance believe that illness occurs as
a matter of luck and that fate determines re-
covery. Those who see health control as in the
hands of powerful others view health profes-
sionals, God, or sometimes powerful family
members as exerting control over their bodies
and illness course.
Family beliefs about mastery strongly af-
fect each member’s relationship with the ill-
ness and the health-care system, impacting
adherence and preferences about family par-
ticipation in treatment and healing processes.
Families that view a disease’s course/outcome
as a matter of chance tend to establish mar-
ginal relationships with health professionals
largely because their belief system minimizes
the importance of their own or the profession-
al’s impact on a disease process. Families of
lower socioeconomic statuses, especially mi-
norities, also may receive inadequate care or
lack insurance or access, leading to a fatalistic
attitude and lack of engagement with health-
care providers, whom they may not trust to
help. Just as any psychotherapeutic relation-
ship depends on a shared belief system about
what is therapeutic, a workable accommoda-
tion among the patient, family, and health-care
team in terms of these fundamental values is
essential. Families that feel misunderstood by
health professionals often are reacting to a lack
of joining at this basic value level. Too often
their healthy need to participate has been ig-
nored or preempted by a professional needing
unilateral control (Rolland, 1998).
A family may adhere to a different set of
beliefs about control when dealing with physi-
cal illness as opposed to typical day-to-day is-
sues. Therefore, it is important to assess both
a family’s basic beliefs and those about control
for illnesses in general, for chronic and life-
threatening illness, and fi nally for the specifi c
disease facing the family. For instance, regard-
less of the actual severity or prognosis in a par-
ticular case, cancer may be equated with death
or a lack of control because of medical sta-
tistics, cultural myth, or prior family history.
Alternatively, families may have enabling sto-
ries about a member or friend who, in spite of
cancer and a shortened life span, lived a “full”
life centered on effectively prioritizing the
quality of relationships and goals. Clinicians
can highlight these positive narratives to help
families counteract cultural beliefs that focus
exclusively on control of biology as defi ning
success.
The goodness of fi t between family beliefs
about mastery can vary depending on the time
phase of the condition. For some conditions,
the crisis phase involves protracted medical
interventions outside the family’s direct con-
trol. This may be stressful for a family that
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334 Health Social Work Practice: A Spectrum of Critical Considerations
prefers to tackle its own problems without
outside control and “interference.” The pa-
tient’s return home may increase the work-
load but allow members to reassert more fully
their competence and leadership. In contrast,
a family guided more by a preference for ex-
ternal control by experts can expect greater
diffi culty when their family member returns
home. Recognition of such normative differ-
ences in belief about control can guide an ef-
fective psychosocial treatment plan tailored to
each family’s needs and affi rming rather than
disrespecting their core values.
Social workers must be cautious about judg-
ing the relative denial or acceptance of pain-
ful realities. Often people need to do both. The
healthy use of minimization, or selective focus
on the positive, and timely uses of humor should
be distinguished from denial. The skilled social
worker must support both the usefulness of ex-
aggerated hope and the need for treatment to
control the illness or a new complication. There
is greater incentive for a family to confront de-
nial when there is hope that preventive action
or medical treatment can affect the outcome or
when an illness is entering its terminal phase.
Yet to cope with an arduous, uncertain course,
families often need simultaneously to acknowl-
edge the condition while minimizing treatment
risks or the likelihood of a poor outcome.
Family Beliefs About the
Cause of an Illness
When a signifi cant health problem arises, it
is natural to wonder “Why me (or us)?” and
“Why now?” (Roesch & Weiner, 2001; Taylor,
1983). We almost invariably construct an ex-
planation or story that helps organize our
experience. With limits of current medical
knowledge, tremendous uncertainties persist
about the relative importance of myriad fac-
tors, leaving individuals and families to make
idiosyncratic attributions about what caused an
illness. A family’s beliefs about the cause of
an illness should be assessed separately from
its beliefs about what can affect the outcome.
It is important to elicit each family member’s
explanation. Responses generally will refl ect a
combination of medical information and fam-
ily mythology. Beliefs might include punish-
ment for prior misdeeds (e.g., an affair), blame
of a particular family member (“Your drinking
made me sick!”), a sense of injustice (“Why
am I being punished? I have been a good per-
son.”), genetics (e.g., cancer runs on one side
of the family), negligence by the patient (e.g.,
careless driving) or by parents (e.g., sudden in-
fant death syndrome), or simply bad luck.
Highly adaptive family narratives respect
the limits of scientifi c knowledge, affi rm basic
competency, and promote the fl exible use of
multiple biological and psychosocial heal-
ing strategies. In contrast, causal attributions
that invoke blame, shame, or guilt make it ex-
tremely diffi cult for a family to cope and adapt
in a functional way. With a life-threatening ill-
ness, a blamed family member is implicitly, if
not explicitly, held accountable if the patient
dies. Decisions about treatment then become
confounded and fi lled with tension. A husband
who believes his drinking caused his wife’s
coronary and subsequent death may increase
self-destructive drinking because of his pro-
found guilt. A mother who secretly blames
herself for their daughter’s leukemia may be
less able to stop a low-probability experimen-
tal treatment than the husband who sees fur-
ther treatment as causing additional suffering
to their terminally ill child (see Box 13.1).
Belief System Adaptability
Because illnesses vary enormously in their
responsiveness to psychosocial factors, both
families and providers need to make distinc-
tions among beliefs about their overall partici-
pation in a long-term disease process, beliefs
about their ability to control the biological un-
folding of an illness, and the fl exibility with
which they can apply these beliefs. Families’
experience of competence or mastery depends
on their grasp of these distinctions. Optimal
family and provider narratives respect the
limits of scientifi c knowledge, affi rm basic
competency, and promote the fl exible use of
multiple biological and psychosocial healing
strategies.
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Families, Health, and Illness 335
A family’s belief in their participation in
the total illness process can be thought of as
independent from whether a disease is stable,
improving, or in a terminal phase. Sometimes
mastery and the attempt to control biologi-
cal process coincide, as when a family tailors
its behavior to help maintain the health of a
member with cancer in remission. This might
include changes in family roles, communi-
cation, diet, exercise, and balance between
work and recreation. Optimally, when an ill
family member comes out of remission and
as the family enters the terminal phase of the
illness, participation as an expression of mas-
tery is transformed to a successful process of
letting go that eases suffering and allows pal-
liative care to be provided (Lynn, Schuster,
Wilkinson, & Simon, 2007).
Families with fl exible belief systems are
more likely to experience death with a sense
of equanimity rather than profound failure.
The death of a patient whose long, debilitating
illness has heavily burdened others can bring
relief as well as sadness to family members.
Because relief over death goes against soci-
etal conventions, it can trigger massive guilt
reactions that may be expressed through such
symptoms as depression and family confl ict.
Clinicians need to help family members accept
ambivalent feelings they may have about the
death as natural.
Flexibility within both the family and the
health professional system is a key variable
in optimal family functioning. Rather than
linking mastery in a rigid way with biologi-
cal outcome (survival or recovery) as the sole
determinant of success, families can defi ne
control in a more “holistic” sense with in-
volvement and participation in the overall
process as the main criteria defi ning success.
This is analogous to the distinction between
curing “the disease” and “healing the system.”
Healing the system may infl uence the course
and outcome, but a positive disease outcome
is not necessary for a family to feel successful.
This fl exible view of mastery permits the qual-
ity of relations within the family or between
the family and health professionals to become
Box 13.1 Family Beliefs About
Cause of Illness
Lucy and Tom G., a young couple, have a
daughter, Susan, age 5, who is terminally
ill with leukemia. The pediatric oncologist
offered the parents the choice between
an experimental treatment with a low
probability of success or halting treatment.
Tom’s position was “Let’s stop; enough is
enough.” Lucy, however, felt, “We must
continue; we can’t let her die.” The couple
could not reach an agreement, and the
physician was immobilized. He requested a
social work consultation for the couple.
When the consultant asked, “What is
your explanation of how your daughter got
leukemia?” the critical story emerged. Tom
basically saw it as bad luck. Lucy, however,
had a very different belief. During her
pregnancy with Susan, Lucy’s father had a
heart attack and died several months later
from a second episode. Lucy experienced this
as a time of great stress and grief, which she
felt adversely affected Susan’s intrauterine
life. After Susan’s birth by normal delivery,
Lucy was still mourning the loss of her father
and felt that this affected the quality of her
bonding with Susan and led to a hidden
depression in her infant. Further, Lucy had
read research linking depression with a
lowering of the effectiveness of the immune
system, which could, in turn, decrease normal
surveillance and clearing of cancer cells from
the body. She believed this combination of
factors caused her child’s cancer and that if
she had been a more competent mother, this
never would have happened. Lucy said she
had never told this story to anyone (including
her husband), because no one had ever asked,
and she was very ashamed. She had hoped
for a cure, so that the whole issue could
be resolved. She could not accept stopping
treatment because, to her, it meant that
Susan’s death then would be her fault.
JWBT514_ch13.indd 335JWBT514_ch13.indd 335 9/21/11 7:43 PM9/21/11 7:43 PM
336 Health Social Work Practice: A Spectrum of Critical Considerations
more central to criteria of success. The health
provider’s competence becomes valued from
both a technical and a caregiving perspective
not solely linked to the biological course.
Ethnic, Spiritual, and Cultural Beliefs
Ethnicity, race, and spiritual beliefs strongly
infl uence family beliefs concerning health
and illness (McGoldrick et al., 2005; Rolland,
2006b; Walsh, 2009). Signifi cant ethnic dif-
ferences regarding health beliefs typically
emerge at the time of a major health crisis.
Health professionals need to be mindful of
the belief systems of various other ethnic, ra-
cial, and religious groups in their community,
particularly as these translate into behavioral
patterns that differ from their own. Cultural
norms vary in such areas as the defi nition of
the appropriate “sick role” for the patient,
the kind and degree of open communication
about the disease, who should be included in
the illness caregiving system (e.g., extended
family, friends, professionals), who is the
primary caretaker (almost always the wife,
mother, daughter, or daughter-in-law), and the
kind of rituals viewed as normative at differ-
ent stages of an illness (e.g., hospital bedside
vigils, healing, and funeral rituals). This is es-
pecially true for a number of minority groups
(e.g., African American, Asian American, and
Hispanic American) who experience discrimi-
nation or marginalization from the prevailing
White American culture. Illness provides an
opportunity to encourage role fl exibility and
shift from defi ning one female member as the
caregiver to a collaborative caregiving team
that includes male and female siblings/adult
children.
Clinicians need to be mindful of cultural
differences between themselves and the pa-
tient and family as a necessary step to forging
a workable alliance that can endure a long-
term illness (Seaburn et al., 1996). Disregard-
ing these issues can lead families to distance
themselves from health providers and avail-
able community resources, which is a major
cause of adherence problems and treatment
failure. Accepting that the patient retains fi nal
responsibility for decisions about his body
requires a strong commitment to the core
social work value of self-determination.
Fit Among Health-Care Provider,
Health System, and Family Beliefs
It is a common but unfortunate error to regard
“the family” as a monolithic unit that feels,
thinks, believes, and behaves as an undiffer-
entiated whole. Social workers should inquire
both about the level of agreement and toler-
ance for differences among family members’
beliefs and between the family and the health-
care system. Is the family rule “We must agree
on all/some values,” or are diversity and dif-
ferent viewpoints acceptable? To what degree
does the family feel the need to stay in sync
with prevailing cultural or societal beliefs or
with family tradition?
Family beliefs that balance the need for
consensus with diversity and innovation are
optimal and maximize permissible options. If
consensus is the rule, then individual differen-
tiation implies disloyalty and deviance. If the
guiding principle is “We can hold different
viewpoints,” diversity is allowed. This is adap-
tive because it facilitates the use of novel and
creative forms of problem solving that may be
needed in a situation of protracted adversity,
such as serious illness. Social workers can
facilitate open communication and effective
confl ict resolution when members differ on
major health-care/treatment decisions.
The same questions are relevant to the fi t
between the family, social worker, and health-
care team. What are their attitudes about their
own and the family’s ability to infl uence the
course/outcome of the disease? How does the
health-care team see the balance between its
own participation in the treatment process
and the family’s involvement? If basic differ-
ences in beliefs about control exist, how can
these differences be reconciled? These ques-
tions will inform the types of interventions
social workers employ to help families facing
chronic and terminal illness.
It is common for differences in beliefs or
attitudes to erupt during any major life cycle
JWBT514_ch13.indd 336JWBT514_ch13.indd 336 9/21/11 7:43 PM9/21/11 7:43 PM
Families, Health, and Illness 337
or illness transition. For instance, in situations
of severe disability or terminal illness, one
member may want the patient to return home,
whereas another prefers long-term hospital-
ization or transfer to an extended care facility.
Because the chief task of patient caregiving
usually is assigned to the wife/mother, she is
the one most apt to bear the chief burdens in
this regard. A family able to anticipate the col-
lision of gender-based beliefs about caregiving
with the potential overwhelming demands of
home-based care for a dying family member
and fl exibly modify its rules would avert the
risk of family caregiver overload, resentment,
and deteriorating family relationships.
The murky boundary between the chronic
and the terminal phases highlights the potential
for professionals’ beliefs to collide with those
of the family. Physicians can feel bound to a
technological imperative that requires them
to exhaust all possibilities at their disposal,
regardless of the odds of success. Families
may not know how to interpret continued life-
saving efforts, assuming real hope where virtu-
ally none exists. Health-care professionals and
institutions can collude in a pervasive societal
wish to deny death as a natural process truly
beyond technological control (Becker, 1973).
Endless treatment can represent the medical
team’s inability to separate a general value
placed on controlling diseases from their be-
liefs about participation (separate from cure)
in a patient’s total care.
CHALLENGES IN
IMPLEMENTATION OF
FAMILY-BASED RESEARCH
Interventions for families facing medical ill-
ness currently are being implemented in a
number of settings, including hospitals, com-
munity health and mental health clinics, hos-
pices, and wellness organizations (Campbell,
2003). It is important that social workers base
the development of interventions on the best
available research knowledge. A major chal-
lenge for family intervention research is the
need to further develop research methods and
protocols that demonstrate the relationship
of family system dynamics to health status,
health-care outcomes, and cost containment
(Carr & Springer, 2010; Law & Crane, 2007;
Weihs et al., 2002).
Despite advances in evidence-based
knowledge, signifi cant challenges persist for
conducting such systematic and rigorous inter-
vention research (Kazak, 2002). Often imple-
mentation of family-centered biopsychosocial
research is more diffi cult in health-care set-
tings (e.g., hospitals) focused primarily on the
treatment and management of the individual
with the disease. Although psychosocial care
may improve family functioning, this outcome
might not be the established goal of medical
settings or health insurance corporations, both
of which are concerned with biomedical cure
and controlling costs. Family-based interven-
tions, such as multifamily discussion groups
(McFarlane, 2002) and collaborative family-
oriented primary and tertiary care (McDaniel
et al., 2005; Weihs et al., 2002), have proven
effective in health-care settings to (a) promote
patient and family coping and adaptation,
(b) reduce medical and psychiatric morbid-
ity for all family members, (c) contain overall
health-care costs, and (d) facilitate collabora-
tion between families and health-care teams
to increase treatment adherence. Despite these
data, these interventions are rarely offered as
part of routine care.
In the era of managed health care, evi-
dence-based practice highlighting positive
outcomes is essential in social work’s effort
to maintain a clear and integrated presence
in hospitals and medical settings. By illus-
trating how family-based interventions fa-
cilitate illness management, ease the burden
on health-care teams, and are cost effective,
social workers can join with other health-
care professionals to advocate for collabora-
tive models of health care that include such
interventions as part of standard practice.
Social workers can carve a unique niche for
themselves in medical settings by working
collaboratively to fi ll these methodological
and clinical gaps and by conducting sound
intervention research.
JWBT514_ch13.indd 337JWBT514_ch13.indd 337 9/21/11 7:43 PM9/21/11 7:43 PM
338 Health Social Work Practice: A Spectrum of Critical Considerations
CONCLUSION
The most resilient families are able to harness
the experience of facing the risks and burdens
of chronic illness or disability to improve the
quality of life. Families can achieve a healthy
balance between accepting limits and promot-
ing autonomy. For conditions with long-range
risks, families can maintain mastery in the face
of uncertainty by enhancing their capacities to
acknowledge the possibility of loss, sustain
hope, and build fl exibility into both the fami-
ly’s and each member’s life cycle planning that
conserves and adjusts major goals and helps
circumvent the forces of uncertainty.
A serious illness, such as cancer, or a brush
with death, provides an opportunity to confront
catastrophic fears about loss. This confrontation
can lead family members to develop a better
appreciation and perspective on life that results
in clearer priorities and closer relationships.
Seizing opportunities can replace procrastina-
tion for the “right moment” or passive waiting
for the dreaded moment. By emphasizing life’s
fragility and preciousness, major health condi-
tions provide families with an opportunity to
heal unresolved issues and develop more im-
mediate, caring relationships. For diseases in
a more advanced stage, clinicians should help
families emphasize quality of life by defi ning
goals that are attainable more immediately and
that enrich their everyday lives.
As the new era of genetics unfolds, families
and clinicians are facing unprecedented com-
plex clinical and ethical challenges (Miller et
al., 2006). Families increasingly will be able
to choose genetically informed knowledge
of their future health risks or fate. Some key
questions include:
• Which individuals and families will benefi t
by genetic risk screening and knowledge of
their health risks or fate?
• How can we best help family members
reach decisions about whether to pursue
predictive testing?
• Who are the relevant family members to in-
clude in these decisions—spouses or part-
ners? Extended family?
• Our societal fi xation on “the perfect healthy
body” could meld seamlessly with technol-
ogy and eugenics, forcing families living
with disability, illness, or genetic risk to
further hide their suffering in order to dem-
onstrate the value of their lives and avoid
increased stigmatization (Rolland, 1997,
1999).
Clinicians also need to consider their own ex-
periences and feelings about illness and loss
(McDaniel, Hepworth, & Doherty, 1997).
Awareness and ease with our own multigenera-
tional and family history with illness and loss,
our health beliefs, and our current developmen-
tal phase will enhance our ability to work effec-
tively with families facing serious illness.
Living well with the strains and uncertainties
of illness can be a monumental challenge. The
Family Systems–Illness model offers a way to
address this challenge and make the inevitable
strains more manageable. Attending to the psy-
chosocial demands of different kinds of con-
ditions over time within a multigenerational,
developmental, and belief system context can
provide a strength-based framework—a com-
mon language that facilitates collaborative,
creative problem solving and quality of life for
families facing illness, disability, and loss.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 13.1
You are called by the head nurse for the oncol-
ogy inpatient unit to intervene with a patient
and his family who are disrupting the unit.
The patient is a 34-year-old African Ameri-
can male who has been diagnosed with stage
IV prostate cancer. The patient’s mother has
been very emotional about his condition and
insists on staying in her son’s room. This is in
confl ict with the rules of the oncology unit.
The patient, Keith, has been married for
6 months to a White woman named Lisa who
is quite distressed by Keith’s condition but es-
tranged from her own family. An unpleasant
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Families, Health, and Illness 339
triangular confl ict has existed for the couple
because of Keith’s strong relationship to his
family of origin, particularly his mother, which
is problematic for his spouse. On admission,
his mother began a 24-hour vigil by her son’s
hospital bed. Lisa greatly resents her mother-
in-law’s seemingly intrusive and smothering
behavior. Keith’s mother is critical of what
she perceives as Lisa’s emotional coldness.
Keith feels caught between his mother and
wife and complains of anxiety and fatigue.
1. Thinking in terms of different cultural tra-
ditions of the family members, including
your own, how would you react to this
case? Thinking systemically, how would
you approach a consultation with the pa-
tient and family?
2. Thinking in terms of the intersection of
three distinct belief systems—your work
setting (hospital), yourself as a social
worker, and your personal cultural/ethnic/
family values—how might these affect your
strategy in this case? What biases might in-
terfere with your effectiveness? How could
you avoid taking sides?
Learning Exercise 13.2
Mrs. L. tells you that she is concerned that
her daughter Janice, age 5, has been compul-
sively masturbating for the past 3 months and
that it is an indication of sexual abuse. When
the child assessment reveals no evidence of
abuse, you inquire about other recent stress-
ful events in the family. Only at that point
does the mother reveal that her husband had
a subtotal gastrectomy 9 months ago because
of stomach cancer and that 3 months ago he
had been rehospitalized for further tests that
proved inconclusive. When Mrs. L. is asked
what the children have been told, she re-
ports that, after her husband’s surgery, they
had told the children only that “Daddy had a
tummyache, so the doctors removed Daddy’s
stomach so he’d feel better.” Mrs. L. reveals
that she herself worries constantly about her
husband’s condition but that he will not come
in to see the doctor and will not discuss his
problems. She states that, after the surgery,
“He was adamant that he did not want ever to
talk about it. He went back to work almost im-
mediately and insisted that everything is fi ne.”
Asked if this medical crisis had any impact
on the children, especially Janice, she replies,
“Well, she doesn’t tell me about any worries,
but now that you ask, at dinner every night,
when we say grace, Janice prays out loud for
Daddy’s stomach. But no one in the family
comments on this.”
1. Thinking in terms of healthy family
communication in the face of threatened
loss, how would you intervene in this case?
Who would you try to convene, and why?
2. In what ways would you handle commu-
nication with the children differently than
with the couple?
3. How would you view the husband’s per-
sonal decision to minimize his problem and
keep it private in the context of other symp-
tomatic family members?
Learning Exercise 13.3
Mr. and Mrs. Ellis, both in their early 80s, live
alone on a farm in rural Illinois. Mr. Ellis has
been experiencing a progressive dementia,
which was diagnosed by a consulting neurolo-
gist as Alzheimer’s disease. At a recent visit to
her primary care physician, Mrs. Ellis revealed
that Mr. Ellis’s confusion has been worsening
and that he has hit her on occasion, causing se-
rious bruising. The family physician feels the
couple have reached their limits and has sug-
gested a nursing home placement for Mr. Ellis.
The family includes three adult children, Amy,
John, and Jerry. Amy lives 100 miles away and
visits weekly. The two sons live far away and
are married and raising children. Amy agrees
with the family physician and is very worried
about her mother. The sons, however, think
that Amy and her mother are exaggerating
and have accused their mother of “never un-
derstanding our dad.” The family is in a stale-
mate about the current dilemma, and tensions
between the two camps are rising.
JWBT514_ch13.indd 339JWBT514_ch13.indd 339 9/21/11 7:43 PM9/21/11 7:43 PM
340 Health Social Work Practice: A Spectrum of Critical Considerations
1. What might explain the differences in per-
ception about Mr. Ellis’s condition by his
wife and daughter and sons? How might it
affect each family member’s feelings about
placing Mr. Ellis in a nursing home?
2. Would you schedule a family meeting?
How would you decide whether to include
Mr. Ellis? What about John and Jerry, who
are not in town?
3. How might gender norms be a factor in this
case? How might you address them with
this family?
4. How are life cycle issues (e.g., couple in
later life, adult children in child-rearing
phase with aging parents) pertinent, and
how would you make them part of the con-
sultative process?
5. What do you see as the choices for this fam-
ily? How would you explore them in a col-
laborative manner?
APPENDIX 13.1
CONSTRUCTING A FAMILY
GENOGRAM
Genograms provide graphic representations
of family structure and patterns over several
generations that offer social workers a quick
sense of a family’s strengths and vulnerabili-
ties in relation to the current health situation
and places present issues in the context of mul-
tigenerational family patterns. Clarifi cation of
complex family patterns can be used to gener-
ate hypotheses about the evolution of current
issues and to develop intervention strategies.
Genograms provide a useful clinical tool to
frame certain family challenges as developing
over generations and, in complex family con-
texts, minimizing blame, and helping families
regain a sense of control as they move forward.
Social workers can use a genogram in their
practice setting to elicit key family narratives,
highlighting important family and community
members, patterns of illness and coping, and re-
lational ties. McGoldrick et al. (2008) provide
a standardized format for constructing a family
genogram that includes (a) mapping the family
structure, (b) recording information about the
family, and (c) describing family relationships.
The basic family structural map is a pictorial
representation of nuclear and extended family
members and signifi cant nonfamily people or
organizations usually encompassing three gen-
erations. This structural map is fl eshed out by
adding demographic information, functioning,
and critical events. Key demographic data in-
clude ages, dates of birth and death, occupa-
tion, education, ethnic background, religion,
and geographic location of key family mem-
bers who may be involved in caregiving.
Usually a family fi nds the process of shar-
ing its history a useful way to communicate
important family values, and sometimes it is
an easier fi rst step than discussing emotionally
charged problems. Families typically enjoy
constructing a genogram (some may even ask
for a copy to take home) and approach it ea-
gerly, giving the social worker clues as to the
family’s capacity for and interest in collabora-
tion.
Social workers can use genograms cre-
atively, depending on their practice setting and
the family’s presenting problem. For example,
in health-care settings, the genogram can be
targeted toward tracking prior family illness
experiences and patterns of response to high-
light the particular strengths and challenges
for the family in confronting a current diag-
nosis. The genogram promotes continuity and
comprehensiveness of care by supplying a ver-
satile, succinct clinical summary that can be
used to quickly familiarize other consultants
and health-care providers with a case.
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14
Human Sexual Health
LES GALLO-SILVER AND DAVID S. BIMBI
Sexuality and physical intimacy contribute
to every individual’s quality of life. However,
many people fi nd these aspects of life diffi –
cult to discuss with health-care professionals,
particularly those who may feel stigmatized
by their sexual identity (e.g., lesbian, gay, bi-
sexual, and transgender [LGBT] people; peo-
ple who engage in atypical sexual behaviors).
Understanding the development of humans as
sexual beings, details of the human sexual re-
sponse, and changes and challenges presented
by medical illnesses and traumatic injuries can
help social workers in health-care settings feel
more comfortable and confi dent when address-
ing sexuality with patients and their partners.
Often the social worker is the only member of
the health-care team who is willing and able
to address issues of sexuality and physical in-
timacy in the context of communication, con-
nection, and healing (Hazan & Shaver, 1987;
McCabe, 1994; Schover, 2000). It is crucial for
health social workers to help patients preserve
this important part of life in the face of injury
or illness. This chapter provides a foundation
of basic information about human sexuality and
the impact of illness or injury.
Many words describe various aspects of
sexuality and physical intimacy. For the pur-
poses of this chapter, sexuality refers to the
desire to have sexual contact and intercourse
and the body’s responses to sexual stimulation;
physical intimacy refers to physical acts of af-
fection, comfort, and support. Sensuality refers
to types of stimulation that are pleasurable but
are not necessarily sexual.
Chapter Objectives
• Introduce social workers to a perspective
that focuses on psychosexual developments
in the context of verbal and nonverbal com-
munication and interpersonal relationships.
• Guide social workers in strategies to become
comfortable addressing sexual issues and ex-
ploring sexual content with patients.
• Guide social workers through an assess-
ment that includes the questions needed to
understand life, behavior, sexual relation-
ships, and activities appropriate to health
social work settings.
• Provide an understanding of the human sex-
ual response, and identify areas of preserved
sexual functioning in people with medical
illness or injury in order to address issues of
disenfranchisement (see Box 14.1).
• Introduce social workers to sexual rehabili-
tation counseling techniques that focus on
Box 14.1 Institutional Obstacles to
Physical Intimacy
Health facilities and related environments
that assist the medically ill or injured often
have policies and procedures that present
obstacles to physical intimacy. These
policies and procedures refl ect a lack of
basic knowledge about human sexuality and
an avoidance of sexual issues. An example
is rules that discourage the partners of adult
patients from sleeping or resting in bed with
them. The same institution may consider it
routine for parents to share the beds of their
pediatric patients. This incongruity is most
apparent in cancer treatment centers where
both the adult and pediatric patients receive
chemotherapy and may have a weakened
immune system yet face disparate policies
for overnight visitation and bed sharing.
ch14.indd 343ch14.indd 343 9/22/11 5:24 PM9/22/11 5:24 PM
344 Health Social Work Practice: A Spectrum of Critical Considerations
diffi culties in sexual functioning and recov-
ering functioning or creatively accommo-
dating for the impairment.
• Introduce social workers to concerns unique
to LGBT people.
• Introduce social workers to cultural and
faith-based issues that may impact sexual
rehabilitation.
• Introduce social workers to macrolevel is-
sues of creating sex-positive care environ-
ments, and encourage social workers to
learn how to provide sex-positive education,
advocacy, and leadership in both inpatient
and outpatient settings.
DEMYSTIFYING HUMAN
SEXUAL DEVELOPMENT
Social workers are obligated by the National
Association of Social Workers Code of Ethics
to explore issues of suicidal thinking, domestic
violence, and substance abuse. This explora-
tion might be diffi cult for some, but few social
workers would argue that they are not important
to social work practice. Sexuality and physical
intimacy, as healthy and potentially healing
aspects of the quality of life, require the same
professional attention from social workers.
The natural biological sexual capabilities of
humans are evident throughout the life cycle,
even at an early age, before the concept of
sexual desire develops or intercourse occurs.
For instance, infant boys may experience erec-
tions and infant girls may become lubricated
(Horner, 2004; Kelly & Hockenberg-Eaton,
1999; Ryan, 2000; Walker & Casale, 1997).
From a very young age, children may ex-
plore their bodies, including their genitals, be-
cause of the pleasurable sensation it provides
(Kaplan, 1974; Zoldbrod, 2003).
Early Theories of Sexual Development
Freud’s pleasure principle, introducing the
concept of libido, has infl uenced many social
workers’ professional thoughts about sexual
development (Freud, 1922). Libido is a concept
that includes sexual desire, fantasy, and the initial
sensations of being sexually stimulated. Freud
believed that libido was concerned with pleasure
seeking to relieve sexual tension. He presented
a theory that seems devoid of many interper-
sonal processes, such as love seeking, comfort,
and receiving pleasure from another person. It is
thus incongruent with social work’s philosophy
of preserving and enhancing the quality of life.
An unfortunate consequence of viewing sexual
feelings primarily as a way to release tension is
that issues of sexuality and physical intimacy
are considered to be outside of a person’s day-
to-day functioning and thus, by defi nition, less
important than activities such as going to work
or school or caring for children.
Erickson’s (1968) work on the formation
of a person’s identity from childhood to adult-
hood better represents sexuality and physical
intimacy as aspects of the human experience
by which people connect and communicate
their thoughts and feelings. At each develop-
mental stage, people express their wish to be
close to others through displays of physical
affection, comforting, and, at times, sexual de-
sire (Erickson, 1968).
The gap between Freud’s and Erickson’s
perspectives arguably may be bridged by the
work of W. Ronald D. Fairbairn (1946), who
suggested that libido was not concerned simply
with seeking release but rather with an object
or person with whom to connect intimately.
The need to connect physically is rooted in the
infant–parent relationship, which is based partly
on touch and is each human’s fi rst experience of
physical connection. Considering sexuality as
relationship-based may lend it deeper meaning
than if it is considered a purely pleasure-seeking
activity. This idea demystifi es human sexuality
by placing it in an interpersonal context rather
than one that is purely biological. This concep-
tualization is the basis of Zoldbrod’s Milestones
in Sexual Development (1998, 2003).
Zoldbrod’s Milestones in
Sexual Development
Zoldbrod’s Milestones in Sexual Develop-
ment begins with birth and progresses to the
parent’s initial bonding experience with the
ch14.indd 344ch14.indd 344 9/22/11 5:24 PM9/22/11 5:24 PM
Human Sexual Health 345
infant. Parental love is communicated through
touch—the foundation of empathy as the par-
ent searches for the right response to an infant’s
cry. As the baby’s cry is interpreted correctly,
the baby develops a sense of trust in the world
and a belief that his needs will be met, which
allows the infant to be soothed by the parent.
Because parents must help their infants with all
basic needs, such as bathing and feeding, a par-
ent’s attitude toward her baby’s body becomes
refl ected in the baby’s own attitude about his
body and is therefore the foundation of body
image. Body image is ultimately refi ned to in-
clude the establishment of gender identity.
As the growing child becomes more certain
of his gender identity, he develops self-esteem
and feels accepted. Regardless of later sexual
and gender identity, children with atypical
gender expression may encounter overt hostil-
ity, condemnation, and withdrawal of affection
by their parents and same-age peers. As chil-
dren continue to develop, they become more
aware of their effect on other people and real-
ize that their words and actions impact others.
Thus begins the process of learning how to
manage power within relationships with oth-
ers. As children enter puberty, they develop
a sense of “owning” themselves; that is, they
begin to discover the parameters of autonomy
and the concept of interdependence with oth-
ers as an aspect of each being his own person.
Adolescence is a time of sexual exploration.
A parent’s permission to explore sexual issues
is primarily a function of open communication,
sharing, and recognition that the adolescent is
experiencing intense sexual feelings. The ex-
ploration of both sexual and emotional feelings
remains within a social and interpersonal context
and provides an opportunity to develop more so-
phisticated social skills. A key part of this journey
of sexual development is the creation of sexual
fantasies and masturbation. The fi nal milestone
in the Zoldbrod model is the development of lov-
ing sexual interpersonal relationships.
Zoldbrod’s milestones ground sexual devel-
opment in an interpersonal perspective—the
parent–child relationship. The parent’s care of
the child’s bodily needs and functioning and
the physical and emotional affection that travels
with the child, as he develops into an adolescent
and then a young adult, position sexuality and
physical intimacy more as an aspect of human
communication and connection than one of
sensation or pleasure seeking. Thus these mile-
stones naturally progress from the love and
touch of caring parents to loving and sexual rela-
tionships with others as adults (Zoldbrod, 1998,
2003). Parental touch responds to the needs of
preverbal infants, both emotionally and physi-
cally, and becomes the foundation for empathy
and trust. We learn that touch will soothe us
and help us relax. Parents who talk to their chil-
dren while diapering and bathing them convey
the message that the child and the child’s body
are beautiful. This experience helps form our
fi rst notions of positive body image (Clawson
& Reese-Weber, 2003; Connolly, Slaghter, &
Mealey, 2004; Ehrenberg & Ehrenberg, 1988).
The pleasure of being touched is the basic
foundation of human sexuality and physical in-
timacy (Frohlick & Meston, 2005).
Communication and
the Health-Care Team
People with medical conditions often are sexu-
ally disenfranchised by the medical establish-
ment. In the 1940s, Alfred Kinsey studied
human sexual practices in the United States,
providing data on the age of fi rst sexual ex-
perience, prevalence and fl uidity of same sex
practices, frequency of sexual intercourse
within marriage, and masturbatory behavior
in adolescents and adults (Kinsey, Pomeroy,
& Martin, 1948, 1953). Kinsey’s research was
revisited by Laumann, Gagnon, Michael, and
Michaels (1994) at the University of Chicago,
who collected data to compare to Kinsey’s.
Included among the changes indicated by the
comparison of the two collections of data are
that Americans had their fi rst sexual experience
at a younger age, more women were willing to
report that they masturbated, heterosexual oral
intercourse had become more prevalent, and
more unmarried people were living together
in sexual relationships. The sexual practices of
people with medical illness or injuries, how-
ever, were not addressed by either study.
ch14.indd 345ch14.indd 345 9/22/11 5:24 PM9/22/11 5:24 PM
346 Health Social Work Practice: A Spectrum of Critical Considerations
People with medical problems become sexu-
ally disenfranchised when their sexual concerns
are neither explored nor addressed (Gallo-
Silver & Parsonnet, 2001; Kroll & Klein, 2001;
McCabe, 1999). Health-care professionals tend
to wait for patients and their partners to raise
issues of sexuality and do not themselves ini-
tiate them (Esmail, Yashima, & Munro, 2002).
This silence further isolates patients and their
partners, sending the message that questions
and concerns about sex are less than appropri-
ate (Katzin, 1990; McInnes, 2003).
Discomfort with issues and discussion of sex
and sexual expression may be based on cultural
or religious beliefs. Prohibitions about premari-
tal sex, masturbation, and nonprocreative sex
may be part of the cultural or faith-based milieu
that have been integrated into patients’ belief
systems. The health social worker needs to be
educated about these issues, with the patient
being one of the sources of information. At times,
the health social worker collaborates with faith-
based leaders to help negotiate these restrictions
in a respectful and productive manner. Helen
Singer Kaplan (1974) described a constrictive
upbringing by parents who were uncomfortable
with sexual issues as a source of sexual alien-
ation and adult diffi culties in sexual functioning.
LGBT people may be uncomfortable dis-
cussing their sexual behaviors and expression
with social workers outside their communities,
and some may avoid the topic altogether. So-
cial workers may have to establish that they
are LGBT friendly and demonstrate cultural
credibility to facilitate disclosure and discus-
sion from these patients (see Box 14.2).
Box 14.2 Glossary of Terms Used Within
the LGBT Community
Members of the LGBT community self-
identify using specifi c terms.
Lesbian: A woman who identifi es as
someone erotically, romantically, and
affectionately attracted to other women.
Gay: An individual who identifi es as
someone erotically, romantically, and
affectionately attracted to the same
gender. Typically used by men and
frequently interpreted as referring to men
but also commonly used by women.
Bisexual: An individual who is erotically,
romantically, and affectionately
attracted to both genders. Used both as
an identity label and as an adjective to
describe behavior.
Transgender: Often used to describe
all gender-variant people; clinically
used to describe a person who lives or
identifi es as a gender other than that
expected based on their anatomical sex.
In addition to these terms, additional self-
identifi ers are important to understand.
Homosexual refers to a behavior and not to
a person. Gender identity is a person’s sense
of being male, female, or other gendered.
Gender variant: A person who, either
by nature or choice, does not conform
to gender-based expectations of
society.
Intersexed: A person born with
ambiguous genitals may self-identify
as being a member of both genders.
At times this is used to self-identify
a woman with an elongated clitoris
or a man born with a micropenis and
undescended testicles.
Transsexual: Often used interchangeably
with the word transgender. It clinically
describes those who may have
surgically modifi ed their secondary
and/or primary sexual characteristics
to match their gender identity.
Many of these terms have become
stigmatized within specifi c cultures
and often are associated with urban
communities. People may use other labels
to describe their identity and behavior,
such as queer, men who have sex with
men, same-gender loving, two-spirited,
pansexual, and polyamorous, among others.
When in doubt, always ask clients to defi ne
the term they use to describe themselves
or their behaviors in a respectful and open
manner.
ch14.indd 346ch14.indd 346 9/22/11 5:24 PM9/22/11 5:24 PM
Human Sexual Health 347
Social Worker’s Role
Successful professional intervention is infl u-
enced in part by the attitudes of patients and
their partners. The functioning of the health-
care team also is affected by its members’ cul-
tural and religious backgrounds, which may
result in a reluctance to focus on the sexual re-
lationships between patients and their partners.
In addition, some health-care professionals
may be concerned that raising the issue of sex
will alarm a patient or partner and be seen as
inappropriate or unprofessional. Social work-
ers are trained to address diffi cult issues, such
as family violence, chemical dependence, and
suicidal thoughts. Although these issues are
diffi cult to discuss, they are seen as necessary
issues for social workers’ interventions. Health
social workers need to be equally comfortable
discussing sexuality and intimacy issues with
patients and their partners in order to assess
and address patients’ psychosocial issues fully
as well as to plan effective programs and ser-
vices for individuals, groups, and communi-
ties. In addition, health social workers need
to develop a sex-positive approach to people,
for example, one that does not assume that ev-
eryone is heterosexual or that a person is “too
old” for sexual activity. Although currently
people who are LGBT are labeled according
to their sexual orientation and lifestyle, many
are no more or less inhibited and embarrassed
about discussing sexual activity than are other
Americans. In some instances, LGBT people
may be more inhibited than other people be-
cause of fear of rejection or stigmatization.
INTIMACY OF HEALTH
SOCIAL WORK
Health social work often requires a level of
intimacy that social workers in other settings
rarely experience. In acute care medical fa-
cilities, patients are often in bed and wearing
hospital gowns or sleepwear when the social
worker is present. In both outpatient and in-
patient settings, as well as in nursing homes,
the health social worker often must discuss a
patient’s body and its functions. Health social
workers who are part of visiting nurse or hos-
pice programs face situations in which their
patients’ bodies and functioning become part
of the clinical focus, and most contact takes
place in or near where patients sleep.
The intimacy of health social workers’ prac-
tice settings requires an acute sensitivity to the
patient’s need for privacy and feelings of vul-
nerability. In most instances, the social worker
is well advised to ask the patient’s permission to
join her at the bedside and to empower her to
communicate when would be a comfortable
time to be interviewed. Knocking on the door
to the hospital or nursing home room, even if
the door is open, sets a tone of respect and indi-
cates that one is entering the patient’s intimate
CASE EXAMPLE
Ms. King, who is 75 years old, is recovering
from a hysterectomy after ovarian cancer
and is struggling with feeling less feminine.
Her physician indicated that she was
recovering nicely and told her that, because
she was postmenopausal and therefore
beyond childbearing age, the surgery would
have a negligible effect on her life. Ms.
King decided not to ask her doctor how
her surgery might affect her sexual activity
with her female partner. With empathy and
respect, the social worker seeks a better
understanding of Ms. King’s relationship
with her partner. A joint session with the
couple prior to discharge from the hospital
helps them explore the issue of physical
intimacy in a direct and frank manner. Ms.
King’s doctor then is asked to explain the
medical issues that would impact their
sexual functioning and how those issues
can be accommodated. The social worker
provides the couple with reading material
about sexual activity and arranges for them
to meet with the physician in order for them
to get specifi c information.
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348 Health Social Work Practice: A Spectrum of Critical Considerations
environment. Some cultures prefer a more for-
mal way of addressing and being addressed by
health-care professionals. The social worker
should begin the relationship with patients with
formal greetings (i.e., using an honorifi c and the
patient’s last name) until she is able to assess
what is the norm for the person’s cultural group.
Eye contact is best maintained on an equal
plane; that is, if a patient is in bed or seated in a
wheelchair, the health social worker also should
be seated and at the patient’s eye level instead of
forcing the patient to look up by standing above
her. Even for patients who come from cultures
in which eye contact is considered impolite,
being at the same level as the patient is almost
always considered a sign of respect.
It is within these environments that patients
may exchange information on body functioning
and sexuality that is rarely, if ever, exchanged
with social workers in other practice settings.
Within these intimate contexts, it is important
that all discussions about sexuality, sexual func-
tioning, and physical intimacy address patients
as people with complete adult lives that hap-
pen to have been disrupted by illness or injury
(Schover, 2000; Schover & Jensen, 1988). In
addition, the health social worker must establish
some level of privacy, which may be diffi cult in
some medical environments.
Obtaining a Sexual History
Early in the acquired immunodefi ciency syn-
drome (AIDS) epidemic and prior to the de-
velopment of the current family of antiviral
drugs, people with AIDS experienced long
hospital stays. The health social worker’s role
in discharge planning and the profession’s
commitment to underserved and isolated
communities provided an opportunity to edu-
cate other health-care professionals (Eagan,
1993; Fahs & Wade, 1996; Mantell, Shulman,
Belmont, & Spivak, 1989; Napoleone, 1988).
Health social workers on the forefront of
AIDS intervention claimed as part of their
professional roles counseling to hetero-
sexuals, bisexuals, and gay women and men
about safer sex practices and harm reduction
(Berkman & Zinberg, 1997; Christ, Moynihan,
& Gallo-Silver, 1995; Gallo-Silver, Raveis,
& Moynihan, 1993; Weiner & Siegel, 1990).
The counseling uses a sex-positive approach
(Furstenberg & Olson, 1984; Samuel & Boyle,
1989). Health social workers accomplish this
task by assessing a person’s sexual practices
with acceptance and respect and view the pro-
cess as an integral part of their work.
Similarly, a psychosocial assessment of a
person challenged by any illness or injury that
fails to address sexual issues is incomplete.
The health social worker is the one member
of the health-care team who is not specifi cally
and exclusively focused on the patient’s illness
or injury in terms of treatment or procedures.
Rather, the health social worker’s focus is on
emotional coping skills and practical problem
solving. The social work relationship provides
the most comfortable and safe environment
and opportunity for patients and partners to
discuss issues of sexuality and physical inti-
macy. The natural time during a social work
assessment to ask patients if they are sexu-
ally active and if they have partners is when
discussing relationships and social supports
(Fuentes, Rosenberg, & Marks, 1983; Gallo-
Silver & Parsonnet, 2001; Weerakoon, Jones,
Pynor, & Kilburn-Watt, 2004).
These assessments provide health social
workers with opportunities to convey the mes-
sage that sexuality and physical intimacy are
natural and normal parts of life (Andrews,
2000). As a rule, people who have enjoyed
their sexuality and the physical intimacy of
their relationships want to recover and resume
that aspect of their lives. People who have had
long-standing diffi culties with their sexuality
fear that their medical conditions will render
these diffi culties intractable. In either case,
the support and empathy of a social worker
can help individuals feel less alone and over-
whelmed by issues of sexuality and physical
intimacy. Gaining an understanding of a pa-
tient’s most recent and current sexual relation-
ships helps the social worker learn what has
been lost, or perceived to have been lost, due
to adverse health conditions. All assessments
should elicit information about signifi cant re-
lationships (see Box 14.3).
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Human Sexual Health 349
Box 14.3 Five Suggested Social Work
Assessment Questions and Strategies for
Patients
1. A patient’s demographics enable the
health social worker to integrate questions
about sexuality and physical intimacy into
a psychosocial assessment. If a patient is
married, a social worker can ask, “Your
admissions sheet indicates that you
are married. How long have you been
married? Do you have children? What
are their ages? Are you currently
sexually active?” or “Your admission sheet
lists an emergency contact person; what
is this person’s relationship to you? Is
this person a relative, friend, or partner?
Are you currently sexually active with
your partner?” Some patients are gay or
lesbian. Therefore, discussions of wives
and husbands that presume the patient is
heterosexual are an obstacle to open and
helpful discussions about sexual issues.
The term partner is more gender neutral.
2. Assessing a couple’s emotional intimacy
is the fi rst step in assessing their sexual
relationship. Emotional intimacy is a
good barometer of the couple’s abilities
to communicate and share intimate details
of their lives together with each other.
Areas to consider are an understanding of
the history of their meeting and how the
relationship progressed, the pre-illness/
pre-injury sleeping arrangements, special
enjoyable milestones, and the recreation/
leisure time they spent together.
3. Patients defi ne sexual activity and
physical intimacy in an individual way.
Asking patients how they defi ne the
terms sexually active or physical intimacy
can be accomplished in a respectful and
professional manner: “Thank you for
sharing with me that you have a partner
and that prior to your illness or injury you
have been sexually active. Do you feel
comfortable enough to share with me what,
in particular, you mean by sexual activity?”
4. Patients will want to share sexual material
with health-care professionals because
they have concerns, worries, and distress
about the impact of their illnesses or
injury on their sexual functioning. Health
social workers can share their discomfort
with the issue, even their embarrassment,
as such a disclosure can help put patients
at ease. The reason to explore sexual
issues is to diminish a sense of isolation
and to help patients gain access to
medical information and interventions
that might improve their functioning.
Health social workers demonstrate this
by making clear the purpose of the
discussion: “I appreciate you sharing
such personal issues with me. It is a
little awkward for me to ask you these
questions about sexual activity. My goal
in exploring the issue with you is to help
you identify areas where you may want
help and facilitate getting specialized help
for your concerns.”
5. Sometimes a patient’s concerns are
not specifi cally about how her body
functions but how she looks to others and
her perceived loss of attractiveness and
desirability. These feelings can be very
discouraging to people as they diminish
self-esteem. At times, these feelings
can impede a person’s commitment
to treatment or rehabilitation and can
be an aspect of depression (McCabe
& Taleporos, 2003; Sundquist & Yee,
2003; Tanyi, 2002) The health social
worker’s interventions are listening
empathically, tolerating silence, and not
presenting an obstacle to exploration
by quickly reassuring the patient, “Your
feelings about the way you look are very
important. You have shared with me
how much distress this causes for you.
I don’t think there are any quick or easy
solutions, but I do think that discussing
these issues can bring us closer to fi nding
some solutions.”
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350 Health Social Work Practice: A Spectrum of Critical Considerations
Social workers must be particularly attentive
to the additional stressors and barriers faced by
patients who are LGBT because of the lack of
national legal recognition of their relationships.
Because of this lack of recognition, members
of the LGBT community may use terms such
as boyfriend or girlfriend to describe their part-
ners, even if they are in committed long-term
relationships, while some patients may use
husband or wife, even if the relationship is not
legally recognized where they live.
The patient’s partner is an important partici-
pant in understanding the sexual and affection-
ate aspects of their relationship. Interviewing
the partner can elicit more information about a
person’s life functioning before illness or dis-
ability (see Box 14.4; Cagle & Bolte, 2009;
Lemieux, Kaiser, Periera, & Meadows, 2004).
Partners may be reluctant to approach issues of
sex or physical intimacy due to the belief that
by doing so, they are selfi shly placing their
own needs before those of their partner who is
ill or has a disability (Soloway, Soloway, Kim,
& Kava, 2005; Wimberly, Carver, Laurenceau,
Karris, & Antoni, 2005; Zunkel, 2002). The
health social worker who is willing to address
the issues of sexuality and physical intimacy
with a partner can help normalize and validate
concerns about how life has changed due to
the illness or injury (Esmail et al., 2002).
Box 14.4 Four Suggested Social Work
Assessment Questions and Strategies for
Partners
1. Social workers should understand the
couple’s experience of sexuality and
physical intimacy during the beginning
of their relationship. The health social
worker needs to engage the partner
in sharing how he met the patient to
learn how the relationship unfolded
emotionally. Questions such as “What
were the reasons the two of you became
a couple? At what point did you decide to
become a couple? and What was it like in
the beginning of the relationship?” focus
the partner on the emotional underpinning
of the relationship and ultimately its
sexual underpinnings as well.
2. Relating emotional commitment to the
expression of physical love through
sexuality and physical intimacy helps
a partner understand the health social
worker’s interest in this area of their lives.
The health social worker’s questions need
to refl ect this interpersonal approach:
“My next question is a logical one but
also a very personal one, and I want to
avoid any embarrassment for you or for
me. How has your relationship grown
over the years in the areas of sexuality
and physical intimacy? What has this
been like for the two of you before your
partner became ill/was injured? What
types of touching and affection can/do the
two of you share now?”
3. The health social worker needs to ascertain
the importance of sexuality and physical
intimacy for the partner at this time in
his or her and the patient’s life. “How
important was making love/sex to you
and your partner before the illness/injury?
What do you miss now? Are you interested
in fi nding out how you and your partner
might be able to return to what the two of
you enjoyed before the illness/injury?”
4. The health social worker’s interventions
are empathic: listening, tolerating
silence, and not presenting an obstacle
to exploration by quickly reassuring
the partner or changing the subject.
“Thank you for giving me a very clear
understanding of how much the two of
you share and how close the two of you
are. Sexuality and physical intimacy
are an important part of a couple’s life.
Perhaps as I talk further with you and
your partner we can fi nd some solutions
and/or specialized services to help
you both retain/reclaim the physically
intimate aspects of your relationship.”
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Human Sexual Health 351
The health social worker’s approach to ob-
taining a sexual history and ultimately helping
the patient and her partner problem-solve around
sexual issues is based in supportive counseling
techniques. The health social worker uses ques-
tioning to increase the couple’s understanding
of their thoughts, feelings, concerns, and needs;
identifi es patients and partners who want fur-
ther intervention; and collaborates with other
health-care professionals to access specialized
services.
In addition to this process-oriented outline
for assessment, other interventions are used
more commonly in health-care settings that
employ a medical model. The health social
worker needs to be aware of how other health
professionals may approach issues of sexuality
and physical intimacy.
The EX-PLISSIT model of assessment has
been developed and enhanced by nursing pro-
fessionals and often is used by health social
workers (Cagle & Bolte, 2009). EX-PLISSIT
is based on the original PLISSIT model de-
veloped by Anon in 1976 (Taylor & Davies,
2006). The acronym stands for
EXtended. Social workers need to take a
well-paced, ongoing approach to help-
ing people with sexual issues.
Permission. Social workers need to give pa-
tients permission to talk about and con-
sider sexual issues using generalization
and normalization interventions.
Limited Information. Social workers need
to gather limited information to capture
the patient/family education aspects of a
sexual assessment.
Specifi c Suggestions. Social workers need
to provide specifi c suggestions and rec-
ommendations to the patient and the
couple based on their sexual activity be-
fore their illness or injury.
Intensive Therapy. Social workers may sug-
gest and intensive therapy to address an
identifi ed need through an appropriate
referral.
Many health social workers use the EX-
PLISSIT model, but a social work–developed
model also can be used. The CARESS model
was designed originally to assess sexual issues
for patients receiving palliative care or at the
end of life (Gallo-Silver, 2011) The acronym
stands for:
Counseling. Health social workers often
provide a variety of services and psycho-
social interventions concurrently, and
sexual issues often are presented within
the context of ongoing meetings with
patients and families focused on adjust-
ment to illness.
Assessment. After the health social worker
has developed a therapeutic alliance
with the patient and partner, sexual is-
sues should be introduced in a way that
enables them to provide a description of
their emotional and physical intimacy
(see Box 14.4).
Research. The social worker must conduct
research to become familiar with the
specifi c needs and sexual issues con-
fronting each patient due to specifi c ill-
nesses or conditions.
Education. The social worker must provide
education to the patient and her partner
based on the social worker’s research
and in collaboration with the health-care
team to help the couple understand their
current medically related sexual obsta-
cles.
Strategies. The social worker, in collabo-
ration with the patient and her partner,
must strategize for solving specifi c prob-
lems, because often the couple are too
embarrassed or inhibited to share ideas
with each other.
Sustainment. Social workers must make an
ongoing commitment to help the couple
when medical issues change.
Health social workers help other health pro-
fessionals understand how certain terminology
and phrasing might confuse patients who may
be too uncomfortable to ask for clarifi cation.
Given the number of euphemisms used for
sexual activities, defi nitions can vary from in-
dividual to individual.
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352 Health Social Work Practice: A Spectrum of Critical Considerations
CHILDHOOD SEXUAL ABUSE
People’s sexual histories can be fraught with
joy, contentment, resignation, or disappoint-
ment. After a health social worker uses his
skill set to normalize issues of sexuality and
physical intimacy and validate them as a natu-
ral part of life, other issues can be uncovered.
Sadly, not all children are touched with paren-
tal tenderness and affection. Researchers esti-
mate that 1 in 3 women and 1 in 7 men were
sexually abused as children (Finkelhor, 1984;
Maltz, 2001, 2003; Russell, 1999). Child-
hood sexual abuse is an umbrella designation
for a series of behaviors that include vaginal
and anal penetration by a penis, fi nger, hand,
or other object; receptive or active oral sex;
fondling and masturbation; invasion of privacy
when bathing and toileting; sexually provoca-
tive behavior and nudity; and exposure to and
involvement in pornography (Johnson, 2004).
Survivors of childhood sexual abuse often
feel violated by the health-care system (Jehu,
1992). The requirement that patients remove
their clothes and appear inadequately dressed
in a hospital gown, undergo X-rays and other
radiographic tests that require them to stay
still or be posed in certain ways, and receive
invasive examinations, such as a gynecologi-
cal or digital rectal exams, all can evoke feel-
ings and thoughts about childhood sexual
abuse that previously have been avoided or
not acknowledged (Draucker, & Spadlin,
2001; Gallo-Silver & Weiner, 2006; Hobbins,
2004; Sansone, Gaither, & Sansone, 2001;
Sansone, Skaife, & Rhodes, 2003).
A health social worker may become aware
of a history of childhood sexual abuse when
working with a patient who is in distress or
having diffi culty coping with the health-care
environment. Helping a patient feel safe in
these circumstances is achieved by increasing
her sense of control over a given situation. All
medical procedures require some form of con-
sent, that can be rescinded or altered according
to the patient’s wishes. The next case example
depicts how health social workers can use their
clinical skills to help this emotionally fragile
population.
The exploration of childhood sexual abuse
in the health-care setting is appropriate when
the history represents an obstacle to care, as
illustrated in the last case. The ability to re-
spond empathetically to a patient’s disclosure
of abuse is the social worker’s most important
skill when working with this population. The
nature of the experiences described is often
diffi cult to hear and can evoke considerable
anxiety for the health social worker and other
health-care professionals. It is both respect-
ful and supportive for survivors of childhood
sexual abuse to know that their histories are
hard to hear. The pacing of the questioning is
essential; survivors can overwhelm themselves
CASE EXAMPLE
Mr. Allen is slowly recovering from a
stem cell transplant to treat cancer. He
underwent intensive chemotherapy and
needed the transplant to help his bone
marrow recover from the treatment. He
becomes reluctant to change his pajamas,
refuses to bathe, and struggles whenever
he is being examined. His social worker,
who had provided counseling to him in
anticipation of the transplant, indicates that
Mr. Allen’s behavior is not consistent with
how he had coped with his cancer prior
to the transplant. After a medical reason
for his change in behavior is ruled out,
the social worker continues to help Mr.
Allen become more aware of his feelings
and thoughts. The simple questions “What
is troubling you about the staff touching
you? Do you think you could put it into
words for me?” helps Mr. Allen share
that his father fondled him when he was
young, telling him that his skin was
smooth and soft. Mr. Allen shares with
the social worker that the loss of all his
body hair frightens him because it makes
him feel that his body has reverted back to
the body his father molested. Continued
counseling and psychiatric intervention
with medication helps Mr. Allen manage
the remaining course of his treatment.
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Human Sexual Health 353
and be retraumatized by sharing too much in-
formation at one time. By setting a limit on
how much material will be discussed in any
one session, the health social worker will
help the survivor feel cared for rather than re-
jected (Gallo-Silver & Weiner, 2006; Schacter,
Radomsky, Stalker, & Teram, 2004).
HUMAN SEXUAL RESPONSE
The hormonal surge during adolescence
increases the skin’s sensitivity to touch
(Neufi eld, Klingbell, Borgen, Silverman, &
Thomas, 2002). Sensitivity to touch remains
intact as people age and become ill (Gelfand,
2000; Kingsberg, 2000). Even seriously ill
people can respond to the sensual experience
of bed baths, the application of moisturizers
to their feet, and assistance with repositioning
their body in bed. For people with spinal cord
injury, the part of their body above the point of
spinal injury remains highly sensitive. Some
people with spinal cord injury report that their
skin’s sensitivity seems heightened because of
the lack of sensation they experience below the
point of injury (Sipski, 1998).
Human sexual response also can be seen as
a neurological process. The centers of the brain
interpret stimulation and send messages to the
body to respond. The brain interprets both
touch and nontouch types of stimulation. The
brain is the repository of learning, experience,
and recollection, all of which have a memory
component. The brain stores a variety of sexual
memories (Karma, Lecours, & Leroux, 2002),
including memories of the physical sensations
related to excitement, arousal, and orgasm; the
memory of sexual and masturbatory fantasies;
and the memory of actual sexual experiences
(Cranston-Cuebas & Barlow, 1990; Holstege,
Georgiadis, & Paans, 2003; McKenna, 1999).
Masturbatory fantasies are thought to change
only superfi cially as people mature; their basic
concepts remain constant throughout the life
span (Green & Mosher, 1985; Hurlbert &
Whittaker, 1991; Lukianowicz, 1960; Mosher,
1980; Nutter & Condron, 1985; Rowan, 2000).
As part of the long-term memory bank, sexual
memories are resilient and retrievable (Jones
& Barlow, 1990). Retrieving these memories
can help medically ill and injured people en-
hance their sexual responsiveness through the
use of masturbatory fantasies.
Masters and Johnson (1966, 1970) divided
the human sexual response into interdependent
phases. The four identifi ed phases expanded
existing knowledge of human sexuality beyond
the previous notions of impotence and frigidity,
two terms that have not added to our under-
standing of sexual dysfunction and have pejo-
rative connotations that may add to patients’
feelings of hopelessness and rejection. The
phases determined by Masters and Johnson in-
clude: (1) the desire phase, which encompasses
the feelings and thoughts about sex and sexual
feelings; (2) the excitement phase, which in-
volves increased blood supply to the genitals,
erection of the penis, and lubrication of the va-
gina during sexual stimulation; (3) the orgasm
phase, with rapid muscle spasms, increased
heart and respiratory rates, changes in body
temperature, and ejaculation; and (4) the reso-
lution phase, which is marked by the body’s
return to a resting heart rate and a decrease in
the supply of blood to the genitals.
Medical illnesses and injuries can disrupt
some of these phases, but it is rare for all to
be markedly disrupted (Black, 2004; Boone &
Kelly, 1990; Ide, 2004; Katz, 2007; McCabe
& Taleporos, 2003; McInnes, 2003). Because
not all phases are disrupted, sexual rehabilita-
tion for people with medical illnesses or in-
juries is possible. Sexual rehabilitation is the
process of helping a medically ill or injured
person restore and resume sexual functioning.
A rehabilitative approach identifi es the phase
or phases that remain intact and helps patients
maximize their responsiveness and enjoyment
by building on the strengths of the remain-
ing phases (Gallo-Silver, 2000; Kaplan, 1974,
1983; Schover & Jensen, 1988). Sex therapists
using this model focus on cognitive and behav-
ioral techniques that help obviate sexual con-
cerns and worries (Gallo-Silver, 2000).
The phases of sexual response developed
by Masters and Johnson are considered to
be linear in nature. For this reason, some sex
ch14.indd 353ch14.indd 353 9/22/11 5:24 PM9/22/11 5:24 PM
354 Health Social Work Practice: A Spectrum of Critical Considerations
therapists consider them to be more relevant
for men than for women. Basson (2001), for
example, considers women’s sexual responses
to be more cyclical than those of men. Basson’s
sexual response cycle for women begins and
ends with emotional intimacy that creates
receptivity to sexual stimulation. The cycle
continues to subjective arousal that is both
emotional and physical, which leads in turn to
objective arousal and responsive desire (simi-
lar to the Masters and Johnson’s phase of ex-
citement), followed by orgasm, resolution, and
emotional and physical satisfaction. Emotional
and physical satisfaction can engender further
emotional intimacy. In Basson’s formulation,
emotional intimacy is both the beginning and
end of the cycle of sexual functioning. Sex
therapists whose interventions are based on
Basson’s conceptualization use a strengths-
based approach that identifi es those aspects of
the response cycle that are intact as building
blocks to sexual and emotional satisfaction.
It is easy for a patient challenged by a
changed body and functioning to be discour-
aged about and fearful of sexual issues. A
strengths-based approach presents this same
patient with a measure of hope and possi-
bilities for a different approach to sexuality.
A rehabilitation approach based on Basson’s
(2001) model would focus on the interpersonal
and intrapsychic issues that likely represent
obstacles to comfort and enjoyment of physi-
cal intimacy. It should be noted that the gender
patterns outlined here are not invariable.
DEVELOPMENTAL
PERSPECTIVE
Older Adults
Often sexuality is considered the domain of
the young, able, slim, and well. Although
some baby boomers (individuals born in the
post-World War II period from 1945 to 1968)
consider sexually active older adults to be a
new phenomenon, Kinsey in the 1940s, as well
as Laumann in the 1990s, found individuals of
both genders to be sexually active and satisfi ed
with the quality of physical intimacy in their
lives into their 80s and 90s (Kinsey, Pomeroy,
& Martin, 1948, 1953; Laumann et al., 1994).
Kinsey’s fi ndings are more illuminating, be-
cause the median age of survival during the
period of his research was lower than it is
at present, and medicine was less capable of
addressing serious medical problems. Social
workers should consider all patients as sexual
beings, because sexuality is basic to the human
condition. This approach will ensure that no
group (e.g., those older than 80 years, those
with physical disabilities) is desexualized and
assumed to be sexually inactive.
After a certain age, women begin to produce
less estrogen. The decreased estrogen levels can
diminish vaginal lubrication, and the walls of
the vagina may become thicker and less elas-
tic. Desire, which is to some extent hormonally
determined, might diminish, and some women
report less intense orgasms as they age (Denner-
stein & Lehert, 2004; Dennerstein, Lehert,
Dudley, & Burger, 1999). However, hormone
replacement therapy remains controversial due
to empirical evidence that it can increase risk
for breast and ovarian cancers (Aubuchon &
Santoro, 2004; Chen et al., 2004; Ching & Lip,
2002; Durna et al., 2004).
Postmenopausal women may benefi t from
vaginal lubricants or moisturizers to facilitate
comfortable sexual intercourse. As men age,
they may require more tactile stimulation to
achieve erections, and erections may be less
rigid. The intensity of their orgasm also may
diminish, as might the quantity of their ejacu-
lates. Men also may require longer periods of
time to achieve erections following orgasm.
Erectile dysfunction medications are said to be
effective for men who have diffi culties due to
natural aging, medical problems, or emotional
obstacles to becoming aroused.
Laumann and colleagues (1994) suggest
that partner availability might be a more im-
portant obstacle to sexual activity for older
adults than the physical sequelae of aging.
Older adults who do not have partners may use
masturbation as their primary sexual activity.
Masturbation is often a part of their sleep ritual.
There is evidence to suggest that masturbation
ch14.indd 354ch14.indd 354 9/22/11 5:24 PM9/22/11 5:24 PM
Human Sexual Health 355
among older adult women without partners
is almost as high as among adolescent males
(Laumann et al., 1994). Health-care staff who
work in congregate living settings often report
discomfort when encountering a patient who is
masturbating. Social workers can educate staff
about masturbation in older adults and, in the
process, help normalize the experience.
People in congregate living situations, such
as assisted living residences, supportive senior
apartments, nursing homes, and chronic care
institutions, at times form sexual relation-
ships with other residents. Nursing homes and
chronic care facilities often do not permit un-
married patients to share rooms, but couples in
love fi nd ways to have private time nonethe-
less. Although it is important for institutions
to protect vulnerable patients from being sexu-
ally exploited, some rules about privacy and
sexual activity are more refl ective of society’s
discomfort with sex rather than a need to pro-
tect. Social workers should advocate for pa-
tients who are competent to consent to sexual
activity to have the privacy they desire in ways
that are still consistent with the institutional
policy and procedures.
Gay and lesbian older adults, whether in
assisted living facilities, nursing homes, or
chronic care environments, may feel par-
ticularly isolated (D’Augelli, Grossman,
Hershberger, & O’Connell, 2001; Grossman,
D’Augelli, & Hershberger, 2000; McMahon,
2003). The AIDS epidemic has left some gay
men without the support of groups of male
friends. Gay and lesbian adults in congregate
or assisted living situations often feel they can-
not be themselves or talk openly about their
sexual identity or orientation, even though
they may have led open lives before entering
a facility or group living situation (Spitzer,
Neuman, & Holden, 2004). Social workers can
enable LGBT people to adjust to new living
situations, including feeling safe and able to
be themselves without the threat of being os-
tracized or scapegoated. It is crucial for the so-
cial worker to model acceptance for the other
residents as well as staff members.
Health social workers can inform other
members of the health-care team about
patients’ need for information about sexuality.
At times, the health social worker seems to be
the “safest” member of the health-care team to
approach about sexual issues. This may be be-
cause of the therapeutic bond that health social
workers establish around other issues impor-
tant to their patients.
Young Adults
Adolescence is a time of rapid emotional and
physical change. A major feature of adoles-
cence, and the engine for the emotional up-
heaval during this stage of development, is
the increased production of testosterone and
estrogen. Adolescents are challenged by in-
tense changes in body image and functioning
due to the development of pubic hair, breasts,
and muscle mass. Medical illness and injury
further complicate young adults’ relationships
with their own bodies and their developing
sexuality (Berman et al., 1999; Greydanus,
Rimsza, & Newhouse, 2002).
CASE EXAMPLE
Mr. Jones, who is 80 years old, is in the
hospital’s recovery area after a cardiac
catheterization to clear several blockages
in his arteries. At his bedside is his
“friend,” Ms. Thomas, who is 75 years
old. His doctor visits and tells him that
he will recover well and can return to his
regular activities a few weeks but that he
should not overly exert himself during that
time. The doctor does not mention sexual
intercourse, and neither Mr. Jones nor Ms.
Thomas feels comfortable bringing it up,
although they previously had made love a
few times a month.
Once home, they are fearful of even
cuddling, because they have heard stories
of people dying of heart attacks during
sexual activity. The social worker reassures
them during her session with Mr. Jones
by asking about his relationship with Ms.
Thomas, and she makes it clear that talking
about their sexual relationship is important.
ch14.indd 355ch14.indd 355 9/22/11 5:24 PM9/22/11 5:24 PM
356 Health Social Work Practice: A Spectrum of Critical Considerations
Health-care professionals are obligated to
inform patients that recommended treatment
may interrupt or impair fertility. Often these
discussions fail to address the sexual chal-
lenges that treatment presents, leaving young
adults with many unanswered questions about
the impact of their illness or treatment on their
ability to function sexually. Some illnesses,
such as testicular cancer, gynecological can-
cers, and cancer of the penis, affect both the
functioning of the genitals and their appear-
ance (Anderson, Woods, & Copeland, 1997;
Katz, 2007; Nazareth, Lewin, & King, 2001;
Opjordsmoen, Waehre, Aass, & Fossa, 1994).
The health social worker can advocate for
complete and comprehensive information to
be given to patients, which is a crucial fi rst
step in helping them cope.
Advocacy is an important leadership func-
tion of social workers on health-care teams. It
is essential that health social workers are in-
formed about the impact of the illness, injury,
and/or treatment to patients’ genitals before the
patient is given this information by physicians
or nurses (Fuentes et al., 1983; Weerakoon
et al., 2004). Being present when this discus-
sion occurs maximizes the health social work-
er’s ability to shape discussions that may be
distressing and diffi cult for patients.
The use of clear and accurate terms is es-
sential in discussing sexual issues to a popula-
tion that may be sexually naive. It is part of the
health social worker’s advocacy role to inform
other health-care professionals when a patient
does not understand the information given to
him or when he might misconstrue information.
In addition to issues related to fertility, an-
other psychosocial barrier that young adults
may struggle with are issues of attractiveness
and desirability. Body image issues can create
crises of self-esteem for people who do not cur-
rently have a partner or who have had limited
sexual experiences (Horgan & MacLachlan,
2004; Ide, Watanabe, & Toyonaga, 2002;
Lawrence, Fauerbach, Heinberg, & Doctor,
2004; McCabe & Taleporos, 2003). Changes in
appearance are painful for any young adult, re-
gardless of their sex. Many people view young
adulthood as a time for entering long-term re-
lationships, getting married, and having chil-
dren; therefore, people experiencing physical
changes during this period may be particularly
vulnerable to issues with self-esteem. This
may be especially true for young adults coping
CASE EXAMPLE
Mr. Crane, a 19-year-old with lymphoma,
proudly walks into the clinic and
announces to his social worker that
the doctors were “wrong” and that his
chemotherapy would not prevent him from
having children. He reports that he and his
girlfriend had made love the night before
and that everything was about the same as
it always had been. Mr. Crane had been
confused by the euphemistic and medical
language used to discuss his illness. He
thought that infertility meant he could not
have an erection.
CASE EXAMPLE
Ms. Dean, a 22-year-old woman, underwent
an amputation of her left leg above her knee
after a car accident. About the same time,
her boyfriend decided to end their relation-
ship. During the period in which she is
awaiting a prosthesis, she repeatedly cancels
appointments and misses her outpatient
physical therapy appointments. She tells
her social worker that there is little point
in keeping her appointments, because she
would rather just stay in a wheelchair.
Counseling with her social worker helps
her mourn the loss of both her boyfriend
and her leg. Support and education help Ms.
Dean feel more in control and willing to
accept her prosthesis. Counseling continues
as an integral part of her physical therapy.
Ms. Dean gradually begins to pay more
attention to her appearance. She tells her
social worker that she feels more confi dent
when socializing with her friends and that
she hopes to meet the “right person” with
whom to begin a new relationship.
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Human Sexual Health 357
with an amputation. Amputation of a limb and
facial disfi gurement can be profoundly disor-
ganizing to a person’s self-esteem because it
often has an immediate impact on how oth-
ers interact with the affected person (Horgan
& MacLachlan, 1004; Lawrence et al., 2004;
McCabe & Taleporos, 2003; Monga, Tan,
Ostermann, & Monga, 1997).
Given the many changes that are character-
istic of adolescent physical development, the
additional changes due to illness and injury
serve to separate affected adolescents from
their peers. The validation and normalization
of adolescents sharing thoughts and concerns
about bodily changes with their peers are often
unavailable to those challenged by illness or
injury. In some ways, the relationship with the
health social worker becomes the environment
for validation of and normalization to the spe-
cial circumstances caused by illness or injury.
Although prosthetic devices can help a
young adult amputee look “whole” in cloth-
ing that covers the affected limb, the loss of a
limb becomes apparent in intimate situations.
This reality can affect how the young adult ap-
proaches and adheres to the required physical
therapy and prosthetic fi ttings. The health so-
cial worker’s role is often to permit the young
adult to mourn the lost body part, bear witness
to the loss, and confront fears about how the
loss will affect sexual relationships. Educa-
tion about the normal or typical process of ad-
justing to an amputation and the provision of
supportive counseling either before or directly
after a physical therapy session can help young
adults with amputations begin to integrate their
experiences (Bodenheimer, Kerrigan, Garber,
& Monga, 2000; Shell & Miller, 1999). The
goal of the health social worker’s interventions
is for the patient to accept the loss of the limb
as part of an ongoing process of adjustment.
The young adult’s adjustment to facial dis-
fi gurement is accompanied by a tendency to
become socially isolated and anxious about
meeting new people, including new health-
care professionals (Bianchi, 1997; Monga
et al., 1997; Whitehead, 1993). The health
social worker can build a relationship of trust
by maintaining eye contact with the patient
and acknowledging the discomfort caused by
facial disfi gurement. Assisting young adults
with facial disfi gurement to gain social con-
fi dence can be accomplished by helping them
develop strategies to put people at ease and ad-
dress hurtful reactions to their disfi gurement in
an open and direct manner. The health social
CASE EXAMPLE
Mr. North, age 15, had been challenged
by a variety of physical problems due
to cerebral palsy. He shares a friendship
with Ms. White, also 15 years old and
challenged by cerebral palsy. They met at
the medical clinic where they both receive
care. The parents are aware that their
children have formed a close friendship.
They are observed by a medical assistant
kissing and touching each other in what
the teens had assumed was a private place.
The medical assistant tells Ms. White’s
mother, believing Ms. White needs to be
“protected.”
The social worker intervenes after Ms.
White’s mother complains about Mr. North
to clinic staff. Gently but empathically,
the social worker helps Ms. White’s
mother place her daughter’s behavior and
the behavior of her male friend in the
perspective of adolescence. The mother had
not focused much on her daughter’s body
changes, beyond helping her understand her
menstrual cycles, purchase a bra, and learn
to address her personal hygiene activities.
The mother admits to the social worker
that she never considered that her daughter
might have “those” thoughts. Similarly,
Mr. North’s parents were aware that he was
masturbating but had not discussed sexual
development or feelings with him.
The health social worker can help these
two families communicate with one another
about many diffi cult issues using empathy
as well as even-handed neutrality. In this
instance, normalizing adolescent behavior
helps the parents realize that all parents of
adolescents struggle with the same issues.
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358 Health Social Work Practice: A Spectrum of Critical Considerations
worker can help young adults who are chal-
lenged by amputation or facial disfi gurement
consider issues of sexuality and physical inti-
macy and manage social situations in general.
Social workers should not assume heterosex-
uality, because many lesbian, gay, and bisexual
people are “coming out” or becoming self-aware
of their sexual orientation in middle and high
school (Grov, Bimbi, Nanin, & Parsons, 2006).
In addition, many transgender people begin to
struggle with their gender identity during ado-
lescence (Koken, Bimbi, & Parsons, 2009).
Finally, adolescents with complex medical
needs often struggle with intensifi ed issues of
independence from parents, who necessarily
are involved in their ongoing care. Parents’ in-
creased involvement in adolescents’ lives and
physical needs may delay their acknowledgment
of their child’s maturation and sexual develop-
ment. Health social workers often educate par-
ents about the additional struggles experienced
by their adolescent and the adolescent’s expe-
riences with sexuality and physical intimacy.
Heterosexual and LGBT youth may use sexual
contact to affi rm their sense of self and identity.
SPECIFIC ISSUES RELATED
TO WORKING WITH
COUPLES
“Parentifi cation” of the Well Partner
Hospital stays have become progressively
shorter because of improvements in medi-
cine’s ability to treat illnesses, the expansion
of outpatient services, and the demands of
medical insurers. Families have become more
involved in the practical care of people with
both acute and chronic illness. The shift in
care from health-related facilities to patients’
homes may have unintended, negative conse-
quences for couples.
Medical illnesses and traumatic injuries
place patients in a vulnerable position and in-
crease their dependence on others, both prac-
tically and emotionally. The well partner often
must monitor the patient’s condition, supervise
medications, provide transportation to physician
visits and treatments, assist with bathing and
toileting, and participate in physical and occu-
pational therapies. As the level of practical and
personal care increases, partners may report
that they feel like parents rather than romantic
partners. Other health-care professionals are
often unaware of this shifting dynamic in cou-
ple relationships as the well partner begins to
focus on the details of the care, treatment, and
progress. A health social worker’s awareness of
this potential “parentifi cation” of the well part-
ner can help diminish the isolation and loneli-
ness that develops among couples. The health
social worker’s use of problem-solving skills
CASE EXAMPLE
Ms. Richards is recovering from a gunshot
wound that left her paralyzed from the
waist down. Her partner, Mr. Barry, visits
her daily and participates in her therapy
at the acute care rehabilitation center. Ms.
Richards complains to her social worker
that, while Mr. Barry is attentive and
helpful, the affection and physicality of
their relationship has suffered.
The social worker meets with Mr. Barry
and asks him how well he thinks he and
his partner are adjusting to her spinal cord
injury. He reports that he has learned a lot,
wants to help Ms. Richards in every way,
but misses aspects of their previous life
together. When the social worker questions
further, Mr. Barry begins to cry, relating
how he feels more like his partner’s father
than her lover. He recalls to the social
worker how he loved to hold her and
caress her breasts. Mr. Barry seems quite
embarrassed when sharing this with the
social worker. The social worker reassures
him and suggests that because the spinal
cord injury did not change Ms. Richards’s
breasts in any way, and because touching
them would not hurt her in any way, perhaps
that is something they can still share. She
suggests that he pull the curtain around her
bed, giving them enough privacy to show
how much they love each other.
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Human Sexual Health 359
engages the partner in an exploration of what
aspects of physical intimacy could be integrated
into daily care routines. The activity is identi-
fi ed by the partner, and the health social worker
works on helping the couple consider ways to
incorporate physical intimacy into these ac-
tivities. This might include adding massage to
bathing activities or kissing when helping the
patient with meals.
Straightforward suggestions can give
couples permission to demonstrate their love
physically. The health social worker can work
collaboratively with occupational therapists to
help couples feel more “normal” in the face of
traumatic injuries that affect day-to-day self-
care functioning as well as issues of sexuality.
Physical Intimacy as an Aspect
of Couples’ Communication
Medical illness and traumatic injury can have
an enormous impact on a couple’s ability to
communicate, share, and understand each other.
If communication problems existed before the
health crisis, they likely will not improve under
the challenge of poor health or disability. Physi-
cal intimacy for people with medical conditions
requires verbal communication. Often couples
need to relearn how to listen to each other so
they can rekindle the physical intimacy they en-
joyed before the crisis. Adjusting to a changed
body and body image requires sensitivity and
clarity, both of which are best achieved through
good communication.
The Speaker/Listener Technique (Markham,
Stanley, & Blumberg, 1994) was developed
to help couples improve their ability to com-
municate and share their thoughts, concerns,
and worries. The technique entails teaching
couples how to concentrate on the words that
the other person is saying instead of focusing
on how they should respond. Couples are in-
structed to try to paraphrase what their partner
has said and then inquire whether their inter-
pretation accurately refl ected their partner’s
statement. The couple takes turns complet-
ing the exercise. For couples who need more
structure, the speaker may hold a card, which
is called the “fl oor.” The term holding the
fl oor means that only the person with the card
is allowed to speak at that time. The Speaker/
Listener Technique can be taught at the bed-
side or in a clinic exam room.
EFFECTS OF MEDICAL
ILLNESSES AND TRAUMATIC
INJURIES
Impact on Sexuality
and Physical Intimacy
Illness and injury often disrupt aspects of the
human sexual response, but rarely do they dis-
rupt them entirely. Many people retain func-
tioning in at least one of the major phases (i.e.,
desire, excitement, and orgasm) of the response.
Many anecdotal stories exist about people
who suffer heart attacks during sexual activ-
ity. Although instances of cardiac arrest dur-
ing sexual intercourse are uncommon, people
with heart disease often approach the issue of
CASE EXAMPLE
Mr. Wong is a 28-year-old man recovering
from the surgical treatment of testicular
cancer. He was referred to the health social
worker when a nurse walked in on him
while he was trying to masturbate. He
explains to the health social worker that
he wanted to make “sure it [his penis]”
still worked. He was reassured by his
surgeon prior to his surgery that his erectile
capacity would be unchanged. Mr. Wong
reports fearing that his boyfriend of two
years, Mr. Perez, would leave him if he
could not sexually “perform.” Although
he is fearful of talking at all to Mr. Perez,
he is more fearful of returning home
without some discussion of the issue. The
health social worker facilitates a couple’s
session that helps them rediscover the vast
number of ways they enjoy each other’s
bodies. Specifi cally, Mr. Perez’s hugs and
kisses reassure Mr. Wong of his emotional
commitment to him and their relationship.
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360 Health Social Work Practice: A Spectrum of Critical Considerations
physical intimacy with fear and dread (De-
busk, 2000). Cardiovascular disease, hyperten-
sion, and diabetes often diminish the body’s
sensitivity to touch and stimulation, secondary
to diminished blood fl ow. This has its great-
est impact on the genitals, which require in-
creased blood supply to achieve erection of the
penis or lubrication of the vagina. At the same
time, however, diminished blood fl ow would
not likely affect the desire for sexual stimula-
tion or the overall quality of orgasm.
Although desire is highly governed by hor-
mones, it also may be affected by systemic
problems. This is because emotional vibrancy
and vigor also play a part in the desire phase.
People in renal failure lose energy and stamina
due to the buildup of impurities in the blood
that would ordinarily be cleaned by the kid-
neys. Dialysis can assume the functioning of
the kidneys, but the process leaves the body
fatigued and diminishes its overall response to
stimulation. Therefore, erectile and lubrication
capabilities are impaired, although orgasm is
largely unaffected (Schover, 2000; Schover &
Jensen, 1988).
Pulmonary disease robs the body of energy,
which in turn diminishes feelings of desire.
Although they are able to be stimulated to the
excitement or arousal phase of response, peo-
ple with pulmonary disease sometimes do not
have the lung capacity to tolerate orgasm, and
the quality and intensity of their orgasms are
diminished (F. Haas & Haas, 2000; Walbroehl,
1992).
Cancer is a generic term for a number of ill-
nesses, all of which involve cells multiplying
and growing out of control (see Chapter 19).
Women with breast or gynecological cancers
may experience diminished desire, problems
with excitement or arousal, and diminished
quality of orgasm. Men with prostate can-
cer are challenged by diminished desire and
erectile diffi culties, yet they retain orgasmic
functioning. Men with testicular cancer retain
desire and erectile capabilities but report some
diminished quality of orgasm. People with
colorectal cancers and bladder cancer experi-
ence problems with erection and lubrication
but retain desire and orgasm. Women treated
for bladder, cervical, and other gynecologi-
cal cancers may experience changes in the
shape or size of the vaginal vault. This may
necessitate the use of dilators to maintain and
stretch the contours of the vagina. Dilators are
used until the penis can be inserted comfort-
ably into the vagina. Health-care profession-
als may recommend vaginal intercourse as
a way of preserving the vagina’s contours.
This is a sex-negative recommendation be-
cause it places women in the position of hav-
ing uncomfortable and painful intercourse in
the short run for longer-term sexual comfort.
People with leukemia or lymphomas experi-
ence a loss of desire and some fatigue-related
erectile or lubrication dysfunctions yet retain
orgasm. People with brain tumors can experi-
ence a loss of desire but often retain some abil-
ity to achieve erection or lubrication as well
as orgasm (American Cancer Society, 1998;
Schover, 1999).
Spinal cord injury disrupts the individual’s
ability to feel below the injury. Desire remains
intact, and erections and lubrication occur, but
the individual is not able to feel these changes.
Because orgasm is a total body response not
confi ned to the genitals, people can experience
orgasmic feelings in parts of the body that are
above the injury. Kroll and Klein (2001) report
that skin over areas that retain feeling express
some of the orgasmic reactions.
The social work profession encourages a
strengths-based perspective. Supportive and
educational social work interventions focus on
the aspects of sexual functioning that remain
intact while at the same time respecting the
loss or impairment of certain sexual abilities.
The health social worker who is able to help
people feel comfortable with sharing their sex-
ual feelings can help them locate reactions that
can serve as building blocks to more satisfying
physical intimacy.
Impact on Stamina
The loss of overall physical stamina caused
by cancer, AIDS, pulmonary disease, mul-
tiple sclerosis, and other chronic medical
problems can impair the body’s ability to
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Human Sexual Health 361
respond to sexual stimulation (Ferrando et al.,
1998; Harden, 2005; Parish, 2002; Schmidt,
Hofmann, Niederwieser, Kapfhammer, &
Bonelli, 2005; Walbroehl, 1992). As the body
moves from an aroused state to orgasm, heart-
beat and respiration increase. Cardiologists
have compared the energy needed for sexual
activity to that of climbing two fl ights of stairs
or walking three miles on level ground (Brody
& Pruet, 2003; Debusk, 2000; Thorson, 2003).
Energy conservation is a crucial element in en-
abling people with a medical illness or injury
to resume or return to sexual activity. Accom-
modations in lovemaking positions transfer
more of the “work” of sexual intercourse to
the well partner (Haas & Haas, 2000).
Fatigue is a major obstacle to sexual activ-
ity for people with challenging medical condi-
tions. Fatigue is a physiological phenomenon
that does not respond to sleep or rest and often
is intensifi ed by increased inactivity. Tiredness
is usually muscular in nature and can be re-
solved by sleep and rest. Although it is coun-
terintuitive to be active when fatigued, exercise
can work to offset fatigue. It is important that
people can identify the times at which they ex-
perience higher energy levels so they can plan
for physical intimacy.
For people with pulmonary disease, the
morning is a time to clear secretions that have
built up in the lungs during sleep. After se-
cretions have been cleared, many people feel
more energetic. For people who are challenged
by paralysis due to either stroke or spinal cord
injury and are wheelchair-bound, energy levels
may seem higher when they move from bed to
their wheelchairs. Physical intimacy for peo-
ple who require the use of wheelchairs is often
more easily undertaken while they are in their
chairs rather than in bed because the chair pro-
vides both physical and emotional support (a
person may feel more confi dent in the wheel-
chair), and offers more mobility than the bed.
People on kidney dialysis usually un-
dergo the procedure three days a week. Usu-
ally people will experience a bit more energy
on the morning of the second day after di-
alysis (Camsari et al., 1999; Reynolds &
Postlethwaite, 1996; Uttley, 1996). Those
undergoing chemotherapy for cancer also
have breaks between treatments during which
their body recovers from the side effects of
the chemotherapy. The days just before the
next administration of chemotherapy are often
days of higher energy (Burt, 1995; Hughes,
2000; Wood & Tombrink, 1983). Health so-
cial workers aware of the relationship between
treatment and energy level are better able to
help couples preserve the sense of normalcy
achieved when they are able to resume being
physically intimate.
People with human immunodefi ciency
virus (HIV) often have few symptoms in the
early stages of their infections. Medications
that inhibit the growth of the virus may present
side effects, such as fatigue and some gastric
complaints that may diminish sexual vibrancy
(Roak, Webster, Darrow, & Stempel, 2005).
The challenge for people with HIV is integrat-
ing harm-reduction practices into their sexual
routines to limit the chance that they will in-
fect others. The use of barriers, including con-
doms for men, dental dams for women, and
spermicidal preparations, requires a thoughtful
and planned approach to sexual activity.
Impact of Complications
From Medications
Medicines that affect sexual functioning are
said to have sexual side effects. Medications
can disrupt any of the phases of sexual re-
sponse (Dickman, 2003; Kaplan, 1983).
Because medical illness and traumatic in-
jury can cause mood disorders, patients may
be prescribed antidepressant or anxiolytic
medications. Antidepressant medications may
diminish sexual desire. Men who experience
erectile dysfunction due to prostate cancer,
diabetes, or cardiovascular disease may expe-
rience depression in response to their inability
to achieve an erection. The treatment of pros-
tate cancer, diabetes, and cardiovascular dis-
ease may include the prescription of additional
medications, such as hormonal treatment and
antihypertensive medications, which can di-
minish desire, cause erectile dysfunction, and
diminish the intensity of orgasm. The inclusion
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362 Health Social Work Practice: A Spectrum of Critical Considerations
of antidepressant medication to the list that
may inhibit sexual desire may cause men to feel
sexually “shut down.” Although erectile dys-
function medications can help a man achieve
higher-quality erections, and thus rekindle his
desire, such medications cannot improve the
quality of orgasms that has been impaired by
other medications or nerve damage.
Like men, women can experience depres-
sion in reaction to cancer, diabetes, and cardio-
vascular disease. This depression compounds
the impact of illness on the body’s ability to
function sexually. Chemotherapy induces per-
manent menopause in women ages 35 to 40
years in about half of cases. Chemotherapy-
induced menopause occurs about 70% of the
time in women ages 40 to 45 years and 80%
of the time in women between the ages of 45
and 50 (Poniatowski, Grimm, & Cohen, 2001).
Transient menopause is much more common.
Some gynecological cancers require remov-
ing a woman’s ovaries, a procedure called an
oopherectomy (Schover, 1997). The treatment
for breast cancer that is estrogen-receptor pos-
itive can lead to early menopause in women
(Chen et al., 2004; Schover, 1997, 1999). By
virtue of their effects on estrogen production
and metabolism, these treatments may affect
vaginal lubrication and the elasticity of the
vaginal walls.
Most antidepressants, beta blockers, and
antihypertensive medications cause problems
in women similar to those in men (Dickman,
2003; Schover, 2000). Diminished desire, loss
of ability to lubricate naturally, and dimin-
ished quality of orgasm have been reported
by women who are taking these medications.
Currently no widely accepted treatment for fe-
male sexual dysfunction has been developed
that appreciably improves women’s response
to stimulation. Some herbal combinations de-
pend on plant estrogens to improve a woman’s
sexual functioning (Rowland & Tai, 2003).
These preparations come as a salve to be ap-
plied directly to the vaginal wall and clitoris.
Some of these preparations have a mild irri-
tant that draws blood to the genitals, and others
contain progesterone. The latter come either in
a salve form applied to the abdomen or in a
ring-shaped vaginal insert that slowly releases
hormones. It should be cautioned, however,
that none of these methods has approval from
the Food and Drug Administration, and health
social workers should refer patients who are
contemplating using these approaches to their
physicians.
Health social workers should ensure that
patients are aware of the sexual side effects
of their medications and medical regimes
and feel empowered to talk to their physi-
cians about their concerns. This is important
even if no viable alternatives to the prescribed
medications are available. When patients are
able to mourn the losses that illness, injury,
and treatment cause, they feel more in control
of their conditions. Requesting erectile dys-
function medications or asking a physician
to revisit the issue of hormonal replacement
or enhancement requires self-advocacy. An
important role of health social workers is to
help people learn how to communicate with
their physicians about sexual issues. At times,
role-playing can be an effective method to help
people practice new ways of communicating
in stressful situations.
Sexual Rehabilitation of People With
Medical Illness or Traumatic Injuries
Sex therapy addresses pervasive problems and
obstacles to physical intimacy that may be
psychogenic or emotional in nature. The goal
of sex therapy is to help patients establish a
new, improved baseline of functioning. Sexual
rehabilitation counseling also focuses on the
impact of medical illness or injury on sexual
functioning and intimacy. Its goal is to help
individuals restore or return to their baseline
functioning or to accommodate a changed
baseline of functioning (Gallo-Silver, 2000).
Sexual rehabilitation counseling includes a
number of cognitive and behavioral interven-
tions, including safe-touch exercises, the pro-
longed kiss, “dressing” for bed in new pajamas,
self-exploration and self-pleasuring exercises,
sensate focus or sensual massage exercises,
and altering coital positions to accommodate
a changed body (Gallo-Silver & Parsonnet,
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Human Sexual Health 363
2001; Schover, 2000). Safe-touch exercises
and body mapping are consistent with the
concept that physical intimacy and sexuality
have their foundations in touch. Sexual reha-
bilitation counseling may employ a series of
safe-touch exercises, which were devised to
help people who were sexually traumatized
by rape, incest, and childhood sexual abuse
regain comfort with being touched (Maltz,
2003). Several of these exercises can be use-
ful in helping couples challenged by illness or
injury. Back-writing involves having the per-
son with the medical challenge trace a word on
the back of his partner using the tip of his fi n-
ger. The person traces the word over and over
again until the partner is able to identify the
word correctly. The exercise is then reversed
with the partner tracing a word on the back of
the person with the medical challenge.
Another exercise is a variation of the child’s
game Red-Light-Green-Light, in which the
person with the medical challenge gives cues
to her partner about where on her body it
feels good to be touched (green light), which
touches are not comfortable (red light), and
which touches are okay at times (yellow light).
Body mapping is based on a similar concept.
An outline of the body is drawn in green, red,
and yellow, and the partner then has a map of
the parts of the body where the person with the
medical challenge enjoys being touched.
The prolonged kiss and the second kiss
exercises recognize that couples under duress
due to medical problems may kiss each other
in a quick, almost perfunctory and, at times,
parental manner. The second kiss exercise is
based on the premise that the couple will be
more aware and connected to each other if they
kiss a second time. Typically, the second kiss
is held for a longer period of time, and the cou-
ple tends to feel greater emotional resonance
from the second kiss.
Self-exploration and self-pleasuring, or
masturbation, are basic behaviors to discover
enjoyable sensations (Lukianowicz, 1960;
Rowan, 2000). Although many cultures and
religions prohibit masturbation, it remains a
primary way in which men and women dis-
cover their sexuality and orgasmic capabilities.
Sexual rehabilitation counseling gives people
with medical challenges permission to explore
and regain comfort with their changed bodies.
Self-pleasuring exercises are included as part
of bathing (Gallo-Silver & Parsonnet, 2001).
The exercises are then duplicated in a bed or
chair. Ultimately the person with the medical
challenge instructs the partner on what feels
good and how to best stimulate her body.
From this foundation, couples frequently
turn to sensate focus exercises. Sensate focus
exercises are a series of sensual massage tech-
niques that help couples whose sexual activity
has been interrupted by illness or injury. De-
veloped by Masters and Johnson (1970), the
exercises avoid direct genital massage until
the couple has become more comfortable ca-
ressing other parts of the body (Kaplan, 1974,
1987; Masters & Johnson, 1970). Altering co-
ital positions to avoid injured or “red-light”
areas of the body helps people with medical
challenges conserve energy and helps couples
feel safe and secure so they can enjoy physical
intimacy with each another.
Sexual rehabilitation exercises have a self-
help aspect to them as well. Instructional texts
provide easy-to-follow, systematic instructions
with drawings that help couples understand
exercises. Many of these materials focus on
opposite-sex couples but can be easily adapted
for same-sex couples.
Creating Sex-Positive
Environments of Care
The health social worker is a problem solver.
Privacy is a major obstacle to physical inti-
macy in institutional settings. Policies and
procedures that insist that hospital room doors
remain open at all times are changed when pa-
tients have a communicable infection or need
protection, such as when they are recovering
from a bone marrow or organ transplant. Poli-
cies and procedures that frown on adult visitors
climbing into bed with adult patients are not
used on pediatric fl oors, where it is routine for
parents and their children to be in bed together.
Discomfort about physical displays of affection
also changes on obstetric units, on which the
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364 Health Social Work Practice: A Spectrum of Critical Considerations
staff helps to provide a romantic setting for new
parents. The contradiction between how inti-
macy is fostered in these settings for everyone
but adults with medical illnesses or injuries is
not always apparent to other health profession-
als. Health social workers advocate for “bending
the rules” on an individual, case-by-case basis.
Often, educating the staff about the patient’s
and partner’s needs for privacy emphasizes the
couple’s love and devotion for one another. So-
cial workers can defi ne a couple’s privacy as
part of a supportive-care plan that addresses
the symptoms of loneliness and sadness about
separation. At times, the health social worker
is able to change policy with a creative idea
that helps coprofessionals understand patients’
needs for privacy and physical contact.
Hospital libraries for patients and profes-
sionals generally contain few, if any, books
on physical intimacy and sexuality. Health
social workers can advocate for enriching the
libraries by including these materials. Social
workers who perform home visits can provide
a list of books or pamphlets that can help pa-
tients and their partners remain physically
close. People with chronic and acute illness
or injuries do not have routine access to urol-
ogists and gynecologists with a knowledge
base in sexual diffi culties. Social workers can
address these gaps by developing educational
programs to which they invite local experts
to meet with patients and their partners in a
group setting.
CONCLUSION
Issues of sexuality and physical intimacy are
greatly affected by cultural norms. It is beyond
the scope of this chapter to explore these issues
in detail, but it is important to consider how
cultural norms change depending on a mixture
of scientifi c discovery and political infl uences.
Homosexuality was once considered a psy-
chiatric illness by many in the mental health
professions. Physicians once believed that mas-
turbation caused a host of physical and psycho-
logical conditions and that the only “healthy”
reason for sexual intercourse was procreation.
Specialists in child abuse and health-care pro-
fessionals once believed that childhood sexual
abuse rarely, if ever, occurred. Transgender-
ism still is not widely understood, and debates
are ongoing about etiology and whether it is a
condition requiring a DSM diagnosis. Nonethe-
less, the changes in attitudes about these and
other sexual issues are by no means universal.
The ideas of health-care professionals and the
community often are based on religious beliefs,
cultural conventions at the time, beliefs of the
person’s specifi c ethnic or cultural group, and
the basic scientifi c understanding of people as
sexual beings. All of these factors may change,
become more widely infl uential, or lose infl u-
ence depending on the political and cultural cli-
mate at the time. Nonetheless, sexual issues are
quintessentially human issues. When, by reason
of culture, politics, or ignorance, the human as-
pects of sexuality are overlooked or replaced by
viewing it as a completely biological function,
an important aspect of quality of life is dimin-
ished. People challenged by medical illnesses
and injuries suffer many losses, among them a
sense of being entitled to be sexual beings. One
of the health social worker’s roles is to humanize
CASE EXAMPLE
The health social worker reports in
oncology multidisciplinary rounds that
patients frequently want more “alone” time
with their partners. Even when patients’
doors are closed, staff members sometimes
enter without knocking or while they are
knocking. The social worker points out
that health-care staff are used to looking at
closed doors for special instructions related
to protecting the patient and others from
infection. The social worker proposes that
when a partner is visiting, the patient or
partner could place a cardboard cutout of a
cupid on the door so that the staff would be
aware that the partner was with the patient
and wanted privacy. The staff institutes the
change, and the social worker’s suggestion
becomes part of the facility’s marketing
campaign.
ch14.indd 364ch14.indd 364 9/22/11 5:24 PM9/22/11 5:24 PM
Human Sexual Health 365
the health-care experience. Helping medically ill
and injured patients reclaim their ability to con-
nect with their loved ones, communicate their
love physically, receive the loving touch of oth-
ers, and feel pleasurable physical sensations is a
part of humanizing the health-care environment.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 14.1
Your sibling or cousin tells you that he is
transgendered. Write down how you would
feel about learning this. What would be the
impact on your relationship with him? What
would be the impact on your family? Would
your sibling’s/cousin’s partner of choice be
welcomed by you and by the family?
Learning Exercise 14.2
Identify one policy or procedure at your current
internship or practice setting that is an obsta-
cle to physical intimacy. Develop a strategy to
change the policy. With whom must you meet
with to begin this process? What would be the
best environment for this discussion: a private
meeting, team meeting, or rounds? How many
alternatives can you devise that preserve some
of the policy but enhance a person’s opportuni-
ties for physical intimacy?
Learning Exercise 14.3
Write down your own sexual history. Read
it silently to yourself. How diffi cult would it
be to share this information with a stranger?
What would a stranger need to do, say, or
demonstrate to help you feel more comfort-
able with a discussion of your history? Share
your thoughts with the class either in a small
or a large group.
Learning Exercise 14.4
With what type of client or patient would you
feel most comfortable discussing sexual issues,
and why? With what type of client or patient
would you feel most uncomfortable discussing
sexual issues, and why?
SUGGESTED RESOURCES
Professional Education
American Association of Sex Educators,
Counselors and Therapists (ASSECT)—
www.assect.org
ASSECT sponsors and provides continu-
ing education credits through a num-
ber of training seminars and workshops
throughout the United States for profes-
sionals at various levels of skill develop-
ment.
LGBT Communities Education
Advocates for Youth (LGBT Adoles-
cents)—www.advocatesforyouth.org
Family Caregiver Alliance (LGBT frequently
asked questions)—www.caregiver.org
LAMBDA (LGBT Adults)—www.lambda
.org
Illness- or Condition-Specifi c
Sex Education
American Association of Kidney Patients—
www.aakp.org
American Cancer Society—www.cancer
.org
American Heart Association—www
.americanheart.org
American Lung Association—www.lungusa
.org
American Social Health Association (Sexu-
ally Transmitted Diseases, Hepatitis,
HIV/AIDS)—www.ashastd.org
American Spinal Injury Association—
www.asia-spinalinjury.org/
Instructional Books for Professionals
and Patients/Partners
Altman, C. (1997). You can be your own
sex therapist. San Francisco, CA: Caper.
Britton, P. (2005). The art of sex coaching.
New York, NY: Norton.
ch14.indd 365ch14.indd 365 9/22/11 5:24 PM9/22/11 5:24 PM
http://www.assect.org
http://www.caregiver.org
http://www.lambda.org
http://www.cancer.org
http://www.lungusa.org
http://www.ashastd.org
http://www.asia-spinalinjury.org
http://www.lambda.org
http://www.cancer.org
http://www.lungusa.org
http://www.americanheart.org
http://www.americanheart.org
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PART II I
Health Social Work: Selected
Areas of Practice
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373
15
Social Work With Children and
Adolescents With Medical
Conditions
NANCY BOYD WEBB AND ROSE A. BARTONE
Utilizing a strengths perspective that acknowl-
edges the stress and trauma factors associated
with medical conditions and their treatment,
this chapter illustrates various methods social
workers can use to help children and adoles-
cents who have serious and chronic medical
conditions. The chapter reviews the knowledge
base needed by social workers to collaborate
effectively with medical and school personnel
as well as methods for helping the child and
family members (with family defi ned broadly)
understand and cope with the numerous stress-
ors associated with the youth’s medical real-
ity. Detailed examples of both hospital-based
social work interventions and those occurring
while the child is living at home illustrate help-
ing methods at different stages of illness. Work
with the family is an essential part of helping
medically compromised children, as is trans-
disciplinary collaboration. This chapter illus-
trates the necessity and value of collaborative
teamwork, often initiated by the social worker
who interfaces with schools and other commu-
nity organizations in addition to hospital-based
medical practitioners for the purpose of provid-
ing competent, comprehensive, and compas-
sionate care for youth with medical conditions.
Chapter Objectives
• Understand the prevalence and scope of
children’s health conditions.
• Understand the infl uence of a child’s age and
level of development on the attribution of
meaning in medical diagnosis and prognosis.
• Recognize the necessary collaboration
among the family, school, and medical set-
ting in providing care to youth with medical
conditions.
• Learn of interventions that social workers
can employ to help children with medical
conditions in the hospital, home, and com-
munity.
• Explore palliative care and end-of-life is-
sues for the child, family, and interdisci-
plinary team.
• Understand issues and challenges for the
social worker dealing with youth who have
medical conditions, including vicarious
traumatization.
• Discover resources in the community and
on the Internet to help children and families
challenged by medical conditions.
PREVALENCE AND
SCOPE OF CHILDREN’S
HEALTH PROBLEMS
Children’s health problems range from those
that cause pain and discomfort for a few days
(such as the chicken pox or the fl u) to others
that require ongoing monitoring and periodic
hospitalizations over the course of the child’s
life (such as cancer or diabetes; see Table 15.1).
This section focuses on the most prevalent
serious childhood conditions, indicating the
frequency of each, the course of each illness,
and the typical range of treatments.
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374 Health Social Work: Selected Areas of Practice
Children with special health-care needs
comprise 12.8% of all children younger than
18 years in the United States, and half a mil-
lion young adults with special health-care
needs reach their 18th birthdays each year
(Oftedahl, Benedict, & Katcher 2004). Special
health-care needs may result from premature
birth, illness, injury, or congenital causes.
DEVELOPMENTAL
CONSIDERATIONS AND
CHILD AND FAMILY
ATTRIBUTION OF MEANING
TO MEDICAL DIAGNOSES
The formal diagnosis of a medical condition
may occur unexpectedly or following a series
of symptoms or problems that have disturbed
the child and family for a period of weeks,
months, or years. Parents may have suspected
that something was seriously wrong and may
have awaited a formal diagnosis with great
trepidation. Other times, families may down-
play a child’s symptoms and remain unaware
of the possible signifi cance of the child’s com-
plaints.
A diagnosis gives parents and youth a rea-
son about the reason for the complaints but
also may confer a reality requiring substantial
changes in the lifestyle of the family and the
child for many years or even a lifetime. Often
the diagnosis brings a cruel awareness that
things will never again be the same as they
have been. The knowledge that a child has a
serious medical condition results in a shock-
ing and major loss for all concerned, who real-
ize that they will need to fi nd a way to adapt
and cope with this new reality, which will im-
pact the lives of all the family members (see
Chapter 13 for a full discussion of families and
health).
Table 15.1 Most Frequent Pediatric Illnesses in the United States
Medical
Condition Prevalence
Usual Course of
Illness Range of Treatment
Asthma 6.7 million U.S. children under 18 years;
highest among children 11 to 17 (Akinbami,
Moorman, Garbe, & Sondik, 2009)
Lifelong Short-acting relievers
Long-acting inhalers
Environmental control
Clinical trials
Cancer Approximately 12,400 American children
under the age of 20 (Mariotto et al., 2009)
Sudden onset Chemotherapy
Steroids
Antinausea medications
Radiation therapy
Surgery
Clinical trials
Diabetes Type 1 is more prevalent in ages 0 to 19,
affecting 182 per 100,000 U.S. children
Type 2 is more prevalent in ages 10 to 19,
affecting 174 per 100,000 U.S. children
(SEARCH for Diabetes in Youth Study,
2006)
Type 1 (juvenile onset)
autoimmune; develops
under 21 years
Type 2
nonautoimmune;
develops in overweight
children under 21
All types: diet and exercise
Type 1: insulin
Type 2: may require insulin
Juvenile
rheumatoid
arthritis
1.6–86.1 per 100,000 U.S. children
(Helmick et al., 2008)
Lifelong; degenerative Steroids
Obesity 16.9% of U.S. children ages 2 to 19
(Ogden, Carroll, Curtin, Lamb, &
Flegal, 2010)
Genetic; lifestyle;
cultural; medical
conditions
Diet
Exercise
Medications
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Social Work With Children and Adolescents With Medical Conditions 375
Researchers who have studied the family im-
pact of medical diagnoses propose a four-stage
model to describe the typical adjustment to a
youth’s medical condition. According to Clarke-
Steffen (1993; Dell Clark, 2010), the stages are:
Stage 1: First clue. The family and child
begin to have some awareness that
“something is defi nitely wrong.”
Stage 2: Limbo. The family and child react
to the diagnosis with varying degrees of
uncertainty and feelings of vulnerability.
Stage 3: Reconstructing meaning. The fam-
ily reorganizes its lifestyle and routines
to manage the requirements of the thera-
peutic program.
Stage 4: New normal. The family and child
operate with a shared tolerance of the
new routines and uncertainties, even
though this state differs from their prior,
“normal” experiences.
Although this model seems to progress
logically toward an end point of acceptance,
all families do not move consistently through
the stages. Some families persist in denial of
the diagnosis and may insist on additional
tests and procedures. Likewise, the unpre-
dictability of the child’s illness may cause
relapses and impair coping even when all
are doing their best to comply with medical
regimens.
The case of Carl, age 13, provides an ex-
ample of a family’s and child’s positive and
ideal adjustment to the diagnosis of asthma.
It is presented as an ideal situation. Asthma is
the most common chronic childhood illness,
affecting over 6 million children younger than
18 years in the United States (Brown, Daly,
& Rickel, 2007; Clay, 2004). It causes more
school absences per year than any other chronic
illness and is the third most common reason
for hospitalization among children younger
than 15 years (Taylor & Newacheck, 1992).
Social workers and others who deal with chil-
dren with medical conditions such as asthma
must be aware that the youth’s friends will no-
tice and sometimes worry about their friend’s
need to use an inhaler or other treatments. The
case illustrates a successful adaptation of a
child and family who were motivated to make
their personal experiences public in the hope
CASE EXAMPLE: Child with Asthma,
Carl, Age 13
This summary is based on a preadolescent
boy’s account of his reaction to receiving a
diagnosis of asthma when he was 3 years
old and his experiences growing up with
the disease (Huegel, 1998). He documents
his daily need for medications and frequent
need to confer with his physician. Despite
his condition, Carl manages to engage in
sports and other school activities, includ-
ing gym class. His mother has been a very
positive presence in Carl’s life and started a
support group for parents and children with
asthma in their community.
Carl reports that he has been responsible
for taking his own daily medications (with
parental monitoring) since the fourth grade.
He makes it very clear that he lives within
the ongoing constraints of his asthma and
prepares himself for a possible attack by
wearing a Medic Alert bracelet and carrying
his medications and an EpiPen in a pouch.
When he participates in sports, his physical
education teachers and coaches are informed
that he will use an inhaler before playing vig-
orous games and that he may have to sit out
part of the game. He attends sleep-away camp
for 3 weeks every summer, well supplied with
instructions for counselors and with extra
medications and inhalers to permit him to
carry out the daily activities of camp life.
Carl has helped other young people with
asthma, both by talking with and encourag-
ing them and by writing his personal story.
He makes it very clear that although he does
not like living with asthma, he is determined
not to let it interfere with his success in life.
This positive attitude represents an ideal to
which others may aspire.
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376 Health Social Work: Selected Areas of Practice
that it might inspire others to maintain hope
despite the considerable necessary adaptations
required by the disease (Huegel, 1998).
TYPICAL RESPONSES
OF CHILDREN AND
THEIR PARENTS WHEN
DEALING WITH A CHILD’S
MEDICAL CONDITION
Children and families react very differently
to a serious medical diagnosis. Although Carl
reported that when he was diagnosed with
asthma at age 3, he was too young to compre-
hend the meaning of his condition, an older
child in the same situation might assume that
the diagnosis will lead to certain death. This
was the case for a 10-year-old girl whose
mother told her at age 7 that she had diabetes.
She burst into tears, and even after her parents
convinced her that she was not going to die,
she remained convinced that her life was going
to change completely (Krementz, 1992; Webb,
2009).
Because children take their cues from the
adults around them, it is important for social
workers to be informed about various ill-
nesses so that they in turn can help to inform
parents. Often parents may not accurately re-
call the doctor’s recommendations and prog-
nostic statements about the management of
illness and its likely course. This is why writ-
ten explanations and guidelines are helpful,
together with an offer by the social worker to
be available to answer future questions about
the illness and its management or to act as
a go-between with other providers. It is also
critical for the social worker to maintain a
relationship with the patient and family to
ensure that they understand instructions for
medications, diet, and follow-up visits. The
resource list at the end of this chapter pro-
vides some Web sites with helpful informa-
tion about the most typical chronic medical
conditions.
It is understandable that diagnosis of a
medical condition inevitably arouses questions
and anxiety for parents, which may not be ver-
balized to the provider. Parents may wonder
why their child became ill and in some cases
may feel responsible, especially if there is a
genetic component to the disease. They may
try to present a positive front to the child de-
spite their mixed feelings of anger, worry, and
loss. However, the child usually senses the par-
ents’ feelings. When parents feel overwhelmed
and anxious, it is helpful for them to become
involved in individual or group counseling to
help mourn their losses and feel more able to
support their children. Groups for the chil-
dren also can be very helpful, as are Internet
contacts with other parents and children con-
fronting similar medical challenges. Internet
support and information groups moderated by
social workers trained in the area of a specifi c
disorder can be helpful resources for those
who live in rural areas or at great distance
from the treatment centers; for example, see:
http://healthfi nder.gov/scripts/SearchContext
.asp?topic=833§ion=3
Young people may be more focused on
their current lives than on the future ramifi –
cations of their illnesses. Nonetheless, they
will need to understand the details of their
daily medical routines that may involve tak-
ing medications and making periodic offi ce
or hospital visits for checkups that some-
times will require regular blood work and
other tests. It is common for young people
to resist all or some of these procedures, and
parents will need help in dealing fi rmly with
this resistance in a manner that emphasizes
its necessity. Goodman (2007) presents an
account of a boy’s transition from extreme
distress when anticipating upcoming treat-
ments for his cancer to a subsequent attitude
of acceptance and wanting to help other kids
facing procedures such as spinal taps. This
change was due at least partly to his therapy
with a sympathetic art therapist, who encour-
aged him to express his feelings symbolically
through drawing. Support groups specifi c
to certain medical conditions may be very
helpful for children who, without such con-
tacts, would feel very isolated and discour-
aged about their conditions (see the chapter
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http://healthfi nder.gov/scripts/SearchContext.asp?topic=833§ion=3
http://healthfi nder.gov/scripts/SearchContext.asp?topic=833§ion=3
Social Work With Children and Adolescents With Medical Conditions 377
resource list for a listing of organizations that
sponsor specialized support groups).
Although living with a medical condition
brings with it stressors and constraints on ac-
tivities, it is important that young people do not
identify themselves primarily in terms of their
diagnoses. Some adolescent survivors of can-
cer and their parents report positive attitudes
a year after supportive treatment (Barakat,
Alderfer, & Kazak, 2006). This phenomenon,
called posttraumatic growth, refers to posi-
tive changes in views about oneself, others,
and plans for the future following a medical
diagnosis. Although this may not occur in all
cases, it does provide convincing evidence that
a medical crisis need not bring with it a legacy
of negative consequences.
COLLABORATION AMONG
FAMILY, SCHOOL, AND
MEDICAL SETTING IN
CARING FOR YOUTH WITH
MEDICAL CONDITIONS
Because children live in worlds that include
networks of school, community, and family
members, the social worker needs to facili-
tate connections with these networks after
a medical diagnosis. Confi dentiality always
must be observed, and written permission
from the parent should be obtained before
sharing any medical information with the
school or others. The Health Insurance Por-
tability and Accountability Act of 1996 (U.S.
Department of Health and Human Services,
n.d.) provides legal protection for the confi –
dentiality of medical information. Although
parents may want school personnel to be in-
formed of a child’s diagnosis, it is advisable
for parents to refrain from disclosing details
of the medical condition because what they
tell the school becomes part of the perma-
nent school record. The school nurse is piv-
otal in coordinating the child’s medical care
at school. The social worker, parents, stu-
dent, and nurse can collaborate on care while
protecting the privacy of the child’s medical
information.
Educating any child with a chronic or acute
medical condition is a diffi cult task for all
involved, especially the child. However, edu-
cating a child with cancer or other diagnosis
that is life threatening presents special chal-
lenges. At diagnosis, the parents’ initial focus
likely is directed toward the child’s survival
and perhaps the cost of care. After the shock
of diagnosis abates, attention shifts to the real-
ization that treatment and its side effects may
interfere with the educational process and like-
lihood of success later in life (Keene, 2003).
Chemotherapeutic agents, radiation therapy,
and surgical interventions can affect memory
and cognitive functioning (CureSearch, 2008).
The effects of treatment may, in fact, cause a
host of impairments in cognitive and physical
functioning well into adulthood (Leukemia &
Lymphoma Society, 2007).
Treatment for brain tumors, tumors of the
eye and ear, acute lymphoblastic leukemia,
and non-Hodgkin’s lymphoma are more likely
to cause learning and memory problems be-
cause of the nature of treatment. Methotrexate;
cytosine arabinoside; brain surgery; and radia-
tion therapy to the brain, ear, or total body put
children at higher risk of learning diffi culties.
Cisplatin or carboplatin can affect hearing.
Neuropsychological testing is important to
identify learning losses so that they may be di-
agnosed in a timely manner and an appropriate
education plan can be developed. Even if ini-
tial testing is normal, it is imperative to repeat
testing at regular intervals over the school year
so that adjustments can be made to educational
plans (CureSearch, 2008).
It is crucial for social workers to understand
the legal rights of students under federal law so
that they and parents can advocate for minor
patients; see Table 15.2 for some laws that as-
sist and protect student rights. Social workers
can act both as educators and advocates in this
area. They have the opportunity to teach the
parents and school personnel about the laws
that affect a student’s rights. They also have
the chance to communicate effectively and
collaborate with those who will directly im-
pact the current life and future endeavors of
the student. The outcome of this intervention
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378 Health Social Work: Selected Areas of Practice
has the potential to positively affect the child’s
quality of life for years.
FERTILITY
Young adulthood brings many changes and
challenges. Although young people take for
granted the possibility of having children
when they wish to do so, a cancer diagnosis
may challenge that assumption. Certain che-
motherapies and high-dose radiation therapies
can cause infertility. The social worker’s role
is to provide the patient and his family with
information and resources so that they are
ready for the transition to adulthood and the
obstacles that it may bring. This is best done
early in the diagnostic period and addressed
periodically as needed through and beyond the
period of treatment.
Sperm cryopreservation and embryo freez-
ing offers the highest likelihood of success for
cancer survivors who have reached puberty.
Sperm collection is a relatively simple process.
The patient donates sperm cells by masturbat-
ing, and the sperm is then frozen and stored
for future use. Embryo freezing, while offering
the best chance at reproduction, is less likely
to happen for a female patient because an em-
bryo must be fertilized before it is frozen and
stored. Egg freezing, where mature eggs are
surgically removed, frozen, and stored, may be
a more viable option for females.
Other methods of preserving reproductive
ability are available for those who are prepu-
bescent, such as testicular tissue freezing for
males and ovarian tissue freezing for females.
The process involves removal of testicular tis-
sue surgically, which is then frozen. Females
may have part or all of the ovary surgically
removed for later use. These procedures re-
main experimental, and their costs are high
(Leukemia & Lymphoma Society, 2007).
Chapter 21 presents the special dilemmas of
young women who fi nd that they are posi-
tive for breast cancer mutations that greatly
heighten their risks for the disease.
SELECTED INTERVENTIONS
FOR HOSPITAL-BASED AND
COMMUNITY-BASED SOCIAL
WORKERS WHO HELP
YOUTH WITH MEDICAL
CONDITIONS
A young person who is hospitalized for medi-
cal treatment faces many stressors. First and
foremost is a fear of the unknown. These
young people are in unfamiliar environments
Table 15.2 Laws That Assist and Protect Student Rights
Rehabilitation Act of 1973, Section 504a Federal assistance is provided through the Department of
Education to protect against discrimination and provides services
for individuals with a physical or mental impairment in at least one
major life activity.
American with Disabilities Act (ADA) of 1990 The ADA guarantees the civil rights of a person with a disability;
see http://www.usdoj.gov/crt/ada/adahom1.htm
Individuals with Disabilities Education
Act (IDEA)a
The IDEA guarantees a free and appropriate education, including
preschool, elementary, and secondary (ages 3 to 21). An
Individualized Education Plan (IEP) is developed to assist students
to achieve their maximum potential.
Family Education and Privacy Act (FERPA) This 1974 act ensures the confi dentiality of the student’s written
record, making it available only to those with legitimate concerns
and only with the student’s express permission.
aUnder Section 504 and IDEA, colleges and universities that receive federal money are required to provide
accommodations for their students.
Source: Beyond the Cure: The Mountain You Have Climbed, National Children’s Cancer Society, Saint Louis, MO: Author,
2008.
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http://www.usdoj.gov/crt/ada/adahom1.htm
Social Work With Children and Adolescents With Medical Conditions 379
and surrounded by strangers, many of whom
subject them to painful or uncomfortable pro-
cedures. Even when a parent is present, the
child comes to realize that in this particular
setting the parent is no longer “in charge,”
and this reality may further confuse and upset
the youngster. Recognizing that their parent is
relatively helpless with very little control or
choice over what will happen to them mag-
nifi es the young person’s fears. Furthermore,
the treatment that is supposed to help often
causes pain, which can be very confusing to
very young children. Often children will fear
damage to their bodies and wonder if they will
ever be able to return home and to function
normally. A hospital can be a very scary place
for a child, and even an adolescent who under-
stands the necessity of treatment may strongly
resent having to submit to it.
Joan Lovett, a behavioral pediatrician, lists
these factors that can make a medical experi-
ence traumatic for a child (Lovett, 2010):
• Helplessness and vulnerability
• Discomfort and pain
• Confusion
• Parental distress
• Uncertainty about outcome
Social workers can help young patients and
their families cope with these psychosocial
stressors that accompany illness. Social work
interventions should include collaboration
with the family, including the patient’s sib-
lings, who often are overlooked because of the
focus on the designated patient. In addition to
the family, the social worker also gives atten-
tion to hospitalized patients and tries to ad-
dress their major concerns, including anxiety
and fear about the future.
The role of the social worker may encom-
pass using play therapy approaches and re-
hearsal to help alleviate the child’s anxieties
during various phases of the hospitalization.
Some hospitals employ child-life specialists
whose function includes preparing children
for medical procedures and interacting with
him after the procedures have been performed
to provide opportunities for mastery. Vilas
(2010) describes in detail the role of the child-
life professional in using play and expressive
therapies to assist hospitalized children. Many
of these functions are very similar to those
carried out by social workers, who typically
interact with the patient, the family, and the
medical staff to provide needed services. So-
cial work interventions may include play and
expressive therapies and anxiety management
techniques, or these interventions may be used
by other specialists with whom social workers
collaborate.
Play and Expressive Therapies
Because all children have diffi culty expressing
their emotions in words, play therapists work
with them using dolls, puppets, and a variety
of toys. The assumption of play therapy is that
when the child knows that the purpose of the
play therapist’s visit is to help with “troubles
and worries” and that it is acceptable to either
talk or play, children will use the toys to ex-
press their anxieties symbolically.
Any therapist working with children with
medical conditions (in a hospital setting, in a
school, or elsewhere in the community) will
need to have a supply of medical equipment,
such as that found in toy medical kits. This
equipment usually includes tongue depressors,
toy syringes, thermometers, blood pressure
gauges, and surgical masks. Often young chil-
dren repeatedly use a doll or puppet to act out
the procedures that they have experienced. In
the process of doing this, the play therapist en-
courages the child to verbalize the feelings and
questions of the doll patient under the assump-
tion that through this process, the children
actually are expressing their own emotions
and concerns. During this play, the therapist
can provide some educational information to
clarify any of the child’s confusion about the
medical condition and to help the child antici-
pate the future. The next interaction is typical.
Therapist: Alice, this doll has had some
pains in his tummy like yours, and he
had to go to the hospital. Would you like
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380 Health Social Work: Selected Areas of Practice
to show him what might happen so he
will be ready to go?
Child: Give me the doctor’s bag. [Takes
out a toy syringe, and speaks to the doll]
Hold out your arm; you have to get a shot.
Therapist: [Speaking for the doll] Is it
going to hurt?
Child: Yes, but only for a minute. Then you
go to sleep, and then the doctor takes out
part of your stomach.
Therapist: [Talking as the doll] How can I
eat if I don’t have a stomach?
Child: This is your punishment for eating
too much Halloween candy!
Therapist: [As doll] My mommy said I
had a big lump in my tummy. I don’t
think it came from the candy, because I
know that candy and everything we eat
gets changed into poop and comes out
when we go to the bathroom.
Child: So where did the big lump come
from?
Therapist: The doctors aren’t sure, but it’s
not from your food, and they are sure
that they can take it out, then you won’t
feel that pain anymore.
Child: [To doll] Okay. You can wake up
now, and you can go home soon.
Therapist: You will have to come back for
checkups later, so we can be sure you are
okay, but you will be able to go back to
school soon and do your regular activities.
This brief excerpt demonstrates how play ther-
apy can help clarify points of confusion and
misinformation while also permitting the child
to express some fears.
Social workers and other professionals
can use drawings and board games with older
children for a similar purpose in play therapy.
Goodman (2007) and Webb (2009) discuss a
drawing by a boy taking prednisone who drew
a cactus family in which the needles of the cac-
tus represented the frequent injections he re-
ceived. Play therapy also can be effective using
the Milton Bradley board game Operation.
For example, with a 10-year-old girl whose
mother was terminally ill, the game provided
a wonderful stimulus for a play therapist to en-
gage the girl in a discussion (through playing
the game) about the doctors’ inability to help
(Webb, 2002). See Hart and Rollins (2011) for
a complete overview of play activities appro-
priate for children with medical conditions.
Most play and expressive therapy methods
can be used on an inpatient or an outpatient
basis. Some hospitals have play therapy rooms
that are equipped with a variety of toys. When
a child is ambulatory, the therapist will escort
the child to the play therapy room for a ses-
sion. Other times, if the child is confi ned to
bed, the play therapist may wheel a cart with
a variety of toys into the child’s room and in-
vite the child to pick a toy. Some hospitals also
employ music therapists, who ask children to
choose from a variety of instruments and then
to make up their own words to a familiar song,
such as “The Wheels on the Bus.” An example
of music therapy with a 7-year-old boy in-
volved playing scary music to chase away the
monsters that were interfering with his sleep.
After the boy thought the monsters had left,
the therapist played and sung a gentle lullaby,
soothing the child and enabling him to fall
asleep peacefully (Loewy & Stewart, 2004).
The power of play therapy rests in its ability
to engage children symbolically with a situation
that is similar to their own and to reveal and
discuss related feelings without requiring chil-
dren to identify these feelings as their own. It is
possible to work out solutions with dolls or with
drawings or music, and children then can gen-
eralize these solutions to their own situations.
Anxiety Management Techniques
Although play therapy methods may be in-
trinsically relaxing to children, at times it may
be appropriate and more effective to employ
specifi c methods that are intended to reduce
anxiety. Some of these techniques include:
• Breathing exercises
• Self-control methods, such as “Stop Sign”
and “Change the Channel”
• Safe-place imagery
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Social Work With Children and Adolescents With Medical Conditions 381
Breathing Exercises
Although breathing slowly and counting
one’s breaths does help to calm the body,
most children fi nd it boring merely to focus
on their breathing. Therefore, creative play
therapists and others have created methods to
help children engage in deliberate breathing
exercises while still having fun. For example,
the therapist asks children to pretend that they
are blowing bubbles, using a wand and a jar
of bubble mixture. While also pretending to
blow bubbles, the therapist engages the child
in blowing a series of pretend bubbles and
talks about their color and size. After a few
minutes of this exercise, the child may feel
calmer.
Self-Control Methods
Two easy self-control exercises entail cogni-
tive therapy methods that begin with an ex-
planation to the child that everyone’s head is
like a television set. The social worker can
say to patients, “Lots of pictures go through
your head, and some are nice pictures and
some are not nice and may be even scary or
terrible.” The children are told that they can
be the boss of what goes on in their own
head. To do this, they can learn to “change
the channel” if they do not like the pictures in
their head. The therapist can then say, “Think
of and put up a picture of a stop sign in the
front of your head. This means that the bad
pictures have to stop.
Next, the social worker instructs children
to close their eyes and think of a place, ei-
ther real or imaginary, where they can go to
feel totally safe and where nothing bad or
scary can happen to them. The therapist asks
them to think about how it looks, smells,
feels, and sounds. After a few moments, the
social worker asks the children to open her
eyes and draw the safe place. It is important
for the youngsters to take time to draw all
the details. When the drawing is complete,
the social worker refers to it as “your own
safe place where no one can harm or hurt
you.” The social worker can then tell the
children to use this safe place when they are
worried or upset after fi rst thinking about
the stop sign to push away worries and scary
pictures. It is helpful for the social worker to
emphasize that this is within the children’s
control. The social worker may say: “Some
kids like to repeat to themselves this state-
ment when they put up the stop sign and
change the channel: ‘I’m the boss of me!’”
These cognitive therapy–related activities
encourage children’s own natural resiliency.
They do not take away the pain of the medi-
cal condition or the need for ongoing proce-
dures, but they do provide an alternative to
feeling helpless and vulnerable.
PALLIATIVE CARE AND
END-OF-LIFE ISSUES
Approximately 53,000 children die each year
in the United States, and at least 400,000 more
live every day with chronic, life-threatening
conditions (Friebert & Huff, 2009, p. 9).
Currently only about 10% to 20% of dying
children receive hospice services, and a simi-
lar number of children with life-threatening
conditions receive palliative care support and
interventions (Friebert & Huff, 2009). See
Table 15.3 for more information about the pri-
mary causes of death for 1- to 19-year-olds.
For adults, hospice care is offered once the
medical team has determined that the patient
has six or fewer months to live. However,
this time frame is less relevant for children,
whose course of illness is more diffi cult to
predict. In fact, only 20% of American hos-
pice programs offer services to children and
their parents (Corr, 2009), which may repre-
sent a desire to continue treatments for chil-
dren and to attempt to cure their conditions
until the time of death. Hospice and palliative
care programs for children slowly are gain-
ing favor among the medical community, and
families are becoming more open to receiving
the services. A growing number of pediatric
palliative care programs in children’s hospi-
tals have developed in recent years to “fi ll
the gap between traditional hospital care and
ch15.indd 381ch15.indd 381 9/22/11 5:24 PM9/22/11 5:24 PM
382 Health Social Work: Selected Areas of Practice
community-based hospice care” (Himelstein,
Hilden, Boldt, & Weissman, 2004, p. 17).
Working collaboratively to change the per-
ception of palliative care with children may
expedite referrals and help children to get ser-
vices sooner (Thompson, Knapp, Madden, &
Shenkman, 2009).
Hospice and pediatric palliative care share
the same goal of alleviating pain and suffer-
ing. Pain management, nursing and social
work support, pastoral care, and the ongoing
support and bereavement services provided
after the death of the patient all argue for of-
fering these services sooner rather than later.
Hospice also offers an aide in the home and
volunteer visitors to provide respite for care-
givers and greater comfort for patients. These
programs serve patients well because they
give them nonfamily outlets for talking about
their impending death, something that patients
often have trouble doing with loved ones (see
Chapters 22 and 23 for more details).
When no further treatment options are
available for a child, it may be devastating to
all concerned, including caregivers, doctors,
nurses, social workers, child-life staff, and even
auxiliary staff who take vital signs and clean
hospital rooms. Social workers can intervene
by establishing a link among the patient, fam-
ily, and care team early on and create a smooth
transition for patients and their families facing
palliative and end-of-life care needs.
It is diffi cult to acknowledge or witness
both the sudden death of a young person in
the emergency room or the steady deterio-
ration of a child or young person after the
medical team has come to the conclusion that
there is nothing further it can do to help. At
that point, the goal becomes one of manag-
ing pain and helping the family plan for the
future. Doing this may involve a referral to a
hospice program or a spiritual counselor who
can meet with family members separately and
as a group. Social workers can engage termi-
nally ill children in a life-review process that
may include journal writing and a plan for the
distribution of the youth’s special possessions.
This needs to happen after the prognosis has
been discussed and before the child is intu-
bated or heavily sedated, as may occur in the
later stages of illness.
A hospital-based social worker may play a
critical role in all these processes, which also
entail collaboration with other professionals
involved with the child and the family. Often
the professionals who work together to help
children and families at the end of life refer
to themselves as the “palliative care team.”
They may include the physician, the nurses,
the chaplain, and the medical social worker
and child-life specialist. A physician whose
specialty comprises both ethics and pallia-
tive care has stated that “the transition to pal-
liative care involves the exchange of curative
goals for comfort measures” (Finn, 2006,
p. 86). This can feel like a massive shift to
the family, who may or may not have been
anticipating the ultimate decline of their child
into death.
The most complete defi nition of palliative
care comes from the National Hospice and
Palliative Care Standards (http://www.nhpco
.org/i4a/pages/index.cfm?pageid=4900). These
standards state that pediatric palliative care is
both a philosophy and an organized method for
delivering care to children with life-threatening
Table 15.3 Causes of Death in 1- to 19-Year-Olds
All Children 1–19 Years Old Children 1–19 Years Old with Chronic Health Conditions
1. Accidents 1. Malignancy
2. Assault 2. Neuromuscular
3. Malignancy 3. Cardiovascular
Source: “A Key Step in Advancing Care for America’s Children,” by S. Freibert and S. Huff, 2009, Newsline, pp. 9–13.
Retrieved from www.dcppcc.org/dp/sites/default/fi les/A%20Key%20Step%20in%20Advancing%20Care%20for%20
Americas%20Children
ch15.indd 382ch15.indd 382 9/22/11 5:24 PM9/22/11 5:24 PM
http://www.dcppcc.org/dp/sites/default/files/A%20Key%20Step%20in%20Advancing%20Care%20for%20Americas%20Children
http://www.nhpco.org/i4a/pages/index.cfm?pageid=4900
http://www.nhpco.org/i4a/pages/index.cfm?pageid=4900
http://www.dcppcc.org/dp/sites/default/files/A%20Key%20Step%20in%20Advancing%20Care%20for%20Americas%20Children
Social Work With Children and Adolescents With Medical Conditions 383
conditions. It involves effective management of
pain and other distressing symptoms together
with the provision of psychosocial and spiri-
tual care. Pediatric palliative care is planned
and delivered through the collaborative efforts
of a transdisciplinary team, including the child,
family, and caregivers, which attempts to guide
and assist the child and family in making de-
cisions that enable them to work toward their
goals in whatever time they have.
End-of-Life Care in the
Emergency Room
Some young people have serious accidents
that are life threatening and result in their
admission to the emergency room or the pe-
diatric intensive care unit. Examples of such
injuries include falls that cause massive trau-
matic head injury or car or bicycle accidents
that cause signifi cant injury that may result
in death either during or following surgery.
Families typically are shocked and may not
believe the news that their child will not re-
cover. Fortunately, emergency rooms have
established protocols for sudden bereavement
(see Heggar, 1993; Meyer, 2009). These pro-
tocols involve using clear and direct com-
munication with the parents about the fact
that the youth died despite all medical efforts
(Wind, 2009). Often the facts of the death will
have to be repeated compassionately until
families understand what happened. Many
families also benefi t from the assistance of
the hospital chaplain or other clergy at this
very diffi cult time.
The role of the social worker in situations
of sudden death may include the completion
of required paperwork and notifi cation of the
family physician, providing transportation and
other details, helping family members deal
with their feelings, and fi nding follow-up be-
reavement care. These circumstances are very
stressful for everyone, including the medi-
cal team. The social worker and others must
pay attention to their own feelings and fi nd
appropriate ways to avoid or mitigate vicari-
ous traumatization, which is discussed later in
this chapter.
End-of-Life Care in the Pediatric
Intensive Care Unit
Play therapy has been used to ease the pain of
dying children, as depicted in a moving case
example of 7-year-old Nathan, who was hos-
pitalized with a life-threatening illness (Shelby,
2010). The child enjoyed playing on his bed
with miniature castles, fi gurines, and horses
and would create play scenes involving battles
with powerful knights and invading armies. The
play therapist observed the play and made some
comments about its main themes. In Nathan’s
play, the brave men always won, and this rep-
resented his own battle and hope for survival.
In time, as Nathan grew weaker, he wanted
to play only with the horses and developed a
special relationship with one white stallion
that he said was going to escape. Soon before
his death, Nathan told the horse that he would
have to go on without him. This poignant story
illustrates how a child used play to prepare for
his own death and how the play therapist in her
role as witness gave the child the support and
understanding he needed.
Methods to Help Families and
Youth at the End of Life
The death of a young person is very hard to ac-
cept, but the reality is that children and ado-
lescents die, and social workers and others can
play an important role in making the dying pro-
cess dignifi ed and meaningful for all concerned.
Some of the methods that should be considered
in facilitating a death with dignity include:
• Acknowledging the spiritual needs of the
dying person
• Facilitating a life review and identify a legacy
• Creating meaningful rituals
• Connecting with family, friends, and com-
munity
Spiritual Needs of the Dying Person
The word spirituality refers to the universal
need to understand what lays beyond human
experience, including the meaning of life, the
ch15.indd 383ch15.indd 383 9/22/11 5:24 PM9/22/11 5:24 PM
384 Health Social Work: Selected Areas of Practice
quest for vision, and some kind of inspiration
(Thayer, 2009). Although the spiritual needs
of children may be overlooked or minimized,
professionals who work with children with
chronic illnesses have found that young peo-
ple often create personal narratives about their
unique struggles with illness and their efforts
to fi nd meaning in their experiences.
Facilitating a Life Review and
Identifying a Legacy
Children, like adults, often have the need to feel
that they have made some difference through
their actions and that others will remember
them because of some of their special qualities
or talents. It can be very self-affi rming for the
social worker to offer to help children create a
book of memories, which contains the activi-
ties and messages that they want other people
to think about when they remember them. For
some children, this may involve their accom-
plishments in sports, music, cooking, or taking
care of animals. Whatever is of special impor-
tance should be included in the children’s own
words, if possible. The social worker can in-
troduce this subject by saying that sometimes
she helps kids make a very special and per-
sonal book about their lives, and, if the child
wants to do that, they can begin by talking
about one thing about which the child is es-
pecially proud. The social worker can record
the child’s statements, make a video, or write
down what the child says. The social worker
can encourage the child to give this document
to parents or family.
Creating Meaningful Rituals
A ritual can be created to serve the needs of
terminally ill children. For those who are re-
ligious, it may involve saying a prayer and
singing a special comforting song. Often the
parents may be involved and will be able to
suggest and participate in meaningful activi-
ties with the child. For example, a child-life
music therapist helped a young patient cope
with his pain by helping him to write a song
that he used to ameliorate his discomfort. To
the tune of “Rain, Rain, Go Away,” young
Billy rewrote the words as “Pain, pain, go
away. Don’t come back another day. Little
Billy wants to play, so pain go away.” As his
pain increased, he added different stanzas to
his song. This ritual soothed the boy, and as he
lay dying the music therapist visited his bed-
side and sang him his song. It brought comfort
both to the caregivers and to his parents.
Pastoral care also can provide the family of
a dying child with the opportunity to express
their unique rituals of grief. Understanding
and being open to divergent cultural and reli-
gious ritual helps the patient and family cope
during the last stages of life.
Connecting With Family, Friends, and
Community
It is very important for parents and siblings
to have quiet, intimate times with a child who
has a life-threatening illness. These times help
parents with the anticipatory grieving process,
and they help the child feel a sense of safety
and connection. The child should be reassured
that the parents will try to see to it that the
child does not experience pain, and they may
wish to let the child know that some medica-
tions that reduce the pain also may make them
drowsy. Both the child and the family should
be encouraged to express their love for one
another with verbal assurance that they will
always remember these special moments.
ISSUES AND CHALLENGES
FOR THE MEDICAL SOCIAL
WORKER
Working on a daily basis with youth who
have medical challenges and their families is
not easy. Some young clients will have physi-
cal limitations or conditions that will affect
their lives forever, and the social worker must
fi nd a way to emphasize what the child can
achieve rather than focusing on all the limita-
tions. Many children respond favorably to this
positive approach because children usually do
not want to view themselves as having physi-
cal limitations. Autobiographies written by
chronically ill or terminally ill young people
give numerous examples of a positive frame
ch15.indd 384ch15.indd 384 9/22/11 5:24 PM9/22/11 5:24 PM
Social Work With Children and Adolescents With Medical Conditions 385
of mind that others may label as “transfor-
mational.” For example, Matthew Stepanek
(2001) wrote poems conveying his sense of
hope for the future despite his serious and ter-
minal diagnosis of muscular dystrophy.
Not all social workers will be able to func-
tion well knowing that a certain percentage of
their young clients will die over the course of
weeks or months. Although most social work
positions include a certain amount of stress,
the reality of trauma, pain, and loss pervade
the medical fi eld. This fi eld of practice clearly
makes special demands on its profession-
als and requires that they learn to function in
highly stressful environments.
Social workers have different methods for
dealing with this stress. Some take pride in
the fact that they have helped a young person
and family achieve a peaceful, dignifi ed death.
Sometimes a child or family member who ex-
presses faith in religion and belief in an after-
life makes the separation process inspirational
despite the pain.
Some pediatric care facilities encourage
members of the medical staff to attend a child’s
funeral. Typically hospitals have a protocol for
reaching out to families of deceased children.
The end-of-life helping process often involves
sharing the experience of loss with others who
also participated in providing comfort to the
child and the family. Therefore, some hospi-
tals have memorial services for staff, other
patients, and family members. The ritual of a
remembrance service is critical to helping the
staff of caregivers cope with the loss of the
patient. Children who have been in care for a
long period of time develop relationships with
their caregivers, and giving those caregivers
the opportunity to express their thoughts and
feelings helps them to grieve the loss.
Avoiding Vicarious Traumatization
The high degree of stress involved in trying
to help children and families deal with the
special circumstances of a medical condition
can be very taxing to all involved, including
the professional helpers. Research suggests
that all medical procedures are traumatizing to
children (Lovett, 2010), yet they also may be
traumatizing for practitioners.
The term vicarious traumatization refers
to the experience of the helper who identifi es
and empathizes with the physical or psycho-
logical pain of the client to the extent that the
practitioner becomes traumatized. The expres-
sion was developed in 1990 by McCain and
Pearlman to describe the impact on therapists
of working with traumatized individuals be-
cause of the empathetic engagement of thera-
pists with their clients. Often the helpers are
not aware of their own traumatization, but their
behavior and views about the world and their
work may change in a negative direction. For
example, a social worker who previously had
felt proud and enthusiastic about working in
a children’s cancer facility began to fear for
the well-being of the patients because the doc-
tors did not seem to be able to restore all of
them to their previous levels of functioning.
The social worker began to dread returning to
work on Mondays, and her family was increas-
ingly aware that she seemed irritable and angry
with them for no discernible reason. She was
exercising less, watching television more, and
drinking excessive amounts of alcohol. For-
tunately, a staff training session on the topic
of vicarious traumatization helped this social
worker realize that she had become a victim of
the condition. She made a promise to herself
that she would follow some of the guidelines
for avoiding vicarious traumatization that were
discussed in the training (Gamble, 2002; Ryan
& Cunningham, 2007; Webb, 2009). These
guidelines are:
• Create boundaries between home and work
and maintain a personal (as opposed to only
a professional) identity.
• Seek supervision from professionals who
understand the stresses of health social
work with children and families.
• Locate professional colleagues who work
in medical settings and who will agree to
meet together twice a month to discuss the
stresses and trauma of hospital work and
who will support each other through a mu-
tual debriefi ng process.
ch15.indd 385ch15.indd 385 9/22/11 5:24 PM9/22/11 5:24 PM
386 Health Social Work: Selected Areas of Practice
• Spend time with children who do not have
medical challenges to help maintain per-
spective on the wide range of typical child
and youth behavior.
• Engage in rejuvenating experiences and re-
lationships.
• Find a way to relieve stress, such as prayer,
meditation, listening to music, gardening,
talking a walk, or engaging in physical ex-
ercise.
• Accept one’s own limitations and the re-
ality that medicine cannot save everyone
from pain and untimely death.
• Take comfort in knowing that the children
and families whom the social worker helps
received the best efforts of the medical
team.
Practitioners who follow these guidelines will
be more likely to separate their work and per-
sonal lives and, as a consequence, return to
their work with a sense of optimism and hope.
CONCLUSION
The role of the social worker in dealing with
children and youth with serious medical con-
ditions is very complex and challenging. On
a daily basis, health social workers must deal
with systems (both the child’s family and
organizations such as the school) on behalf
of clients who are in pain and whose young
age makes it diffi cult for them to advocate
for themselves. The social worker attempts
to facilitate the best possible interventions to
enhance the youth’s quality of life within the
constraints and reality of the medical situation.
The social worker often serves a very im-
portant role as someone with whom the fam-
ily can discuss the implications and prognosis
of the child’s condition. A strong bond often
develops between the family and the social
worker, and this helping relationship may
serve to assist the family through many diffi –
cult phases of their child’s illness. Because of
the intensity of the situation, a degree of in-
timacy may develop that comforts the family
and permits them to focus on their child be-
cause they feel emotionally stronger by virtue
of the social worker’s assistance. By contrast,
the social worker’s empathy with the child and
the family may create an unforeseen negative
effect on the practitioner and, at times, result
in the social worker feeling a degree of trau-
matization. This work is diffi cult, and self-care
is essential for the social worker to preserve
his or her mental health.
Collaboration with other professionals is
critical in carrying out the multifaceted respon-
sibilities associated with serving youth with
medical challenges and their families. Work-
ing with a transdisciplinary team on the child’s
behalf means that the burden and responsibil-
ity is shared. However, the high level of stress
associated with daily exposure to end-of-life
issues may exhaust and deplete the emotional
resources of social workers, whose very job
makes them vulnerable to the debilitating ef-
fects of vicarious traumatization. Thus, social
workers are at risk for empathizing with the
family’s pain without addressing their personal
grief and loss related to the frequent exposure
to end-of-life realities and stressors. Hospitals
and other facilities that deal with dying patients
must acknowledge the risk for their staff and
provide training on methods for coping with
this inevitable component of medical work.
Fortunately, there are well-documented meth-
ods of self-care to prevent the phenomenon of
burnout that sometimes accompanies work in
this fi eld. The goal for health social workers
is to feel a sense of pride and achievement in
carrying out a diffi cult job in a compassionate
manner that conveys meaning and dignity to
children and families who are coping with a
serious medical condition.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 15.1
Find a partner and discuss the challenges faced
by a health social worker working with a pedi-
atric population. After these conversations, the
ch15.indd 386ch15.indd 386 9/22/11 5:24 PM9/22/11 5:24 PM
Social Work With Children and Adolescents With Medical Conditions 387
pairs should report back to the larger group
about their discussion. Sample questions to
include in this discussion are:
• What unique issues arise when working
with children in health-care settings?
• How is working with children in health-
care settings different from working with
adults?
• When working with children in health-care
settings, what would you do if a parent does
not want to disclose a diagnosis or progno-
sis to a child?
• How is working with an adolescent or
young adult different from working with a
young child?
• How can a social worker learn all the
specialized medical language to communi-
cate with one’s colleagues in other profes-
sions?
• How can a social worker respond to some-
one who thinks that health social work-
ers spend most of their time on discharge
planning?
Learning Exercise 15.2
Do you think that vicarious traumatization is
an appropriate term for describing the burnout
that some health social workers report experi-
encing? If you noticed one of your colleagues
who seemed uncharacteristically abrasive and
unable to connect effectively with patients and
their families, how could you broach the topic
and suggest that the colleague seek help? De-
scribe your personal plan to avoid vicarious
traumatization.
SUGGESTED RESOURCES
Child-Youth/Family-Related and Health-
Related Professional Organizations
American Academy of Pediatrics—www
.aap.org
American Art Therapy Association—www
.arttherapy.org
American Cancer Society—www.cancer.org/
American Medical Association—www
.ama-assn.org
American Music Therapy Association—
www.musictherapy.org
American Professional Society on the
Abuse of Children—www.apsac.org
American Psychological Association—
www.apa.org
Association for Play Therapy, Inc.— www
.a4pt.org
Association of Pediatric Oncology Social
Workers—www.aposw.org
Asthma and Allergy Foundation of America
—www.aafa.org
Brain Injury Association www.biausa.org
Children’s Neuroblastoma Cancer
Foundation—info@cncf-childcancer.org
Child Welfare League of America—www
.cwla.org
Eye Movement Desensitization and
Reprocessing International Association—
www.emdria.org
International Society for Traumatic Stress
Studies—www.istss.org
Leukemia and Lymphoma Society—www
.lls.org
Make-A-Wish Foundation—www.wish
.org/
National Association of Perinatal Social
Workers—www.napsw.org
National Association of Social Workers—
www.naswdc.org
National Childhood Cancer Foundation—
www.nccf.org
National Parent Network on Disabilities—
www.npnd.org
Starlight Starbright Children’s Foundation—
www.starbrightworld.org
Resources for Youth and Families
American Cancer Society (ACS)—www
.cancer.org
This site can provide the telephone
number of local ACS offi ces. It provides
general information related to disease and
may provide reimbursement for transpor-
tation, medicine, and medical supplies.
This organization also organizes summer
camps for children age 6 to 19.
ch15.indd 387ch15.indd 387 9/22/11 5:24 PM9/22/11 5:24 PM
http://www.cancer.org
http://www.musictherapy.org
http://www.apa.org
http://www.aposw.org
mailto:info@cncf-childcancer.org
http://www.wish.org/
http://www.napsw.org
http://www.naswdc.org
http://www.nccf.org
http://www.npnd.org
http://www.starbrightworld.org
http://www.aap.org
http://www.aap.org
http://www.ama-assn.org
http://www.ama-assn.org
http://www.a4pt.org
http://www.a4pt.org
http://www.lls.org
http://www.lls.org
http://www.wish.org/
http://www.cancer.org
http://www.cancer.org
388 Health Social Work: Selected Areas of Practice
Believe in Tomorrow—www.believeintomor
row.org
This national, nonprofi t organization
has unique programs that provide sup-
port to children and their families facing
cancer. This program offers respite vaca-
tions to families with an ill child.
Cancer Care, Inc.—www.cancercare.org
This national nonprofi t agency offers
a range of support services including
counseling to cancer patients and their
families, fi nancial assistance, and trans-
portation.
Children’s Hopes and Dreams Foundation
—www.childrenswishes.org
The foundation provides educa-
tional booklets for terminally and
chronically ill children who suffer any
kind of illness, such as cancer, cystic
fi brosis, acquired immunodefi ciency
syndrome, Hodgkin’s lymphoma, leu-
kemia, muscular dystrophy, and sickle
cell disease.
National Children’s Cancer Society (NCCS)
—www.nationalchildrenscancersociety
.com
NCCS assists by providing some fi –
nancial assistance for medical treatment,
lodging, and travel.
Support Groups for Children,
Teens, and Families
List of support groups compiled by the
U.S. Department of Health and Human
Services—healthfinder.gov/scripts
/SearchContext.asp?topic=833§ion=3
Gilda’s Club—www.gildasclub.org
This free cancer support community
offers a wide range of therapeutic activi-
ties and educational programs. It offers
teen support groups and Noogieland,
a magical space with fun activities and
support for children.
Starlight Starbright Children’s Foundation
—www.starlight.org, www.myspace.com
/starlightfriends
Starlight has launched My Life, an
extension of the Starbright World on-
line social network for seriously ill teens
and teen siblings. My Life was devel-
oped specifi cally to help teens with life-
threatening illnesses acknowledge and
cope with the possibility of death.
Internet Teen Support Groups
Group Loop—www.grouploop.org
I’m Too Young for This—i2y.com/
Planet Cancer—www.planetcancer.org
Teens Living with Cancer—www.teenliving
withcancer.org
For Siblings
Supersibs!—www.supersibs.org
Camps
Camp Make A Dream—www.campdream
.org
This camp offers a free weeklong
camp for patients and their families.
Camp Sunshine—www.campsunshine.org
This camp offers free weeklong
camping experience for patients and
families.
For Parents and Teachers
Learning Disabilities OnLine—www.ldonline
.com
Parenting Tips, Activities for
Children, and Current Research about
Learning Disabilities
Cancervive—www.cancervive.org/
This group is dedicated to providing
support, public education, and advocacy
to those who have experienced cancer.
Starlight Children’s Foundation—www
.starlight.org/sicklecell
This foundation offers a comprehen-
sive menu of outpatient, hospital-based,
and Internet resources that provide on-
going support for children with sickle
cell anemia and families.
Miscellaneous
Adapting Motor Vehicles for People with
Disabilities—www.nhtsa.dot.gov/cars/
rules/adaptive/brochure/index.html
ch15.indd 388ch15.indd 388 9/22/11 5:24 PM9/22/11 5:24 PM
http://www.believeintomorrow.org
http://www.cancercare.org
http://www.childrenswishes.org
http://www.nationalchildrenscancersociety.com
http://www.gildasclub.org
http://www.starlight.org
http://www.myspace.com/starlightfriends
http://www.planetcancer.org
http://www.teenlivingwithcancer.org
http://www.supersibs.org
http://www.campsunshine.org
http://www.ldonline.com
http://www.cancervive.org
http://www.nhtsa.dot.gov/cars/rules/adaptive/brochure/index.html
http://www.believeintomorrow.org
http://www.nationalchildrenscancersociety.com
http://www.myspace.com/starlightfriends
http://www.teenlivingwithcancer.org
http://www.ldonline.com
http://www.starlight.org/sicklecell
http://www.starlight.org/sicklecell
http://www.nhtsa.dot.gov/cars/rules/adaptive/brochure/index.html
http://i2y.com/
http://healthfinder.gov/scripts/SearchContext.asp?topic=833§ion=3
http://healthfinder.gov/scripts/SearchContext.asp?topic=833§ion=3
Social Work With Children and Adolescents With Medical Conditions 389
Books and Workbooks
Alexander-Azlin, M. L. (2000). Beyond the
rainbow. Enumclaw, WA: Wine Press.
Best, C. (2002). Goose’s story. New York,
NY: Farrar, Straus & Giroux.
Brown, B. S. (1997). Oliver’s high fi ve.
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Brown, L. K., & Brown, M. (1996). When
dinosaurs die: A guide to understanding
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Carion, H. S. (2008). Sixty-fi ve roses:
A sister’s memoir. Toronto, Canada:
McArthur & Co.
Foss, K. S. (1996). The problem with hair.
Omaha, NB: Centering Corporation.
Heegaard, M. E. (2003). Living well with
my serious illness. Lanham, MD:
Fairview Press.
Gerner, M. (1990). For bereaved grandpar-
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Gordan, M. A. (1999). Let’s talk about
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Gouss, D. J., & Leeds, E. M. Tool box of
hope. Atlanta, GA: Healing Hearts Com-
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Keane, N., Hobbie, W., & Ruccione, K.
(2006) Childhood cancer survivors: A
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Sebastopol, CA: O’Reilly.
Keene, N. (2003). Chemo, craziness, and
comfort. Kensington, MD: Candlelighters.
Keene, N. (Ed.) (2003). Educating the child
with cancer. Kensington, MD: Candle-
lighters.
Klein, S. D., & Schive, K. (2001). You will
dream new dreams: Inspiring personal
stories by parents of children with dis-
abilities. New York, NY: Kensington
Books.
Krishner, T., Levine, A. & Westcott. B.
(1992). Kathy’s hats: A story of hope.
Atlanta, GA: Whitman & Co.
McCue, K. (1996). How to help children
through a parent’s serious illness. New
York, NY: St Martin’s Press.
Miles, B. S., & Wong, N. (2006). Imagine
a rainbow: A child’s guide to soothing
pain. Washington, DC: Magination Press.
Mills, J. C. (2003). Little tree: A story for
children with serious medical problems.
Washington, DC: Magination Press.
North, S. (2003). My brand new leg. Thou-
sand Oaks, CA: Northstar Entertainment.
O’Toole, D. (1995). Facing change: Falling
apart and coming together again in the
teen years. Burnsville, NC: Compassion
Press.
O’Toole, D., & Corr, J. (2004). Helping
children grieve and grow: A guide for
those who care. Omaha, NB: Centering
Corporation.
Platt, A. (2003). Hope and destiny: A pa-
tient’s and parent’s guide to sickle cell
disease. Munster, IN: Hilton.
Sacerdote, A., Platt, A, and Sacerdote, A.
(2002). Hope and destiny: The patient
and parent’s guide to sickle cell dis-
ease and sickle cell trait. Munster, IL:
Hilton.
Salloum, A. (1998). Reactions: A workbook
to help young people who are experienc-
ing trauma and grief. Omaha, NE: Cen-
tering Corporation.
Samuel-Trailsman, E. (1992). Fire in my
heart, ice in my veins: A journal for
teens experiencing loss. Omaha, NE:
Centering Corporation.
Scherago, M. G. (1987). Sibling grief.
Redmond, WA: Medic.
Schmidt, R. C. (2003). My book about can-
cer: A workbook to help children deal
with the diagnosis and treatment of a fa-
ther with cancer. Pittsburgh, PA: Oncol-
ogy Nursing Society.
Schultz, C. M. (2002).Why, Charlie Brown,
why? A story about what happens when
a friend is very ill. New York, NY:
Ballantine Books.
Schwiebert, P., & DeKlyen, C. (1999). Tear
soup. Portland, OR: ACTA Publications.
Shavatt, D., & E. (2002). My grieving jour-
ney book. Mahwah, NJ: Paulist Press.
Silverman, J. (1999). Help me say good-
bye. Lanham, MD: Fairview Press.
Sonnenblick, J. (2006). Drums, girls,
and dangerous pie. New York, NY:
Scholastic.
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390 Health Social Work: Selected Areas of Practice
Temes, R. (1992). The empty place: A
child’s guide through grief. Far Hills,
NJ: New Horizon Press.
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392
16
Social Work With Older Adults in
Health-Care Settings
SADHNA DIWAN, SHANTHA BALASWAMY, AND SANG E. LEE
Using a biopsychosocial approach to under-
standing health and well-being, this chapter
presents an introduction to issues relevant to
social work with older adults in health-care
settings. It focuses on knowledge needed by
social workers to comprehensively assess
the needs and resources of diverse groups of
older people, provides a review of the avail-
able empirical literature on various domains of
assessment, and describes the nature of social
work practice with older adults in a variety of
health-care settings. The subject matter of this
chapter overlaps to some degree with that of
other chapters in this book, such as those ad-
dressing policy, disability, nephrology, oncol-
ogy, chronic illness, end-of-life care, and pain
management, as they relate to work with older
adults. The reader is urged to treat the chapters
as overlapping bodies of information rather
than discrete and separate entities.
Chapter Objectives
• Provide an overview of the demographic
changes related to aging and their implica-
tions for social workers in health care.
• Describe the concept of comprehensive ge-
riatric assessments and discuss the available
empirical literature on their effi cacy.
• Describe the core components of culturally
relevant ethnogeriatric assessment.
• Using a biopsychosocial approach, provide
an overview of the domains of knowledge
necessary to assess the needs and resources
of older adults.
• Describe the nature of social work practice
with older adults in selected health-care
settings, such as primary care, inpatient
acute care, hospital-to-home transitional
care, home health care, and nursing
homes.
• Discuss the issues and challenges related to
working with older individuals that are en-
countered by social workers in the current
health-care environment.
CHARACTERISTICS OF THE
AGING POPULATION
The Administration on Aging (AoA, 2010)
provides these facts in A Profi le of Older
Americans: 2009.
Demographics
• Older adults (people 65 years or older)
numbered 38.9 million in 2008, represent-
ing 12.8% of the U.S. population—about 1
in every 8 Americans.
• The older population itself is getting older,
and in 2009, people reaching age 65 years
had an average life expectancy of an ad-
ditional 18.6 years (19.8 years for females
and 17.1 years for males).
• The population of adults 65 years of age
and older increased from 35 million in
2000 to 40 million in 2010 (a 15% in-
crease), and is expected to increase to
55 million in 2020 (a 36% increase for
that decade). The number of individuals
85 years and over is expected to more than
double by 2030.
ch16.indd 392ch16.indd 392 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 393
for people 65 years and older is more than
three times the comparable rate for people
of all ages.
• The average length of stay for people
65 years and older was 5.5 days; the
comparable rate for people of all ages
was 4.8 days. The average length of stay
for older people has decreased by 5 days
since 1980.
• Older people averaged more annual physi-
cian offi ce visits than did younger people in
2005: 6.5 offi ce visits for those ages 65 to
74 and 7.7 offi ce visits for people older than
75 years; people age 45 to 65 years aver-
aged only 3.9 offi ce visits during that year.
• In 2008, over 96% of older people reported
that they did have a usual source of medi-
cal care and only 2.4% said they failed
to obtain needed medical care during the
previous 12 months because of fi nancial
barriers.
• Older Americans spent 12.5% of their
total expenditures on health, more than
twice the proportion spent by all consum-
ers (5.9%).
Implications of Demographic Changes
for Social Work in Health Care
Within the next decade, a larger proportion of
individuals seen in all parts of the health-care
system (e.g., primary care, specialty care, in-
patient hospital, nursing home) will be older
adults. Given the shortened length of stay in
hospitals and the changing nature of nurs-
ing home stays (short stay, postacute care),
there will be a heavy emphasis on appropriate
post–hospital discharge planning and develop-
ment of community-based care models to help
maintain older adults in community settings.
These community-based care models will
need to address physical, functional, psycho-
logical, and social needs of older adults and
their families, and social workers will need to
pay increasing attention to the development
of culturally competent models of care to ad-
dress the needs of the growing number of mi-
nority elders.
• In 2008, 19.6% of people age 65 years
and older were racial and ethnic minori-
ties—8.3% were African Americans, His-
panics represented 6.8%; about 3.4% were
Asian or Pacifi c Islander; and fewer than 1%
were American Indian or Native Alaskan.
About 0.6% of people age 65 years and
older identifi ed themselves as being of two
or more races.
Health and Health Care
• Most older people have at least one chronic
health condition, and many have multiple
conditions. Among the most frequently oc-
curring conditions for the time period 2005
to 2007 were hypertension (41%), diagnosed
arthritis (49%), all types of heart disease
(31%), any cancer (22%), diabetes (18%),
and sinusitis (15%).
• In 2008, 39% of noninstitutionalized older
people rated their health as excellent or very
good. Among the older population, African
Americans (25%), American Indians/Alaska
Natives (23.2%), and Hispanics (28%) were
less likely to rate their health as excellent or
very good than were White (41.8%) or Asian
Americans (35.2%).
• In 2008, 38% of older people reported hav-
ing some type of disability (i.e., diffi culty
in hearing, vision, cognition, ambulation,
self-care, or independent living). Some of
these disabilities may be relatively minor,
but others result in the need for assistance
in meeting important personal needs.
• Limitations on ability to perform specifi c
activities of daily living (ADLs) because of
chronic conditions increase with age. Fifty-
six percent of people older than 80 years
reported a severe disability, and 29% of this
population reported that they needed assis-
tance. Disability status and reported health
status are strongly correlated. Among those
people 65 years and older with a severe
disability, 64% report their health as fair or
poor.
• In 2006, over 13.1 million people 65 years
and older were discharged after short stays
in hospitals. The rate of hospital discharge
ch16.indd 393ch16.indd 393 9/22/11 5:38 PM9/22/11 5:38 PM
394 Health Social Work: Selected Areas of Practice
As noted by the Bureau of Labor Statistics
(2010):
[G]rowth of medical and public health social
workers is expected to be about 22 percent,
which is much faster than the average for all
occupations. One of the major contributing
factors is the rise in the elderly population.
These social workers will be needed to as-
sist in fi nding the best care and assistance for
the aging, as well as to support their families.
Employment opportunities for social work-
ers with backgrounds in gerontology should
be excellent, particularly in the growing
numbers of assisted-living and senior-living
communities. The expanding senior popula-
tion also will spur demand for social workers
in nursing homes, long-term care facilities,
home care agencies, and hospices. (p. 3)
Although Medicare has enabled access to
health care for those 65 years and older, older
adults have signifi cantly higher out-of-pocket
expenditures related to health care, especially
for prescription drugs, compared with other
groups, and older adults spend a greater pro-
portion of their expenditures on health care
(AoA, 2010). Policy advocacy and resource
development for health-care products and ser-
vices also will remain important tasks for so-
cial workers in health-care settings.
COMPREHENSIVE
GERIATRIC ASSESSMENT
Comprehensive assessment of needs and re-
sources has become a fundamental aspect of
providing care to older people. The princi-
ples of comprehensive geriatric assessments
(CGAs) in health care originated in England
in the 1930s in the work of Marjory Warren,
who created a specialized geriatric assessment
unit in a workhouse infi rmary that housed a
large number of older patients who were ne-
glected and bedridden (Wieland & Hirth,
2003). Through systematic assessments, War-
ren determined who might benefi t from medi-
cal and rehabilitation efforts. She remobilized
a majority of these patients and in many cases
discharged them to their homes. These experi-
ences led her to become a leading proponent
of comprehensive assessment of older adults
before they were placed in chronic hospital
or nursing home facilities (Wieland & Hirth,
2003).
Over time, the National Health Service
in the United Kingdom established geriatric
assessment units as a point of entry into the
health-care system, and these assessments
were offered to all older patients through
universal health coverage. Many other devel-
oped countries (e.g., Canada, Australia, Italy,
the Netherlands, Norway) have followed
the British model (Urdangarin, 2000). In the
United States, however, the use of comprehen-
sive geriatric assessment has been restricted to
academic centers and Veterans Administration
(VA) hospitals (Urdangarin, 2000).
The concept of a CGA in health-care set-
tings such as primary care, inpatient care, and
nursing homes is based on the assumption that
older adults simultaneously experience prob-
lems in multiple domains—physical, social,
and psychological—which results in many
unmet health-care needs. These problems and
needs require a more thorough assessment
than what is possible in a routine diagnostic
examination provided by the physician. The
hallmark of a CGA is that it is performed by
a multidisciplinary or transdisciplinary team
consisting primarily of physicians, nurses, and
social workers and can include specialists from
fi elds such as occupational and physical ther-
apy, nutrition, pharmacy, audiology, and psy-
chology (Agostini, Baker, & Bogardus, 2001;
American Geriatrics Society, n.d.; Wieland &
Hirth, 2003).
According to the American Geriatrics So-
ciety (n.d.):
[A] geriatric assessment is more involved
and comprehensive than the standard medi-
cal exam and includes a health “history”
and a physical exam, often also including a
review or assessment of the person’s activi-
ties of daily living (ADLs), medications, im-
munizations, mobility, cognition and signs of
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Social Work With Older Adults in Health-Care Settings 395
anxiety or depression. . . . While the geriatri-
cian often serves as the “point person,” each
member of the geriatrics team is a skilled
health professional. All play an important
role in the proper assessment and care of an
older patient. (p. 1)
Although a CGA is very helpful in mak-
ing a diagnosis and understanding a patient’s
needs, the value of a comprehensive assess-
ment in improving patient outcomes often is
limited because the assessment team does not
have control over the implementation of the
recommendations and treatment plan, which
usually are initiated by a primary care physi-
cian. Researchers in the United States have
noted that many of the recommendations made
during the assessment were not followed either
by the primary care physician or the patient
(Shah, Maly, Frank, Hirsch, & Reuben, 1997;
Urdangarin, 2000), resulting in unmet needs
and compromised health situations.
Because of the disconnect between the as-
sessment and the actual treatment or care pro-
vided to the patient, in the United States, there
has been increasing recognition that needs
assessment should be combined with care
management. For this reason, the VA has ad-
opted the geriatric evaluation and management
(GEM) approach as a basic component of clin-
ical geriatric care (Urdangarin, 2000). The VA
system fi rst established GEM units in inpatient
hospital care and later in ambulatory care to
identify, assess, and treat frail and older veter-
ans with disabilities in the system who were at
risk for institutionalization and failing to ben-
efi t from usual care (Wieland & Hirth, 2003).
Early studies of the GEM approach within the
VA system suggested that it was highly cost ef-
fective, leading to its adoption throughout the
system. By the mid-1990s, over three fourths
of the 172 VA medical centers reported having
a GEM program (Wieland & Hirth, 2003).
In GEM programs, patients receive most of
their care from the GEM team. The team con-
sists of (a) the physician, who provides medi-
cal care and generally supervises the team; (b)
the nurse, who provides some medical care
and education about the condition or disease,
treatments and medications, and the use of
home health and emergency services; and (c)
the social worker, who provides psychosocial
counseling for the patient and caregiver; refer-
ral to appropriate fi nancial, social, psychologi-
cal, and community services; and appropriate
discharge planning if the patient is hospital-
ized (Urdangarin, 2000).
The principles of GEM have been incor-
porated and tested in other care coordination
models, such as Geriatric Resources for As-
sessment and Care of Elders (GRACE) and the
Program of All Inclusive Care for the Elderly.
Although the implementation of comprehen-
sive geriatric assessment and evaluation has
increased in other inpatient units and outpa-
tient departments, 80% of Medicare benefi –
ciaries do not have access to such programs
(see American Geriatrics Society, n.d.). Some
of the barriers to providing this service have
been the diffi culty in obtaining adequate reim-
bursement for it, the lack of trained geriatric
physicians to run these units, and the diffi –
culty in maintaining interdisciplinary teams
(Wieland & Hirth, 2003). Another issue has
been the mixed evidence on the effectiveness
of these approaches in infl uencing a variety of
outcomes, such as functional status, cognitive
ability, affect, use of services, cost of care, sat-
isfaction with care, and mortality.
The most commonly reported positive out-
comes of CGA and GEM are a reduction in
mortality, favorable effects on cognitive and
physical functioning, increased likelihood of
living at home, and decreased likelihood of
hospitalization during follow-up (Urdangarin,
2000). The attempt to move this fi eld forward
through research on CGA and GEM has been
limited by the diversity of patients in the in-
terventions, the differing nature of both in-
terventions as well as “usual care” practices,
the inherent complexity of geriatric evaluation
and management, inconsistent measurement
of outcomes and use of assessment tools, and
the diffi culty in replicating successful single-
site studies (Van Craen et al., 2010; Wieland
& Hirth, 2003). A multisite controlled trial is
needed to address some of these diffi culties.
Despite these issues, comprehensive geriatric
ch16.indd 395ch16.indd 395 9/22/11 5:38 PM9/22/11 5:38 PM
396 Health Social Work: Selected Areas of Practice
assessment has become an accepted compo-
nent of geriatric primary care and inpatient
consultation services, especially with the
spread of managed health-care programs. Box
16.1 describes the GRACE model of assess-
ment and care coordination (Counsell et al.,
2007) in which social worker and nurse prac-
titioner teams collaborate with a larger inter-
disciplinary team and primary care physicians
to assess, develop, and implement individual-
ized care plans for low-income seniors. The
model has been recognized and described in
the Healthcare Innovations Exchange of the
Agency for Health Care Research and Quality
(AHRQ, 2010) and is being disseminated to
other health-care systems.
According to R. L. Kane (2000a, p. 3), “the
key to good assessment is using a strong con-
ceptual model” that should identify not only
specifi c client attributes of interest but also re-
lated factors, such as the physical environment
and informal support. Using the biopsychoso-
cial lens, various domains of assessment, their
infl uence on the lives of older individuals, and
the implications of their inclusion for social
work practice are discussed. Table 16.1 at the
end of the section on assessment domains pro-
vides a list of tools that are commonly used to
assess patients and families in each of the do-
mains. Readers are referred to R. L. Kane and
R. A. Kane (2000) for details on the items and
psychometric properties of the scales.
Physiological Well-Being and Health
Assessment of an individual’s health status
is the most basic feature of a comprehensive
evaluation in health-care settings. As indi-
viduals age, the prevalence of chronic disease
conditions increases signifi cantly, with the
most common health problems being arthritis,
cardiovascular disease, cancer, and diabetes
(AoA, 2010). Beyond the genetic or familial
predispositions that contribute to developing
these chronic conditions, all of these diseases
or conditions infl uence and are infl uenced by
what individuals do or don’t do in their daily
lives (Centers for Disease Control and Pre-
vention [CDC], 2004). Other common health
measures that are important to assess are an
older individual’s overall health status; pres-
ence of pain; nutritional status; risk for fall-
ing; incontinence; sleep; alcohol and drug
use; dental or oral health; and sensory percep-
tion, especially vision and hearing (McInnis-
Dittrich, 2009). These health conditions may
signifi cantly infl uence other domains, such
as lowering psychological well-being, limit-
ing functional ability, and diminishing quality
of life. For example, arthritis can be painful,
limit mobility, and lead to depression. Simi-
larly, complications from diabetes can result in
a loss of limbs that requires modifi cation of the
home, access to assistive devices, and personal
care assistance. Social workers generally are
called on to help older individuals and their
families address these issues.
One important problem associated with
having multiple health conditions is polyphar-
macy; that is, an individual may visit different
doctors and receive prescriptions for different
medications that may have signifi cant interac-
tions and side effects. Physicians may not be
aware that the patient has seen other providers.
A review of all medications should be a stan-
dard component of every geriatric evaluation
(R. L. Kane, 2000a). Social workers need to be
aware of the common medications prescribed
for older adults and have some knowledge
of side effects. Problems experienced with
medications or with compliance often can
be spotted in the context of home visits and
conversations with family caregivers. Another
signifi cant issue related to medication use is
the cost of medications. Mojtabal and Olfson
(2003) report that low-income Medicare ben-
efi ciaries with higher out-of-pocket spending
for drugs were more likely to not adhere to
prescribed medications because of their cost.
Cost-related nonadherence with medica-
tion use was associated with poorer health
outcomes in terms of worsening chronic con-
ditions such as arthritis, heart disease, hyper-
tension, and depressive symptoms (Mojtabal
& Olfson, 2003). For social workers, advocat-
ing for individuals to obtain prescribed medi-
cations has become an important feature of
their practice in health-care settings. Social
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Social Work With Older Adults in Health-Care Settings 397
workers need to remain informed about local
and national resources (e.g., Medicare drug
discount cards, pharmaceutical company pro-
grams) as well as medication assistance pro-
grams, which vary from state to state (see
Chapter 5 for more information).
Psychological Well-Being and Mental
Health
Although older adults experience many of
the same mental disorders as other adults,
the prevalence, nature, and course of each
Box 16.1 Geriatric Resources for
Assessment and Care of Elders (GRACE)
Key Components
• Initial, at-home comprehensive geriatric
assessment by support team of a certifi ed
nurse practitioner and licensed clinical
social worker. The assessment includes
medical and psychosocial history, medi-
cation review, functional assessment,
review of social support and advance di-
rectives, and home safety evaluation.
• Meetings with interdisciplinary team
(geriatrician, pharmacist, physical thera-
pist, mental health social worker, and
community-based services liaison) to de-
velop an individualized, integrated care
plan based on protocols for evaluating
and managing 12 common geriatric con-
ditions. The conditions include: advance
care planning, health maintenance, medi-
cation management, diffi culty walking/
falls, malnutrition/weight loss, visual im-
pairment, hearing loss, dementia, chronic
pain, urinary incontinence, depression,
and caregiver burden.
• Team-led implementation, ongoing care
coordination supported by a common
electronic medical record (EMR) and lon-
gitudinal tracking system. The coordina-
tion includes in-home follow-up visit by
support team to review the care plan and
goals.
• Ongoing care coordination and case
management. The team encourages goal
setting and self-care, teaches problem-
solving skills, provides education using
low-health-literacy materials that corre-
spond to each GRACE protocol, prepares
patients and physicians to address prob-
lems and team suggestions during offi ce
visits, and assists with transportation
arrangements. Each patient receives a
minimum of a monthly phone contact to
check for and address any new problems,
such as changes in medications, social
supports, and/or living arrangements.
The social worker plays a critical role
throughout this process, helping patients
to access community-based resources
(e.g., discounted fi tness classes) and
navigate the health and social services
system.
• Periodic interdisciplinary care team re-
views and annual reassessments.
Results
The GRACE program: improved the provi-
sion of evidence-based care; led to signifi –
cant improvements in measures of general
health, vitality, social functioning, and men-
tal health; reduced emergency visits; and
generated high levels of physician and pa-
tient satisfaction. Overall hospital admission
rates were not affected, but admission rates
for high-risk participants were lower than
for comparable patients in the usual-care
group. A recent analysis found that the pro-
gram was cost neutral over a 2-year period
and yielded cost savings in the third year for
high-risk enrollees.
Source: From “Team-Developed Care Plan and
Ongoing Care Management by Social Workers and
Nurse Practitioners Result in Better Outcomes and
Fewer Emergency Department Visits for Low-Income
Seniors.” Washington, DC: Agency for Health Care
Research and Quality, Innovations and Tools to Improve
Quality and Reduce Disparities, 2010. Retrieved from
www.innovations.ahrq.gov/content.aspx?id=2066
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http://www.innovations.ahrq.gov/content.aspx?id=2066
398 Health Social Work: Selected Areas of Practice
disorder may vary signifi cantly (U.S. Depart-
ment of Health and Human Services, 1999).
Depression, anxiety, and dementia are some
of the pathological disorders that can de-
velop in older age (McInnis-Dittrich, 2009).
These problems often are underdiagnosed in
large part because of several challenges that
clinicians encounter when assessing the men-
tal health of older people. These challenges
include comorbidity (the presence of other
health conditions), wherein many symptoms
of mood disorders (e.g., sleeplessness, fa-
tigue) could be misattributed to health prob-
lems. Other challenges include stereotypes
about aging; for example, the belief that
normal aging is associated with increased
negative affect is likely to lead to a lack of
attention to the symptoms of mood disorders
(Grann, 2000). Family members may believe
“senility” is a normal part of aging and delay
seeking care for the older individual. Older
adults themselves may be less willing to talk
about their feelings, as different cohorts and
cultures may view psychological symptoms
very negatively, and instead focus on somatic
complaints (see Chapter 10). For example,
older individuals, especially those from Asian
cultures, may be more willing to admit to
sleep and memory problems than feeling sad
or anxious (Kleinman, 2004). Finally, the
overlap between the symptoms of dementia
and depression makes it diffi cult to assess
them separately.
Substance abuse, particularly the abuse
of alcohol, prescription drugs, and over-the-
counter medications, is another disorder that is
underdiagnosed in the older adult population.
Because often decreased activity by an older
adult is attributed to other age-related fac-
tors, substance abuse is not seen as the cause
of a disruption from work or social activities
(Widlitz & Marin, 2002). Furthermore, clini-
cians are often unaware of an older person’s
drinking problems because the topic is rarely
discussed by the physician (Kane, 2000c).
Specialized assessment tools, such as the
CAGE or the Michigan Alcoholism Screening
Test, that specifi cally target symptoms relating
to older people are essential to screen for sub-
stance abuse. These symptoms include mood
swings, loss of physical mobility, progressive
isolation, unexplained accidents, and a decline
in cognitive functioning. Left undiagnosed and
untreated, substance abuse can decrease over-
all health because it is associated with immu-
nodefi ciency; arrhythmia; and increased risk
for cancer, gastritis, and new seizure activity
(Widlitz & Marin, 2002). See Chapter 17 for
further information.
In the assessment of an older individual’s
mental health, positive aspects of psychologi-
cal well-being often are overlooked. That is,
assessments of depression, stress, anxiety, and
other disorders generally do not address an in-
dividual’s subjective well-being, such as the
presence of positive affect, hope, optimism,
and life satisfaction. Folkman and Moskow-
itz (2000) suggest that positive affect in the
context of chronic stress may help prevent
worse outcomes, such as clinical depression
or adverse physiological consequences of
stress. Hope is conceptualized as a future-
oriented positive expectation that motivates
an individual and provides a means of coping
with uncertainty (Raleigh & Boehm, 1994).
The lack of hope is predictive of suicidal
thoughts among older adults with depression
(Uncapher, Gallagher-Thompson, Osgood, &
Bonger, 1998).
Although the rate of suicide among those
65 years and older has declined since 1991,
suicide rates among seniors are among the
highest of all age groups (CDC, 2009). See
Box 16.2 for more facts about older adult
suicide, as well as Chapter 8 for further in-
formation.
Cognitive Capacity
Changes in cognitive capacity occur as people
age. Two types of cognitive changes should be
noted. The fi rst has to do with small declines
in memory, selective attention, information
processing, and problem-solving ability that
occur with normal aging, although the amount
of change varies greatly (Siegler, Poon, Mad-
den & Welsh, 1996). The consequences of
these cognitive changes may be a slower pace
ch16.indd 398ch16.indd 398 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 399
of learning and an increased need for repeti-
tion of new information (U.S. Department of
Health & Human Services, 1999). The second
type of cognitive change is a progressive, ir-
reversible, global deterioration in capacity that
occurs as a result of dementing illnesses such
as Alzheimer’s disease, vascular dementia, and
subcortical dementia. It is estimated that about
3% of men and women ages 65 to 74 years
old have Alzheimer’s, and nearly 50% of those
85 years and older may have the disease (Na-
tional Institute on Aging, 2004).
Another important issue is the determina-
tion of the competence of people with impaired
cognitive capacity to make their own decisions
regarding care. Usually this is accomplished by
having either a family member or a social worker
(if no family member is available) petition the
court for guardianship of the patient’s fi nances
and/or person. The decision to grant guardian-
ship is a legal determination made by the court
but usually also involves a physician’s and social
worker’s assessment of the client’s capacity for
making decisions that do not cause harm to self
or others (Cummings & Jackson, 2000).
As the dementia progresses, profound
changes occur in memory, language, ob-
ject recognition, and executive functioning
(i.e., the ability to plan, organize, sequence,
and abstract). Behavioral symptoms such as
Box 16.2 Facts About Suicide Among
Older Adults
• Suicide rates increase with age and are
highest among individuals age 65 years
and over.
• Eighty-fi ve percent of the suicides in this
age group were by males. Caucasian males
have the highest rates of completed suicide.
• As compared to younger suicide victims,
older adults who complete suicide are
more likely to have lived alone, be
widowed, and have had a physical illness.
• About 70% of older suicide victims had
visited their primary care provider in
the month prior to their suicide attempt,
representing a missed opportunity for
intervention.
• Firearms were used in 73% of suicides
committed by adults over the age of 65 in
2001 (CDC, 2004).
• In one study, only 58% of physicians
asked their depressed and suicidal older
patients about their access to fi rearms
(Kaplan, Adamek, & Rhoades, 1998).
Prevention of Suicide in Primary Care
Elderly: Collaborative Trial (PROSPECT)
Study
Most older suicide victims are seen by
their primary care provider within a few
weeks of their suicide and are experiencing
a fi rst episode of mild to moderate
depression. One promising intervention
(see Alexopoulos et al., 2009) for reducing
suicidal ideation among seniors is a care
management intervention involving trained
depression care managers (social workers,
nurses, and psychologists) who collaborate
with primary care physicians by helping the
physicians in:
• Recognizing depression
• Offering guideline-based treatment
recommendations for patients
• Monitoring patients’ depressive
symptoms, medication adverse effects,
and treatment adherence
• Providing interpersonal psychotherapy
when a patient declines medication
therapy
A ran domized trial evaluation of the
intervention found it to be effective in
signifi cantly reducing suicidal ideation
among those with major depression and
noted that treatment response occurred
earlier among those receiving the
intervention. Despite the promise of this
intervention, Conwell (2009) notes that
two thirds of the patients in the trial were
women; the effi cacy of this intervention
in reducing suicidal ideation and behavior
among older depressed men (who are at
highest risk) remains to be examined.
ch16.indd 399ch16.indd 399 9/22/11 5:38 PM9/22/11 5:38 PM
400 Health Social Work: Selected Areas of Practice
agitation, hallucinations, and wandering are
also common. These cognitive changes ne-
cessitate increasing supervision of the older
individual, leading to considerable strain and
burden for both formal and informal caregiv-
ers (Alzheimer’s Association, 2004). Much of
social workers’ effort is directed toward fi nd-
ing resources, such as caregiver support groups,
behavior management training, counseling,
personal care services, respite, and alternative
living arrangements (e.g., foster care, assisted
living facilities, nursing homes) to support the
informal caregivers. Medications also can be
helpful in managing some behavioral symp-
toms, such as agitation and hallucinations. So-
cial workers should encourage family members
to discuss all symptoms and changes in behavior
with the physician, social worker, and caregiver
support group because many behavior manage-
ment techniques can be learned from listening
to the experiences of other caregivers.
Functional Ability
Functional ability is usually defi ned as an indi-
vidual’s ability to perform certain basic ADLs.
The activities classifi ed as basic ADLs refer
to personal care (e.g., dressing, bathing, eat-
ing, grooming, toileting, getting in and out of
bed or a chair, urinary and bowel continence);
the term instrumental activities of daily liv-
ing (IADLs) refer to activities that need to be
performed in order to live in a community set-
ting (e.g., cooking, cleaning, shopping, money
management, use of transportation, telephone,
medication administration). Mobility, which
addresses walking, climbing stairs, balance,
and transferring in and out of a chair or bed,
often is included in the ADLs. The perfor-
mance of these activities usually is assessed in
terms of being independent, needing assistance
(human help or mechanical devices), and being
unable or completely dependent on human help
to perform the various activities. The progres-
sion of disability in performing these activities
predicts an individual’s movement along the
continuum of care, ranging from independent
living, to assisted living (assistance could be in-
formal, formal, or both), to nursing home care.
A variety of factors contribute to an indi-
vidual’s ability to perform ADLs and IADLs.
Pearson (2000) notes: “[F]unctional ability can
be conceptualized as the dynamic interaction
of an older adult’s physiological status, the
emotional or psychological environment, and
the external or physical and social environ-
ment” (p. 19). For example, many of the health
conditions discussed earlier could contribute to
limitations in functional ability. Psychological
issues such as depression, anxiety (including
a fear of falling), and hopelessness may lead
to a decreased motivation to perform these ac-
tivities. Cognitive changes such as dementia
also limit an individual’s functional ability. Fi-
nally, the external physical environment (type
of dwelling or neighborhood) as well as the
social support available to an individual may
promote or hinder the ability to perform ADLs
and necessitate a change in living conditions.
For social workers, the implications are clear:
An assessment of functional status requires an
evaluation of all of these factors that may con-
tribute to an individual’s disability. Limitations
in ADLs and IADLs are a prerequisite for eligi-
bility for services in all publicly funded home
and community-based services programs.
Another signifi cant issue in the area of func-
tional limitation is the ability to drive a motor
vehicle. According to Stutts, Martell, and Sta-
plin (2009), drivers age 60 to 69 years (i.e.,
the “young-old”) do not show any increase in
automobile crashes. The rate begins to rise for
those 70 years and older and increases rapidly
at 80 years. Thus, it is the oldest drivers who
pose more risk to themselves and to public
safety. The conditions that substantially in-
crease the risk for crashes among older drivers
include those that require navigating complex
situations, such as intersections and left turns
and reacting to an imminent crash.
A variety of age-related and other changes
in vision, hearing, reaction time, and cogni-
tive function can interfere with an individu-
al’s ability to drive. As Stutts and colleagues
(2009) note:
Situations that have proven risky for older
drivers often include complex visual searches,
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Social Work With Older Adults in Health-Care Settings 401
and information from multiple sources that
must be processed rapidly under divided
attention conditions. These are conditions
where context-appropriate driver behavior
often depends less upon conformity to formal
or informal rules than to judgment or “execu-
tive function.” (p. 42)
These fi ndings about particular risk factors
can help target educational materials to the
appropriate age cohorts and suggest that older
adults may be able to extend the safe driving
years through engagement in health/wellness
programs (Stutts et al., 2009).
In the United States in particular, the abil-
ity to drive is one of the most signifi cant com-
ponents of the ability to remain independent.
Some communities have undertaken environ-
mental modifi cations, such as lengthening the
time of traffi c signals and increasing the size
of lettering and visibility of street signs. Orga-
nizations such as the Automobile Association
of America and the American Association of
Retired Persons (AARP) offer a Mature Driver
Safety program to retrain older drivers. Based
on a study of older drivers, the Hartford Fi-
nancial Services Group, in partnership with
the Massachusetts Institute of Technology
AgeLab, developed a brochure that prepares
family members for how to have a conversa-
tion with an older person about driving deci-
sions (Hartford, 2005). Older people generally
preferred to be approached by individual fam-
ily members as opposed to those outside the
family (such as a close friend or the police)
when having conversations about their driving.
Most married older adults preferred to hear fi rst
from a spouse, although over 18% of those who
were married with a spouse in the household
reported that they absolutely did not want to
hear from their spouse about driving concerns.
Doctors and adult children also were preferred
choices for conversations. In cases where older
adults lived alone, doctors, followed by adult
children, were most often selected (Coughlin,
Mohyde, D’Ambrosio, & Gilbert, 2004). So-
cial workers can be helpful in educating and
engaging family members and physicians about
addressing this issue with an older patient.
Social Functioning
When assessing social function, it is impor-
tant to remember the subjective and objective
components to social functioning. Objective
measures would include social support (sup-
port or help received), social networks (num-
ber of people in the individual’s social circle),
social activities (attendance at social events,
frequency of contact with others), and social
roles (the number and type of roles performed).
Subjective measures of social function ask in-
dividuals to report on their satisfaction with
their social situation and their perception that
support is available when needed. Individuals
may vary considerably in objective measures
of social function yet express similar amounts
of satisfaction. In fact, there is a large body of
evidence to suggest that subjective evaluations
of support are more strongly related to psycho-
logical well-being than objective indicators of
social functioning, such as the frequency of
contact with others (Krause, 1995). Different
aspects of social functioning can be addressed
depending on the goal of treatment or care
planning. For example, social workers may
focus on an increase in the frequency of con-
tact with existing social networks (e.g., fi nding
transportation to attend social or church activi-
ties) or an increase in social roles (e.g., fi nd-
ing employment or volunteer opportunities),
depending on which aspects of social function
are most salient to the older person.
Among older individuals, social integration
(i.e., having social ties, roles, and activities) is
associated with better health outcomes, such
as a lower risk of mortality, cardiovascular dis-
ease, cancer mortality, and functional decline
(Unger et al., 1999). However, health also af-
fects social functioning in that individuals who
are confi ned to a bed or have severe mobility
impairments are likely to disengage from so-
cial activities that involve leaving the home.
Thus, as Levin (1994) points out, social func-
tioning is both an outcome as well as a predic-
tor of physical and psychological well-being.
Negative interaction or support is also an
important area for assessment. Negative inter-
action typically occurs with individuals who
ch16.indd 401ch16.indd 401 9/22/11 5:38 PM9/22/11 5:38 PM
402 Health Social Work: Selected Areas of Practice
have a close relationship with the older person
(Antonucci, Sherman, & Vandewater, 1997)
and can take the form of disagreements, emo-
tional and fi nancial abuse, and even physical
abuse and neglect (discussed in the section
“Assessment of Family and Informal Sup-
port”).
One issue that overlaps social, physical,
and psychological domains is the expression
of sexuality and the experience of intimacy
among older people (see Chapter 14 for more
details). In a review of the literature, Hooy-
man and Kiyak (2002) note that contrary to the
misperceptions about the cessation of sexual
activity as individuals grow older, research-
ers have found that sexual activity continued
into older ages and that sexual inactivity ap-
peared to depend more on life circumstances
rather than decreases in interest or desire.
For example, the infl uence of marital sta-
tus and interpersonal relationships on sexual
behavior is greater for women than for men
(Matthias, Lubben, Atchison, & Schweitzer,
1997), whereas physical conditions resulting
in sexual dysfunction appear to be the major
diffi culty infl uencing sexual activity for men
(Wiley & Bortz, 1996). A psychosocial assess-
ment of factors that infl uence sexual activity
in older adults should include an individual’s
past history of sexual activity, attitudes toward
sexual activities and intimacy, availability of
a partner, anxiety about sexual performance,
opportunities for privacy, and attitudes of staff
toward sexual activity in institutional settings
(Hooyman & Kiyak, 2002). Given the rates
of human immunodefi ciency virus (HIV) and
acquired immunodefi ciency syndrome (AIDS)
among older people—10% of those with HIV
are over age 50 and about 3% are older than 60
years (Linsk, 2000)—knowledge about HIV
and the practice of risky behaviors also should
be part of the assessment.
Physical Environment
As individuals age, social workers often see
a widening in the gap between the demands
of the environment and the individual’s com-
petence to address those demands. The aging
process brings with it many physiological
changes in sensory perception, gait, reaction
time, and strength, all of which may compro-
mise an individual’s ability to negotiate the
existing environment. For example, changes in
vision and depth perception make it diffi cult to
negotiate stairs, which may lead individuals to
restrict their trips out of the house, leading to
further dependence on assistance and increased
social isolation. Inadequacies in the physical
environment also may necessitate relocation
from a house or residence, which could nega-
tively infl uence an individual’s psychological
well-being, especially if the older person op-
poses the move. This is particularly true in the
case of many nursing home admissions.
Although independent homes are the most
obvious targets of an assessment of the ad-
equacy of the physical environment, Cutler
(2000) suggests that “all residential environ-
ments can be measured against the principles
of universal design, wherein a residential set-
ting should be adaptable, supportive, accessi-
ble, and safe” (p. 360). In 2000, about 78% of
older adults (65 years and older) owned their
home (U.S. Census Bureau, 2004), and about
89% of respondents age 55 years and older
strongly or somewhat agreed that they would
like to remain in their current residence for as
long as possible (AARP, 2000). Among older
adults, falls are the leading cause of injury
deaths and the most common cause of inju-
ries and hospital admissions for trauma. Each
year, about 35% to 40% of adults 65 years and
older fall at least once, and about two thirds to
one half of falls occur in or around the home
(CDC, 2001). Among community-dwelling
older adults, the risk of falling is greater for
those who live alone and have some type of
functional impairment (Elliott, Painter, &
Hudson, 2009).
Assessing the fi t of the home environment
with the capabilities of the individual is an im-
portant assessment domain, and the prevention
of falls is a critical area of intervention. Typi-
cal home assessments will examine the con-
dition, adequacy, and accessibility of lighting;
fl ooring and carpeting, including obstacles or
potential hazards for falling; bath and toilet,
ch16.indd 402ch16.indd 402 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 403
including need for assistive devices; kitchen;
heating and cooling; access to home from out-
side; access to rooms within the home; and
personal safety issues, such as neighborhood
conditions. Similar issues are also important
when evaluating assisted living or foster care
facilities.
Assessment of Family and Informal
Support
Family members play an important role in or-
ganizing or providing for the care of an older
adult. About two thirds (64%) of people who
live in the community and need long-term care
rely solely on family and friends (i.e., informal
support) for help; 28% receive a combination
of informal and formal care; and only 8% use
formal care or paid help only (Liu, Manton,
& Aragon, 2000). Family members of older
adults most likely to be caregivers are adult
daughters (27%), other female relatives (18%),
sons (15%), wives (13%), husbands (10%),
and others. About 30% of people caring for
older long-term care users were themselves
age 65 years or older, and another 15% were
between ages 45 and 54 years (Spector, Fleish-
man, Pezzin, & Spillman, 2000).
The assessment of informal support gener-
ally focuses on the number and relationship
of family helpers, amount and type of help
provided, the expected permanence of fam-
ily help, the strain or burden experienced by
caregivers, and more recently on the positive
aspects of careg iving (Gaugler, Kane, & Lan-
glois, 2000; Pearson, 2000). Many caregivers
have competing demands, such as employment
and caring for young children. With the declin-
ing functional ability that occurs with chronic
illnesses and dementia, along with the need
for increased vigilance, caregivers experience
considerable strain, which puts the older per-
son at greater risk for entering a nursing home
and also increases the likelihood of abuse or
neglect. It is thus important to assess both
objective and subjective components of care-
giver strain to gain a better understanding of
the needs of the caregiver. The term objective
components of burden refers to the disruption
in fi nances, family life, and social relations;
the term subjective components refers to the
caregiver’s appraisal of the situation as stress-
ful (Gaugler et al., 2000).
There is some evidence of race/ethnic dif-
ferences in the appraisal of strain due to care-
giving, such as evidence that African American
caregivers have a lower likelihood of viewing
caregiving as stressful compared with Cauca-
sian caregivers (Pinquart & Sörenson, 2005).
However, much of the research on race/ethnic-
ity is confounded with socioeconomic status,
and little data are available on caregiver per-
spectives from different socioeconomic strata
within racial and ethnic groups. In many long-
term care programs, formal services are pro-
vided only when family members are not in a
position to do so. Thus it is important that so-
cial workers attend to both objective and sub-
jective components of caregiver strain when
developing a long-term care plan.
In the health-care system, the assessment
of family support often is constrained by
legal defi nitions of who is a family member.
This creates signifi cant structural and legal
barriers for older gay and lesbian couples in
various health-care settings. For example,
partners may be denied access to medical re-
cords or visits to intensive care; in matters of
medical decision making, health-care profes-
sionals may restrict themselves to dealing with
family members rather than partners despite
the fact that family members may know less
about the preferences of the older patient than
the partner; and staff may hold negative atti-
tudes toward gay and lesbian couples (Hooy-
man & Kiyak, 2002). Social workers should be
aware of their own values and practices related
to this issue and act in accordance with the
professional code of ethics to not discriminate
against individuals on the basis of a variety of
factors, including sexual orientation (National
Association of Social Workers, 2003).
Elder abuse often occurs when family mem-
bers are overwhelmed with caregiving respon-
sibilities, particularly if the care recipient and
the care provider are living in the same house-
hold and there is a past history of family abuse.
Additional risk factors for elder abuse include
ch16.indd 403ch16.indd 403 9/22/11 5:38 PM9/22/11 5:38 PM
404 Health Social Work: Selected Areas of Practice
being older than 75 years; being female; hav-
ing physical or cognitive limitations; living in a
lower socioeconomic household; and caregiver
vulnerability to problems such as substance
use, mental illness, or fi nancial dependency on
the care recipient (McInnis-Dittrich, 2009; Na-
tional Center on Elder Abuse [NCEA], 2004).
A survey of states by the NCEA in 2000 notes
that social workers are mandated reporters of
elder abuse in 30 states or territories in this
country. This fact is important in part because
signs of elder abuse may be overlooked in
health-care settings when bruises, bone frac-
tures, or painful body symptoms might be
attributed to changes due to normal aging, un-
expected falls, or pain related to illness.
Economic Resources
Typically the assessment of economic resources
(i.e., income, pension, health insurance, other
assets) is necessary to determine eligibility for
publicly funded home- and community-based
services. Almost every state operates a Med-
icaid waiver–funded home- and community-
based services program that provides for home
care services to older adults who are at risk
of entering a nursing home. The actual assess-
ment and eligibility criteria vary from state to
state, but in general they include limitations
in functional ability and an income at or near
poverty (Centers for Medicare and Medicaid
[CMS], 2010a). Individuals whose incomes
exceed the criteria are required to “spend
down” their assets until they reach the eligi-
bility level (CMS, 2010b). See Chapter 5 for
additional information. Assessing income and
assets can be a frustrating and time-consuming
activity because of the reluctance of older peo-
ple and their family members to divulge such
information, often leading to an increased use
of social work time and delays in the Medicaid
application process (Diwan, 1999).
Values and Preferences
There is little systematic evaluation of the values
and preferences of older adults in most health
and long-term care settings (R. L. Kane, 2000c).
Kane outlines several areas in which some sys-
tematic ways of eliciting individual preferences
are desirable. These areas include preferences:
• For end-of-life care that address whether
individuals would want various procedures
performed, such as resuscitation, ventila-
tor care, intubation, and hydration, and
also whether they would like to designate
a proxy decision maker in the event they
cannot make these decisions
• About outcomes associated with alternative
hospital discharge plans; for example, pref-
erences related to particular types of home
care services needed or the location of post-
hospital care
• About housing arrangements, such as those
related to independent as well as various
types of congregate living arrangements,
such as assisted living facilities, small group
homes, continuing care retirement commu-
nities, or nursing homes
• For how routines of everyday life are con-
ducted, especially with ADLs and IADLs
• Related to religious practices
• Related to privacy, especially in congregate
settings where individuals may share rooms
and be observed by others when being
helped with ADLs
• Related to safety versus freedom; for ex-
ample, older adults may choose to live in
situations that professionals consider less
than adequate
In keeping with social work values that pro-
mote the principles of client self-determination
and autonomy, assessment of values and pref-
erences of older adults can help social work
practitioners be more attentive to these issues
when working with older adults in institutional
settings that tend to minimize the opportunity
for self-determination.
Spiritual Assessment
A growing body of literature documents the
positive link among religiosity, spirituality,
participation in religious activities, and health
ch16.indd 404ch16.indd 404 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 405
Table 16.1 Assessment Domains and Some Commonly Used Assessment Tools
Major Domains of
Assessment Some Commonly Used Assessment Tools
Physiological well-
being and health
Get Up and Go Test (Mathias et al., 1986) and Expanded Timed Get Up and Go (Wall, Bell,
Campbell, & Davis, 2000). Widely used as screens for risk for falls.
Medical Outcomes Study—Short Form-36 Health Survey (SF-36) (Ware & Sherbourne, 1992).
Covers eight areas: physical function, role limitations due to physical problems, social function,
pain, general mental health, role limitations due to emotional problems, vitality, and general
health perceptions.
Psychological well-
being and mental
health
CAGE Questionnaire (Ewing, 1984). Assesses alcohol problems.
Center for Epidemiological Studies Depression Scale (CES-D) (http://chipts.cch.ucla
.edu/assessment/Assessment_Instruments/Assessment_pdf_new/assess_cesd_pdf ).
Assesses depressed affect, positive affect, somatic/vegetative signs, and interpersonal distress.
Available in shorter versions.
Cognitive capacity Global Deterioration Scale (GDS). (Reisberg, Ferris, de Leon, & Crook, 1982). Assesses the
severity of dementia related to cognition, functional ability, and problem behaviors.
Mini Mental State Exam (MMSE) (Folstein, Folstein, & McHugh, 1975). Assesses immediate
and delayed memory recall; orientation; calculation/working memory; visuospatial abilities;
language.
Ability to perform
various ADLs
Katz Index of Independence in Activities of Daily Living (Katz et al., 1963). Measures
performance in ADLs: dressing, bathing, eating, grooming, toileting, transferring from bed or
chair, mobility, and continence.
Older Americans Resources and Services, Instrumental Activities of Daily Living (OARS-IADL)
(Fillenbaum & Smyer, 1981). Measures performance in IADLs: cooking, cleaning, shopping,
money management, use of transportation, telephone, medication administration.
Social functioning Lubben’s Social Network Scale (Lubben, 1988). Can be used as a screening tool for an older
person’s risk for isolation.
Social Support Questionnaire (Sarason et al., 1983). Measures objective and subjective aspects
of support received: global, informational, perceived, structural, and provisional.
Physical environment Elderly Resident Housing Assessment Program (ERHAP) (Brent & Brent, 1987). Assesses
safety, functioning, comfort in various domains through interviews with homeowner, direct
observation, and photographs by rater.
Assessment of family
caregivers
Caregiver Strain Index (Robinson, 1983). Assesses physical, personal, family, and fi nancial
strain related to caregiving.
Revised Memory and Problem Behavior Checklist (RMBPC) (Teri et al., 1992). Assesses
frequency of memory, mood, and problem behaviors in care the older patient and how much
these bother the caregiver.
Economic resources Older Americans Resources and Services (OARS-Economic Resources) (Fillenbaum & Smyer,
1981). Assesses income, pension, Social Security, health insurance, and other assets, such as a
house, cars, and savings.
Values and
preferences
Desire for Choice and Control in Nursing Homes (Kane et al., 1997). Assesses preferences for
choice and control in everyday life in nursing homes.
Values Assessment Protocol (Degenholtz, Kane, & Kivnick, 1997). Assesses values and
preferences of older people in case-managed home care programs. Could be useful in
developing care plans.
Spiritual assessment The Daily Spiritual Experience Scale (Underwood & Teresi, 2002). Attempts to measure
experience rather than particular beliefs or behaviors.
ch16.indd 405ch16.indd 405 9/22/11 5:38 PM9/22/11 5:38 PM
http://chipts.cch.ucla.edu/assessment/Assessment_Instruments/Assessment_pdf_new/assess_cesd_pdf
http://chipts.cch.ucla.edu/assessment/Assessment_Instruments/Assessment_pdf_new/assess_cesd_pdf
406 Health Social Work: Selected Areas of Practice
and psychological well-being among older
adults (Koenig, 1990; Levin, 1994). Assess-
ment of preferences for religious and spiritual
activity is important because these factors are
known to infl uence an individual’s psycho-
logical and social functioning, ability to cope
with stress, and overall quality of life. Spiri-
tual beliefs and religious worldviews also
may infl uence health- and illness-related be-
liefs. For many African Americans, spiritual
beliefs are a foundation for understanding
disease conditions and making treatment deci-
sions (e.g., they believe that God is ultimately
responsible for physical health, the physi-
cian is God’s instrument, and only God has
the power to decide life and death) (Johnson,
Elbert-Avila, & Tulsky, 2005). Many Mus-
lims are taught that illness is a test of faith
and a way to strengthen character and that
God is responsible for health care. Therefore,
Muslims may choose to not cooperate at all
with practitioners who discuss the probable
course of a disease or death (Gorder & Ellor,
2008). The actual domains of assessment may
include religious affi liation, beliefs, com-
mitment, participation in religious activities,
and private daily experience (Olson & Kane,
2000). The salience of these domains to an
individual (e.g., religious strictures for food
[kosher for observant Jews, halal for obser-
vant Muslims], the availability of religious
services) could signifi cantly infl uence care
plans for community-based care as well as for
institutional long-term care arrangements.
ETHNOGERIATRIC
ASSESSMENT
Increasing ethnic and cultural diversity in the
older population and the growing demand for
culturally competent care have contributed to
the development of ethnogeriatics, which is
a synthesis of aging, health, and cultural con-
cerns about health-care and social services for
ethnic older adults (McBride & Lewis, 2004;
Yeo, David, & Llorens, 1996). Ethnogeriatric
assessment involves adding cultural explo-
ration (Andrulis & Brach, 2007) or cultural
investigation (Gorder & Ellor, 2008) to the
CGA. Ethnogeriatric assessment is the fi rst
step to providing culturally competent care
and requires knowledge and skills in several
areas, including culturally defi ned health be-
liefs, historical and cohort experience, the role
of the family in the cultural context, culturally
appropriate ways of nonverbal communication
(showing respect), ability to address clients
with language barriers, and use of linguistic and
culturally appropriate assessment instruments.
Cultural Context of Health and Illness
Older clients and families from various ethnic
and cultural backgrounds may have culturally
defi ned health belief systems that do not exactly
match with or exist in the Western health-care
system, which is based on the biomedical model
(Yeo, 2009). The biomedical model uses defi ni-
tions and explanations of health and illness that
are based on scientifi c assumptions and pro-
cesses whereas ethnic older clients and families
may consider factors such as balance, nature, or
spirits in explaining their conditions. As a re-
sult, social workers may encounter clients who
describe culturally defi ned somatic disorders
or culture-bound syndromes during assessment
(Stanford Geriatric Education Center [SGEC],
2001). For example, in Chinese and other tra-
ditional medicine, health is maintained by bal-
ancing forces in the body (e.g., yin and yang
balance, cold or hot concepts) and free fl ow of qi
(Lin, 1980; McBride, Morioka-Douglas, & Yeo,
1996). Vietnamese and other Southeast Asian
refugee populations identify “wind illness” as
a common cause of various illnesses and also
believe that karma from past lives and super-
natural or ancestral spirits contribute to health
or illness (Yeo, 1996). Older Hmong refugees
from Cambodia believe spirit and soul loss af-
fect health (Gerdner, Xiong, & Yang, 2006).
Historical Context and Cohort
Experience
Historical context and cohort experience, such
as immigration patterns, experience of certain
events (e.g., war, torture, refugee status), and
ch16.indd 406ch16.indd 406 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 407
discrimination, may be refl ected in health be-
liefs and illness behaviors. Not knowing such
experience can result in inaccurate assess-
ment of clients’ conditions (Rosich, 2007;
Xakellies et al., 2004; Yeo et al., 1998). For
example, the most commonly reported symp-
tom by older Cambodians, severe headaches
frequently combined with dizziness, may be
related to their unique cohort experience of
the genocide under the Khmer Rouge. Their
frequent thinking about loss of and separa-
tion from family members during wartime re-
sults in headaches (Handelman & Yeo, 1996).
Alaska Natives who experience separation
from others through death or school in their
childhood and are now seniors may exhibit
trauma-like symptoms (Rosich, 2007). Know-
ing about these unique experiences can help
in interpreting symptoms expressed as well in
establishing trust with older ethnic clients and
their families (SGEC, 2001).
Acculturation, which is the degree to which
individuals are infl uenced by and actively en-
gage in the traditions, norms, and practices of
one or more cultures, can vary by the amount
of exposure to those cultures. Cohort experi-
ence, length of residence in the United States,
and language profi ciency infl uence degree of
acculturation (Diwan, 2008). Acculturation
thus should be regarded as a continuum rather
than a category, and social workers should as-
sess the degree of acculturation in thoughts,
behaviors, and attitudes to better understand
the older person’s frame of reference (Organi-
sta, 2009; Yeo, 2009).
Role of Family in Cultural Context
In assessment of ethnic older clients, cultural
expectations of their families that guide the
family members’ responses, such as levels
of involvement and decision making, must
be recognized (Yeo, 1996). Values and ethi-
cal principles emphasized in U.S. health care,
such as independence, autonomy, privacy,
and confi dentiality, may not apply in some
cultures. For example, in traditional Mexican
and Filipino families, physical dependence in
old age may be expected, and taking care of
dependent older members is considered to be
a family’s responsibility. In many cultures, the
family (and not the older client) is responsible
for deciding the older person’s health care, and
sometimes family members ask providers not
to reveal a serious diagnosis or bad news as
a way of protecting elders (Yeo, 1996, 2009).
Gender roles may be traditional (e.g., in Mus-
lim families, men often are regarded as protec-
tors by women, and men are responsible for all
health-care decisions) (Gorder & Ellor, 2008).
When working with older clients from fam-
ily-centered cultures, it is useful to invite fam-
ily members to participate in the assessment
process in addition to the older adult (Andrulis
& Brach, 2007). Likewise, it is useful to iden-
tify information related to family composition
and structure, kinship patterns, expectations
of and for family members, decision-making
practices and roles (e.g., individualistic versus
collectivistic, family centered, matriarchal or
patriarchal), gender role allocation, and the
like (SGEC, 2001; Xakellies et al., 2004).
Family members can help provide insight-
ful information about clients’ problems and
contribute to collaborative problem solving
(Organista, 2009).
Culturally Appropriate Nonverbal
Communication
Cultural preferences about showing respect
through nonverbal communication vary greatly
across groups, and social workers should be
familiar with culturally appropriate behaviors,
gestures, and styles (Xakellies et al., 2004).
Appropriate physical proximity between a
practitioner and a client varies across cultures.
Physical contact in greeting and examination
by the opposite gender are limited or prohib-
ited in many cultures, and direct eye contact
is appropriate in some cultures but can be
considered impolite or disrespectful in others
(Gorder & Ellor, 2008; SGEC, 2001). Practi-
tioners should keep these variations in mind
and carefully determine what to do or not do
during assessment. If in doubt about the appro-
priateness of an action, ask clients’ for guid-
ance and about their preferences (Yeo, 1996).
ch16.indd 407ch16.indd 407 9/22/11 5:38 PM9/22/11 5:38 PM
408 Health Social Work: Selected Areas of Practice
Language Barriers
Clear communication is critical for accurate
assessment, but it can be a challenge when
working with older clients and families with
limited English profi ciency and when prac-
titioners do not speak the same language as
clients (Yeo, 1996). Language barriers can
contribute to misunderstanding and errors in
communication during assessment and under-
mine the practitioner-client relationship (Min,
2005). Likewise, accurate assessment about
preferred language and degree of English pro-
fi ciency is essential in deciding on whether to
use interpreter services and translated materi-
als (Andrulis & Brach, 2007; Hasnain-Wynia
& Baker, 2006). Please see Chapter 10 on
communication for information and resources
about using interpreters.
Using Standardized Assessment
Instruments
When using standardized assessment instru-
ments (e.g., depression and other mental
status, health literacy), practitioners need to
ensure that instruments have been tested psy-
chometrically to determine their appropriate-
ness with the individual or group in question
(Tran, Ngo, & Conway, 2003). Relying on
translated instruments may be problematic be-
cause items on the instruments may not have
the same meaning to all groups, and level of
education and literacy also may impact scores
(Andrulis & Brach, 2007; Douglas & Lena-
han, 1994; Yeo, 1996).
Choice of format of the instrument can vary
based on the ethnic group of clients. For ex-
ample, expectation about expressing emotion
varies across cultures. Face-to-face interview
will be appropriate for clients from cultures
encouraging expressing feelings. Self-report-
ing will be more appropriate for those who are
infl uenced by cultural norms of suppressing
emotion because ways of keeping harmony
and face-saving may cause individuals to be
reluctant to be interviewed or respond using
socially desirable response biases (SGEC,
2001).
Implications of Ethnogeriatric
Assessment for Social Work
in Health Care
Factors shaping individuals’ cultural attitudes
are not limited to the areas just mentioned, and
social workers should try to solicit extensive
information in a sensitive and unobtrusive
way that is culturally appropriate (Gorder &
Ellor, 2008). Use of cultural liaisons (e.g.,
health workers, personal care workers) or cul-
tural brokers can help social workers resolve
diffi cult interactions and communications
(Xakellies et al., 2004; Yeo, 2009). As stated
earlier, medical interpretation should be un-
dertaken by people who are specially trained
and licensed (see Chapter 10).
ASSESSMENT VERSUS
SCREENING
Although comprehensive assessment of older
people and their families is desirable, it is not
feasible to assess individuals in depth in all
possible areas. Typically the content of an as-
sessment is determined by its purpose and the
setting in which it occurs. An abbreviated form
of assessment often is used for the purposes of
screening or case fi nding. Screening usually is
done to identify individuals who may have dif-
fi culties or problems in certain areas of func-
tioning. These individuals then are assessed
in greater depth and often referred to specifi c
disciplines for continuing care (Finch-Guthrie,
2000). For example, many health maintenance
organizations screen all of their older patients
by sending surveys at the time of enrollment.
Individuals who meet certain “risk” criteria
(e.g., those at risk for falling, breakdown of
informal support, those likely to be frequent
users of emergency room services) then are re-
ferred to case managers who develop, imple-
ment, and monitor a care plan to address their
particular risk factors. Screening, or case fi nd-
ing, is also important in primary care settings,
where the needs of many older patients may
be overlooked because of the lack of time or
training to assess psychosocial needs of older
ch16.indd 408ch16.indd 408 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 409
patients with chronic illness (Berkman et al.,
1999). Another example of screening occurs
in inpatient units where social workers screen
“high-risk” individuals, or those who may re-
quire earlier intervention and intensive atten-
tion, for the purpose of developing a viable
discharge plan (Cummings & Jackson, 2000).
SOCIAL WORK WITH OLDER
ADULTS IN HEALTH-CARE
SETTINGS
Social work practice with older adults occurs
in a range of health-care settings: outpatient
clinics, hospitals, emergency rooms, public
health departments, home health-care agen-
cies, agencies providing home- and com-
munity-based services, and residential and
rehabilitation facilities such as nursing homes
and assisted living facilities. Some essential
social work practice skills that are needed to
work with older adults in these settings are de-
scribed in Table 16.2.
Primary Health-Care Settings
The term primary care refers to the initial
entry of the patient into the health-care sys-
tem and implies a holistic approach to care
focusing on health promotion, disease preven-
tion, and integration of mental and physical
health services (Cowles, 2003; Oktay, 1995).
Primary health-care centers are considered
important one-stop services because they can
assist patients and families in navigating other
health-care services and promote continuity of
care and linkages among patient, family, and
community (Donaldson, Yordy, Lohr, & Vane-
selow, 1996). Most older patients in primary
health-care settings have two or more comor-
bid chronic illnesses, such as those described
earlier in this chapter.
Generally, social workers come in contact
with older people through referral from physi-
cians or nurse case managers or via high-risk
screening methods. The social worker com-
pletes a psychosocial assessment to determine
the strengths and service needs of the patient,
develops a care plan in partnership with the
patient and family, and seeks input from all of
the health-care professionals involved in the
delivery of care. The social worker’s level of
collaboration with health-care professionals
varies depending on the type of primary care
setting and availability of a geriatric consul-
tation team. The GRACE model described in
Box 16.1 is an example of interdisciplinary
collaboration for assessment and care plan-
ning in a primary care setting. Social workers
may advocate for access to identifi ed gaps in
services and resources within or outside the
primary care setting on behalf of the older
person to ensure successful implementation of
Table 16.2 Essential Social Work Practice Skills in Health Service Settings
Screening High-risk, service eligibility, special problems
Assessment Problem identifi cation, needs, strengths, resources—individual and
community
Communication skills Verbal and nonverbal; interviewing—patient and family; special groups,
other professionals and service providers
Interpersonal engagement skills Conveying values—autonomy, empathy, trust; clarifying roles;
empowerment
Clinical skills Crisis intervention, counseling and therapy—individual, family, and group
Group facilitation Support groups, psychoeducational groups
Mediation/Negotiation Advocacy, dispute resolution
Documentation Health insurance, medical records, mandated assessments
ch16.indd 409ch16.indd 409 9/22/11 5:38 PM9/22/11 5:38 PM
410 Health Social Work: Selected Areas of Practice
the care plan. They also provide information
on available resources in the community and
refer older patients to community agencies that
offer services such as housing, transportation,
home health care, counseling/psychotherapy,
durable medical equipment, and health insur-
ance. The goal is to facilitate comprehensive
care that meets the needs of the patient. As di-
rect service practitioners, social workers may
provide emotional support and counseling to
older people to foster coping and adaptation
to their illness, treatment, and prognosis. They
also help identify and mobilize the social sup-
port system (family, friends, and signifi cant
others) in the community.
A new approach to increasing access to pri-
mary health-care providers that has been used
involves house calls made to homebound, high-
risk, frail seniors by interdisciplinary teams of
geriatricians, nurse practitioners, and social
workers. This approach has produced favorable
outcomes, such as reduced inpatient hospital
services, nursing home placements, and cost of
care (Maynard & Stein, 2008). Furthermore, to
improve access and adherence to recommended
preventive care services among older adults, ex-
perts suggest the need for education of the older
adults about the diagnosis and treatment of emo-
tional health problems, which can be achieved
through the use of mental health specialists in
primary care settings (De Jonge, Taler, & Boling,
2009; Thrope, Patterson, & Sleath, 2006).
As provision of health care is shifting rap-
idly to ambulatory settings, social work experts
envision a need for expanding the role of social
workers in primary care settings to include more
multidisciplinary and transdisciplinary team ap-
proaches, organizational networking, case man-
agement services, participation in medical ethics
consultations, therapeutic and crisis interven-
tions, and other supportive counseling and group
work interventions (Berkman & Harootyan,
2003; Cowles, 2003; Netting, 1992).
Inpatient Hospital Settings
In hospitals, social workers typically see older
patients through referrals from physicians and
nurses or through case fi nding using high-risk
screening methods. Characteristics of high-
risk patients may include living alone, ter-
minal or chronic illness, suicidal tendencies,
mental health problems (Becker & Becker,
1986; Thrope et al., 2006), and lack of sup-
ports (Berkman et al., 1999). Hospitalized
older patients are referred to social workers for
a wide range of issues and problems, such as
anxiety over being hospitalized; pre- or post-
surgical concerns about procedures, treatment,
recovery, and discharge; lack of support and
resources after discharge; family and patient
consent on use of life-sustaining equipment;
suspected abuse; and cognitive or functional
impairments that require intervention. Acute
health problems for which older people may
be admitted to the hospital include falls and
fractures, physical impairment, iatrogenic ill-
ness, nutritional problems, and surgery.
Hospital social workers in inpatient settings
are responsible for screening and case fi nding,
psychosocial assessment, discharge planning,
postdischarge follow-up, outreach, counseling
(individual, group work), documentation and
record keeping, and collaboration. Depending
on the hospital, they may provide emergency
services through on-call programs.
The psychosocial assessment evaluates the
patient’s level of functioning, service needs,
social history, and availability of support, if
needed, from family and friends. The process
of discharge planning and developing a post-
hospitalization care plan involves coordinating
input from the various members of a multi-
disciplinary team. Social workers coordinate
this effort in their important role on the team
as liaison for the patient and family (Cotti &
Watt, 1989; Cowles, 2003; see Cummings &
Jackson, 2000).
Social workers can help inform or edu-
cate older individuals about the seriousness
of their illness, consequences if the illness
is left untreated, resources available to assist
in continuity of care, options for alternative
care, legal rights, and other matters. Such
information can help patients become effec-
tive consumers of services and gain a sense
of self-effi cacy, which is often lost when a
person experiences losses in functioning and
ch16.indd 410ch16.indd 410 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 411
when dealing with large and complex health-
care systems. Through referrals to commu-
nity services and family conferences, social
workers may engage in informing other for-
mal and informal support networks to help
the client after discharge or advocating for
specialized services within or outside the
hospital. Doing this requires knowledge of
the availability and eligibility requirements of
various community resources. Social workers
also are expected to have knowledge and skill
in determining the method of reimbursement,
such as private or public insurance or out-
of-pocket costs.
Social workers often are involved in counsel-
ing older patients regarding adjustment-to-ill-
ness issues and may provide crisis counseling to
help the family and older person reestablish an
emotional equilibrium, begin to understand the
medical condition, prioritize tasks, and develop
a short-term action plan (McInnis-Dittrich,
2009). Social workers also may develop sup-
port groups (e.g., bereavement, cancer, demen-
tia, high-risk health behaviors) to assist patients
and their families with their losses and illness
and undertake family counseling when needed.
Facilitation of support groups for older patients
in this setting requires skills such as relation-
ship building, counseling, and communication
(Ross, 1995).
The level of social work involvement in
discharge planning may vary depending on
hospital size, location, number of social work-
ers employed, policies, protocols, and organi-
zational culture. In general, physicians refer
patients to hospital social workers for concrete
services, such as assistance with IADLs, or
social-environmental problems, such as those
involving fi nancial needs, posthospital care,
and transportation, rather than for primarily
expressive problems involving attitudes, feel-
ings, or behaviors related to health (Cowles &
Lefcowitz, 1995). However, in a study by Hol-
liman, Dziegielewski, and Datta (2001), social
workers in the fi eld perceived their role in
discharge planning as requiring specifi c skills
related to communication and assessment of
social and fi nancial issues, and not just provi-
sion of concrete services.
Care Transitions Settings
“Care transitions refer to the movement of
patients from one health-care practitioner
or setting to another as their conditions and
care needs change. These may include tran-
sitions from hospitals to nursing homes or
home care after an acute illness, or transitions
from nursing homes to home care” (California
Health Care Foundation, 2008, p. 1). During
care transitions, older patients with multiple
comorbid conditions are particularly at risk
for medical errors, service duplication, pa-
tient and caregiver distress, and having criti-
cal elements of the care plan fall through the
cracks. Ineffectively managing care transitions
leads to poor clinical outcomes; dissatisfaction
among patients; and inappropriate use of hos-
pital, emergency, postacute, and ambulatory
services (Coleman & Boult, 2003).
A number of efforts have been undertaken
to intervene with transitions of care between
providers to prevent relapse, reduce rehospi-
talizations, and ensure safe and continuous
care (Kanaan, 2009; Naylor & Keating, 2008;
Parry, Kramer, & Coleman, 2006). The pri-
mary goal of transition care is to improve com-
munication among hospital or nursing facility
providers, primary care physicians, and other
community providers. The secondary goal is
to establish a follow-up care plan at the time of
discharge to ensure quality of care and safety
through education and support.
The Coleman Transition Care Intervention
(CTI) model, developed and implemented by
Dr. Eric Coleman and colleagues, is a brief
intervention designed specifi cally to address
the immediate needs of the patient following
discharge from health-care settings through
patient empowerment, support, and educa-
tion (Coleman, 2006). Specifi cally, the in-
tervention utilizes a transition coach, who
is responsible for empowering patients by
helping them develop skills in managing
their care and well-being as well as devel-
oping skills in navigating and communicat-
ing with health-care providers. In particular,
a transition coach facilitates development
of skills in patients and caregivers in four
ch16.indd 411ch16.indd 411 9/22/11 5:38 PM9/22/11 5:38 PM
412 Health Social Work: Selected Areas of Practice
areas: (1) medication management (being
knowledgeable about medications and having
a medication management system), (2) use of
a personal health record (PHR) (understand-
ing and using the PHR to facilitate communi-
cation and continuity of care across settings),
(3) knowledge of “red fl ags” (knowing and
recognizing health indicators that suggest
their condition is worsening and how to re-
spond), and (4) primary care and specialist
follow-up (scheduling follow-ups and com-
municating their conditions). Transition care
is accomplished through at least one visit in
the hospital or nursing facility before dis-
charge, a home visit, and a series of follow-
up phone calls to help the patient make the
successful transition. Several tools are avail-
able to help transition care coaches perform
their tasks (e.g., the patient activation assess-
ment tool, which assesses the progress of
the patient during follow-up visits; the PHR
documentation maintained by the patient on
medical conditions and medications; a list of
questions that patients can ask of their pri-
mary care physicians) (Coleman, 2006).
The CTI model is fl exible in its imple-
mentation as it promotes engagement of pro-
fessionals from various disciplines including
nurses, pharmacists, community workers,
or social workers as the designated transi-
tion coach (California Health Care Founda-
tion, 2008). This model has been fi eld-tested
by several organizations as a strategy for
improving postdischarge patient care across
settings (Adler, Lipkin, Cooper, Agolino, &
Jones, 2009; California Health Care Founda-
tion, 2008; Graham, Ivey, & Neuhauser, 2009;
Naylor & Keating, 2008; Parry et al., 2006),
and is supported as a strategy to improve care
transition by major health-care organizations,
including the Medicare Payment Advisory
Commission, Centers for Medicare and Med-
icaid Services, Joint Commission for Hospitals
and Quality Improvement, and the American
Board of Internal Medicine (California Health
Care Foundation, 2008).
Evidence suggests that while most older
patients face diffi culties in making a success-
ful transition from one setting to another, the
barriers are even more pronounced for older
adults from minority ethnic groups, recent
immigrants, older people without spouses,
and those who have limited English-language
skills (Graham et al., 2009). The CTI model
can benefi t these patients, especially if a cul-
turally competent transition coach is available.
Box 16.3 describes the CTI model in greater
detail.
Although the transition coach role for so-
cial workers is innovative, there are challenges
to its full implementation in health-care set-
tings. These include lack of adequate staffi ng,
high turnover among staff, lack of resources in
the community, collaborating effectively with
community providers, convincing patients and
families to take part in the process, and mak-
ing follow-up home visits within two days of
discharge (California Health Care Foundation,
2008).
Home Health-Care Settings
In 2007, 7.6 million individuals in the United
States received home health services from
more than 17,000 providers (National Associa-
tion of Home Care, 2001). The major sources
of funding for home health-care are through
Medicare and Medicaid, followed by private
out-of-pocket payments. Certifi ed Medicare
home health-care providers have to meet the
minimum federal standards of patient care
and are expected to maintain an electronic
Outcome and Assessment Information Set
(OASIS) database. This database consists of
core elements of a clinical assessment for all
the adult home care patients served. The major
components of the OASIS are living arrange-
ments, supportive assistance, sensory status,
skin condition, respiratory status, elimination,
neuro/behavioral/emotional status, ADLs and
IADLs, medications, medical equipment man-
agement, and emergent care (Kane, 2000b).
The federal government utilizes this infor-
mation for cost reimbursement and ongoing
monitoring to measure patient outcomes for
purposes of outcome-based quality improve-
ment. A physician has to refer an older pa-
tient for home health-care services in order
ch16.indd 412ch16.indd 412 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 413
to receive Medicare and Medicaid reimburse-
ment. Similarly, Medicare mandates that so-
cial workers’ services are covered only if they
are ordered by physician. The goal of home
health-care services for an older person is to
reduce the length of inpatient hospital stays
and delay of discharge or prevent nursing home
placement or hospital readmission through the
provision of a range of health and social ser-
vices within the home setting (Dyeson, 2004).
Recent reports on home health care show an
overall increase in the number of home care
agencies since 2001. Estimates are that about
12,564 social workers currently are employed,
with an average of 3.31 visits per client
(National Association for Home Health Care
Box 16.3 Coleman Care Transitions
Intervention
The next elements are the essence of the
CTI using a transitional coach.
• Identifi cation of patients. Generally,
patients who are at high risk for relapse
postdischarge are identifi ed through
referral or direct recruitment through
high-risk screening based on routine
screening and assessment by social
workers, nurses, or other community
health-care workers. High-risk patients
can be identifi ed in settings such as
hospitals or nursing care facilities.
• Discharge planning. Conduct an initial
visit to prepare patient for discharge.
Prior to discharge introduce personal
health record and the discharge
preparation checklist to patient. The
PHR includes the patient’s demographic
information, medical history, primary care
physician, caregiver contact information,
advance directives, medications and
allergies, and a list of warning signs (red
fl ags). The discharge preparation checklist
is completed prior to discharge to ensure
that patients understand the discharge
process and recommendations.
• Follow-up postdischarge. Conduct home
visit(s) and/or phone calls within 24 to 48
hours postdischarge depending on patient
needs and risk of relapse. Remind the
patient to share PHR with the primary care
physician/specialist and discuss outcome
of this visit with patient to ensure care
compliance and reduce potential relapse
risk. During home visits, the transition coach
can undertake patient assessment, education,
and activation in self-management skills and
gather important information on the patient’s
functional abilities, mental abilities, social
support, and environmental challenges that
inform decisions related to self-management
capabilities and needs.
• Termination. Length of intervention is
approximately four weeks following
discharge. Prior to termination, assess
patient’s stability and refer the patient
to complementary resources in the
community to ensure continuity of care
and support as needed.
In contrast to traditional case management
approaches, the CTI is a self-management
model where a transition coach utilizes
modeling techniques rather than “doing”
it for the patient. To help the patient and
caregiver assume greater involvement and
control over postdischarge care, the focus is
on patient education and training by provid-
ing information on health care, symptom
management, medication management,
follow-up with doctors, and maintenance of
the PHR based on self-assessment.
Patients who participated in the CTI were
signifi cantly less likely to be readmitted to
the hospital, and the benefi ts were sustained
for at least fi ve months after the end of the
one-month intervention.
Source: Adapted from “The Care Transitions
Intervention: A Patient-Centered Approach to Ensuring
Effective Transfers between Sites of Geriatric Care,”
by C. Parry, E. Coleman, J. Smith, J. Frank, and A.
Kramer, 2003, Home Health Services Quarterly, 22(3),
pp. 1–17; and the Care Transitions Program at
www.caretransitions.org/
ch16.indd 413ch16.indd 413 9/22/11 5:38 PM9/22/11 5:38 PM
414 Health Social Work: Selected Areas of Practice
and Hospice, 2008). More than three fourths
of benefi ciaries reported having no problems
accessing home health-care services, which
confi rms the existence of a well-coordinated
linkage of services to meet client needs.
Minority older adults, however, are less likely
to use home care services because of lack of
awareness of their availability (Choi, Crist,
McCarthy, & Woo, 2010).
Home health-care users are more likely
to be White, female, poor, widowed, and di-
vorced or single; live alone; have functional
limitations in ADLs; and reside in urban areas
(Kadushin, 2004). About 69% of all Medicare
benefi ciaries are 65 years older, with most re-
ceiving home health care because of an acute
episode of a chronic illness, such as diabe-
tes, hypertension, heart failure, chronic skin
ulcer, or osteoarthritis (National Association
for Home Health Care and Hospice, 2008).
In addition, many have psychosocial issues
that compound their illnesses and require care
from multiple professionals, including social
workers (Lee & Gutheil, 2003).
Following hospital discharge, a homebound
patient may require multiple services by a
variety of health-care providers. Nurses and
physical therapists may assist with medication
and rehabilitation; home health aides may as-
sist the patient with personal care activities,
such as bathing and transferring (i.e., getting
in and out of bed or a chair); and homemak-
ers may assist with light housekeeping, such
as meal preparation, shopping, and laundry. In
addition to coordinating these supportive ser-
vices, home health social workers can arrange
for community services, such as transportation
and friendly visitor volunteers. They help the
family and older person adjust to having pro-
viders enter the home and often provide sup-
portive or therapeutic counseling services or
arrange for similar services from other agen-
cies in the community (Dziegielewski, 2004;
Lee & Gutheil, 2003; McInnis-Dittrich, 2009).
A critical function of the social worker
is to assess and facilitate the caregiver’s in-
volvement in the patient’s recovery and reha-
bilitation. Social workers may help caregivers
identify, secure, and utilize other community
services, such as adult day health care, to
meet the changing needs of the patient (Rossi,
1999). Social workers frequently are engaged
in negotiating with health-care providers for
specifi c services, service units, time slots,
requesting for specifi c staff, and the like, to
match the patient’s needs with services. The
frequency of denial of requested services is
greater in home health settings due to changes
in cost reimbursement policies (conversion
from a cost-based reimbursement system to a
prospective payment system), and social work-
ers feel ethically obligated to advocate for their
patients (Kadushin & Egan, 2001).
Nursing Home Settings
According to the National Nursing Home Sur-
vey, 16,000 nursing homes were operating in
the United States in 2004 with about 1.5 mil-
lion residents, 88.3% of whom were age 65
years and over (National Center for Health
Statistics, 2004). Historically, nursing homes
were viewed only as long-term care facilities.
However, the past decade has seen greater
use of nursing homes for short stays for re-
habilitation and care after discharge from the
hospital with a concomitant increase in the
role of Medicare in fi nancing nursing home
care (Rhoades & Sommers, 2003). Residents
who are married or living with a partner tend
to stay in nursing homes for the least amount
of time, compared with widowed, divorced,
single, or never-married residents (Talley &
Crew, 2007). Seventy-one percent of nursing
home residents are female, 57% are widowed,
and more than half require assistance in all
fi ve areas of ADLs—bathing, dressing, eat-
ing, transferring, and toileting—indicating a
high level of dependence of care. Evidence
suggests that nearly a third of residents are
bowel incontinent and over three fourths of
them have stage 2 pressure ulcers, which are
painful and may lead to other health complica-
tions and infections. A quarter of the residents
have the circulatory problems as their primary
diagnosis, followed by mental disorder (22%)
and disease of the nervous system and sense
organs (National Center for Health Statistics,
ch16.indd 414ch16.indd 414 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 415
2004). In addition, residents older than 75 years
frequently are diagnosed with dementia and
psychiatric conditions, such as schizophrenia
and mood disorders. According to the report, the
most common mental health disorders residents
suffer are delirium, dementia, and depression.
Depression is common among nursing
home residents (Jakubiak & Callhan, 1995–
1996; Masand, 1995), especially in patients
diagnosed with Alzheimer’s disease. Often it
is attributed to coexisting conditions or simply
to aging, and thus fails to receive appropriate
intervention (Adamek, 2003). The most fre-
quently received services by residents include
nursing, medicines, medical, personal care,
nutritional, social services, and equipment or
assistive devices. Other services commonly
received from other outside sources include
hospice, therapy, podiatry services, dental and
oral services, and diagnostic services (National
Nursing Home Survey, 2004, www.cdc.gov
/nchs/nnhs/nnhs.htm). Residents who are older
and more functionally and cognitively im-
paired are more likely to receive end-of-
life care; three quarters of residents have at
least one advance directive on their records
(National Center for Health Statistics, 2008).
Private for-profi t nursing facilities employ
more full-time social workers (19%) than
not-for-profi t homes (7%) and government-
run nursing homes (6%) (Center for Health
Workforce Studies, 2006) with social workers
employed as administrators, specialized unit
directors (e.g., dementia care) or direct practi-
tioners. Within the nursing home setting, social
workers perform a variety of functions, such
as doing psychosocial assessments (Nathanson
& Tirrito, 1998), working to resolve family
confl icts with facility staff and administra-
tion (Iecovich, 2000; Vinton, Mazza, & Kim,
1998), and addressing problem behaviors of
nursing home residents (Tirrito, 1996). In most
nursing homes, social workers are responsible
for conducting the preadmission screenings to
determine if patients have any major mental
disorders (mental retardation, developmen-
tal disability, or related disorders) in order to
provide appropriate referrals and treatment
(Cowles, 2003; Dziegielewski, 2004).
All Medicare- and Medicaid-certifi ed nurs-
ing home facilities require a comprehensive
assessment of residents within 14 days of ad-
mission. In response to public and professional
concern about the quality of care in nursing
homes across the country in the 1980s, Con-
gress directed the Health Care Financing Ad-
ministration to study how to improve nursing
home regulation. That administration con-
tracted with the Institute of Medicine, which
issued a report in 1986 titled “Improving the
Quality of Care in Nursing Homes.” Congress
included many of the institute’s recommenda-
tions from this report as part of the 1987 Om-
nibus Budget Reconciliation Act. Based on the
institute’s report, the act’s regulations require
the assessment of nursing home residents in
18 functional areas. The Minimum Data Set
was developed as a recommended format for
that comprehensive assessment (American
Geriatrics Society, 2000). In most facilities,
social workers complete the psychosocial as-
sessment of the minimum data set to develop
the care plan for the resident (Cowles, 2003;
Dziegielewski, 2004).
Among the most frequently cited sources
of distress that older patients face in transi-
tioning into nursing home settings are feel-
ings of loss and abandonment; adjustment to
new environments; fear and anxiety related to
life changes, illness, and prognosis; and loss
of privacy, independence, and family connec-
tion. Social workers can help residents adjust
to their environments by providing emotional
support and initiating appropriate interven-
tions (individual, family, and group) to en-
hance psychosocial functioning. They also
can facilitate social integration within nursing
homes through planned recreational activities
in that setting. In conjunction with the provi-
sion of direct services to residents, involve-
ment of family is especially critical during
admission and discharge (Kruzich & Powell,
1995; Vourlekis, Gelfand, & Greene, 1992).
Informal support networks can provide valu-
able assistance to older people during their
stays in nursing homes by providing support
and monitoring the quality of care provided by
the staff.
ch16.indd 415ch16.indd 415 9/22/11 5:38 PM9/22/11 5:38 PM
http://www.cdc.gov/nchs/nnhs/nnhs.htm
http://www.cdc.gov/nchs/nnhs/nnhs.htm
416 Health Social Work: Selected Areas of Practice
Because family members are considered an
integral part of care plans, social workers may
want to provide meaningful services to them—
for example, therapeutic caregiver support
groups or educational groups on illness or end-
of-life issues. In settings like nursing homes,
where the patients and family members may
be unable to negotiate the client’s care due to
frailty, inability to make personal decisions,
or bureaucracy, social workers can advocate
on behalf the patient and empower families
to voice their concerns and to negotiate the
patient’s treatment needs and care. They also
may work with resident councils to improve
the quality of care in facilities. In other situ-
ations, where there may be confl ict between
family members and nursing home staff, social
workers can mediate to help resolve the con-
fl ict and facilitate improved communication.
ISSUES AND CHALLENGES
TO SOCIAL WORK WITH
OLDER INDIVIDUALS IN THE
CURRENT HEALTH-CARE
ENVIRONMENT
Demographic trends make clear that within
the next decade, older adults will represent
a larger proportion of individuals seen in all
parts of the health-care system (primary care,
specialty care, inpatient hospital stays, nurs-
ing care). As the costs of health care continue
to skyrocket, attempts to manage these costs
have altered the context in which health care
is delivered and signifi cantly infl uenced the
practice of social work in a variety of health-
care settings. The principal idea underlying
managed care has been to control the costs
by decreasing “unnecessary utilization” of
health-care services, which is accomplished
through budget restrictions, case management
and utilization review, incentives to providers
for limiting services, and using the primary
care provider as the gatekeeper for access to
care (Berkman, 1996). Managed care, how-
ever, presents social workers with a dilemma
of being a patient advocate while, to a certain
extent, a gatekeeper of resources. For example,
can social workers adequately assess the needs
of patients and their families given prevailing
time restraints? Can they attend to the prefer-
ences of the patient and the family given the
institutional mandate to develop and imple-
ment a discharge plan that minimizes length
of stay (Moody, 2004)?
Although Medicare has enabled access to
health care for the population that is 65 and
older, older adults have experienced signifi –
cantly higher out-of-pocket expenditures re-
lated to health care through time, especially
for prescription drugs, compared to other age
groups, and spend a greater proportion of their
income on health care (Administration on
Aging, 2010). Thus, advocacy and resource
development for health-care products and ser-
vices will remain important tasks for social
workers in health-care settings.
Given the shortening of inpatient stays in
hospitals and the changing nature of nurs-
ing home stays (short stay, postacute care),
community-based care models will need to
be developed to help maintain older adults in
community settings. However, the ability to
maintain older individuals in the community
depends on the availability and pulling together
of several community resources. In commu-
nities where resources are underdeveloped
or where services are fi nancially beyond the
reach of clients, case management may sim-
ply become a referral service that fails to ad-
equately address the needs of older adults and
their families (Netting, 1992). Policy advocacy
for supporting family caregivers will remain an
important area of social work practice to sup-
port community-based care for older adults.
In addition, with increasing frailty among the
population as it ages, the need for advocacy to
integrate physical care with in-home psychiat-
ric care will be critical, to increase access to
psychiatric service, reduce hospital readmis-
sions, and save cost. Finally, health promotion
and disease prevention activities at the indi-
vidual and community levels that help older
people maintain functional autonomy and
physical and psychological well-being will be
important areas of social work intervention.
ch16.indd 416ch16.indd 416 9/22/11 5:38 PM9/22/11 5:38 PM
Social Work With Older Adults in Health-Care Settings 417
SUGGESTED RESOURCES
Administration on Aging—www.aoa.gov
This site provides information about
programs, services, and opportunities
for older adults and their caregivers.
Also links to: Eldercare Locator, www
.eldercare.gov, which furnishes infor-
mation on state and local area agencies
on aging as well as community-based
service organizations that provide ser-
vices to older adults and their care pro-
viders.
American Association of Retired Persons
(AARP)—www.aarp.org
AARP is a national, nonprofi t advo-
cacy organization for adults age 50 and
over. Main topic areas include: care and
family, health and wellness, legislation
and elections, money and work, policy
and research, and travel and leisure. The
information on the AARP Web site is
also available in Spanish.
American Geriatrics Society (AGS)—
www.americangeriatrics.org/
AGS is a not-for-profi t organization
of health professionals (primarily physi-
cians) devoted to improving the health,
independence, and quality of life of all
older people. The Web site has useful in-
formation especially on policy advocacy
and publications on ethnogeriatrics, such
as Doorway thoughts: Cross-cultural
health care for older adults, vols. 1–3
(AGS 2004, 2006, 2008).
Benefi ts Checkup—www.benefi tscheckup
.org
This online service allows individuals
(age 55 and over) to check whether they
may qualify for a variety of program
benefi ts. The service screens over 1,100
programs for federal, state, and local
public and private benefi ts.
Care Transitions Program—www.caretran
sitions.org/
This program provides descriptions,
tools, references, and evidence for the
effectiveness of the Care Transitions In-
tervention designed to improve quality
of care and patient safety during care
handoffs.
Centers for Disease Control and Preven-
tion—www.cdc.gov/
This is the offi cial Web site for the
federal agency that monitors American’s
health and safety. Health and safety top-
ics applicable to older adults include:
disabilities, diseases and conditions, en-
vironmental health, health promotion,
and vaccines and immunizations. State
and national health and safety data and
statistics are also available on this Web
site.
Centers for Medicare & Medicaid—www
.cms.hhs.gov/
This is the agency’s offi cial Web site.
It describes programs, benefi ts, and eli-
gibility rules for Medicare and Medicaid.
Council on Social Work Education Gero-Ed
Center—www.cswe.org/CentersInitiatives
/GeroEdCenter.aspx
This site contains evidence-supported
resource reviews, teaching modules, and
practice demonstration videos on aging-
related topics in the advanced social
work practice areas of health, mental
health, and substance use. The Health
Resource Review is an excellent resource
review on social work with older adults.
Family Caregiver Alliance (FCA)—www
.caregiver.org
FCA is a national advocacy organiza-
tion. The Web site’s topic areas include:
public policy and research, caregiving
information, fact sheets and publica-
tions, newsletters, online discussion and
support groups (including specialized
groups, such as LGBT support groups),
and news releases. The Web site infor-
mation is also available in Chinese and
Spanish.
Hartford Geriatric Nursing Institute—
consultgerirn.org/resources
This site is an excellent resource of-
fering articles, case studies, and videos
demonstrating the use of assessment
tools for a variety of topics relevant to
the care of older adults.
ch16.indd 417ch16.indd 417 9/22/11 5:38 PM9/22/11 5:38 PM
http://www.aoa.gov
http://www.aarp.org
http://www.americangeriatrics.org
http://www.benefitscheckup.org
http://www.cdc.gov
http://www.cswe.org/CentersInitiatives/GeroEdCenter.aspx
http://www.eldercare.gov
http://www.eldercare.gov
http://www.benefitscheckup.org
http://www.cms.hhs.gov/
http://www.cms.hhs.gov/
http://www.cswe.org/CentersInitiatives/GeroEdCenter.aspx
http://www.caregiver.org
http://www.caregiver.org
http://consultgerirn.org/resources
418 Health Social Work: Selected Areas of Practice
Massachusetts Institute of Technology Age
Lab—agelab.mit.edu/
The Age Lab was created to invent
new ideas and creatively translate tech-
nologies into practical solutions that im-
prove people’s health and enable them to
“do things” throughout the life span. The
site describes numerous projects that are
in process.
Medicare Rights Center—www.medicarerights
.org/
Subtitled “Your Guide through the
Medicare Maze,” this national, nonprofi t
organization provides information on
Medicare plan options and current pol-
icy changes.
Psychosocial Measures for Asian-American
Populations: Tools for Direct Practice
and Research—www.columbia.edu
/cu/ssw/projects/pmap/about.htm
This site, maintained by the School
of Social Work at Columbia University,
contains information on the validity and
reliability of a number of assessment in-
struments with Asian American popula-
tions.
Social Security Administration—www
.socialsecurity.gov
This is the offi cial SSA Web site. It
offers information on Social Security
programs and policies. In addition, indi-
viduals can process online claims, esti-
mate their future benefi ts, and apply for
replacement Social Security cards.
Stanford Geriatric Education Center—sgec
.stanford.edu/
This Web site provides a compre-
hensive curriculum in ethnogeriatrics
(a fi ve-module core curriculum with 11
ethnic-specifi c modules. The primary fo-
cus of the SGEC is to provide training
on culturally sensitive geriatric care. It
is an excellent source of ethnogeriatric
information.
Veterans Administration (VA)—www
.va.gov
This is the VA’s offi cial Web site. It
supplies information on veterans’ health
benefi ts and services, vocational reha-
bilitation and employment services, pen-
sion benefi ts, and burial and memorial
benefi ts.
Volunteers in Health Care (VIH)—www
.volunteersinhealth care.org/home.htm
This is the national resource center
funded by the Robert Wood Johnson
Foundation for organizations and clini-
cians caring for the uninsured. The Web
site contains useful information on pre-
scription drug assistance programs at:
www.rxassist.org
SUGGESTED READINGS
Beaulieu, E. M. (2002). A guide for nurs-
ing home social workers. New York, NY:
Springer.
Provides a comprehensive overview
of issues that social workers need to
know and address in nursing homes.
Hooyman, N., & Kiyak, A. (2010). Social
gerontology: A multidisciplinary per-
spective (9th ed.). Boston, MA: Allyn &
Bacon.
Reviews the literature on various
aspects of aging and discusses implica-
tions for a multidisciplinary audience in
the allied health and mental health pro-
fessions.
Kane, R. L., & Kane, R. A. (Eds.). (2000).
Assessing older persons: Measures,
meanings, and practical applications.
New York, NY: Oxford University
Press.
An edited book providing an excel-
lent review of available assessment tools
for each of the domains of assessment
discussed in this chapter.
Knight, B. G. (2004). Psychotherapy with
older adults (3rd ed.). Thousand Oaks,
CA: Sage.
Provides a practical account of the
knowledge, technique, and skills nec-
essary to work with older adults in a
therapeutic relationship. Case examples
ch16.indd 418ch16.indd 418 9/22/11 5:38 PM9/22/11 5:38 PM
http://www.columbia.edu/cu/ssw/projects/pmap/about.htm
http://www.rxassist.org
http://www.columbia.edu/cu/ssw/projects/pmap/about.htm
http://www.socialsecurity.gov
http://www.socialsecurity.gov
http://www.va.gov
http://www.va.gov
http://www.volunteersinhealthcare.org/home.htm
http://www.volunteersinhealthcare.org/home.htm
http://agelab.mit.edu/
http://sgec.stanford.edu/
http://sgec.stanford.edu/
Social Work With Older Adults in Health-Care Settings 419
illustrate the dynamics of the therapeutic
task and issues covered in therapy and
stress the human element in working
with older adults.
LEARNING EXERCISE 16.1
Mr. and Mrs. C are an older Caucasian couple
who came to the attention of a hospital so-
cial worker after Mrs. C had been hospital-
ized for dehydration. She was brought to the
hospital based on the recommendation of her
primary care physician, who had found her
to be quite confused and delirious during her
visit to the doctor’s offi ce. Mrs. C had been
stable over the past few days, but her age (73)
and her confusion had fl agged her as an at-
risk patient who would need additional atten-
tion to develop an adequate discharge plan.
The social worker learned that the Cs lived in
their own home and their only son lived about
200 miles away from them. The Cs lived
modestly on their pension and Social Secu-
rity. Mr. C indicated that he wanted his wife
discharged to their home as he was quite ca-
pable of looking after her. Mr. C himself did
not appear to have any observable limitations
in his ability to carry out activities of daily
living, although he did look tired. The social
worker was not entirely convinced of Mr. C’s
ability to care adequately for his wife—she
did, after all, have to be hospitalized due to
dehydration. According to the patient’s chart,
Mrs. C’s confusion still seemed to persist, al-
though she seemed quite lucid when talking
to the social worker. The physician and the
nursing staff wanted the social worker to de-
velop a discharge plan fairly quickly. The hos-
pital social worker decided that Mrs. C should
be discharged to her home in the care of her
husband. However, she recommended that the
physician order home health care for Mrs. C
as a nurse could monitor her condition and a
social worker could do a more comprehensive
assessment in the client’s home. This way, at
least someone could monitor this situation for
several weeks.
Did the hospital social worker do every-
thing she could have done with planning
for the couple? What were some of the con-
straints or dilemmas the social worker expe-
rienced?
ABC Home Health is the agency selected
to provide in-home care to Mrs. C. The home
health social worker visits the home once to
make an assessment. The house seems a little
cluttered. Mr. C notes that he does all of the
housework but because of the pain caused
by his arthritis, he cannot get things done
quickly. The social worker suggests that they
try to get some homemaker assistance. She
gives Mr. C the contact information for the
local Area Agency on Aging and also sug-
gests that Mr. C call his son to discuss long-
term care plans since they would likely need
more assistance as time went by. Mr. C. calls
the Area Agency on Aging for homemaker
assistance but is put on a waiting list. One
month later, Mr. C trips on an area rug, which
results in a leg fracture, and he ends up in the
hospital.
How could this fall have been prevented?
What are some of the resources in the com-
munity that could have been helpful to the
couple? What are the options for Mrs. C
now? Research your community’s resources
to learn more about how you could help the
couple.
Additional Discussion Questions
To use the case for an ethnogeriatric assess-
ment exercise: Change the ethnic background/
context of the client (e.g., monolingual Mexi-
can American, Vietnamese American who
immigrated to the United States for family
unifi cation), and integrate the ethnogeriatric
principles described in the chapter for assess-
ment of the case.
To use the case for a care transition coach
exercise: Incorporate the use of a transi-
tional coach and discuss issues to be ad-
dressed in assisting the client to maintain
stability and reduce relapse of the primary
condition.
ch16.indd 419ch16.indd 419 9/22/11 5:38 PM9/22/11 5:38 PM
420 Health Social Work: Selected Areas of Practice
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426
17
Substance Use Problems in
Health Social Work Practice
MALITTA ENGSTROM, COLLEEN A. MAHONEY, AND JEANNE C. MARSH
Substance use problems are widespread in
our society and are present across diverse age,
gender, sexual orientation, racial, cultural, and
socioeconomic backgrounds. Social workers,
regardless of the setting in which they work,
are likely to encounter clients with substance
use problems. Given the health effects of sub-
stance use, social workers in health-care set-
tings are particularly likely to encounter this
population. Whether patients present with
physical illnesses directly related to substance
use (e.g., cirrhosis of the liver) or with health
problems with no obvious link to substance
use, it is crucial that health social workers be
aware of the potential role of substance use
in clients’ health, treatment, and social needs
(Abbott, 2002). This chapter provides social
workers with basic knowledge and core skills
necessary to address substance use problems
across a variety of clients and health-care
settings.
Chapter Objectives
• Defi ne terms and diagnostic categories used
to describe substance use problems.
• Identify the prevalence of substance use
and problems across sociodemographic
groups.
• Present information about the psychoactive
and health effects of substances that are
commonly used.
• Provide an overview of practice and re-
search regarding prominent approaches to
assist people experiencing substance use
problems.
• Provide general information to guide
screening for substance use problems and
brief intervention to address these problems
in health-care settings.
DEFINITION OF TERMS
A variety of expressions are used to describe
substance use problems in lay and professional
writing and conversation. Addiction, drug
abuse, and alcoholism are but a few common
terms. It is widely agreed, however, that these
and other terms are not always used in a con-
sistent fashion (National Institute on Alcohol
Abuse and Alcoholism [NIAAA], Center for
Substance Abuse Prevention [CSAP], & Pub-
lic Health Service, 1995; White, 1998). Yet the
use of a stable vocabulary is essential. In ad-
dition, because of the particular role of health
social workers as translators between health-
care systems and patients (see Chapter 10 in
this book for a discussion of communication),
it is especially important to use language in
a clear, concise, and consistent manner. This
chapter begins with a clarifi cation of terms and
expressions.
This entire domain often is referred to as
the substance abuse fi eld or the addictions
fi eld (van Wormer & Davis, 2003). Although
both labels provide a shortcut to describing
ACKNOWLEDGMENT: The authors thank Scott
Petersen for his helpful comments on an earlier ver-
sion of this chapter.
JWBT514_ch17.indd 426JWBT514_ch17.indd 426 9/21/11 7:43 PM9/21/11 7:43 PM
Substance Use Problems in Health Social Work Practice 427
p. 16) and therefore is not included in the dis-
cussion of legal drugs.
Certain levels of problematic substance use
do not meet the criteria for a diagnosable dis-
order but nonetheless may require attention.
Standard terminology exists for designating
amount of use and potential risk. For example,
research on and clinical screening for prob-
lematic alcohol use generally defi nes current
use as at least one drink in the past 30 days,
binge use as fi ve or more drinks on the same
occasion at least once in the past 30 days,
and heavy use as fi ve or more drinks on the
same occasion at least fi ve different days in
the past 30 days, according to the Substance
Abuse and Mental Health Services Adminis-
tration [SAMHSA] (2009). However, NIAAA
(2004a) recently has revised the defi nition
of binge drinking to consumption that el-
evates blood alcohol concentration (BAC) to
.08 gram percent and higher. This BAC is typi-
cally achieved among men by consuming fi ve
drinks or more in a 2-hour period and among
women by consuming four drinks or more in
a 2-hour period.
Intoxication, withdrawal, craving, toler-
ance, dependence, and addiction are impor-
tant terms that describe various aspects of the
experience of using psychoactive substances.
Intoxication describes a reversible state caused
by the recent use of a substance that typically
is characterized by a substance-specifi c con-
stellation of physiological, behavioral, and
cognitive-emotional changes. Withdrawal,
however, describes substance-specifi c behav-
ioral, physiological, and cognitive-emotional
changes that result from stopping or reduc-
ing substance use, particularly when use has
been signifi cant and long term. Withdrawal
typically involves the opposite experiences
that are associated with intoxication of the
substance consumed (e.g., the euphoria of co-
caine intoxication is countered by feelings of
depression in cocaine withdrawal) and occurs
with these psychoactive substances: alcohol;
nicotine; cocaine; opioids; amphetamines and
related substances; and sedatives, hypnotics,
or anxiolytics. Craving, or the intense desire
to use the substance, often occurs while in
the fi eld, it is important to note that they also
can take on other meanings depending on the
context. Substance abuse, although commonly
used to denote a range of substance use prob-
lems, distinguishes a specifi c disorder in the
Diagnostic and Statistical Manual of Men-
tal Disorders, Fourth Edition, Text Revision
(DSM-IV-TR; American Psychiatric Associa-
tion, 2000). Addiction most commonly im-
plies a severe level of problematic substance
use that involves dependence and continued
pursuit and use of substances in the midst of
negative consequences. Furthermore, addic-
tion often is applied to problematic behaviors
other than substance use (e.g., gambling). In
this chapter, the discussion is limited to the be-
havior of problematic psychoactive substance
use; however, it is not restricted to substance
use that meets the criteria for specifi c disor-
ders but includes all levels of problematic use.
Accordingly, the expression substance use
problems is used to designate the entire range
of problematic substance use. At times, when
brevity and grammar require it, the term sub-
stance abuse is used in a general way to denote
all levels of substance use problems.
The term substance refers to both legal and
illegal psychoactive substances that affect the
central nervous system (CNS) when consumed.
Users experience pleasure or diminished pain
through the alteration of mood, cognition,
perception, memory, or consciousness. Alco-
hol, nicotine, and caffeine are legal psychoac-
tive substances. The term drug is used most
often to refer to illegal “street” psychoactive
substances (e.g., marijuana, cocaine, heroin)
and prescribed medications used illegally. The
acronyms AOD (alcohol and other drugs) and
ATOD (alcohol, tobacco, and other drugs),
however, emphasize that alcohol and tobacco
are themselves drugs. These acronyms assist in
countering the popularly held myth that street
drugs are different from, and more dangerous
than, alcohol and tobacco. In this chapter, the
term substance denotes both legal and illegal
psychoactive substances. Although caffeine, a
stimulant, is widely used, it “does not ordinar-
ily pose a threat to health or an impairment
to functioning” (McNeece & Barbanell, 2005,
JWBT514_ch17.indd 427JWBT514_ch17.indd 427 9/21/11 7:43 PM9/21/11 7:43 PM
428 Health Social Work: Selected Areas of Practice
the state of withdrawal to alleviate symptoms
(American Psychiatric Association, 2000).
After using a substance over time, individuals
develop tolerance when they must use more of
the substance to achieve the same effect previ-
ously achieved with a smaller amount (Wilcox
& Erickson, 2005). The terms addiction and
dependence are not defi ned consistently. As
noted by O’Brien and Volkow (2006), it is
important to distinguish between the normal
physical dependence that is associated with
numerous psychoactive medications (e.g., opi-
oids, beta-blockers, and antidepressants) and
addiction. Tolerance and withdrawal, which
are anticipated physiological responses to nu-
merous psychoactive substances, do not nec-
essarily indicate that a person is experiencing
addiction, which involves problematic pursuit
of drugs despite negative consequences. Such
confusion, according to O’Brien and Volkow,
can keep clinicians from providing appropriate
pain medication when clients display tolerance
and withdrawal even though addiction is not
present. In addition, they argue, some clients
may needlessly avoid appropriate pain medi-
cation because they equate physical depen-
dence with addiction. Finally it is important
to note that the DSM diagnosis of substance
dependence does not necessarily require the
experience of tolerance or withdrawal (Ameri-
can Psychiatric Association, 2000).
DIAGNOSTIC CATEGORIES
The DSM-IV-TR (American Psychiatric As-
sociation, 2000) classifi es substance-related
disorders into two groups. Substance use dis-
orders are defi ned by a pattern of problem-
atic substance use and include the diagnostic
categories of substance abuse and substance
dependence. Substance-induced disorders
refer to the patterns of physiological, behav-
ioral, cognitive, and emotional responses to
substance ingestion and substance use cessa-
tion. These include substance intoxication and
substance withdrawal as well as substance-
induced mental disorders (e.g., delirium, per-
sisting dementia, persisting amnestic disorder,
psychotic disorder, mood disorder, anxiety
disorder, sexual dysfunction, sleep disorder).
The DSM-IV-TR (American Psychiatric
Association, 2000) provides general criteria that
apply across substances for substance abuse, de-
pendence, intoxication, and withdrawal. In ad-
dition, it provides specifi c information for each
of these diagnoses across 11 different classes of
substances. This section describes general crite-
ria for substance use disorders.
Substance Abuse
This disorder is characterized by repeated use
of a substance that leads to negative conse-
quences but is not severe enough to meet the
criteria for substance dependence diagnosis.
Nicotine and caffeine are not included among
the substances that can meet criteria for abuse.
Specifi c DSM-IV-TR criteria for substance
abuse can be found in the Diagnostic and Sta-
tistical Manual of Mental Disorders, Fourth
Edition, Text Revision (American Psychiatric
Association, 2000).
Substance Dependence
This disorder is characterized by a constella-
tion of symptoms indicating that the individ-
ual continues to use the substance although
signifi cant negative consequences result. The
individual repeatedly seeks and consumes
the substance and may experience tolerance
for and withdrawal from the substance. Indi-
viduals who meet the criteria for substance
dependence disorder are not diagnosed with
substance abuse disorder. Specifi c criteria
can be found in the Diagnostic and Statistical
Manual of Mental Disorders, Fourth Edition,
Text Revision (American Psychiatric Associa-
tion, 2000).
The terms alcoholism and drug addiction
are generally interchangeable with substance
dependence. Alcoholic and addict are terms
used to describe the person with alcohol
dependence disorder or another substance
(generally illegal) dependence disorder, re-
spectively. These terms are part of a common
vocabulary within many self-help groups,
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Substance Use Problems in Health Social Work Practice 429
such as Alcoholics Anonymous (AA), and
can be important identifying labels for those
active in these groups. Nonetheless, these
labels also can be stigmatizing. It is prefer-
able to replace the terms alcoholic and addict
with person-fi rst language, such as “a person
experiencing alcohol (or other substance) de-
pendence.” Person-fi rst language, which often
is used with other physical, psychological,
and developmental conditions, assists in con-
veying the fact that the health condition does
not defi ne the person’s entire identity. In addi-
tion, such language assists with emphasizing
that one is a person rather than a health con-
dition. There are efforts under way to replace
the term substance dependence with addiction
in the development of the DSM-5 (O’Brien &
Volkow, 2006). If such change occurs, person-
fi rst language that describes a person experi-
encing addiction still can be employed.
COMMONLY USED
SUBSTANCES
Media representations of substance abuse tend
to convey stereotypes that focus on people
with limited incomes in inner cities selling
and using illegal drugs (Cornelius, 2002). Al-
though there is no question that drug use is a
problem for the inner city, its reach and magni-
tude go far beyond the confi nes of urban areas
with high rates of poverty and include diverse
racial, cultural, gender, and income groups.
Furthermore, the use of legal drugs —tobacco
and alcohol—across socioeconomic groups
and regions represents the most prevalent and
costly component of drug-related problems
(SAMHSA, 2009). This section provides in-
formation about the epidemiology and the
psychoactive and health effects of legal and
illegal substances that are commonly used in
problematic ways.
Alcohol
The 2008 NSDUH indicates that just over half
of all Americans 12 years and older report cur-
rent use of alcohol (SAMHSA, 2009). More
than 50% of American adults have a close
family member who has met the diagnostic
criteria for alcohol dependence (Dawson &
Grant, 1998). Among children younger than
18 years in the United States, approximately
1 in 4 is exposed to alcohol abuse or alcohol
dependence in the family (Grant, 2000). In the
United States and worldwide, alcohol is one
of the most widely used and dangerous drugs.
Problematic use of alcohol leads to deleteri-
ous effects on biological, psychological, and
social well-being. Furthermore, its effects
may extend beyond the individuals engaged in
problematic alcohol use to their families and
communities.
Alcohol is a CNS depressant that, un-
like many other psychoactive substances, is
thought to affect multiple CNS neurotransmit-
ter systems (Moak & Anton, 1999). Kranzler
and Anton (1994) suggest that the relation-
ships between alcohol and neurotransmitter
systems are likely to vary across subtypes of
persons with alcohol use problems. Relatedly,
individuals vary in their levels of vulnerability
toward alcohol use disorders. Research sug-
gests that genetics account for approximately
60% of total vulnerability (Prescott & Kendler,
1999). Thus, close relatives of persons with al-
cohol use disorders should be educated about
their increased risk.
Epidemiology
The 2008 NSDUH indicates that young adults
age 18 to 25 years experience the highest
rates of problem drinking (SAMHSA, 2009).
Approximately 41% of this group reported
binge drinking in the past month, and 14.5%
reported heavy alcohol use in the same time
period. Within this group, men were more
likely than women to report binge (48.4% ver-
sus 33.6%) and heavy (19.9% versus 9.0%) al-
cohol use. Asian American young adults were
least likely to report binge (24.9%) and heavy
(6.4%) use. White American young adults age
18 to 25 years reported the highest rates of
problematic alcohol use (47.1% and 18.1% for
binge and heavy use, respectively).
In the same survey, adolescents age 12 to
17 years reported alcohol use at rates that are
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430 Health Social Work: Selected Areas of Practice
cause for concern. Approximately 30.8% used
alcohol in the past year, and 8.8% of the same
group had engaged in binge drinking in the
past month. Gender differences in drinking
rates were less signifi cant among adolescents
than among young adults. Interestingly, girls
age 12 to 17 years reported greater lifetime
alcohol use than boys (39.1% versus 37.6%).
Rates of past-month binge use were compara-
ble for boys and girls (8.9% and 8.7%, respec-
tively). Among diverse racial/ethnic groups,
Asian adolescents reported the lowest rates of
lifetime use (25.2%) and past-month binge use
(2.0%). African American youth also reported
relatively low binge use rates (4.0%). Ameri-
can Indian, Hispanic, and White American ad-
olescents reported the highest levels of lifetime
use (46.6%, 39.3%, and 39.8%, respectively).
After a peak in young adulthood, rates of
alcohol use, binge use, and heavy use slowly
decline as people age (SAMHSA, 2009). Be-
tween the ages of 26 and 64 years, current
alcohol use decreases from 67.4% to 50.3%.
Likewise, rates of binge and heavy alcohol use
slowly decrease as adults become older (from
42.6% to 14.6% for binge drinking and from
13.2% to 3.6% for heavy drinking). Men and
women age 26 years and older differed in their
reported rates of binge drinking (31.7% ver-
sus 13.2%). Among racial groups within the
same age range, Hispanic adults report the
highest rate of binge drinking (26.4%), Asian
adults report the lowest rate of binge drink-
ing (10.7%), and all other racial groups report
rates between 21.4% and 24.0%.
Over 8% (8.2%) of adults 65 years and
older reported binge drinking, and 2.2% re-
ported heavy drinking (SAMHSA, 2009).
Although these rates are relatively low when
compared with younger and middle-age adults,
alcohol use in older populations constitutes a
serious problem that should not be overlooked.
Older adults have unique vulnerabilities that
put them at greater risk of negative outcomes
when using even relatively small amounts of
alcohol. For example, individuals in this group
may reach higher BAC with less alcohol con-
sumption than individuals in other groups
(NIAAA, 2004a). In addition, alcohol use may
increase the risk of falls among older adults,
and recovery from such incidents can be dif-
fi cult (Center for Substance Abuse Treatment
[CSAT], 1998).
Health Effects
The health effects of alcohol use are wide
ranging and staggering. Alcohol has an effect
on multiple organs and systems and is asso-
ciated with several types of cancer. Illnesses
that are a direct result of or are severely ex-
acerbated by alcohol use account for 20% to
40% of patients in urban hospitals (NIAAA,
2000). Alcohol often is involved in episodes
of violence, injury, and trauma, which leads
to signifi cant and repeated contacts with the
health-care system. Research suggests that
alcohol is associated with 67% of partner as-
saults, 50% of homicides, 40% of traffi c fa-
talities, and 37% of rapes (NIAAA, 2000).
Perhaps the most telling evidence of alcohol’s
negative impact on health is the fact that aver-
age life span is decreased by 10 to 15 years for
persons with alcohol dependence (Schuckit &
Tapert, 2004).
Considerable research demonstrates that
chronic heavy drinking is a leading cause of
cardiovascular illnesses (NIAAA, 2000). In
fact, heart disease is the leading cause of early
mortality among those with alcohol depen-
dence (Schuckit & Tapert, 2004). Men with
alcohol dependence are two times more likely
than men without alcohol dependence to die
from atherosclerotic and degenerative heart
disease; women with alcohol dependence are
four times more likely to die from these dis-
eases than those who do not have alcohol de-
pendence (McNeece & DiNitto, 2005). Based
on a review of available evidence, the Dietary
Guidelines Advisory Committee (DGAC,
2010), appointed by the U.S. Drug Admin-
istration (USDA) and the U.S. Department of
Health and Human Services (DHHS), cites the
association between low to moderate amounts
of drinking (i.e., average alcohol consump-
tion of not more than two drinks per day for
men and one drink per day for women) and re-
duced risk of coronary heart disease, diabetes,
and all causes of mortality among middle-age
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Substance Use Problems in Health Social Work Practice 431
and older adults; however, as discussed by
Williams, Mohammed, Leavell, and Collins
(2010), African Americans, particularly Af-
rican American men, do not experience the
same gains. In addition, the effects of even
low or moderate levels of alcohol on risk of
breast cancer, colon cancer, liver cancer, and
unintentional injuries complicate the risk-
benefi t considerations of alcohol use. It should
be noted that gender, diet, lifestyle, and other
health factors may differentially infl uence the
relationship between alcohol and these cancers
(DGAC, 2010).
Liver disease commonly is associated with
alcohol use. According to the 10th Special
Report to the U.S. Congress on Alcohol and
Health (NIAAA, 2000), “long-term heavy al-
cohol use is the leading cause of illness and
death from liver disease in the United States”
(p. 198). The liver is central to human survival
and health because it both processes key nutri-
ents and assists the body’s defense system to
fi lter toxins from the blood. Long-term mod-
erate to heavy alcohol use is associated with
changes in the liver that are described in three
phases, together known as alcoholic liver dis-
ease. Fatty liver, the fi rst phase of the disease, is
generally reversible with abstinence. The sec-
ond phase of alcoholic liver disease, alcoholic
hepatitis, is characterized by infl ammation of
the liver. Cirrhosis, or scarring of the liver, is
the fi nal phase of this disease. The prognosis
for persons who have both alcoholic hepatitis
and cirrhosis is poor, with a death rate over
a four-year period greater than 60% (Chedid
et al., 1991). Alcohol also plays a signifi cant
role in other types of liver diseases. For ex-
ample, alcohol consumption may enhance ac-
etaminophen liver toxicity, and although the
specifi c mechanism is unknown, alcohol con-
sumption is associated with greater severity of
hepatitis C (NIAAA, 2000).
People who have alcohol dependence are
at increased risk for cancer, especially of the
head, neck, esophagus, and stomach; lung can-
cer occurs at higher rates in this group even
after controlling for smoking status. Although
not yet well understood at a physiological
level, it is clear that heavy alcohol use has
a signifi cant effect on the immune system.
Infections that are a result of immune defi –
ciency, such as pneumonia, occur at higher
rates among persons who are heavy alcohol
users than among the general population.
Human immunodefi ciency virus (HIV) rates
are higher among persons who abuse alcohol.
Several factors may contribute to this fi nding,
including high-risk sexual activity and injec-
tion drug use associated with alcohol use and
alcohol’s immune-suppressing effect, which
may increase susceptibility to HIV.
Chronic alcohol use can lead to multiple
neurological disorders. Neuropathy, a disorder
of the nerves in which an individual experi-
ences pain and numbness in the legs and feet, is
associated with heavy alcohol use. Wernicke’s
syndrome and Korsakoff’s psychosis also are
related to heavy use. They often occur in com-
bination and are characterized by confusion,
inability to learn new material, and other cog-
nitive defi cits (McNeece & DiNitto, 2005).
Risk of fetal alcohol syndrome and other
alcohol exposure–related disorders are of par-
ticular concern for women of childbearing age.
Drinking alcohol during pregnancy increases
the risk of spontaneous abortion, low birth
weight, small brain volume, heart defects,
varying levels of mental retardation, and fa-
cial abnormalities. Although binge drinking is
associated with increased risk to the fetus, no
amount of alcohol consumption during preg-
nancy has been established as safe (Stratton,
Howe, & Battaglia, 1995).
Tobacco
Although it is common knowledge that tobacco
is toxic and that its nicotine component is ex-
tremely addictive, tobacco use is not always
included in the substance abuse literature.
Nevertheless, no other psychoactive substance
is associated with the morbidity and mortal-
ity of tobacco (Slade, 1999). The National In-
stitute on Drug Abuse (NIDA, 2001a) reports
that “tobacco kills more than 430,000 U.S.
citizens each year—more than alcohol, co-
caine, heroin, homicide, suicide, car accidents,
fi re, and AIDS [acquired immunodefi ciency
JWBT514_ch17.indd 431JWBT514_ch17.indd 431 9/21/11 7:43 PM9/21/11 7:43 PM
432 Health Social Work: Selected Areas of Practice
syndrome] combined” (p. 3). In spite of high
rates of use, known negative health conse-
quences, and the fact that treatment works
(NIDA, 2001a), health providers rarely offer
smokers assistance with quitting (U.S. Pub-
lic Health Service [USPHS], 2000). Further-
more, individuals who have other substance
use problems or serious mental illness are of-
fered assistance with smoking cessation even
less frequently, even though they may have
a greater need for services than the general
population (Grant, Hasin, Chou, Stinson, &
Dawson, 2004).
The reasons for this treatment failure are
complex. Until recently, few effective treat-
ments for smoking cessation had been iden-
tifi ed. Furthermore, health-care systems did
not support their consistent delivery (USPHS,
2000). However, research conducted by
Lemon, Friedman, and Stein (2003) with
2,316 participants from the Drug Abuse Treat-
ment Outcome Study (DATOS) who reported
consumption of cigarettes at the beginning of
the study and who participated in follow-up
interviews suggests that smoking cessation
is positively associated with increased absti-
nence from illegal drug use 12 months after
completing substance use treatment. Although
it should be noted that those who smoke less
were more likely to stop and that those who
completed treatment were more likely to be in
this sample, the research can “raise questions
about the clinical myth that nicotine depen-
dence should be treated only after stabilization
of the primary drug dependence” (p. 1330).
Similarly, smoking cessation efforts may be
particularly relevant among people living
with HIV, for whom smoking may negatively
affect immune functioning over time and in-
crease risk of infections of the respiratory tract
(Chiasson, 1994).
Initial ingestion of nicotine can result in
unpleasant experiences, such as headaches
and nausea. Tolerance for these symptoms
develops quickly, however, and regular users
report that tobacco helps with relaxation and
concentration (Slade, 1999). Addiction occurs
with regular use, and withdrawal symptoms,
such as irritability, sleep disturbances, craving,
and cognitive defi cits, can occur for a month
or more following cessation of use (NIDA,
2001a).
Epidemiology
The 2008 NSDUH estimated that 28.4% of
the U.S. population 12 years and older were
current users of tobacco products. Adolescents
age 12 to 17 years reported current use rates
of 11.4%. Boys were more likely than girls to
report use (12.6% versus 10.2%). American
Indian adolescents reported the highest rates
of tobacco use (22.0%) and Asian youth the
lowest rates (4.4%) of all racial groups.
Similar to patterns of alcohol use, current
tobacco use rates peaked during young adult-
hood. Among persons age 18 to 25 years,
41.4% reported using tobacco in the past
month. Rates of use among gender and ra-
cial groups in this age group varied similarly
to those seen among adolescents. Men used
at rates greater than women (48.8% versus
33.8%). Asian and African American young
adults reported the lowest rates of current use
(20.0% and 30.7%, respectively); American
Indian and White American young adults re-
ported the highest rates of current use (52.8%
and 47.5%).
Among people 26 years and older, 28.3%
reported current tobacco use. Men continued
to use at rates greater than women (35.0%
versus 22.2%).
Health Effects
The negative effects of tobacco on health and
the health-care system are legion. In fact, NIDA
(2010b) reports that “tobacco use is the lead-
ing preventable cause of disease, disability, and
death in the United States.” Approximately 8.6
million Americans suffer from at least one seri-
ous illness caused by smoking, and annual esti-
mates indicate that smoking is responsible for
economic losses of $75 billion in excess medi-
cal expenditures (Centers for Disease Control
and Prevention [CDC], 2004). Cigarette use is
strongly associated with lung cancer, heart dis-
ease, and chronic obstructive pulmonary disease
(emphysema and chronic bronchitis). Smokers
are at increased risk for stroke and peripheral
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Substance Use Problems in Health Social Work Practice 433
vascular disease, and many cancers of the
mouth, throat, larynx, and esophagus are related
to cigarette use (NIDA, 2001a; Slade, 1999). In
2001, NIDA (2001a) reported that “cigarette
smoking is the most important preventable
cause of cancer in the United States” (p. 5).
It is estimated that approximately 20% of
pregnant women in the United States smoke
throughout their pregnancies (NIDA, 2001a),
an alarming statistic given that maternal smok-
ing is associated with a variety of adverse
pregnancy outcomes, including abruption of
the placenta (separation from the uterine wall),
low birth weight, premature delivery, and in-
creased risk of sudden infant death syndrome
(SIDS; NIDA, 2001a; Slade, 1999). In a large
study examining the prenatal effects of mul-
tiple substances, Shiono and colleagues (1995)
concluded, “[I]n the United States, cigarette
smoking remains the single largest preventable
cause of adverse pregnancy outcomes” (p. 26).
Cannabis
Among the U.S. population 12 years and older,
approximately 10.3% and 6.1% reported mari-
juana use in the past year and month, respec-
tively (SAMHSA, 2009). These prevalence
rates make marijuana the most commonly used
illegal drug. Literature examining the effects
of marijuana is confl icting, and most purported
fi ndings are in need of replication. For exam-
ple, some longitudinal studies have found that
heavier marijuana use in adolescence is associ-
ated with less stability in adult roles (Kandel,
Davies, Karus, & Yamaguchi, 1986); however,
it is unclear whether these outcomes are due
to marijuana use or if they are better explained
by other substance use or preexisting differ-
ences between heavy marijuana users and oth-
ers (Stephens, 1999).
Cannabis is most often smoked but some-
times is mixed into food. Users may experience
mild euphoria, relaxation, and enhancement or
distortion of perceptual experiences. Intoxi-
cation often involves impairment in attention
and short-term memory. Typically lethargy
and sleepiness occur as the effects wear off
(Stephens, 1999). Addiction can occur as a
result of long-term use in some people (NIDA,
2004a), and some authors report that clinicians
are encountering “more marijuana-dependent
patients than ever before” (Gold, Frost-Pineda,
& Jacobs, 2004, p. 177).
Epidemiology
As previously noted, the 2008 NSDUH re-
ported that 6.1% of persons 12 years and
older were current users of marijuana. Among
illicit-substance users specifi cally, 75.7%
reported that they had used marijuana, mak-
ing it the most commonly used illegal sub-
stance. This fi nding was true across broad age
groups; however, it is interesting to note that
12- and 13-year-olds reported current use of
psychotherapeutics (prescription-type medi-
cations used nonmedically; 1.5%) and inhal-
ants (1.3%) at rates greater than marijuana
(1.0%). Rates of cannabis use peaked for 18-
to 25-year-olds, with 16.5% reporting current
use. Male young adults reported higher current
use rates (20.1%) than female young adults
(12.8%). This gender difference continued
among people 26 years and older, with 5.8%
of men and 2.8% of women reporting current
use. Among adolescents, the gender differ-
ences were in the same direction but were less
substantial, with 7.3% of boys and 6.0% of
girls reporting current use.
Asian and African American youth age 12
to 17 years reported the lowest rates of current
use (1.0% and 5.9%, respectively), whereas
youths who identifi ed as two or more races
or as White American reported the highest
rates (10.6% and 7.2%, respectively). Among
18- to 25-year-olds, persons identifying as
two or more races or as American Indian re-
ported the highest rates of current use (22.8%
and 20.4%, respectively), whereas White
and African American young adults reported
lower, but still substantial, rates of use (17.8%
and 18.2%, respectively).
Health Effects
Few conclusive negative health effects directly
related to marijuana use exist. One primary
concern is related not to the psychoactive
ingredients of marijuana but to the preferred
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434 Health Social Work: Selected Areas of Practice
mode of its administration (Stephens, 1999).
Like tobacco, marijuana frequently is smoked
and appears to pose similar health risks, such
as increased rates of respiratory problems and
cancer (NIDA, 2002a; Slade, 1999). Research
examining marijuana use during pregnancy
has produced mixed fi ndings (Keegan, Parva,
Finnegan, Gerson, & Belden, 2010). Some
studies have shown that smoking marijuana
during pregnancy is associated with low birth
weight (Hatch & Bracken, 1986; Zuckerman
et al., 1989); however, a large multicenter
study found that when tobacco use was con-
trolled for, marijuana use was not related to
low birth weight or preterm delivery (Shiono
et al., 1995).
Increasing attention is being given to the
positive or medicinal effects of marijuana
use; however, it is not without controversy.
Proponents state that marijuana is effective in
treating a range of symptoms associated with
cancer, HIV/AIDS, multiple sclerosis, and
glaucoma. Detractors emphasize the potential
harm and suggest that medicalizing marijuana
is simply a strategy to allow easier access for
recreational use. By 2010, 15 states had ac-
tive medical marijuana programs, but their
laws stand in contrast to federal law, which
prohibits all use of cannabis. A review of the
evidence by the Institute of Medicine (IOM)
culminated in a report issued in 1999. The
report summarized research examining the ef-
fectiveness of marijuana to treat pain, wasting
syndrome, nausea, muscle spasticity, move-
ment disorders, epilepsy, and glaucoma. Evi-
dence is strongest for alleviating pain, nausea,
and appetite loss such that “for patients such
as those with AIDS or who are undergoing
chemotherapy, and who suffer simultaneously
from severe pain, nausea, and appetite loss,
cannabinoid drugs might offer broad-spectrum
relief not found in any other single medica-
tion” (Joy, Watson, & Benson, 1999, p. 177).
However, the report also is cautious to rec-
ommend smoking marijuana as “good medi-
cine” (p. 177). Although tetrahydrocannabinol
(THC), the active ingredient in marijuana, is
shown to have therapeutic effects, marijuana
also delivers other toxic substances, including
many found in tobacco smoke. Thus, the re-
port recommends that future research include
clinical trials with the aim of developing safer
delivery systems of cannabinoid drugs.
Cocaine
Cocaine is a powerful stimulant currently
used by approximately 0.7% of persons
12 years and older in the United States (SAM-
SHA, 2009). It is sold as a white powder or
in crack form and can be snorted, injected,
or smoked. Immediate effects include mental
alertness; increased energy; euphoria; and in-
creased heart rate, blood pressure, and body
temperature. With high duration and doses of
stimulants, individuals may experience stimu-
lant delirium, which can include symptoms of
disorientation, confusion, anxiety, and fear; in
episodes of high doses, individuals also may
experience symptoms of psychosis and para-
noia and behavioral compulsions (Kosten &
Sofuoglu, 2004).
The onset, duration, and intensity of these
effects depend on the route of administration.
For example, crack cocaine, easily made by
cooking powder cocaine with water and am-
monia or sodium bicarbonate (baking soda), is
smoked, resulting in an intense high within a
matter of seconds (Kosten & Sofuoglu, 2004;
NIDA, 1999a). Snorting powder cocaine gen-
erally elicits effects within 20 minutes; intra-
venous injection generally elicits effects in
30 seconds (Kosten & Sofuoglu, 2004).
Epidemiology
In 2008, 14.7% of U.S. persons 12 years and
older reported that they had used cocaine dur-
ing their lifetimes. Men were more likely than
women to report both lifetime use (17.7%
versus 11.9%) and current use (1.0% versus
0.5%). Among adolescents 12 to 17 years old,
however, girls reported greater lifetime use
than boys (2.1% versus 1.7%), but boys re-
ported greater current use (0.5% versus 0.3%).
Youth who identifi ed as being of two or more
races or as White American reported a cur-
rent cocaine use rate of 0.5%, the highest in
this age group. The lowest rates of current use
JWBT514_ch17.indd 434JWBT514_ch17.indd 434 9/21/11 7:43 PM9/21/11 7:43 PM
Substance Use Problems in Health Social Work Practice 435
were reported by Asian (0.0%) and African
American (0.1%) adolescents.
Current cocaine use peaked among 21-year-
olds (2.3%). Young adult men (18–25 years
old) reported current use rates of 1.8% whereas
1.3% of women age 18 to 25 years reported
current use. As with adolescent racial groups,
Asian and African American young adults re-
ported the lowest rates of current cocaine use
at 0.2% and 0.3%, respectively. This trend
changed, however, among adults 26 years and
older, with African Americans reporting the
highest current use rate (1.2%).
Health Effects
Some of cocaine’s health effects differ with
the route of administration (NIDA, 2010a).
For example, intranasal use (snorting) may re-
sult in nosebleeds, lost sense of smell, and a
persistently runny nose, and injecting cocaine
may result in allergic reactions and risk of con-
tracting HIV and other blood-borne infections,
including viral hepatitis. Sharing drug-related
equipment for intranasal and inhalation use of
cocaine also may increase the risk of contract-
ing viral hepatitis (Aaron et al., 2008; Macias
et al., 2008; NIDA, 2010a).
Heavy use of cocaine and other stimulants
often results in health problems involving mul-
tiple systems. Cardiovascular and gastrointesti-
nal illnesses are common, as are problems with
the CNS and reproductive system (Weaver &
Schnoll, 1999). Research suggests that cocaine
is particularly dangerous when used in com-
bination with alcohol. The body transforms
cocaine and alcohol into a substance (cocaeth-
ylene) that is more toxic than either drug alone.
This mixture results in more deaths than any
other two-drug combination (NIDA, 1999a).
Some have argued that the primary nega-
tive effects of problematic cocaine use are psy-
chological and social rather than physiological
(Weil & Rosen, 1993), but it is important to note
that cocaine abuse is associated with acute car-
diovascular and cerebrovascular events, includ-
ing heart attack and stroke, that may result in
death (NIDA, 2010a). Two recent studies—one
in New Mexico and one in British Columbia—
found elevated rates of cocaine overdose since
the 1990s (Buxton et al., 2009; Shah, Lathrop,
Reichard, & Landen, 2007). Recent research
from New York City suggests that elevated am-
bient temperature (above 24°C—approximately
75°F) is associated with accidental, fatal over-
dose of cocaine and that public health efforts to
reach at-risk populations during warm weather
are particularly important (Bohnert, Prescott,
Vlahov, Tardiff, & Galea, 2010).
Many studies have documented that ba-
bies born to women who use cocaine during
pregnancy are prematurely delivered, have low
birth weight, and have smaller head circumfer-
ences than babies not exposed to cocaine in
utero (NIDA, 1999a). Because of methodolog-
ical limitations, however, it has been diffi cult
for research to tease out the effects of cocaine
from those of other co-occurring conditions,
such as maternal use of other substances, lack
of prenatal care, and low socioeconomic status
(Singer, 1999). Furthermore, NIDA (1999a)
asserts that predictions about “crack babies”
suffering profound irreversible damage has
proven to be a “gross exaggeration” because
most of these children have been able to re-
cover from earlier defi cits (p. 6). They do cau-
tion, however, that more sophisticated research
techniques now are demonstrating an associa-
tion between fetal cocaine exposure and later
subtle defi cits in behaviors such as concentra-
tion and blocking out distractions.
Heroin
In 2008, approximately 213,000 Americans
(0.1% of the population) older than 12 years
reported current heroin use (SAMHSA, 2009).
In spite of the relatively small number of users,
it represents a serious and signifi cant public
health problem. Heroin can be smoked, snorted,
injected under the skin (“skin-popping”), or
injected into a vein (“mainlining”). Users gen-
erally experience a pleasurable sensation, or
“rush,” followed by a period of drowsiness and
mental cloudiness. Although heroin long has
been associated with marginalized groups of
people, the 1990s saw its use spread to people
from middle and upper-middle socioeconomic
classes (Stine & Kosten, 1999).
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436 Health Social Work: Selected Areas of Practice
Heroin, derived from morphine, belongs
to a class of substances known as opioids,
which are used for relieving pain. Prescription
medications belonging to this class include
morphine, codeine, oxycodone (OxyContin),
hydrocodone (Vicodin), propoxyphene (Darvon),
meperidine (Demerol), and hydromorphone
(Dilaudid) (NIDA, 2009b, 2010b). For epi-
demiological purposes, these prescription
medications are covered in the “Psychothera-
peutics” section; they tend to produce effects
similar to those of heroin.
Epidemiology
In 2008, 1.5% of persons in the United States
12 years and older reported that they had
used heroin in their lifetime. Predictably,
lifetime use rates were highest for those
26 years and older (1.7%) and lowest for
those 12 to 17 years old (0.3%). Young adults
age 18 to 25 reported a lifetime heroin use
rate of 1.4%.
Health Effects
NIDA (2000) states: “[O]ne of the most det-
rimental long-term effects of heroin is addic-
tion itself” (p. 3). Regular users experience
tolerance, need to administer higher doses to
get the desired effects, and develop physical
dependence. If heroin is not readministered,
painful physiological withdrawal symptoms
may occur for up to a week. Some people
continue to experience withdrawal symptoms
for months (NIDA, 2010b). These symptoms
include restlessness, muscle and bone pain, in-
somnia, gastrointestinal disturbance, involun-
tary leg movements, and cold fl ashes (NIDA,
2005a). Overdose leading to death is possible
and is a signifi cant risk for street users who do
not know the purity level of the heroin they
have obtained. Heroin injectors run the risk of
acquiring blood-borne viruses, such as HIV
and hepatitis C, particularly when needles are
shared. Intranasal use also may increase the
risk of viral hepatitis (Aaron et al., 2008). Col-
lapsed veins, liver disease, abscesses, infection
of the heart lining and valves, and pulmonary
complications are possible outcomes of long-
term heroin use (NIDA, 2000).
Studies indicate that infants born to women
with heroin dependence are more frequently
premature, tend to have low birth weight,
and often experience a range of perinatal
complications and abnormalities (McNeece
& DiNitto, 2005). Maternal heroin use also
is associated with miscarriage and a greater
risk of SIDS. Maternal and infant outcomes
can be improved with a combination of com-
prehensive methadone treatment and prenatal
care (NIDA, 2010b). Infants born to women
who are engaged in methadone treatment can
be treated safely if they show signs of physi-
cal dependence (NIDA, 2000). Buprenor-
phine is emerging as a promising treatment
during pregnancy. Detoxifi cation from opi-
oids during pregnancy should be considered
carefully in light of risk to the fetus (NIDA,
2010c).
Hallucinogens
Hallucinogens comprise a broad group of
over 100 different substances that share the
capacity to effect a variety of sensory distor-
tions and hallucinations. Historically, select
hallucinogens have been used among some
groups as part of religious and spiritual ritu-
als. For example, mescaline, derived from the
peyote cactus, is used by certain Native Indian
peoples of Mexico and is also a central compo-
nent of rituals in the Native American Church
(Durrant & Thakker, 2003).
Hallucinogens commonly known in the
United States include LSD, PCP, mushrooms,
and ecstasy (MDMA). Ecstasy is a designer
drug that is tailor-made to produce specifi c
effects. It is known as a party drug and a
yuppie psychedelic and can produce both stim-
ulant and hallucinogenic effects (McNeece &
DiNitto, 2005). Users may experience mild
euphoria and expanded mental perspective
and insight. Negative effects include confu-
sion, sleep disruption, anxiety, and paranoia,
sometimes weeks after taking the substance.
Physiological symptoms such as dehydration,
blurred vision, teeth clenching, chills, sweat-
ing, and nausea have been observed (McNeece
& DiNitto, 2005).
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Substance Use Problems in Health Social Work Practice 437
Epidemiology
In 2008, an estimated 1.06 million Americans
12 years and older reported current hallucino-
gen use, and about 3.7 million people reported
using hallucinogens in the past year. Among
past-year users, approximately 640,000 people
reported using ecstasy, 154,000 reported using
LSD, and 24,000 people reported using PCP
(SAMHSA, 2009).
Among racial groups, younger Asian and
African American people reported the lowest
rates of lifetime hallucinogen use. Specifi –
cally, they reported rates of 0.8% and 1.4%
as adolescents and 7.5% and 9.5% as young
adults. Among people 26 years and older, their
reported lifetime use rates remained low (5.2%
and 9.9%, respectively), along with those of
Latinos (9.4%). Estimates of reported lifetime
hallucinogen use were not available for Amer-
ican Indians 26 years and older; however,
among adolescents and young adults, their re-
ported rates were highest (13.8% and 31.9%).
Health Effects
With the exception of ecstasy, hallucinogens
pose few known health risks. The use of LSD
has been associated with enduring psychoses,
but it is unclear the extent to which LSD is
causal (Abraham, Aldridge, & Gogia, 1996).
During the acute hallucinogenic state, there is
the risk of accidental injury or death. This is
particularly true with PCP use because para-
noia and confusion are associated with its
acute effects (Stephens, 1999).
Taken in high dosages, ecstasy is associated
with hyperthermia and can lead to cardiovas-
cular, kidney, and liver failure. Neurotoxicity
has been demonstrated in animals, and al-
though studies have not defi nitively shown
the same results in humans (NIDA, 2005c),
clinical reports have documented toxic effects
and fatality associated with ecstasy use (Dar &
McBrien, 1996).
Inhalants
Inhalants are breathable chemical vapors
found in many common items and household
substances. Examples include gasoline, paint,
cleaning fl uids, glue, marking pens, lighter
fl uid, and lacquer thinner. These substances
are sniffed, or “huffed,” for their psychoac-
tive effects. Although the effects of each of the
particular substances can vary, intoxication
generally resembles that of alcohol and may
include stimulation and euphoria, followed by
disinhibition, agitation, and light-headedness.
With increased volume of vapor inhalation,
anesthesia and unconsciousness can result
(NIDA, 2005b).
Epidemiology
Because of their accessibility and affordabil-
ity, inhalants are often a substance of choice
for young people. In 2008, an estimated 1.1%
of American youth age 12 to 17 years reported
current inhalant use (SAMHSA, 2009). Among
the same group, 9.3% reported lifetime use.
Lifetime rates were higher for girls (10.1%)
than for boys (8.4%), and American Indians
reported the highest rate (16.8%) in this age
group among ethnic/racial groups. Among all
adolescents, 14-year-olds were the most likely
to report inhalant use in the past month (1.5%)
and past year (5.1%) (SAMHSA, 2009).
Health Effects
Inhalants are extremely toxic and potentially
lethal. Over 700 deaths, mostly of teens and
preteens, were reported to the National Inhal-
ant Prevention Coalition between 1996 and
2001 (CSAP, 2003). Negative health effects
include damage to the brain, lungs, kidneys,
and liver. Inhalant use has been associated
with sudden death, known as sudden sniffi ng
death syndrome (NIDA, 2005b).
Psychotherapeutics
Psychotherapeutic medication is the second
most commonly used illegal substance today.
In 2008, 2.5% of Americans 12 years and
older reported current use of these substances.
Psychotherapeutics include the nonmedical
use of prescription-type pain relievers, tran-
quilizers, stimulants, and sedatives. They
comprise numerous kinds of substances that
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438 Health Social Work: Selected Areas of Practice
are obtained either with a prescription or il-
legally, “on the street.” Classes of these
substances most commonly abused include
opioids (e.g., morphine, codeine, oxycodone),
CNS depressants (barbiturates and benzo-
diazepines), and stimulants (e.g., dextroam-
phetamine [Dexedrine], methylphenidate
[Ritalin], methamphetamine) (NIDA, 2001b).
Depending on the dose administered, opioid
users often experience euphoria followed by
a signifi cant decrease in tension and anxiety
(Stine & Kosten, 1999). CNS depressants pro-
vide a calming and sedating function (Brady,
Myrick, & Malcolm, 1999), whereas stimu-
lants cause an increase in alertness, attention,
and energy along with a feeling of euphoria
(Weaver & Schnoll, 1999).
Epidemiology
Among those 12 years and older in the United
States, 20.8% reported that they had used psy-
chotherapeutics in their lifetime (SAMHSA,
2009). Men reported slightly higher lifetime
rates than women (22.4% versus 19.3%), and
young adults age 18 to 25, when compared with
other age groups, reported the highest lifetime
use rate (29.2%). Young adults also reported
the highest current use rate (5.9%) among age
groups. People 26 years and older reported the
lowest current use rate at 1.9%. Almost 3% of
adolescents (12- to 17-year olds) reported cur-
rent use of psychotherapeutics.
Overall, men reported slightly greater cur-
rent and lifetime use rates of psychotherapeu-
tics than women (2.6% versus 2.4% and 22.4%
versus 19.3%). This gender pattern varied,
however, when examined by age groups. Girls
12 to 17 years old were more likely than boys
of the same age to report current use and life-
time use (3.3% versus 2.5% and 12.4% ver-
sus 9.9%, respectively). This gender pattern
switched, however, among 18- to 25-year-olds,
with men reporting current and lifetime use
rates (6.3% and 30.8%) higher than those of
women (5.5% and 27.6%). Among adults 26
years and older, women and men were similar
in their current use (1.8% and 1.9%), but men
were more likely than women to report life-
time use (22.6% versus 18.8%).
Among youth age 12 to 17 years, Asian ado-
lescents reported the lowest current rate of psy-
chotherapeutic use (0.7%). Youth identifying
as two or more races or as American Indian re-
ported the highest rates of use (4.2% and 4.0%,
respectively). During young adulthood, White
Americans joined American Indians and peo-
ple identifying as two or more races to report
the highest rates of current psychotherapeutic
use (7.2%, 5.9%, and 7.7%, respectively) while
Asian American persons continued to report
the lowest rates (3.0%). Among people older
than 26 years, Asian Americans again reported
the lowest rates of current psychotherapeutic
use (0.7%) while American Indians and White
Americans retained their position as report-
ing the highest rates of current use (2.2% and
2.1%, respectively).
Health Effects
The health consequences of psychotherapeu-
tics vary widely because the substances them-
selves have such wide variation in chemical and
psychoactive properties. Opioids, prescribed
to treat pain, include morphine, codeine, oxy-
codone, meperidine, and propoxyphene. Long-
term use of these and other opioids can result
in tolerance, physical dependence, and addic-
tion. If use is reduced or stopped abruptly,
withdrawal symptoms such as restlessness, in-
somnia, irritability, diarrhea, nausea, and cold
fl ashes may occur (NIDA, 2001b). Severe in-
toxication or overdose is potentially lethal and
requires immediate medical attention (Stine
& Kosten, 1999). Recent research suggests
increasing rates of overdose from prescrip-
tion opioids (Compton & Volkow, 2006; Hu &
Baker, 2009; Paulozzi, Ballesteros, & Stevens,
2006).
A particular challenge in health-care set-
tings involves balancing attention to opioid
medication risks with appropriate pain man-
agement (Savage, Kirsh, & Passik, 2008;
Zacny et al., 2003). The physical dependence
associated with opioid medications does not
in and of itself demonstrate problematic use
of the medication (O’Brien & Volkow, 2006);
however, as noted by Zacny and colleagues,
opiophobia, driven by inadequate medication
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Substance Use Problems in Health Social Work Practice 439
information and intense fears of medication
misuse, persists and contributes to poor treat-
ment of pain. Although social workers do not
prescribe medication, they may play an impor-
tant role in assessing clients’ current and past
substance use, intervening to support clients’
pain management strategies, assisting cli-
ents experiencing problematic substance use,
referring clients for additional services and
self-help programs, and collaborating with the
entire treatment team (Savage et al., 2008). A
recent publication by Savage and colleagues
(2008) provides more detailed guidance for
social workers engaged in balancing pain
management and substance use concerns with
clients in their settings.
CNS depressants, prescribed to treat
sleep and anxiety disorders, include barbitu-
rates and benzodiazepines such as diazepam
(Valium), chlordiazepoxide (Librium), alpra-
zolam (Xanax), and clonazepam (Klonopin).
Tolerance for these substances develops when
they are taken over time, and physical de-
pendence, withdrawal, and addiction are also
risks. Sleep disorder medications such as zol-
pidem (Ambien), eszopiclone (Lunesta), and
zaleplon (Sonata) are also CNS depressants,
although they seem to be associated with
reduced risk of problematic use. If used in
combination with alcohol, pain medications,
some cold and allergy medications, or other
substances that make one drowsy, CNS de-
pressants can slow one’s breathing and heart
rate, possibly leading to death (NIDA, 2009a).
Benzodiazepines must be used cautiously with
older adults because their use is a risk factor
for falls causing fractures and for cognitive
impairment (NIDA, 2001b).
Prescription-type stimulants include am-
phetamines such as dextroamphetamine and
Adderall and methylphenidate as found in
Ritalin and Concerta. Users may experience
euphoria, decreased appetite, and heightened
energy and attention. Irregular heartbeat, high
body temperature, and cardiovascular failures
or seizures are associated with high dosages of
stimulants. Combining stimulants with decon-
gestants may result in dangerous elevations in
blood pressure or heart arrhythmias; combining
them with antidepressants may heighten the
stimulant’s effects (NIDA, 2009a).
Methamphetamine is closely related to
the substance amphetamine; however, its ef-
fects on the CNS are greater (NIDA, 2004b).
Highly addictive, it produces a high of lon-
ger duration than that of cocaine. It can cause
a variety of serious health effects including
rapid heart rate, increased blood pressure, hy-
perthermia, and, over time, changes in brain
functioning, signifi cant weight loss, dental
problems, psychosis, and various problems
related to mood and behavior. Methamphet-
amine overdose can lead to hyperthermia and
convulsion and, without proper medical atten-
tion, can be fatal. Research suggests that use
during pregnancy may lead to prenatal com-
plications, premature delivery, and heart and
brain problems for the baby; further research
is needed in this area to address methodologi-
cal limitations of the available research as
well as altered patterns of neonatal behavior
(NIDA, 2002b).
PROMINENT APPROACHES
TO CONCEPTUALIZE AND
ADDRESS SUBSTANCE USE
PROBLEMS
Interventions to address substance use prob-
lems are informed and shaped by a variety of
factors. Conceptual models that explain the
development of substance use problems tend
to articulate and advocate for specifi c inter-
ventions and desired outcomes. For example,
a conceptualization of substance use problems
as the result of a complex illness that requires
God’s power for healing (AA, 2001) is promi-
nent in spiritually based, 12-step approaches,
such as AA (Miller & Hester, 1995; Schil-
ling & El-Bassel, 1998) while conceptualiza-
tions of substance use problems as the result
of learning processes are prominent in cog-
nitive-behavioral approaches (Longabaugh &
Morgenstern, 1999; Marlatt & Gordon, 1985).
With attention to evidence-based practices
(Miller, Zweben, & Johnson, 2005), this sec-
tion briefl y describes prominent approaches
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440 Health Social Work: Selected Areas of Practice
and modalities to assist people experiencing
substance use problems. It then provides more
detailed discussion of screening and brief in-
terventions that are likely to be employed by
social workers in health-care settings.
Reconciling Diverse Perspectives
Proponents of particular approaches are di-
vided as to their effi cacy (Miller & Hester,
1995). Commitment to particular approaches
and conceptual frameworks is shaped in com-
plex ways. For example, such commitments
may be shaped by evaluation of available
evidence, personal preferences, one’s own
treatment and recovery experiences, and af-
fi liations based on training and association
(Borden, 2000). The overview of prominent
approaches presented here focuses specifi –
cally on their conceptual tenets, implications
for intervention, and available evidence that
supports them. Furthermore, although intense
divisions exist among proponents of particular
approaches, no one approach has been shown
to be effective in serving all persons (Miller &
Hester, 1995; NIDA, 2009b).
The term systematic or informed eclecticism
has been used to describe the process through
which social workers and other service provid-
ers should approach making decisions about
which models to employ to help people ef-
fectively (Hepworth, Rooney, & Larsen, 2002;
Miller & Hester, 1995). This process involves
systematically considering available evidence
to guide intervention, with preference for ap-
proaches that are evidence based, comprised
of clearly described strategies and techniques,
consistent with social work ethics, within the
social worker’s competencies, and culturally
competent (Hepworth et al., 2002). To facili-
tate this process of systematic or informed
eclecticism, this discussion addresses available
evidence regarding each of the approaches.
Moral and Temperance Perspectives
Throughout the course of history, many per-
spectives have informed approaches to un-
derstanding and addressing substance use
problems. Numerous authors describe the evo-
lution of understanding regarding problematic
substance use (McNeece & DiNitto, 2005;
Miller & Hester, 1995; Schilling & El-Bassel,
1998). Early models conceptualized problem-
atic substance use as a moral issue, refl ecting
moral weakness, sin, and volitional disregard
for social norms of behavior (McNeece &
DiNitto, 2005; Miller & Hester, 1995). The
temperance movement emerged in the United
States in the late 1800s and advocated for the
judicious, moderate use of alcohol, based on its
potential for harmful consequences (Miller &
Hester, 1995). Differing perspectives exist on
the role of the temperance movement in con-
tributing to a moralistic view of problematic
substance use. Some authors assert that “the
core of the temperance model is that the cause
of alcohol problems is alcohol itself” (Miller
& Hester, 1995, p. 3). This conceptualization
would suggest that limiting access to alcohol
by making it more costly or less available
and encouraging moderation and abstinence
would be useful interventions (Miller & Hes-
ter, 1995). Others assert, “[P]rior to the activi-
ties of the Temperance Movement, a force that
eventually led to the adoption of Prohibition in
the United States, the consumption of alcohol
was not necessarily considered to be a sinful
act” (Marlatt, 1985b, p. 182). This view of the
role of the temperance movement puts par-
ticular emphasis on the moral perspective of
problematic substance abuse, with attention to
the individual’s lack of self-control (Marlatt,
1985b). The moral perspective informs inter-
ventions that focus on punishment through so-
cial and legal consequences for substance use
(Miller & Hester, 1995).
Disease Models
Early in the 19th century, Benjamin Rush,
a physician in the United States, proposed a
disease framework for understanding alcohol
use problems (Marlatt, 1985a). This frame-
work further evolved through the 20th cen-
tury. In 1935, AA began and contributed to
disseminating the concept of alcoholism as a
disease rather than a moral failing (Kinney &
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Substance Use Problems in Health Social Work Practice 441
Leaton, 1991; Schilling & El-Bassel, 1998). In
the 1940s, E. M. Jellinek and his colleagues
at Yale University also contributed to the for-
mulation of the current disease model of al-
coholism (Kinney & Leaton, 1991; Marlatt,
1985a). One way of considering elements of
the disease model is refl ected in the perspec-
tive of William Silkworth, known as a friend of
AA: “an obsession of the mind and an allergy
of the body” (Kinney & Leaton, 1991, p. 54).
This conceptualization refl ects recognition of
the psychological and biological components
of the disease perspective; however, as argued
by Miller and Hester (1995), the 12-step ap-
proach also incorporates considerable em-
phasis on spirituality as a primary component
of recovery. In fact, the 12-step approach of
AA views alcoholism as “an illness which
only a spiritual experience will conquer” (AA,
2001, p. 21).
The conceptualization of problematic sub-
stance use as a persistent medical condition
has continued to evolve with recognition that it
is infl uenced by biological, environmental, be-
havioral, and genetic components (Alterman,
McLellan, O’Brien, & McKay, 1998; O’Brien
& McLellan, 1996). A similar view is presented
by the Center for Substance Abuse Treatment
(CSAT; 1999b), which describes “an emerging
biopsychosocial-spiritual model” (p. 8). These
viewpoints recognize that complex, intersect-
ing factors infl uence the onset and course of
substance use problems and, as with other
chronic health conditions, require multifaceted
intervention strategies (CSAT, 1999b; Leshner,
1997; NIDA, 2009b). Furthermore, as with
other chronic health conditions, long-term
treatment is required to address addiction as
“a chronic, relapsing illness” (Leshner, 1997,
p. 45; O’Brien & McLellan, 1996). Although
risk for relapse often dominates common un-
derstanding of addiction, rates of relapse with
addiction (40%–60%) are comparable to re-
lapse rates associated with type 1 diabetes
(30%–50%), hypertension (50%–70%), and
asthma (50%–70%; NIDA, 2009b). Although
a complex combination of factors can infl u-
ence the effectiveness of treatment (e.g., type
and severity of client’s presenting problems,
capacity of available services to address the
client’s presenting problems, nature of the
client’s interactions with service providers),
NIDA (2009c) notes that “according to re-
search that tracks individuals in treatment over
extended periods of time, most people who get
into and remain in treatment stop using drugs,
decrease their criminal activity, and improve
their occupational, social, and psychological
functioning” (p. 11).
Several intervention strategies emerge from
the conceptualization of substance use disor-
ders as a disease. Although there are distinc-
tions between a dispositional disease model
and the more comprehensive perspective of
AA (Miller & Kurtz, 1994), AA and other 12-
step approaches are among the most promis-
ing to emerge from disease conceptualizations
of substance use disorders. Research regard-
ing 12-step approaches is limited, but a 2004
research review suggests that participation in
AA and Narcotics Anonymous is associated
with increased abstinence and self-effi cacy
and enhanced socialization. Augmenting 12-
step meeting attendance with participation in
additional group-related activities seems to
add to effects (Humphreys et al., 2004). In
addition, fi ndings from this review also sug-
gest that self-help group participation is best
considered as continuing care rather than as a
replacement for acute professional treatment.
Findings from a more recent research review
indicate that several aspects of AA participation
are associated with better outcomes, including
connecting with a sponsor, attending meetings
frequently and over a longer period of time,
affi liating with AA more rapidly, and receiving
support from other AA members (Krentzman,
2007). In addition, recent research with ado-
lescents indicates that 12-step involvement is
associated with drug and alcohol abstinence
at three years after treatment (Chi, Kaskutas,
Sterling, Campbell, & Weisner, 2009). Finally,
while focused on facilitating attendance at AA
meetings and incorporating elements of the
12-step approach, fi ndings of Project MATCH,
a large clinical trial of alcohol treatment con-
ducted with 1,726 clients over 10 years, sug-
gest that 12-step facilitation conducted by a
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442 Health Social Work: Selected Areas of Practice
therapist is as effective as cognitive-behavioral
and motivational enhancement therapy (Dono-
van, Carroll, Kadden, DiClemente, & Roun-
saville, 2003).
Numerous pharmacotherapies have emerged
to assist people experiencing substance use
problems. Among the best known are:
• Nicotine lozenges, patches, or gum or oral
medications such as bupropion (Zyban) or
varenicline (Chantix), which can be help-
ful to people with nicotine addiction. (Note,
however, that the transdermal patch is the
only addiction medication approved by the
Food and Drug Administration [FDA] for
use with adolescents.)
• Disulfi ram (Antabuse), which may help
people with alcohol use disorders who
have high motivation, are entering a treat-
ment contract with a signifi cant other,
or are attending events where alcohol is
served.
• Acamprosate (Campral) and topiramate
(Topamax), which can help people abstain
from or reduce drinking. (Topiramate is not
yet approved by the FDA.)
• Naltrexone (Revia), which has shown
promise in treating alcohol and opiate use
problems.
• Methadone and Subutex, which have
been effective in treating opioid depen-
dence.
• Selective serotonin reuptake inhibitors,
which have been effective in enhancing al-
cohol treatment retention, reducing alcohol
consumption among clients experiencing
co-occurring anxiety, and reducing cocaine
consumption among clients engaged in
methadone treatment (Alterman et al., 1998;
NIDA, 2009b).
Combining medication with psychosocial in-
terventions, which are discussed further next,
refl ects a multifaceted approach to address
“addiction as a prototypical psychobiological
illness, with critical biological, behavioral,
and social-context components” (Leshner,
1997, p. 46).
Psychological Models
Prominent psychological models for under-
standing substance abuse include behavioral
and cognitive perspectives (Miller & Hester,
1995). One such model is Relapse Prevention,
in which “addictive behaviors are viewed as
overlearned habits that can be analyzed and
modifi ed in the same manner as other hab-
its” (Marlatt, 1985a, p. 9). As described by
Marlatt, analysis of these habits involves the
examination of factors that contribute to main-
taining the behavior, such as antecedents in
the situation or environment (e.g., relational
confl icts, social infl uences, emotions), expec-
tations about the outcome of substance use
(e.g., anticipation of positive consequence of
consumption), and previous experiential learn-
ing about the substance (e.g., observations of
peers and family members using substances,
positive reinforcement of behavior through
enjoyable effects of consumption, negative
reinforcement of behavior through relief of
distress with consumption). The analysis also
includes examination of consequences of the
behavior (e.g., ways in which substance use is
reinforced to encourage the behavior and ways
in which negative outcomes may discourage
behavior), with particular attention to the so-
cial context and interpersonal components as-
sociated with substance using behavior.
Another central element of this model is its
perspective on relapse, or reengaging in sub-
stance use behavior. In fact, Marlatt (1985a)
distinguishes a lapse, or a single experience
of returning to prior behavior, from a relapse,
a more complete experience of returning to
prior behavior. In this model “a single slip
(mistake)” is not seen “as an indication of total
failure” (p. 32). Thus, the notion of being in or
out of control of substance use is not viewed
dichotomously, and efforts are made to use
lapses and relapses as learning experiences
that can inform future relapse-prevention
strategies (Larimer, Palmer, & Marlatt, 1999;
Marlatt, 1985a).
The phrase abstinence violation effect is
used by Marlatt (1985a) to describe the cog-
nitive and affective responses people may
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Substance Use Problems in Health Social Work Practice 443
experience when they are committed to abso-
lute abstinence but then engage in substance
use. After committing to total abstinence, peo-
ple who engage in substance use may be more
likely to experience negative affective states
(e.g., guilt) and cognitions that involve self-
blame or that reinforce lack of self-control.
Such experiences may increase their risk for
relapse (Larimer et al., 1999; Marlatt, 1985a;
Miller, Westerberg, Harris, & Tonigan, 1996;
for review, see Dimeff & Marlatt, 1998). In-
terventions based on the model’s conceptu-
alization of substance use problems focus on
assisting clients to identify situations that may
increase their risk of relapse, strengthen their
ability to cope with or modify such situations,
address expectations regarding anticipated
outcomes of substance use, strengthen self-
effi cacy, reduce the intensity of the abstinence
violation effect through cognitive interven-
tions, and foster learning from lapses and re-
lapses (Larimer et al., 1999).
NIDA (2009b) notes the effectiveness of
cognitive-behavioral treatment with people
experiencing problematic use of alcohol,
nicotine, marijuana, cocaine, and metham-
phetamine and highlights that people often
experience sustained retention of skills in the
year following treatment. Findings from Proj-
ect MATCH suggest that cognitive-behavioral
therapy was as effective as 12-step facilitation
and motivational enhancement therapy (Miller
& Longabaugh, 2003). In addition, a review of
research on cognitive-behavioral relapse pre-
vention presents positive fi ndings of several
studies that suggest that this approach can help
increase the period of abstinence, reduce the
severity of relapse, and have comparable ef-
fectiveness with a 12-step approach with both
alcohol and other drug use (Dimeff & Marlatt,
1998). Although there is research support for
relapse prevention, Dimeff and Marlatt note
that there have been some mixed fi ndings.
For example, in a review by Miller and Hester
(1995), three of seven studies that specifi cally
examined “relapse prevention” yielded posi-
tive fi ndings, but four yielded mixed fi ndings,
including fi ndings that indicated improve-
ments in both experimental groups. Miller and
Hester (1995) also note fi ndings indicating
that supportive therapy may be more effec-
tive in alcohol-related outcomes than relapse
prevention for clients who have lower levels
of verbal learning ability (Dimeff & Marlatt,
1998; Jaffe et al., 1996).
Motivation and Change
Theory Perspectives
Motivation and change theory perspectives
emphasize understanding the motivation for
and the nature and processes of change.
Motivational Interviewing
First published in 1991, Miller and Rollnick’s
(1991, 2002) motivational interviewing model
focuses on why people change behavior rather
than why they do not. Although specifi c prin-
ciples and methods are associated with moti-
vational interviewing, Miller and Rollnick’s
revised edition places greater weight on the
spirit of the approach. The authors focus on
three primary components that contribute to
the spirit of the approach: collaboration, evoca-
tion, and autonomy (p. 34). These components
are contrasted with their opposing counter-
parts: confrontation, education, and authority
(p. 35). A spirit of collaboration aims to create
an egalitarian partnership rather than a context
of confrontation and argument between the so-
cial worker and the client. The aim is “to cre-
ate a positive interpersonal atmosphere that is
conducive but not coercive to change” (p. 34).
Rather than presuming that clients lack aware-
ness, information, or competence and then at-
tempting to impart them to clients, the worker
engaged in motivational interviewing aims to
evoke from clients their perspectives, interests,
and sources of motivation. The presumption of
evocation is that change is facilitated by elicit-
ing intrinsic motivation regarding what is most
meaningful to clients and their aims. Finally,
rather than focusing on an authoritarian rela-
tionship in which the social worker tells clients
what to do, motivational interviewing recog-
nizes that clients have a choice regarding ac-
cepting assistance and that ultimately they will
be responsible for making a behavior change.
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444 Health Social Work: Selected Areas of Practice
As further described by Miller and Rollnick
(2002), “when motivational interviewing is
done properly, it is the client rather than the
counselor who presents the arguments for
change” (p. 34). Building on the spirit of the
approach, Miller and Rollnick (p. 36) suggest
four principles that can inform motivational
interviewing: (1) express empathy, (2) develop
discrepancy, (3) roll with resistance, and
(4) support self-effi cacy.
As described by Miller and Rollnick (2002),
the expression of empathy draws on the work
of Carl Rogers with an emphasis on refl ective
listening and the recognition that ambivalence
about change is normal. In developing discrep-
ancy, the social worker aims to assist clients
with exploration of the difference between the
current situation and their future goals. In this
process, it once again is the clients rather than
the social worker who provide the reasons for
change. This process is facilitated by eliciting
client perspectives regarding the discrepancies
and then amplifying their perspectives to facil-
itate change and to resolve ambivalence. Cen-
tral to the idea of rolling with resistance is that
“argumentation is counterproductive” (Miller
& Rollnick, 2002, p. 39). In fact, according
to Miller and Rollnick, when clients display
“resistance,” it should be taken as a cue to the
social worker that the current approach should
be modifi ed. Finally, self-effi cacy is supported
by two main elements: The social worker’s be-
lief that change is possible and the recognition
that ultimately clients will be responsible for
the change. These two ideas are interwoven:
“To assert that a person is responsible for de-
ciding and directing his or her own change is
to assume that the person is capable of doing
so” (Miller & Rollnick, 2002, p. 41).
Motivational interviewing has been evalu-
ated in more than 200 clinical trials, showing
promise with a wide range of substance use
problems and other health concerns, includ-
ing physical inactivity, HIV risk, HIV medi-
cation adherence, co-occurring substance use
and mental health problems, hypertension,
cardiovascular rehabilitation, and diabetes
management (Britt, Hudson, & Blampied,
2004; Miller & Rose, 2009; Miller, Yahne,
& Tonigan, 2003; Parsons, Golub, Rosof, &
Holder, 2007; Weir et al., 2009). Findings from
recent meta-analyses indicate that motivational
interviewing facilitates positive outcomes re-
lated to substance use, although there appear
to be differential effects by substance. In these
studies, the comparative effects were greater
with weak comparison groups; however, it
should be noted that motivational interviewing
involved fewer sessions than usual treatment,
which suggests that motivational interviewing
may require less cost and time to achieve gains
(Hettema, Steele, & Miller, 2005; Lundahl &
Burke, 2009; Lundahl, Kunz, Brownell, Tollef-
son, & Burke, 2010; Vasilaki, Hosier, & Cox,
2006). The effects of motivational interviewing
were not shown to differ by gender or problem
severity in the meta-analyses that examined
these variables; some analyses do indicate that
people from racial/ethnic minority groups and
those who are older may experience greater
effects of motivational interviewing (Hettema
et al., 2005; Lundahl et al., 2010).
Motivational enhancement therapy (MET),
a four-session adaptation of motivational in-
terviewing, was conducted over 12 weeks of
treatment in Project MATCH (Donovan et al.,
2003; Miller & Longabaugh, 2003). Findings
of Project MATCH indicate that MET is as
effective as cognitive-behavioral therapy and
12-step facilitation; however, given the brevity
of the MET intervention, it is deemed a more
cost-effective intervention (Miller & Long-
abaugh, 2003). In its recent review of effective
treatments, NIDA (2009b) indicates that MET’s
success appears to differ by drug used, with
greater effectiveness for alcohol and marijuana,
and it is particularly useful in enhancing treat-
ment engagement rather than altering drug use.
Understanding the mechanisms through
which motivational interviewing facilitates
and sustains change and its intersections with
environmental factors (e.g., familial and social
support of change efforts) are central ques-
tions to be addressed in ongoing research
(Dunn, Deroo, & Rivara, 2001; Heather, 2005;
Vasilaki et al., 2006). Emerging efforts to iden-
tify mechanisms of change in motivational
interviewing suggest that several factors may
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Substance Use Problems in Health Social Work Practice 445
be particularly important, including: relational
elements (e.g., empathy and motivational in-
terviewing spirit); technical elements (e.g.,
consistency with motivational interviewing,
capacity for evoking and supporting change
talk, use of decisional balance exercise, pro-
viding feedback); and client experiences (e.g.,
demonstration of change talk and intention to
change, sense of discrepancy between the pres-
ent situation and valued goals). The scholar-
ship in this area draws confl icting conclusions
regarding the role of relational elements, in-
cluding empathy and the spirit of motivational
interviewing, in facilitating change (Apodaca
& Longabaugh, 2009; Miller & Rose, 2009).
Continued knowledge development in this
area is likely to strengthen theoretical under-
standings of motivational interviewing, direct
practice that draws on this approach, and posi-
tive outcomes for people facing substance use
and other health concerns.
Transtheoretical/Stages of
Change Model
The transtheoretical model provides a frame-
work for understanding the incremental pro-
cesses that facilitate intentional changes in
behavior (DiClemente & Velasquez, 2002).
Central to this model is the idea that people
experience fi ve stages in the process of mak-
ing changes in their behaviors, hence the name
stages of change (DiClemente & Velasquez,
2002; Prochaska, DiClemente, & Norcross,
1992). The fi ve stages of change include pre-
contemplation, contemplation, preparation,
action, and maintenance (see Box 17.1).
Key tenets of the stages of change model
involve three concepts.
1. The change process can begin before
people have identifi ed that they have a
problem (precontemplation) and proceeds
with increased recognition of a problem-
atic behavior (contemplation), to con-
siderations about how change might be
approached (preparation), to engaging
in behavior change (action), and fi nally
to making a sustained behavioral change
(maintenance).
2. Relapse, as “the rule rather than the excep-
tion with addictions,” leads to a spiral model
of progression through the stages of change
(Prochaska et al., 1992, p. 1104). In this
spiral model, a person who has taken action
and experienced a relapse may return to
the contemplation or preparation phase and
then continue to proceed through the stages
of change (Prochaska et al., 1992). As in the
Relapse Prevention model, relapse is viewed
as an opportunity for learning rather than as
a failure (Prochaska & Prochaska, 1999).
As further described by Prochaska and Pro-
chaska (1999), people who attempt to stop
smoking typically engage in three or four
action efforts over a period of 7 to 10 years
before achieving sustained maintenance.
Box 17.1 Five Stages of Change
1. Precontemplation. No intention of
changing behavior in the foreseeable
future. Many people are unaware or
underaware of their problems during this
stage.
2. Contemplation. Awareness that a
problem exists and serious consideration
about overcoming it but no commitment
to take action at this time. Contemplators
typically experience ambivalence and
often weigh the pros and cons of the
problem and its solution.
3. Preparation. Intention to take action in
the next month; unsuccessful in taking
action during the past year.
4. Action. Modifi cation of behavior,
experiences, or environment to overcome
problems. This stage involves successful
alteration of the addictive behavior for a
period of one day to six months.
5. Maintenance. Prevention of relapse and
consolidation of gains attained during
action.
Source: Adapted from “In Search of How People
Change: Applications to Addictive Behaviors,” by J.
O. Prochaska, C. C. DiClemente, and J. C. Norcross,
1992, American Psychologist, 47(9), pp. 1103–1114.
JWBT514_ch17.indd 445JWBT514_ch17.indd 445 9/21/11 7:43 PM9/21/11 7:43 PM
446 Health Social Work: Selected Areas of Practice
Although the social worker does not set
people up for failure by expecting relapse,
it is important to frame relapse in terms
of lessons that can be learned, to provide
feedback for clients regarding the time
required to achieve sustained behavioral
change, and to assist clients with maintain-
ing self-effi cacy and reengaging in change
efforts (DiClemente, 1991; DiClemente &
Velasquez, 2002; Prochaska & Prochaska,
1999; Prochaska et al., 1992).
3. DiClemente and Velasquez (2002) de-
scribe the importance of matching the in-
tervention strategy to the client’s stage of
change. For example, clients who do not
view their drinking habits as problematic
and are not considering changing them
would be considered to be in the precon-
templation stage. In this stage, action-
oriented steps are likely to be premature
and to yield limited success (Prochaska
et al., 1992). Rather than proceeding
with action-oriented steps, motivational
interviewing strategies (e.g., empathic,
refl ective listening; recognizing client
autonomy to make decisions about ac-
cepting assistance; weighing out the ben-
efi ts and drawbacks of current alcohol
use; providing a menu of options) that
facilitate movement from precontempla-
tion to contemplation would be indicated
(DiClemente & Velasquez, 2002).
Although the stages of change model can
be useful in conceptualizing a person’s readi-
ness to change along a continuum, with impli-
cations for numerous populations and settings
(e.g., to address substance use, partner vio-
lence exposure, health behaviors, and men-
tal health), recent scholarship demonstrates
mixed fi ndings regarding its effectiveness in
practice (Bridle et al., 2005) and critiques the
validity of some of its theoretical underpin-
nings (IOM, 2001; Littell & Girvin, 2002).
Bridle et al. (2005) reviewed behavioral out-
comes of 35 trials based on the transtheoreti-
cal model. Of the 35 studies, which focused
on a range of health issues including smok-
ing, dietary change, and treatment adherence,
the model was favored in approximately one-
quarter of the comparisons. In approximately
half of the comparisons, the intervention and
control group outcomes were similar, and in
another quarter, the fi ndings were inconclu-
sive. Based on a review of 87 studies that
examined the stages of change with diverse
target problems, Littell and Girvin (2002)
concluded that this model is limited in two
main ways. First, their review suggests that
there is a lack of distinction between each of
the discrete stages and that there is limited
clarity regarding the relationship between
readiness for change and the stages. Second,
their review suggests that there is a lack of
evidence to suggest that people move through
the stages in a stepwise fashion. Little and
Girvin propose that conceptualizing change
along a continuum that may not refl ect linear
progression may be useful and that the model
may have heuristic utility; however, they cau-
tion against intervention matched to stages,
and they argue that future research should fur-
ther explore change processes across diverse
problems and sociocultural contexts.
Public Health: Harm Reduction
Approach
Emerging out of the Netherlands in the 1980s,
the harm reduction approach is relatively new
in the substance abuse fi eld. Although a grow-
ing body of literature addresses the potential
of harm reduction and traditional approaches
to work in complementary and integrated
ways (Denning, 2001; Futterman, Lorente, &
Silverman, 2004; Housenbold Seiger, 2004;
Kellogg, 2003; Lee, Engstrom, & Petersen, in
press; Marlatt, Blume, & Parks, 2001), harm
reduction sometimes is seen as at odds with
abstinence-oriented traditional approaches.
Harm reduction philosophy, however, does
not dismiss the fact that abstinence is often
an ideal goal for many substance-using indi-
viduals (Marlatt, 1998). In addition, promi-
nent scholars in the addictions fi eld argue that
because addiction is a chronic health condi-
tion, “improvement rather than cure” is “the
only realistic expectation for the treatment of
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Substance Use Problems in Health Social Work Practice 447
addiction” (O’Brien & McLellan, 1996, p.
237). The approach recognizes that many cli-
ents are not ready to pursue abstinence at the
time they come into contact with treatment
systems. Rather than arguing with this group
of clients about appropriate goals or, worse,
turning them away from treatment, harm re-
duction is a method of engaging clients as they
are. It recognizes that people who currently are
using substances have strengths, and it draws
on these strengths to empower clients to re-
duce harms in their lives and to achieve goals
that are important to them. As noted by Miller
and Miller (2009), “[C]lients themselves have
priorities, and the extent to which we address
them is likely to infl uence our success with en-
gagement, retention, and outcomes” (p. 685).
Their perspective that treatment should focus
on improving people’s lives, not just the sup-
pression of substance use, is consistent with a
harm perspective. Harm reduction values posi-
tive changes in clients’ lives, including those
who may not focus on their substance use. The
Harm Reduction Coalition (n.d.) describes that
this approach “establishes quality of individ-
ual and community life and well-being—not
necessarily cessation of all drug use—as the
criteria for successful interventions and poli-
cies.” Finally, in many ways, a harm reduction
approach is consistent with social work values
(Brocato & Wagner, 2003; MacMaster, 2004).
By meeting clients where they are, the worker
acknowledges the inherent worth and dignity
of each person regardless of the substances
they may use. Furthermore, this approach
embodies the value of social justice by recog-
nizing that all substance users, regardless of
their motivation to abstain from using, deserve
treatment services (Brocato & Wagner, 2003).
The public health approach of harm re-
duction has numerous key components. As
described by the Harm Reduction Coalition
(n.d.), harm reduction “does not attempt to
minimize or ignore the real and tragic harm
and danger associated with licit and illicit drug
use”; however, it also “accepts, for better and
for worse, that licit and illicit drug use is part
of our world and chooses to work to minimize
its harmful effects rather than simply ignore
or condemn them.” Harm reduction strategies
that aim to reduce harmful effects of drug use
include direct practice or treatment interven-
tions, environmental modifi cations or pub-
lic health approaches, and public policy and
advocacy initiatives (Marlatt, 1998; Rotgers,
Little, & Denning, 2005). Direct practice and
treatment interventions can involve these strat-
egies: low-threshold service access; motiva-
tional interviewing; education conducted with
a collaborative, participatory spirit; relapse
prevention strategies informed by cognitive-
behavioral approaches; pharmacotherapy,
such as methadone treatment and nicotine re-
placement; and integration of substance use
screening, brief intervention, and referral in
emergency departments and trauma centers
(Hunt, 2003; Logan & Marlatt, 2010; Marlatt,
1998; Marlatt & Witkiewitz, 2010; Rotgers
et al., 2005).
Environmental modifi cations and public
health approaches can involve making clean
needles and condoms available; facilitating
designated driver programs; facilitating access
to health care and to safe, affordable housing
without treatment and abstinence contingen-
cies; and preventing overdose with adminis-
tration training and distribution of naloxone
(Narcan) (Harm Reduction Coalition, n.d.;
Marlatt, 1998; Marlatt & Witkiewitz, 2010;
Rotgers et al., 2005). Public policy and advo-
cacy initiatives can involve reducing barriers
and facilitating access to services, working to
eliminate discrimination against people with
substance use problems, reforming legal con-
sequences for substance consumption, and ad-
dressing sentencing disparities (Marlatt, 1998;
Rotgers et al., 2005).
One such sentencing disparity is the 100
to 1 disparity for the federal mandatory mini-
mum sentence for possession of crack and
powder cocaine that disproportionately affects
people who are African American (Hatsukami
& Fischman, 1996). Under this policy, a per-
son with a fi rst-time offense of possession
of 5 g of crack cocaine would be mandated
to a minimum sentence of fi ve years; this
sentence would require possession of 500
g of cocaine hydrochloride (Hatsukami &
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448 Health Social Work: Selected Areas of Practice
Fischman, 1996). The U.S. Senate and House
of Representatives passed a bill to reduce this
disparity, and President Obama signed the
Fair Sentencing Act in 2010. In this bill, the
5-year sentence would be enacted with 28 g
of crack cocaine (Fields, 2010). Addressing
such disparities refl ects public policy initia-
tives to reduce harm and to pursue social jus-
tice. Last, harm reduction values a range of
positive outcomes that refl ect reduced harm
associated with drug use at multiple levels
(e.g., individual, community, society), and
it favors individualized approaches to refl ect
the unique experiences and interests of indi-
viduals and communities (Harm Reduction
Coalition, n.d.; Hunt, 2003).
Research regarding harm reduction has fo-
cused heavily on needle exchange and metha-
done treatment interventions (Hunt, 2003). In a
review of 42 studies of syringe exchange pro-
grams, Gibson, Flynn, and Perales (2001) iden-
tifi ed positive outcomes with 28 of them. The
authors discuss methodological issues, such as
the design of the research and selection and di-
lution biases, which may have infl uenced the
negative (2 studies) and null or mixed (14 stud-
ies) fi ndings; however, based on their review,
the authors conclude that “there is substantial
evidence that syringe exchange programs are
effective in preventing HIV risk behavior and
HIV seroconversion among IDUs [injection
drug users]” (p. 1338). Methadone treatment
has been researched for nearly 40 years; fi nd-
ings indicate positive effects on reductions in
the use of heroin and HIV risk behaviors (Hunt,
2003). In their more recent review, Marlatt and
Witkiewitz (2010) conclude that opioid substi-
tution therapy not only reduces illicit opiate use
and HIV risk behaviors but also illegal activity
and death related to opioid use. Furthermore,
they note that for every dollar spent on treat-
ment for opioid use, there is a $12 cost savings.
Finally, as described by NIDA (2009b), “pa-
tients stabilized on adequate, sustained dosages
of methadone or buprenorphine can function
normally” (p. 39).
There are numerous additional harm reduc-
tion strategies with empirical support. These
strategies include motivational interviewing
(Britt et al., 2004; Hettema et al., 2005; Lundahl
& Burke, 2009; Lundahl et al., 2010; Miller
& Rose, 2009; Miller et al., 2003; Parsons
et al., 2007; Vasilaki et al., 2006; Weir et al.,
2009); cognitive-behavioral relapse prevention
(Dimeff & Marlatt, 1998; Larimer et al., 1999;
Miller & Hester, 1995); behavioral self-con-
trol training, overdose prevention (Seal et al.,
2005); housing programs without treatment or
abstinence requirements (Larimer et al., 2009;
Tsemberis, Gulcur, & Nakae, 2004); and sub-
stance use screening, brief intervention, and
treatment referral in medical settings (Madras
et al., 2009).
Additional Evidence-Based Approaches
The prominent approaches discussed in this
section are not exhaustive. They provide
an introduction to various ways of thinking
about and intervening to address substance
use problems. Additional approaches that
are described by NIDA (2009b) as evidence
based include: (a) behavioral strategies that
incorporate vouchers or incentives to support
abstinence from cocaine, alcohol, stimulants,
opioids, marijuana, and nicotine and (b) the
Matrix model, which incorporates relapse pre-
vention, group therapy, self-help, education
about drugs, and family therapy to assist peo-
ple with reduction of stimulant and other drug
use. Much of the research regarding family-
oriented intervention in the substance abuse
fi eld has focused on adolescents, and the next
models have a developing evidence base: mul-
tisystemic treatment, multidimensional fam-
ily therapy, and brief strategic family therapy
(Henggeler, Schoenwald, Borduin, Rowland,
& Cunningham, 1998; Liddle & Hogue,
2001; Liddle, Rowe, Dakof, Henderson, &
Greenbaum, 2009; NIDA, 2009b; Szapocznik
& Williams, 2000). A growing body of evi-
dence also supports the use of family-oriented
interventions with adults experiencing sub-
stance use problems. Gains associated with
such interventions include reductions in sub-
stance use, greater treatment engagement and
attendance, improved family member well-be-
ing, and enhanced family relationships (NIDA,
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Substance Use Problems in Health Social Work Practice 449
2009b; O’Farrell & Fals-Stewart, 2008;
O’Farrell, Murphy, Alter, & Fals-Stewart,
2010; Smith, Meyers & Austin, 2008). In ad-
dition, as noted by O’Farrell & Fals-Stewart
(2008), behavioral couples therapy, a NIDA-
recognized evidenced-based treatment, results
in a 5-to-1 reduction in social costs, meaning
that for every dollar invested in this treatment,
$5 are saved in social costs, including health-
care, criminal justice, and public assistance
expenditures.
Mental illness frequently co-occurs with
substance use problems, affecting an estimated
50% to 75% of people with substance use dis-
orders (CSAT, 2005; NIDA, 2009b). Among
people experiencing co-occurring substance
use and psychiatric disorders, integrated treat-
ment that focuses on both conditions simultane-
ously is recommended (NIDA, 2009b; CSAT,
2005). Promising approaches to assist people
with co-occurring substance use and mental
health concerns include motivational inter-
viewing, contingency management, cognitive-
behavioral treatment, relapse prevention,
assertive community treatment, intensive case
management, and the modifi ed therapeutic
community model (CSAT, 2005). In addition,
trauma-informed programming may be critical
to support engagement and treatment success
of clients, particularly women, affected by co-
occurring trauma and substance use concerns
(CSAT, 2005; Elliott, Bjelajac, Fallot, Markoff,
& Reed, 2005; Finkelstein et al., 2004; Harris
& Fallot, 2001). A growing body of evidence
supports the use of trauma-specifi c treatments
to address co-occurring trauma and substance
use (Cook, Walser, Kane, Ruzek, & Woody,
2006; Cusack, Morrissey & Ellis, 2008;
Gilbert et al., 2006; Hien, Cohen, Miele, Litt,
& Capstick, 2004; Hien et al., 2010; Morrissey
et al., 2005; Najavits, 2002; Najavits, Schmitz,
Gotthardt, & Weiss, 2005; Zlotnick, Johnson,
& Najavits, 2009). The Center for Substance
Abuse Treatment has published two Treat-
ment Improvement Protocols, one focused on
co-occurring substance use and mental health
conditions (2005) and one focused on treat-
ment needs of women (2009), which provide
detailed practice guidance.
Intervention Modalities
Interventions vary not only according to the
etiological models that inform them but also
in their functions, modalities, and organiza-
tional structures. For example, interventions
may vary according to focus (e.g., detoxifi –
cation, long-term rehabilitation, aftercare),
location (e.g., hospital, community), inten-
sity (e.g., inpatient, residential, outpatient,
self-help groups), identity of the helping
system (e.g., substance abuse services,
mental health center, child welfare, family
and social support), client system (e.g., in-
dividual, group, family), and public or pri-
vate funding sources (McNeece & DiNitto,
2005). Knowledge of various treatment
modalities and locally available resources
is particularly relevant for social workers
in health-care settings, who often facilitate
referrals for additional specialized and com-
prehensive services that people with sub-
stance use problems frequently need and that
can affect treatment outcomes (El-Bassel,
Gilbert, Wu, Chang, & Fontdevila, 2007;
Engstrom, El-Bassel, Go, & Gilbert, 2008;
Engstrom, Shibusawa, El-Bassel, & Gilbert,
2009; Grella & Stein, 2006; Marsh, Cao, &
D’Aunno, 2004; McLellan et al., 1998). De-
tailed guidance for referring adolescent and
adult clients to an appropriate level of care
given their substance use characteristics,
biopsychosocial conditions, and environ-
mental context is provided by the American
Society of Addiction Medicine’s 2001 Pa-
tient Placement Criteria for the Treatment of
Substance-Related Disorders.
SCREENING AND
BRIEF INTERVENTION
COORDINATION IN HEALTH-
CARE SETTINGS
For health social workers to incorporate
consideration of potential substance use
problems into their clients’ care, they must
skillfully gather information about their cli-
ents’ substance-using behaviors. For a variety
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450 Health Social Work: Selected Areas of Practice
of reasons, many health and social service
providers simply do not inquire and thus in-
advertently overlook possible substance use
problems. The IOM (1990) recommends that
questions about substance use be included
with routine lifestyle and behavioral ques-
tions, such as those about diet and exercise,
with all people who come into contact with
health-care systems. Especially in light of the
large numbers of people with substance use
problems who do not identify that they have
a problem or seek treatment (approximately
95.5%; IOM, 1990; Madras et al., 2009),
substance use screening, brief intervention,
and referral to treatment (SBIRT) provides
an excellent opportunity to reach this popu-
lation. In addition, research regarding SBIRT
demonstrates powerful fi ndings (Babor et al.,
2007; Madras et al., 2009). A recent study in-
volving 459,599 people employed the SBIRT
model across diverse health-care settings
(e.g., emergency rooms, trauma centers, pri-
mary care, school health clinics) and diverse
populations (e.g., diversity by race/ethnicity,
gender, age, substances used). In this study,
alcohol and drug use screening identifi ed peo-
ple who needed brief intervention, brief treat-
ment, or referral to specialized treatment. Of
those who screened positively for drug use at
baseline, rates of drug use and heavy alcohol
use were 67.7% and 38.6% lower at six-month
follow-up. Furthermore, brief treatment or re-
ferral to specialized treatment generally was
associated with gains in other domains as
well, including health status, emotional prob-
lems, employment, arrests, and homelessness
(Madras et al., 2009).
The next section provides information and
tools necessary for detecting potential sub-
stance use problems. First it discusses issues
related to professional use of self when talk-
ing with clients about substance use behav-
iors. Then it offers some basic considerations
about gathering information. Finally it pres-
ents information about established screening
tools and protocols and how to consolidate in-
formation gathered to conduct brief interven-
tions or to make referrals for other services
as needed.
Screening
Although screening and assessment are pre-
sented separately from interventions in this
chapter, it is important to note that, just as in
other types of social work practice, they are
actually overlapping activities. More often
than not, assessment continues during the in-
tervention process. In fact, NIAAA (2004b)
includes both screening and assessment activi-
ties as part of a brief intervention framework.
Furthermore, the interpersonal experience of
asking clients about their behaviors and pro-
viding feedback based on their answers can be
a potent intervention in and of itself (Miller,
2000).
This chapter focuses more on screening
than on assessment. In general, screening is a
relatively brief process and is aimed at iden-
tifying individuals with potential substance
use problems (Abbott & Wood, 2000; Dono-
van, 1999). When an individual is identifi ed as
being at risk, further assessment is required.
The assessment process is more comprehen-
sive in scope and aims to diagnose substance
use disorders, assess related health and psy-
chosocial effects, and inform specialized and
comprehensive services (Cooney, Zweben, &
Fleming, 1995). This section presents infor-
mation to incorporate substance use screening
into a more general psychosocial assessment
and to make appropriate referrals for further
assessment and intervention when necessary.
Empathic, Invitational, and
Supportive Stance
Because of the stigma and shame often associ-
ated with substance use problems, the manner
in which social workers ask about potential
problems is critical. McCrady (1993) identi-
fi ed several provider characteristics that ap-
pear to be conducive to successful treatment
with persons with alcohol problems. These
characteristics are relevant for accurate screen-
ing as well.
(1) The clinician must be empathic and rec-
ognize that it is often embarrassing and
diffi cult for clients to talk about their
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Substance Use Problems in Health Social Work Practice 451
substance use. If they have struggled with
substance use over time, it is likely that
they have encountered criticism and disap-
proval from family, friends, and previous
treatment providers. In addition, it is im-
portant that clinicians have an appreciation
for how diffi cult it can be to change sub-
stance-using behavior. Often clients have
made multiple attempts at stopping their
use of alcohol, tobacco, or other drugs
only to relapse and feel as if they have
failed, thus leading to greater demoraliza-
tion. The ability to empathize with both the
stigma of substance use and the diffi culty
in changing substance-using behavior is
critical.
(2) The clinician needs to be able to dis-
criminate between the person and his or
her substance-using behavior. McCrady
(1993) notes that this process can involve
a “delicate” balance. First and foremost,
clinicians need to convey a sense of respect
for the person, acknowledging her inher-
ent dignity, value, and worth. At the same
time, however, McCrady cautions that cli-
nicians should be careful not to dismiss or
overlook the problematic substance-using
behavior. Furthermore, given that sub-
stance use problems are so common, it is
not unusual for professional service pro-
viders to have had personal experiences
of problematic substance use in their own
families and social networks. Some treat-
ment programs prefer providers who have
gone through their own recovery. Although
personal experience often can facilitate
empathy, it also carries the potential to
narrow the provider’s beliefs about what
works (Imhof, 1995). Ongoing clinical su-
pervision is critical to facilitate providers’
capacity to honestly acknowledge their
own beliefs and biases and to encourage
the use of emerging knowledge to support
informed engagement, screening, assess-
ment, and intervention.
(3) It is important to be mindful that recent
research has not supported numerous
myths that have infl uenced strategies to
assist people experiencing substance use
problems. For example, evidence does not
support that there is such a thing as an “ad-
dictive personality,” that people with sub-
stance use problems have more enhanced
defense mechanisms that are displayed
as resistance or denial, or that aggressive
confrontation facilitates change (CSAT,
1999b).
Sources of Information
Health social workers gather important infor-
mation about clients’ substance use–related
behaviors from a variety of sources. First and
especially, they gather information from the
clients themselves. In addition, they may gather
information from involved family and friends
and other treatment providers. Finally, they also
may gather information from existing medical/
treatment records, from biological tests such as
toxicology screenings, and from other service
providers. The next sections answer two impor-
tant questions about the process of gathering
information: (1) What is the purpose of gath-
ering this information? and (2) What kinds of
information should be gathered?
Purpose of Gathering Information
About Substance Use Behavior
It is important to understand the purpose of
gathering information about clients’ substance
use history and patterns. Clearly, strong as-
sociations exist between substance use and
a variety of health and social problems that
may bring people into contact with health-care
systems. Often the identifi ed health problem
cannot be treated fully unless the associated
substance use problem is addressed simultane-
ously. Thus, screening for potential substance
use problems is central to recommending and
providing comprehensive treatment for cli-
ents’ identifi ed health problems. For example,
active use of alcohol and other substances
may contraindicate certain pharmacotherapies
and medical procedures. Specifi c information
about the frequency and amount of use, as
well as consequences of use, allows the health
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452 Health Social Work: Selected Areas of Practice
social worker to make appropriate recommen-
dations and referrals.
What Information to Gather
When screening for substance use problems,
social workers may gather information that
falls into several different categories: sub-
stances being used, frequency of use, amount
of use, consequences of use, and circum-
stances in which one uses. In addition, be-
cause of the genetic infl uence for substance
dependence, social workers may want to ask
about substance use by close family members
(NIAAA, 2004b). Established tools, which are
discussed next, may include questions from
one or more of these categories. In general,
questions that ask about consequences of al-
cohol and other drug use tend to be effective
for detecting people who have substance use
disorders; however, such questions may miss
identifying people who are at risk for develop-
ing a substance use disorder. Questions about
frequency and amount are typically important
for detecting persons at risk (CSAT, 1997).
Because it may be particularly diffi cult for
clients to respond honestly about using illicit
substances, it is generally helpful to begin with
inquiring about alcohol use (IOM, 1990) and
then to discuss other drug use. Questions re-
garding other drug use may be less stigmatizing
when paired with questions regarding alcohol
use. Risk factors for other drug use include
psychiatric illness, genetic predisposition, peers
who use alcohol and other drugs, familial con-
fl ict, and HIV-positive status (CSAT, 1997).
NIAAA (2007) recommends simply begin-
ning by asking “Do you sometimes drink beer,
wine, or other alcoholic beverages?” Negative
answers should be followed up with the ques-
tion “What made you decide not to drink?”
(CSAT, 1997, p. 15). If the client has been
a lifelong abstainer or reports abstinence for
fi ve years or longer, the screening, with a few
exceptions discussed next, can be concluded.
Regardless of what they report about drinking
alcohol, adolescents should be asked about use
of other drugs, particularly marijuana. Women
who are pregnant or who have experienced
a major life transition should be asked about
prescription drug use and over-the-counter
sleep aids (CSAT, 1997). Finally, all older
adults (those 60 years and older) also should
be asked about over-the-counter and prescrip-
tion drug use (CSAT, 1998).
NIAAA (2007) recommends that positive
answers to “Do you sometimes drink beer,
wine, or other alcoholic beverages?” should be
followed with a question about frequency and
amount. Such questions can begin with “How
many times in the year have you had fi ve or
more drinks in a day [for men] or four or more
drinks in a day [for women]?” If the person
reports one or more days of heavy drinking,
the next questions should include “On average,
how many days a week do you drink?” and
“On a typical drinking day, how many drinks
do you have?” (p. 4). It can be useful to ask the
client “What is the maximum number of drinks
you consumed on any given occasion during
the past month?” With this question in particu-
lar, standard drink measures should be clearly
identifi ed. One drink is equivalent to 12 oz of
beer or wine cooler; 8–9 oz of malt liquor; 5 oz
of table wine; 3–4 oz of fortifi ed wine (such as
sherry or port); 2–3 oz of cordial, liqueur, or
aperitif; and 1.5 oz of spirits (NIAAA, 2004b).
With information about the frequency and
amount of alcohol use, the social worker is
able to determine if the client’s alcohol con-
sumption is within a safe range or is poten-
tially problematic. In defi ning “at risk” alcohol
use, NIAAA (2004b, 2007) states that criteria
differ by age, gender, pregnancy/health/medi-
cation status, and family history of substance
dependence. Consumption of alcohol accord-
ing to these conditions is considered “at risk”:
• More than 14 drinks per week or more than
4 drinks on a given occasion by men
• More than 7 drinks per week or more than 3
drinks on a given occasion by women
• Any amount of alcohol consumption by
pregnant women
• More than 7 drinks per week or more than 3
drinks on any given occasion by older adults
• Any alcohol consumption by children or
adolescents
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Substance Use Problems in Health Social Work Practice 453
In addition, problematic substance use may
intersect with a variety of health and psy-
chosocial problems. The presence of the fol-
lowing factors may suggest increased risk of
substance use problems:
• Mental health problems
• Presence of infectious diseases such as
HIV, hepatitis B and C, and tuberculosis
• Trauma exposure
• Involvement with peers who use drugs and
alcohol
• Homelessness/housing instability
• Signifi cant familial confl ict or instability
• Familial history of substance use problems
• Vocational instability
• Legal problems (CSAT, 1997)
Although the presence or absence of any
of these risk factors cannot predict whether
a person will experience substance use prob-
lems, their presence can cue the social worker
to further consider possible risk (CSAT, 1997).
In addition, these health and psychosocial risk
factors likely would be points of intervention
for social workers in health-care settings as
part of comprehensive biopsychosocial assess-
ment and intervention.
Established Tools
Multiple measures have been developed to
screen and assess for problems with substance
use. These clinical tools include structured
interviews and self-administered question-
naires. It is essential that these tools dem-
onstrate accuracy in their screening ability
as refl ected by the measure’s sensitivity and
specifi city. Sensitivity refers to the measure’s
ability to identify all persons with the desig-
nated problem (i.e., to avoid false negatives).
Specifi city refers to the instrument’s ability
not to include people who do not have the
designated problem (i.e., to avoid false posi-
tives) (NIAAA, 2004b). For example, if a
measure included the single question “Do you
drink alcohol?” and identifi ed any person who
answered positively as having an alcohol use
disorder, it would have very high sensitivity
and low specifi city. A measure that identifi es
a person as having a problem with alcohol use
by a positive response to the single question
“Have you ever blacked out or lost time when
you were drinking alcohol?” would have low
sensitivity and high specifi city. The sensitivity
and specifi city of instruments can be altered
by shifting their cut-off scores, changing their
designated problem, and deleting or adding
items. The next discussion illustrates some of
these principles.
CAGE
The CAGE is one of the most widely used
short screening tools in the substance abuse
fi eld. Originally designed to detect alcohol de-
pendence, it consists of four questions about
aspects of alcohol use (http://pubs.niaaa.nih
.gov/publications/arh28-2/78-79.htm):
1. Have you ever felt that you should cut down
on your drinking?
2. Have people annoyed you by criticizing
your drinking?
3. Have you ever felt bad or guilty about your
drinking?
4. Have you ever had a drink fi rst thing in the
morning to steady your nerves or get rid of
a hangover (“eye opener”)?
A positive answer to two or more questions
is considered clinically signifi cant (Ewing,
1984). Research suggests that this measure
has high levels of sensitivity and specifi city
for identifying persons with alcohol use disor-
ders (Buchsbaum, Buchanan, Centor, Schnoll,
& Lawton, 1991). Because it does not include
questions about frequency or amount of alco-
hol use, however, it is likely to miss some per-
sons who do not meet diagnostic criteria yet
are at-risk drinkers (Adams, Barry, & Fleming,
1996). In an attempt to increase the CAGE’s
sensitivity for a wider range of substance use
problems, both NIAAA (2004b) and CSAT
(1997) recommend using the CAGE in con-
junction with questions about frequency and
amount of alcohol use. Furthermore, both
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454 Health Social Work: Selected Areas of Practice
agencies recommend that a positive answer to
one question prompt further assessment.
The CAGE has been modifi ed to screen for
other drugs in addition to alcohol. The CAGE-
AID (CAGE Adapted to Include Drugs) con-
sists of the original CAGE questions, but
rather than focusing solely on drinking, the
CAGE-AID inquires about drinking or drug
use with each of the questions previously
identifi ed. With the CAGE-AID, the ques-
tions should be preceded by the instruction
“When thinking about drug use, include ille-
gal drug use, and the use of prescription drugs
other than as prescribed” (Brown, Leonard,
Saunders, & Papasouliotis, 1998, p. 102).
Because the CAGE-AID, like the CAGE,
inquires about negative consequences only,
CSAT (1997) recommends asking the addi-
tional question “Have you used street drugs
more than fi ve times in your life?” (p. 17). A
positive answer to this question or to any of
the CAGE-AID questions suggests the need
for further assessment.
The CAGE and CAGE-AID have been
tested with older adults and shown to be ef-
fective in screening for both alcohol and other
drug use problems among this population.
Buchsbaum and colleagues (1991) used a
score of 2 or greater on the CAGE to defi ne
problem drinking in a sample of medical out-
patients over the age of 60 years and found it
to have reasonable sensitivity (.70) and very
good specifi city (.91). Another study examin-
ing the utility of the CAGE-AID for use with
older adults demonstrated high sensitivity for
detecting persons with alcohol or other drug
use disorders (.91 and .92, respectively) but
low specifi city (.48) (Hinkin et al., 2001).
The authors noted that many older adults, re-
gardless of whether they had a substance use
disorder, answered positively to the question
“Have you ever felt you ought to cut down
on your drinking or drug use?” By omitting
this question, specifi city was signifi cantly in-
creased to .69 although sensitivity decreased
to .83. Taken together, these fi ndings suggest
that providers may want to make adjustments
in how they use the CAGE depending on the
population, setting, and goals.
AUDIT
The Alcohol Use Disorders Identifi cation Test
(AUDIT) includes 10 items that can be com-
pleted in an interview or written format. It
was designed through a six-country, multicul-
tural, collaborative project of the World Health
Organization to detect alcohol use–related prob-
lems (Saunders, Aasland, Amundsen, & Grant,
1993). The work group’s initial intent was to
create a screening tool that detected problems
before the development of dependence or se-
rious harm to provide early intervention. The
measure covers three conceptual domains: level
of consumption (items 1–3), dependence symp-
toms (items 4–6), and alcohol-related conse-
quences (items 7–10). It is scored by summing
the numbers of the answers to each question.
1. How often do you have a drink containing
alcohol?
(0) Never
(1) Monthly or less
(2) Two to four times a month
(3) Two to three times a week
(4) Four or more times a week
2. How many drinks containing alcohol do
you have on a typical day when you are
drinking?
(0) 1 or 2
(1) 3 or 4
(2) 5 or 6
(3) 7 to 9
(4) 10 or more
3. How often do you have six or more drinks
on one occasion?
(0) Never
(1) Less than monthly
(2) Monthly
(3) Weekly
(4) Daily or almost daily
4. How often during the last year have you
found that you were not able to stop drink-
ing once you had started?
(0) Never
(1) Less than monthly
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Substance Use Problems in Health Social Work Practice 455
(2) Monthly
(3) Weekly
(4) Daily or almost daily
5. How often during the last year have you
failed to do what was normally expected
from you because of drinking?
(0) Never
(1) Less than monthly
(2) Monthly
(3) Weekly
(4) Daily or almost daily
6. How often during the last year have you
needed a fi rst drink in the morning to get
yourself going after a heavy drinking ses-
sion?
(0) Never
(1) Less than monthly
(2) Monthly
(3) Weekly
(4) Daily or almost daily
7. How often during the last year have you
had a feeling of guilt or remorse after
drinking?
(0) Never
(1) Less than monthly
(2) Monthly
(3) Weekly
(4) Daily or almost daily
8. How often during the last year have you
been unable to remember what happened
the night before because you had been
drinking?
(0) Never
(1) Less than monthly
(2) Monthly
(3) Weekly
(4) Daily or almost daily
9. Have you or someone else been injured as a
result of your drinking?
(0) No
(2) Yes, but not in the last year
(4) Yes, during the last year
10. Has a relative or friend or a doctor or
other health worker been concerned
about your drinking or suggested you
cut down?
(0) No
(2) Yes, but not in the last year
(4) Yes, during the last year
Scores range from 0 to 40. In general,
a score of 8 or greater points to the
strong likelihood of problematic alcohol
use (Saunders, Aasland, Babor, De La
Fuente, & Grant, 1993).
Recent research suggests that, in general, the
AUDIT has utility across gender and racial groups,
although some differences in performance be-
tween groups have been found (Reinert & Allen,
2002). For example, Cherpitel (1998) found that
when used with a standard cut-off score of 8, the
AUDIT was less sensitive for women than for
men. NIAAA (2007) recommends that a cut-off
score of 8 or higher refl ects a positive screening
for men and a cut-off score of 4 or higher refl ects
a positive screening for women.
TICS
The Two-Item Conjoint Screening (TICS) for
alcohol and other drug use has shown strong
sensitivity and specifi city (approximately
81%) in an evaluation with 434 adults in pri-
mary care (Brown, Leonard, Saunders, &
Papasouliotis, 1997). The TICS involves two
questions:
1. In the last year, have you ever drank or used
drugs more than you meant to?
2. Have you felt you wanted or needed to cut
down on your drinking or drug use in the
last year?
As noted by Brown and colleagues (1997),
a positive response to either question is likely
to accurately identify the presence of a current
substance use disorder among 80% of adults
(age 18–59 years) who are screened.
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456 Health Social Work: Selected Areas of Practice
Additional Tools
Many other tools have been developed for
screening and comprehensive assessment of
substance use–related problems. Although
there are too many to describe here, a few are
mentioned. The Michigan Alcoholism Screen-
ing Test (MAST) is a 25-item instrument de-
signed to detect alcohol problems (Selzer,
1971). Two shorter versions are available,
the 13-item Short MAST (SMAST; Selzer,
Vinokur, & van Rooijen, 1975) and the 10-
item Brief MAST (B-MAST; Pokorny, Miller,
& Kaplan, 1972). The MAST-Geriatric Ver-
sion (MAST-G; Blow et al., 1992) has been
validated for use with older adults. Finally, the
Drug Abuse Screening Test (DAST; Skinner,
1982) was designed to identify problems re-
lated to the use of drugs other than alcohol.
From Screening to Brief Intervention
If the screening process indicates that a person
may have a possible substance use problem,
the social worker will then want to follow up
with further assessment for substance use dis-
orders, conduct a brief intervention, and, de-
pending on the severity of the problem, make
a referral for more comprehensive assessment
and services (Babor et al., 2007; Madras et al.,
2009; NIAAA, 2007; SAMHSA, 1999). Brief
interventions, which are discussed next, pro-
vide a means by which social workers talk with
clients about risks related to their use and en-
hance their motivation to take positive steps to-
ward addressing their substance use problems.
Feedback about the screening results is the
fi rst step of an initial brief intervention. CSAT
(1997, 1999a,b) recommends that feedback be
given promptly, in a direct and nonjudgmental
manner, and framed in a way that conveys re-
spect, relates to the client’s medical health, and
is delivered with cultural competence.
Brief Interventions
Opportunities for addressing substance use
problems frequently occur in nonsubstance
abuse treatment settings. Health social workers
and other professionals can be equipped to act
on these opportunities through the use of brief
interventions. Brief interventions are defi ned
as “those practices that aim to investigate a
potential problem and motivate an individual
to begin to do something about his substance
abuse, either by natural, client-directed means
or by seeking additional treatment” (SAM-
SHA, 1999, p. 5). Brief interventions are in-
formed by general guidelines and include a
variety of strategies and techniques.
General Goals and Guidelines
The general goal of all brief interventions is
based on a philosophy of harm reduction: “to
lower the likelihood of damage that could
result from continued use of substances”
(SAMHSA, 1999, p. 5). Goals specifi c to in-
dividuals depend on their aims, the character-
istics of their use (e.g., substance of choice,
severity of use, history of use), their readiness
for change, and the setting in which the inter-
vention is offered (CSAT, 1999a). Although
eliciting goals that are of interest to the cli-
ent should guide the goal-setting process,
specifi c goals might include these examples:
participating in a more comprehensive as-
sessment, identifying costs and benefi ts of
substance use, recording amount of use over
a given time period, decreasing amount of use
over a given time period, declining an offer
for a drink or other substance, attending an
AA or NA meeting, expanding a supportive
social network, and identifying positive ac-
tivities that can be substituted for substance
use (CSAT, 1999a). These possibilities are
only a few examples. The social worker and
client can creatively brainstorm to identify
other goals appropriate for the particular
circumstances of the client. Social workers
should emphasize the positive quality of any
goal that decreases the risk of harm resulting
from substance use.
In an extensive review of 32 studies in
14 countries, the fi ndings of Bien, Miller, and
Tonigan (1993) provide substantial support
for the effectiveness of brief interventions to
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Substance Use Problems in Health Social Work Practice 457
assist people experiencing problematic alcohol
use. In 11 out of 12 trials, brief intervention
enhanced referrals and engagement in
specialized services. In seven out of eight tri-
als, brief interventions were effective in reduc-
ing alcohol use or problems associated with
use in comparison to no intervention. Miller
and Sanchez (1993) examined the brief inter-
vention strategies employed in these outcome
studies to determine common ingredients
among the interventions. Six components of ef-
fective brief interventions were identifi ed and
are summarized by the now widely known and
recommended FRAMES acronym: “Feedback,
Responsibility, Advice, Menu, Empathy, and
Self-effi cacy” (Bien et al., 1993, p. 326; Britt
et al., 2004; CSAT, 1999a; Miller & Sanchez,
1993). Such brief interventions, including the
FRAMES approach, are important ingredients
in the SBIRT model addressed earlier (Madras
et al., 2009).
(1) Providers offer feedback to clients to in-
form them about the risks associated with
their substance use; however, this feedback
process should be interactive, with incre-
mental provision of information and elici-
tation of the client’s responses to it (CSAT,
1999a,b). Effective brief interventions
typically include structured screening,
such as those discussed earlier. Follow-
ing this screening, clients receive infor-
mation about the status of their substance
use. In addition to educating clients about
their general status, health social workers
also should provide clients with informa-
tion regarding the health interactions and
consequences of their substance use. For
example, active substance use contrain-
dicates many medical interventions (e.g.,
organ transplants, particular medications).
(2) Responsibility for change is placed with
the clients (CSAT, 1999a). It is important
for clients to know that while the profes-
sional is concerned and interested in their
welfare, ultimately it is the decision and
responsibility of clients to make changes
in substance use behavior. Care must be
taken so that clients do not feel alone
in trying to change or blamed for their
problems. Rather, social workers should
recognize that this step is about self-de-
termination and empowerment (CSAT,
1999b), which refl ects the spirit of auton-
omy, a central component of motivational
interviewing (Miller & Rollnick, 2002).
(3) The provider gives advice to clients to
change their behavior (Bien et al., 1993;
CSAT, 1999b). This advice will vary de-
pending on the client and can range from
suggesting a change in substance use be-
havior to providing relevant information
about substance use (CSAT, 1999b). Key
elements of giving advice in a way that is
consistent with motivational interviewing
include asking permission from clients to
provide the advice (e.g., “Can I tell you
what I’ve seen in the past in these situa-
tions?” (CSAT, 1999b, p. 27), providing in-
formation in culturally relevant ways, and
attending to the way in which the sugges-
tions are made (Britt et al., 2004; CSAT,
1999b).
(4) The social worker provides a menu of vari-
ous options to facilitate change (Bien et al.,
1993; CSAT, 1999b). Such options may
include treatment services, self-help, and
other change strategies. Providing clients
with information about the options and dis-
cussing their perspectives about them are
central elements of assisting clients with
making an informed decision about how
they would like to proceed (CSAT, 1999b).
(5) The social worker should use an empa-
thetic stance that conveys respect, caring,
warmth, and refl ective listening (Bien
et al., 1993; CSAT, 1999b).
(6) Social workers should seek to enhance cli-
ents’ sense of self-effi cacy, that is, the be-
lief that they can and will accomplish goals
they set for themselves (CSAT, 1999b).
Conveying hope, optimism, and recogni-
tion of clients’ strengths are meaningful
ways in which to achieve this goal (Bien
et al., 1993; CSAT, 1999b).
JWBT514_ch17.indd 457JWBT514_ch17.indd 457 9/21/11 7:43 PM9/21/11 7:43 PM
458 Health Social Work: Selected Areas of Practice
CONCLUSION
Health social workers face many challenges in
providing effective assistance to persons strug-
gling with substance use problems. The knowl-
edge base is expansive, the fi eld sometimes is
perceived as in fl ux, and substance use problems
can seem impermeable to change. In addition,
such problems have a far-reaching presence
across persons of diverse age, gender, sexual
orientations, and racial, cultural, and socioeco-
nomic backgrounds. This chapter orients the
provider to foundational information that is use-
ful for offering hopeful and effective interven-
tions with clients experiencing substance use
problems. Information about short-term psycho-
active and long-term health effects of commonly
used substances, along with current prevalence
data, is aimed to equip health social workers
with the ability to identify individuals who may
be at risk for diffi culties with use of particular
substances. In addition, such information can
assist with strengthening the developmental and
cultural competence of services to reach affected
groups. The overview of prominent approaches
to conceptualizing and addressing substance use
problems familiarizes the health social worker
with intervention options and their research sup-
port. It is essential that social workers be aware
of the existing evidence base for particular ap-
proaches and, when possible, provide or refer
clients to services that utilize evidence-based
practice strategies. Finally, the chapter provides
screening knowledge and tools as well as a
framework for brief intervention strategies. This
information offers guidance so that the social
worker can assist people experiencing substance
use problems in ways that offer hope, enhance
motivation, reduce harm, and strengthen efforts
to pursue and sustain change.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 17.1
How would you defi ne tolerance, withdrawal,
physical dependence, and addiction? How can
clarity regarding these concepts be helpful in
health social work practice?
Learning Exercise 17.2
How can knowledge regarding the epidemiol-
ogy and effects of various substances be used
in health social work practice with clients?
Learning Exercise 17.3
What are some of the prominent approaches
to conceptualizing and addressing substance
use problems? Do you prefer particular ap-
proaches? What informs your preference for
particular approaches? What does research
suggest about the effectiveness of the ap-
proaches discussed in this chapter, and how
does that information fi t with your perspective
of “what works”? How might the research fi nd-
ings and your preferences inform your direct
practice with people experiencing substance
use problems? What additional evidence can
inform your direct practice in this area?
Learning Exercise 17.4
What does the acronym SBIRT represent? What
is known about its effectiveness? To what degree
do you and the agency you work or intern at en-
gage in SBIRT activities with the clients you
serve? How might SBIRT efforts be strength-
ened in your own practice and in your agency?
Learning Exercise 17.5
In pairs, role-play how might you draw on the
FRAMES model in brief intervention with
Alex in the next hypothetical situation.
Alex is a 25-year-old, heterosexual, Cauca-
sian man of Italian American descent who re-
sides with his mother, who is 60 years old. His
brother, Carl, brought him to the community
health clinic because he is concerned about
his drinking, his use of cocaine, his overall
health, and the worry their mother is expe-
riencing about Alex. After seeing a primary
care physician, Alex was referred to you. Your
JWBT514_ch17.indd 458JWBT514_ch17.indd 458 9/21/11 7:43 PM9/21/11 7:43 PM
Substance Use Problems in Health Social Work Practice 459
brief screening with Alex indicates that he has
made numerous attempts to stop using cocaine
and to reduce his drinking. He explains that
these efforts “have not quite worked out,” but
he feels he can address this issue on his own.
He also feels angry with his brother for “mak-
ing such a big deal about all of this,” but at
the same time he describes feeling guilty about
his behavior when he drinks and uses cocaine.
Alex states that he usually drinks a six-pack of
beer four or fi ve times a week, but he recently
has increased this amount and has not “really
kept track of it.” Alex describes that he uses
cocaine less often since he lost his job a month
ago and cannot afford it. Currently Alex does
not have health insurance or regular income.
Learning Exercise 17.6
What do you consider your strengths and chal-
lenges in working with people experiencing
substance use problems? What additional in-
formation would help strengthen your ability
to effectively assist people experiencing sub-
stance use problems?
Learning Exercise 17.7
If you were asked to develop one of the groups
listed next, how might you proceed? What
approach(es) would guide the group, and how
would you structure it? How might you recruit
participants? Who would be included in the
group? How would you measure the success
of the group? What would be the rationale for
these decisions? What challenges might you
face with implementing this group, and how
might you address them proactively?
Group Topics
• Substance use and health for a general
population
• Pain management for people at risk of
developing substance use
• Problems while managing persistent pain
• Overdose prevention for people at risk and
their loved ones
SUGGESTED RESOURCES
Al-Anon and Alateen—www.al-anon.alateen
.org
Alcoholics Anonymous—www.aa.org
Alcoholism and Drug Addiction Counselor
Information and Certifi cation—www
.naadac.org/index.php?option=com
_content&view=article&id=478&Itemid
=129 Current Clinical Trials—www
.clinicaltrials.gov
Double Trouble in Recovery—www
.doubletroubleinrecovery.org
Based on a 12-step approach, this
program assists people experiencing
co-occurring substance use and mental
health problems.
Harm Reduction Coalition—www.harm
reduction.org
Health Effects of Substance Use—www
.drugabuse.gov/consequences
International Harm Reduction Association—
www.ihra.net
Join Together—www.jointogether.org
Motivational Interviewing—www.motiva
tionalinterview.org
Narcotics Anonymous—www.na.org
National Clearinghouse for Alcohol and
Drug Information (NCADI)—www
.health.org
This clearinghouse contains informa-
tion and resources about alcohol and oth-
er drugs available from NIAAA, NIDA,
and SAMHSA. Resources include vid-
eos, posters, pamphlets, educational
tools and kits, and reports. Information
geared toward a range of audiences (e.g.,
families, youth, health providers, educa-
tors, researchers) are available. Many of
the resources are free.
National Institute on Alcoholism and Alco-
hol Abuse—www.niaaa.nih.gov
This branch of the National Institutes
of Health (NIH) researches the effects
and treatment of problematic alcohol
use.
National Institute on Drug Abuse—www
.nida.nih.gov
JWBT514_ch17.indd 459JWBT514_ch17.indd 459 9/21/11 7:43 PM9/21/11 7:43 PM
http://www.al-anon.alateen.org
http://www.aa.org
http://www.ihra.net
http://www.jointogether.org
http://www.motivationalinterview.org
http://www.na.org
http://www.niaaa.nih.gov
http://www.al-anon.alateen.org
http://www.naadac.org/index.php?option=com_content&view=article&id=478&Itemid=129
http://www.naadac.org/index.php?option=com_content&view=article&id=478&Itemid=129
http://www.naadac.org/index.php?option=com_content&view=article&id=478&Itemid=129
http://www.naadac.org/index.php?option=com_content&view=article&id=478&Itemid=129
http://www.clinicaltrials.gov
http://www.clinicaltrials.gov
http://www.doubletroubleinrecovery.org
http://www.doubletroubleinrecovery.org
http://www.drugabuse.gov/consequences
http://www.drugabuse.gov/consequences
http://www.motivationalinterview.org
http://www.health.org
http://www.health.org
http://www.nida.nih.gov
http://www.nida.nih.gov
460 Health Social Work: Selected Areas of Practice
This branch of the NIH researches the
effects and treatment of drug abuse.
National Registry of Evidence-Based
Programs and Practices—www.nrepp
.samhsa.gov
Substance Abuse and Mental Health Ser-
vices Administration—www.samhsa.gov
This branch of the Department of
Health and Human Services is charged
with developing and disseminating ef-
fective prevention and treatment pro-
grams. SAMHSA includes both the
Center for Substance Abuse Prevention
(CSAP) and the Center for Substance
Abuse Treatment (CSAT).
Substance Abuse Treatment for Gay, Les-
bian, Bisexual, and Transgender Individ-
uals—http://kap.samhsa.gov/products
/manuals/pdfs/lgbt
Treatment Locator (NCADI)—http://
dasis3.samhsa.gov
This resource locates substance abuse
treatment providers sorted by geograph-
ic location, population, and type of treat-
ment.
World Health Organization—http://
whqlibdoc.who.int/hq/1992/WHO_PSA
_92.4. pdf
This site provides guidelines for using
the AUDIT in primary health care.
University of Washington Alcohol and
Drug Abuse Institute—https://depts
.washington.edu/adai
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468
18
Nephrology Social Work
TERI BROWNE
End-stage renal disease (ESRD) is a chronic
condition that requires lifelong treatment via
hemodialysis, peritoneal dialysis, or a kidney
transplant. ESRD is a signifi cant American
public health issue. It is also an important
practice focus for health social work because it
provides the only Medicare mandate for MSW
service provision for a disease or treatment
category. This chapter presents an overview
of psychosocial issues related to ESRD and a
discussion of the role of the nephrology social
worker in various arenas.
Chapter Objectives
• Explore psychosocial aspects of renal fail-
ure and its treatment regimes.
• Identify roles and responsibilities of ne-
phrology social workers.
• Explore nephrology social work assessment
and intervention recommendations.
• Examine the history of nephrology social
work in dialysis and transplantation.
• Defi ne professional issues of nephrology
social workers.
END-STAGE RENAL DISEASE
AS A PUBLIC HEALTH ISSUE
ESRD is a signifi cant and growing American
public health issue, as evidenced by these
fi ndings from the U.S. Renal Data System An-
nual Data Report (2010):
• In 2008, 547,982 U.S. residents had ESRD
(354,600 on hemodialysis; 26,517 on peri-
toneal dialysis; 165,639 with a kidney
transplant). It is projected that by 2030, the
number of ESRD patients will increase to
2.24 million.
• The total spending for ESRD care in 2008
was $39.46 billion.
• ESRD care represents a signifi cant
proportion of federal health-care costs,
comprising 5.9% of the Medicare budget
in 2008.
• Medicare contributions to the ESRD pro-
gram rose from $5.8 billion in 1991 to
$26.8 billion in 2008. Non-Medicare ex-
penditures for ESRD care from Medicaid,
private insurers and state kidney programs
rose from $2.2 billion in 1991 to $12.66 bil-
lion in 2008.
ESRD is a chronic illness that results in
kidney failure and necessitates renal replace-
ment therapy via dialysis or kidney transplan-
tation. ESRD also is referred to as “chronic
kidney disease stage 5.” When an individual’s
kidneys fail, waste products and fl uids ac-
cumulate in the body, urine output decreases
(and may cease entirely), and red blood cell
production diminishes. ESRD may develop
suddenly or over many years; without treat-
ment, a patient with ESRD will die. ESRD has
many causes, with diabetes and hypertension
being the two greatest. Other causes of ESRD
include lupus, gout, chemotherapy, cancer,
substance use, and kidney diseases such as
Note: The author would like to thank her USC
College of Social Work research assistants, Sonya
Davis-Kennedy, Lesley Jacobs, Olivia Jones, Derrick
Jordan, Cassidy Shaver, Valerie Stiling, Felix Weston,
and Jennifer Worthington, for reviewing this chapter
and making suggestions for added content.
JWBT514_ch18.indd 468JWBT514_ch18.indd 468 9/21/11 7:45 PM9/21/11 7:45 PM
Nephrology Social Work 469
standard three-times-per-week hemodialysis.
After a year of this randomized clinical trial,
patients who received more frequent dialysis
were found to have lower mortality rates and
better cardiac status.
In his meta-analysis of the research related
to the benefi ts of home hemodialysis, Rosner
(2010) concludes that patients who receive
hemodialysis at home rather than in a dialysis
center have signifi cantly better outcomes, in-
cluding improved mortality, morbidity, nutri-
tional status, and quality of life. This and other
research that evaluates the benefi ts of home
hemodialysis suggests that the improved out-
comes related to this treatment modality can
be attributed to the longer dialysis treatment
times that home hemodialysis patients usually
receive compared to patients who dialyze in
outpatient centers only three times per week.
Home hemodialysis is a treatment option
that allows patients to perform their own di-
alysis at home. Patients and social support net-
work members receive comprehensive training
to master their own hemodialysis. Dialysis
centers arrange for equipment and supplies
needed for home hemodialysis to be deliv-
ered and set up, using the small hemodialysis
machines that the technology related to this
modality now supports. Patients are trained to
insert their own hemodialysis needles, set up
and run hemodialysis machines, and trouble-
shoot any concerns. Patients can dialyze in the
comfort of their homes or perform hemodialy-
sis when traveling. Patients who receive home
hemodialysis see the members of their dialysis
teams when they return to the dialysis clinic
for laboratory testing and follow-up visits.
Peritoneal dialysis is also a renal replace-
ment treatment modality conducted by patients
themselves. A catheter is surgically implanted
in patients that protrudes from the abdomen
and is used to attach tubing to containers of
dialysate fl uid, which is drained into patients’
abdomens. Using the peritoneal membrane
surrounding the abdominal cavity, the fl uid fi l-
ters patients’ blood and attracts excess fl uids
and is drained and refi lled periodically. Perito-
neal dialysis is done daily, either several times
throughout the day or overnight via a machine.
glomerulonephritis, nephritis, and polycystic
kidney disease.
Dialysis is mostly provided by large for-
profi t national dialysis chains, usually on an
outpatient basis at free-standing dialysis clin-
ics. Transplants are provided in hospitals that
have transplant centers. The average 2010
Medicare cost per patient for hemodialysis
was $77,506 per year; the cost for peritoneal
dialysis was $57,639; the cost for kidney trans-
plantation was approximately $116,100 for the
year in which the transplant was received and
$26,668 per year after the transplant (U.S.
Renal Data System, 2010). Two types of dial-
ysis currently are available: hemodialysis and
peritoneal dialysis.
Hemodialysis is a medical treatment in
which a patient is connected to a dialysis ma-
chine via tubing joined to an external catheter
in the patient’s chest or needles that are inserted
into a permanent vascular access (called a fi s-
tula or graft, which is usually in the patient’s
arm), which is attached to tubing that leads
to the machine. The hemodialysis machine
consists of tubing, solutions, monitors, and a
fi ltering device called a dialyzer that removes
excess fl uid from the patient and cleanses the
blood prior to its return to the body through
tubing connected to the catheter or access. He-
modialysis usually is performed three times
a week (referred to as in-center dialysis), for
at least 3 hours per treatment in an outpatient
dialysis clinic by nurses and patient care tech-
nicians. Hemodialysis patients see their health-
care team while receiving treatments.
The hemodialysis regime can vary, and
daily, overnight, and home hemodialysis are
available patient treatment options. Research
suggests that hemodialysis received more
frequently than three times a week provides
patients with better outcomes, including im-
proved mortality, morbidity, and quality of
life. In the Frequent Hemodialysis Network
(FHN) Trial Group’s 2010 investigation re-
ported in the New England Journal of Medi-
cine, 125 patients were randomly assigned
to a clinical trial and received hemodialysis
six times per week while 120 patients were
randomly assigned to a group receiving the
JWBT514_ch18.indd 469JWBT514_ch18.indd 469 9/21/11 7:45 PM9/21/11 7:45 PM
470 Health Social Work: Selected Areas of Practice
Peritoneal dialysis patients see their health-
care team during monthly visits to the clinic.
Research suggests that patients who re-
ceive peritoneal dialysis instead of in-center
hemodialysis have better outcomes, includ-
ing improved mortality and morbidity rates.
A study of 9,277 dialysis patients from across
the United States demonstrated that peritoneal
patients have a 40% decrease in risk of mortal-
ity, compared to patients who received hemo-
dialysis three times a week (Charnow, 2010).
Interestingly, a recent anonymous survey of
nephrologists suggests that the overwhelming
majority of nephrologists would choose perito-
neal or home hemodialysis if they themselves
needed renal replacement treatment (Schatell,
Bragg-Gresham, Mehrotra, Merighi, & Witten,
2010). When asked what treatment modality
they would choose for themselves if they had
kidney failure and a 5-year wait for a kidney
transplant, only 6.4% of the 660 nephrologists
indicated that they would choose standard three-
times-per-week in-center hemodialysis. Forty-
fi ve percent responded that they would choose
peritoneal dialysis for themselves, and 45% that
they would choose home hemodialysis.
Kidney transplantation is a surgical proce-
dure in which a donor kidney is placed in the
ESRD patient’s body. The donor kidney can
come from a deceased (also known as cadav-
eric) or a living donor. To get a transplant, a
patient must undergo extensive evaluation and
testing. If a living donor cannot be located,
the patient is placed on a waiting list for a
deceased donor kidney. Patients with living
donors may be scheduled for surgery at a fu-
ture date. A person whose kidneys are healthy
can function with only one kidney, making a
living donation an increasingly popular form
of transplantation. Although it usually occurs
between patients and donors who have a rela-
tionship with one another, altruistic donations
from donors who do not know transplant re-
cipients are becoming more common.
These altruistic kidney donations include
“paired donors,” which is a growing phenom-
enon in kidney transplantation. In its sim-
plest form, paired donation matches strangers
who need kidney transplants and have kidney
donors in their social support networks who are
not good matches for transplantation. These
donors are paired with other patients, who
receive their kidneys for transplantation. For
example, Joe is an ESRD patient who needs
a kidney transplant. His wife, Doris, wants to
donate a kidney to Joe and is suitable in most
ways to donate, yet her kidney would not be
compatible with Joe’s blood type. Ann is an-
other ESRD patient in the same situation—her
sister Nancy wants to donate a kidney to Ann,
but she is not compatible with Ann’s blood
type. Transplant centers facilitate a pairing be-
tween these two patients, so that Joe receives
Nancy’s kidney (because they are a good
match) and Ann receives Doris’s kidney (be-
cause they have the same blood type). Paired
donations are becoming increasingly compli-
cated. Rees and colleagues (2009) report on a
paired donor chain that resulted in 10 different
kidney transplants at six different transplant
centers in fi ve different states. In November
2010, Georgetown University Hospital set the
record for the size of a paired donation kidney
swap, transplanting 16 different ESRD pa-
tients with organs from donors who included
spouses, aunts, parents, children, cousins, and
strangers to these 16 patients. The donors were
not biologically compatible with their family
members with ESRD (or were strangers with
benevolent motives for donating a kidney) and
were matched in this “kidney swap” with one
of the 16 patients by Georgetown University’s
kidney transplant center. Because of the scar-
city of deceased organ donors in the United
States, transplant centers and the United Net-
work of Organ Sharing want to increase future
rates of paired kidney donation (Georgetown
University Hospital, 2010).
Transplantation is considered a form of
ESRD treatment, not a cure, because patients
must take immunosuppressant medications
for the life of the kidney to ensure that their
bodies do not reject the donor kidney. Trans-
plants may fail, requiring a patient to return to
dialysis. In an ESRD patient’s lifetime, he may
experience all three forms of ESRD treatment.
Kidney transplantation is the most cost-
effective treatment for ESRD and provides
JWBT514_ch18.indd 470JWBT514_ch18.indd 470 9/21/11 7:45 PM9/21/11 7:45 PM
Nephrology Social Work 471
patients with enhanced physical and mental
health, especially when compared to dialysis
(Becker et al., 2000). An objective of Healthy
People 2010 and a proposed objective of
Healthy People 2020 is to increase the number
of dialysis patients who get kidney transplants
(U.S. Department of Health and Human Ser-
vices, 2000). Transplants may not be possible,
however, in situations where patients are not
medically suited for transplant surgery or in
which they prefer another form of treatment.
Acute dialysis was fi rst done in the 1940s,
the fi rst kidney transplant was performed in
1951, and chronic outpatient dialysis was fi rst
available in the early 1960s. In 1965, there
were only 200 dialysis patients in the world;
prior to 1972, hemodialysis machines were
scarce, and dialysis was largely paid for by pa-
tients or with donated funds (Fox & Swazey,
1979). Selection committees chose individuals
for dialysis, and lack of funding and scarcity
of treatment venues prevented many ESRD
patients from having dialysis. Selection com-
mittees were comprised of lay individuals who
chose dialysis patients based on their perceived
“social worth,” with preference given to fam-
ily breadwinners and community leaders (Jon-
sen, 2000). On October 30, 1972, the national
ESRD program, Public Law 92–601, was
passed after signifi cant lobbying by patients,
their families, and the community in response
to the rationing of dialysis care (Fox & Swazey,
1979). This law provides Medicare coverage of
dialysis or kidney transplantation for all ESRD
patients regardless of age. Medicare also pays
for the expenses for kidney donors, including
paired donors. This coverage is unique, be-
cause ESRD is the only disease category that
guarantees Medicare eligibility (with suffi cient
work history of the patient or spouse/parent).
DEMOGRAPHICS OF
RENAL PATIENTS
The demographics of the renal patient popula-
tion have changed dramatically since the start
of widespread ESRD care in the United States.
The majority of dialysis patients used to be
younger heads of families. Today, individu-
als 65 years and older comprise the fastest-
increasing population among ESRD patients
(Kutner, 1994). Older adults with ESRD have
more comorbidities, greater psychosocial is-
sues and needs, and more physical problems
than do younger adults with the condition
(Chen, Wu, Wang, & Jaw, 2003).
ESRD affects certain groups in the United
States disproportionately; African Americans,
Hispanics, American Indians, and Alaskan
Natives are dramatically more likely to de-
velop renal failure than are White Americans.
Compared to White Americans with an ESRD
incidence of 273 per million, African Ameri-
cans have an incidence rate of ESRD of 998
per million, Hispanics have an incidence of
508 per million for ESRD, Native Americans
have an incidence of 495 per million, and
Asians have an incidence of 296 per million
(U.S. Renal Data System, 2009). Higher inci-
dence of ESRD in minority populations gen-
erally is attributed to the greater prevalence
of diabetes and hypertension in these popula-
tions, leading to ESRD.
Disparity in kidney transplantation also ex-
ists, with White American males more likely
to receive a kidney transplant than any other
demographic group in the United States. Af-
rican American ESRD patients are much less
likely than White Americans to be referred for
renal transplant, placed on a waiting list for a
kidney, or to receive a kidney transplant (U.S.
Renal Data System, 2010). Reasons for this
disparity include a lack of preventive care, pa-
tient preference, socioeconomic disadvantage,
distrust of the medical community, a lack of
knowledge about kidney transplantation, and
medical reasons. Further research on ESRD
disparity is needed.
PSYCHOSOCIAL ASPECTS
Eighty-nine percent of ESRD patients report
experiencing signifi cant lifestyle changes from
the disease (Kaitelidou et al., 2005). The chro-
nicity of ESRD and the intrusiveness of its
required treatment provide renal patients with
JWBT514_ch18.indd 471JWBT514_ch18.indd 471 9/21/11 7:45 PM9/21/11 7:45 PM
472 Health Social Work: Selected Areas of Practice
multiple disease-related and treatment-related
psychosocial stressors that affect their every-
day lives (Devins et al., 1990). Illness intru-
siveness related to ESRD is defi ned as “the
extent to which the illness and/or its treatment
interfere with important facets of a patient’s
life” (Landsman, 1975, p. 328). Researchers
have found that psychosocial issues negatively
impact health outcomes of patients and dimin-
ish patient quality of life (Auslander, Dobrof,
& Epstein, 2001; Burrows-Hudson, 1995;
Kimmel et al., 1998). Social workers can help
patients ameliorate psychosocial barriers to
ESRD care such as:
• Adjustment and coping to the illness and
treatment regime(s)
• Medical complications and problems
• Issues related to pain, palliative care, and
end-of-life care
• Social role adjustment: familial, social, and
vocational
• Concrete needs: fi nancial loss, insurance
problems, and prescription coverage
• Diminished quality of life
• Body image issues
• Numerous losses, such as fi nancial security,
health, libido, strength, independence, mo-
bility, schedule fl exibility, sleep, appetite,
freedom with diet and fl uid
Disease-Related Psychosocial Aspects
ESRD may impair sense of taste, diminish ap-
petite, and cause bone disease that can require
surgery and impair a person’s ability to walk.
A buildup of toxins in the blood may cause
patients to be anemic and uremic. Uremia and
anemia lead to symptomatology such as con-
fusion, lethargy, and sleep problems that have
psychosocial sequelae. Anemia is common
among ESRD patients and impairs activities
of daily living, diminishes energy, and con-
sequently can affect quality of life (Gerson
et al., 2004). ESRD patients have a comprised
nutritional status, and a subsequent low blood
albumin level also decreases patient quality of
life (Frank, Auslander, & Weissgarten, 2003).
Moreover, ESRD usually occurs along
with chronic illnesses, such as hypertension
and diabetes. These illnesses bring their own
psychosocial issues that require ESRD pa-
tients to access health services from a number
of community sources frequently (Merighi &
Ehlbrcht, 2004c).
ESRD patients often require complex medi-
cation regimes due to kidney failure and other
health conditions. Medications and blood
transfusions may be needed during dialysis to
address anemia and iron defi ciency. Dialysis
patients often must take several phosphorous-
binding tablets with every meal as well as
numerous other medications related to ESRD
and its side effects, such as cramping and rest-
less legs syndrome. Transplant patients may,
in fact, have to take dozens of pills a day to
manage their transplant and prevent rejection
of the organ. Self-management of oral medica-
tions is a signifi cant problem among the ESRD
population (Browne & Merighi, 2010). Chiu
and colleagues (2009) conclude that dialysis
patients take the highest number of pills per
day of all patients with chronic illness—25%
of hemodialysis patients must take at least
25 pills per day (median 19 pills).
The toll of these disease-related stressors
is great. Some researchers have found ESRD
patients to be signifi cantly more likely than
persons in the general population to commit
suicide (Kurella, Kimmel, Young, & Chertow,
2005). Others have noted that ESRD results
in anxiety and depression. Auslander and
colleagues (2001) found that 52% of ESRD
patients had signifi cant anxiety; Wuerth and
colleagues (2001) found that 49% of patients
were depressed. Depression in ESRD patients
is a signifi cant issue because:
• Kimmel, Peterson, Weihs, and their fellow
researchers (2000) determined that ESRD
patients who are depressed are more likely
to have poor nutritional outcomes and have
a higher mortality rate. Koo and colleagues
(2003) also have found that depression
leads to malnutrition. Patients who are de-
pressed are not likely to eat properly. De-
pression is linked to higher mortality rates
JWBT514_ch18.indd 472JWBT514_ch18.indd 472 9/21/11 7:45 PM9/21/11 7:45 PM
Nephrology Social Work 473
(Hedayati et al., 2004). In addition, DeOreo
(1997) found that depressed patients were
less likely to adhere to their recommended
treatment regimes than nondepressed pa-
tients and were more likely to have a higher
level of morbidity and mortality.
• Paniagua, Amato, Vonesh, Guo, and Mujais
(2005) found that ESRD patients who are
depressed are more likely to be hospitalized.
Depression can also diminish patients’
quality of life (Frank et al., 2003; Mollaoglu,
2004). This is relevant to public policy and
is a public health concern because DeOreo
(1997) and Mapes and colleagues (2004) have
shown that a low quality of life in ESRD pa-
tients is signifi cantly related to a higher hos-
pitalization rate, greater morbidity, and higher
mortality.
ESRD patients have a lower functional
status than the population as a whole and are
likely to need assistance with activities of daily
living (Kimmel, 2000). ESRD patients often
have insomnia and sleeping problems (Valdez,
1997). They also may have body image issues
related to their dialysis access and medication
side effects (Beer, 1995). Vascular accesses for
hemodialysis can become quite large and vis-
ible on patients’ arms. Peritoneal accesses and
catheters used for hemodialysis are surgically
implanted and protrude from the body. Medi-
cations, especially transplant immunosuppres-
sant drugs, can cause weight gain or other
changes in patients’ physical appearance.
Sexual functioning may be diminished due
to ESRD, another major source of concern for
patients (Wu et al., 2001). ESRD female pa-
tients have decreased rates of fertility because
the disease impairs reproductive endocrine
functioning. This impaired endocrine func-
tioning results in numerous complications of
pregnancy, and ESRD patients are unlikely to
have a successful pregnancy (Holley & Reddy,
2003).
Poor adjustment to ESRD may be exacer-
bated by what Landsman (1975) refers to as
“the marginal man syndrome.” Most ESRD
patients may appear “healthy” despite being
chronically ill. Others may therefore have
unrealistic expectations of their abilities and
expect more of them than is appropriate.
Friends, neighbors, and coworkers may not
understand why patients cannot participate
in a pizza party due to the renal diet or other
social functions due to the dialysis schedule.
Landsman (1975) describes the necessity of
coping with the “concept of perpetual treat-
ment without cure, suspended in a state of
limbo between the world of the sick and the
world of the well, belonging to neither, yet a
part of both, [questioning], am I sick or am I
well?” (p. 268).
Restless legs syndrome, in which patients
have persistent tremors in their extremities,
is common in ESRD patients (Takaki et al.,
2003). Acute and chronic pain is very com-
mon among ESRD patients and can impair
quality of life (Devins et al., 1990). Pain can
result from surgeries, cramping, needle sticks,
neuropathy, and bone disease. Iacono (2003,
2004) found that 60% of dialysis patients
have chronic pain and that 66% of these pa-
tients were using prescription medication for
pain. Lori Hartwell (2002), an ESRD patient
and advocate, describes her own experiences
with pain:
During my many medical procedures, I’ve
had to endure hundreds of needle pricks.
When I was younger, I would never complain
about the number of sticks the nurses made.
Consequently, they repeatedly told me what
a good patient I was. In reality, those needles
hurt! I wanted to cry and scream at the per-
son who kept poking me. Most often I was
silent and tried to be as accommodating as
possible. (p. 8)
Palliative care and end-of-life issues are
prevalent in ESRD. The life expectancy of
patients is 75% lower than similar individu-
als without ESRD (Moss, 2005). Discontinu-
ing dialysis is a recognized treatment choice,
and patients may opt to stop their treatment,
which will lead to death. Without dialysis,
the median number of days that patients will
survive is eight, although there is much vari-
ability in survival time after stopping dialysis
JWBT514_ch18.indd 473JWBT514_ch18.indd 473 9/21/11 7:45 PM9/21/11 7:45 PM
474 Health Social Work: Selected Areas of Practice
(Germain & Cohen, 2007). A study of 115,239
deceased dialysis patients found that 96% of
patients who stopped dialysis died within
a month (Murray, Arko, Chen, Gilbertson,
& Moss, 2006). In the United States, fewer
than 5% of patients opt not to start dialysis
(Germain & Cohen, 2007). Kidney disease
teams are encouraged to discuss realistic ex-
pectations of prognosis and quality of life re-
lated to starting this life-extending treatment.
Russ, Shim, and Kaufman (2007) recommend
that nephrologists have frank discussions with
their patients about their prognoses, how long
they can expect to live on dialysis, and how di-
alysis will impact their quality of life and that
of their families. Many ESRD patients have
psychosocial problems and concerns prior to
death, including signifi cant pain in the last
week of life (Cohen, Germain, Woods, Mirot,
& Burleson, 2005). See Browne (2011) for a
full discussion about palliative and end-of-life
care for kidney disease patients.
Finally, there are particular disease-related
challenges for children suffering from ESRD.
Pediatric ESRD patients and their families face
unique psychosocial stressors. Infants born
with ESRD require frequent hospitalization
and medical visits. Their development is im-
paired, and they may need supplemental nour-
ishment or a feeding tube. Parents of pediatric
ESRD patients are more likely to have anxiety,
depression, and coping problems than parents
of well children (Fukunishi & Honda, 1995).
This is in part because ESRD alters normal
infant care. Infants with ESRD may not pro-
duce urine, for instance, which can be anxiety
provoking for parents (Brady & Lawry, 2000).
Children and adolescents with ESRD may
be concerned especially about body image
related to dialysis accesses (Fielding et al.,
1985). Along with body image issues, they
may have a diffi cult time adjusting to the
ESRD regime of treatment and a special diet.
Kurtin, Landgraf, and Abetz (1994) found that
59% of ESRD adolescents have poor adher-
ence to medical regimes.
ESRD has signifi cant psychosocial rami-
fi cations for patients’ families as well (see
Box 18.1). Dialysis patients’ partners have
problems coping with the illness and its treat-
ment regimes (White & Greyner, 1999). Mac-
Donald (1995) found that families of ESRD
patients have problems adjusting to the impact
of the illness on their lifestyle. Other authors
have noted spouses’ and partners’ increased
levels of stress and problems with managing
role reversal and the need to assume more re-
sponsibilities than usual due to ESRD (Gudes,
1995; Pelletier-Hibbert & Sohi, 2001). The
family also must cope with the possible fi –
nancial burden of ESRD. Because of the time
needed to care for patients and transport them
to treatments, a spouse or child may need to
limit work hours. Kaitelidou and colleagues
(2005) found that 51% of ESRD family mem-
bers reported absences from work related to
the patient’s illness.
ESRD may present patients and fami-
lies with a loss of income, which is another
very important concern of patients and their
families (Wu et al., 2001). One study found
that only 13% of ESRD patients were able
to resume employment after starting dialy-
sis (Dobrof, Dolinko, Lichtiger, Uribarri, &
Epstein, 2000). Sixty percent of a sample of
hemodialysis patients in Greece had to change
professions or retire due to ESRD (Kaitelidou
et al., 2005). Thus, it may be particularly im-
portant for renal social workers to consider the
employment options of their patients. Main-
taining employment and being active after a
diagnosis of ESRD can be benefi cial. Work-
ing patients are less depressed than their un-
employed counterparts (Chen et al., 2003).
Patients with a good rehabilitation status who
stay active through employment or other ac-
tivities also may have a better quality of life
(Mollaoglu, 2004).
Treatment-Related Psychosocial Aspects
The treatment regimes related to ESRD can
have serious psychosocial ramifi cations. Di-
alysis patients are required to assume strict
diets due to their inability to process food
products with high levels of potassium and
phosphorous and a need for sodium restric-
tions. Poor self-management of the standard
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Nephrology Social Work 475
renal diet can have signifi cant consequences
because potassium levels outside the range
considered appropriate can lead to heart fail-
ure. High phosphorous levels can lead to
permanent bone disease and calcifi cation of
the heart. Dialysis patients therefore are placed
on diets that severely limit foods such as ba-
nanas, melons, dried fruit, tomatoes, oranges,
Box 18.1 ESRD Case Example
Dan is a 17-year-old peritoneal dialysis
patient. The nephrology social worker had
been working with Dan and his father, Chris,
for over a year to improve his adherence
to the renal diet and medication regime in
order to have him physically prepared for
kidney transplantation surgery and recovery.
Dan has not been taking his phosphorus-
binding medication with his meals, which
indicates a lack of potential commitment to
take his immunosuppressive medications
posttransplant. If Dan fails to take these
medications as prescribed, his kidney
transplant would be at serious risk of failure.
Dan’s father and the social worker met
several times about this matter with little
success. Chris was emotionally debilitated
due to two jobs and sole custody of his three
children, and had little energy to follow
through with the constant monitoring that
Dan required.
Because Dan was the oldest child and
Chris was often working or asleep, Dan had
been the primary caregiver of his siblings
since he was 7 years old. The combination
of an overwhelming age-inappropriate sense
of responsibility and the normal growth and
development of adolescence was not mixing
well. Chris had come to rely on Dan a great
deal and found Dan’s illness to be a major
interference in their routine. He brought Dan
to the appointments but remained disengaged
and angry; Dan and his father were in open
confl ict much of the time. The social worker
intervened on a number of clinic visits to
reduce the confl ict between the two.
The social worker was able to gain Dan’s
and his father’s agreement to attend one of
the groups she held to educate and support
youth and their parents as they prepared
for transplant. Fortunately, one of her other
challenging patients, Jeff, also attended
that group with his mother. Jeff, a 15-year-
old, had struggled with his own adherence
issues. With social work counseling and
education, Jeff had been able to manage his
medications and a year ago had received
a successful transplant. As the group
progressed, it was clear that Dan found
the group “lame” and wanted to leave. Jeff
confronted Dan directly, one teen to another.
Jeff’s mother, Denise, offered to bring Dan
lunch every day at school to make sure he
took his phosphorus binders with his meals.
Chris cried as Denise told them that she
truly understood what he was dealing with
and how overwhelmed she often felt trying
to care for Jeff. The social worker was able
to direct the discussion to facing challenges
with the benefi t of a support system.
Dan’s school grades improved and both
Dan and his father began to come out of
their self-imposed isolation. They kept
appointments on time and eagerly reported
on things they were doing to have fun. A
couple of group sessions later, Dan, Chris,
Jeff, and Denise arrived together. They had
had an early supper in the cafeteria, where
Denise asked Dan about his medications.
Rather than the surly responses he was
famous for, he laughed and produced his
pills. It was clear that the four had connected
and felt they could help each other within
the support group as well as outside the
hospital milieu. Within the year, Dan’s
phosphorous level was within range, and he
was emotionally ready for his transplant. His
level of responsibility, as demonstrated by
his adherence with the treatment plan, was
an accomplishment that he reveled in and
has shared with the group on a routine basis.
Source: Prepared by Sandra Coorough, Phoenix
Children’s Hospital Kids Kidney Center, Phoenix, AZ.
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476 Health Social Work: Selected Areas of Practice
potatoes, nuts, dairy, cola products, and so-
dium. Patients also may require a high protein
diet due to their low albumin levels. Efforts
toward optimal diet often are hampered by
patients’ impaired appetite and a diminished
sense of taste.
Because of their inability to produce urine
effectively, patients have very strict fl uid
restrictions, as little as 48 ounces per day.
Otherwise, excess liquid will build up and
cause patients’ extremities to swell and their
lungs to fi ll with fl uid. Extreme weight gain
between dialysis treatments can lead to dis-
comfort during hemodialysis, and removal
of excessive fl uid results in severe cramp-
ing and low blood pressure. Dry mouth and
thirst are common among dialysis patients.
Peritoneal dialysis patients have much less
restrictive dietary and fl uid intake restric-
tions, and transplant patients normally are
not required to follow renal diets or limit
their fl uids.
Poor self-management of ESRD treatment
regimes can have serious ramifi cations for pa-
tients. Missed treatments and high fl uid weight
gains between treatments are associated with
increased mortality in dialysis patients (Saran
et al., 2003). Failing to take transplant immu-
nosuppressant medications leads to transplant
rejection (Russell & Ashbaugh, 2004). Many
dialysis patients may not adhere to medical
recommendations about diet, prescriptions, or
fl uid restrictions (Friend, Hatchett, Schneider,
& Wadhwa, 1997). A study of hemodialysis
patients found that:
• 27% to 31% of patients missed one dialysis
treatment per month.
• 35% to 41% of patients signed off of
dialysis early and did not receive their full
treatment.
• 76% to 85% patients had problems
following their recommended diet.
• 75% of patients who were coping poorly
were likely to miss treatments.
• 50% of patients who were coping poorly did
not follow recommended fl uid restrictions
(Dobrof et al., 2000).
The ESRD treatment regime is both very
intrusive and unrelenting (see Box 18.2).
Patients may fi nd it diffi cult to travel, because
dialysis must be done while they are away
Box 18.2 A Day in the Life of a
Hemodialysis Patient
Florence is a 65-year-old patient who
attends dialysis every Monday, Wednesday,
and Friday. Her treatment begins at 5:00 in
the morning, so she must awaken at 3:30 in
the morning to begin the 25-mile journey
to her dialysis unit. Because she is diabetic,
Florence must eat breakfast before leaving
her home. She must get to the dialysis unit
by 4:45 in the morning so that she can
weigh herself (so that the treatment team
will know how much fl uid to remove during
hemodialysis), have her blood pressure
taken, set up the pillow and blanket she will
use during her treatment, tune the television
that is above her dialysis chair to her favorite
morning news channel, and greet her fellow
patients before the technician puts the
needles in her forearm that connect her to
the machine. During her four-hour treatment,
her vital signs will be taken, her medications
will be given, and she likely will be visited
by her physician, nurses, dietitian, and social
worker. After dialysis, Florence sometimes
has problems with excessive bleeding or
low blood pressure, so she may have to wait
for her problems to stabilize to go home.
Florence takes the local senior citizen van to
her home (because the van does not operate
before 9:00 in the morning, Florence must
pay her neighbor to take her there) and often
must wait over 30 minutes for the van to
arrive at the dialysis center. Many times the
van does not take Florence home directly,
because other people are traveling to doctor
appointments or shopping. Because of this,
Florence usually does not get home from
dialysis until noon. This means that it has
been almost eight hours since she initially
left her house.
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Nephrology Social Work 477
from home. It can be diffi cult to access dialy-
sis treatment services while traveling in rural
areas, areas in which the number of patients
exceeds treatment possibilities, or in areas
experiencing staff shortages. Payment can be
challenging for dialysis patients who are trav-
eling. Some private insurers refuse to pay for
out-of-network procedures, Medicaid cover-
age is specifi c to the state in which the patient
resides, and dialysis in territories outside the
United States is not covered by Medicare and
most insurers. Hemodialysis usually takes be-
tween 4 and 6 hours, including transportation,
pre- and posttreatment procedures, and atten-
tion to complications, three times per week.
Common side effects of hemodialysis in-
clude cramping, nausea, and vomiting. A se-
rious complication of peritoneal dialysis is
an infection called peritonitis, which is pain-
ful and occasionally fatal. Transplantation
requires signifi cant workup, frequent post-
surgical visits, and numerous daily immuno-
suppressant medications. Transplantation is
a serious surgery and may lead to complica-
tions. Long-term immunosuppressant usage
may cause serious negative physical outcomes.
RAMIFICATIONS OF
PSYCHOSOCIAL ISSUES
Many psychosocial factors can negatively
impact renal patients’ nutritional status and
albumin management (Vourlekis & Rivera-
Mizzoni, 1997). Barriers to a quality diet may
include patients’ education and literacy level
because they may not comprehend the diet in-
structions. Insurance may not allow patients to
obtain recommended nutritional supplements.
Social support availability is another psycho-
social attribute related to poor diet in ESRD
patients because they may need assistance to
purchase groceries and prepare meals. Patients
also may have decreased appetite due to de-
pression or anxiety. These factors are very im-
portant for social workers to address because a
poor nutritional status has been clearly linked
to death in ESRD patients (Lowrie & Lew,
1990).
ESRD patients with psychosocial problems
who are less cognizant of the illness and its
treatment are more likely to have high fl uid
gains and missed treatments, which lead to
poor health outcomes. Patients with poor psy-
chological status are less likely to be adher-
ent to treatment regimes and to have more
hospitalizations and higher rates of mortality
(DeOreo, 1997). ESRD patients who feel they
are less in control of their illness tend to cope
less effectively and have a lower quality of life
(Mapes et al., 2004).
Patients are likely to experience several dif-
ferent treatment regimes during the course of
the disease, including unsuccessful kidney
transplants. As they cope with numerous losses,
repeated lifestyle adjustments, and diffi cult
transitions between transplant and dialysis,
these changes can lead to the compounding ef-
fect of the burden of ESRD (Levine, 1999). One
patient describes her experience in this way:
I lived through dialysis treatments, three
transplants, and two rejections. Each trans-
plant brought renewed hope; each rejection
would send me reeling. It took me years to
learn how to manage the feelings that came
along with the constant diagnoses, the seem-
ingly endless stream of bad news. (Hartwell,
2002, p. 7)
SOCIAL WORK
INTERVENTION
The signifi cant psychosocial issues faced by
ESRD patients and their families require so-
cial work intervention, referred to as nephrol-
ogy social work or renal social work. ESRD is
the only disease category or treatment regime
with a public policy inclusion for master’s-
level social workers on health teams. Medicare
regulations mandate that a master’s-level so-
cial worker be on staff in every dialysis center
and kidney transplant program (Federal Reg-
ister, 1976, 2008). These social workers focus
on “improving the patient’s ability to adjust to
and cope with chronic illness and the health-
care system’s ability to meet the needs of the
patient” (McKinley & Callahan, 1998, p. 123).
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478 Health Social Work: Selected Areas of Practice
Megan Prescott, MSW, LCSW is an exam-
ple of a nephrology social worker who works
at both an inpatient hospital setting and an
outpatient dialysis clinic setting. She works
for the University of Colorado Hospital at
both its outpatient dialysis unit and inpatient
acute dialysis unit. She splits her time be-
tween the two units each week. In the chronic
outpatient setting, her population is primar-
ily Medicaid eligible and disadvantaged. She
fi nds that her patients have low health literacy.
Most did not have access to health care before
kidney failure and many were unaware of kid-
ney problems prior to starting dialysis. She
helps patients to adjust to the dialysis treat-
ment regimen; this includes helping them to
identify and utilize available support sources,
develop effective coping strategies, and un-
derstand and engage in educational support
from the team, to maximize self-management
and outcomes. Prescott conducts psychosocial
assessments to determine barriers to optimal
psychosocial functioning and health-care out-
comes. One important aspect of this assess-
ment is a quality-of-life survey, which helps
the team, with the patient at the center, to set
goals for the coming year.
Prescott assists patients in accessing avail-
able resources, including Medicare, Medicaid,
vocational rehabilitation services, housing,
and other community resources. In the acute
care setting, she works as a social worker and
discharge planner for hospitalized dialysis
patients. With her knowledge of the chronic
care setting, she can help develop safe strat-
egies for discharge, keeping in mind the pa-
tients’ dialysis schedule and associated needs.
She coordinates with staff at the patient’s es-
tablished dialysis center to follow up on any
new medical needs for continuity of care.
Some patients will leave the hospital with-
out any changes in routine while others may
need home health assistance or nursing home
care following their hospitalizations. In ad-
dition to this role, Prescott also works with
patients newly diagnosed with kidney failure
who need to begin treatment. She is often their
fi rst social work contact after discovering that
they will need renal replacement therapy. She
introduces patients to the variety of modalities
and with other members of the care team pro-
vides education to choose the best modality to
begin treatment and help coordinate the start
of that treatment. Prescott initiates conversa-
tions about immediate patient concerns, such
as eligibility for Medicare, transportation, and
other resources in the community. These con-
versations will continue when patients estab-
lish care with their dialysis team.
Social workers are included on renal medi-
cal teams, which also include patients, their
family members, nephrologists (kidney doc-
tors), nurses, dietitians, and patient-care tech-
nicians. Teams also may include transplant
surgeons and pharmacists. The inclusion of
a number of specialists refl ects the complex-
ity of the needs and issues renal patients face
and has been linked empirically with optimal
service delivery (Goldstein, Yassa, Dacouris,
& McFarlane, 2004). For example, Lindberg
and colleagues (2005) found that a team ap-
proach to patient education about vascular ac-
cesses that included a social worker was more
successful than a single-disciplinary approach.
A report on morbidity and mortality of dialy-
sis by the National Institutes of Health (1993)
states: “[T]he social and psychological welfare
and the quality of life of the dialysis patient are
favorably infl uenced by the involvement of a
multidisciplinary team” (p. 1). Although many
teams provide patient care in a collaborative
transdisciplinary environment (see Chapter 2
in this volume), the Medicare policies for this
unique practice setting use the term interdisci-
plinary to describe these teams. It is important
to note that the 2008 Medicare Conditions for
Coverage for dialysis and kidney transplant
settings mandate that patients and their fam-
ily members should be considered important
members of the team, and patients have the
right to participate in assessments and care
planning and to refuse any aspect of their treat-
ment (Federal Register, 2008).
Nephrology social work interventions tend
to be valued by patients. Siegal, Witten, and
Lundin’s 1994 survey of ESRD patients found
that 90% of respondents “believed that access
to a nephrology social worker was important”
JWBT514_ch18.indd 478JWBT514_ch18.indd 478 9/21/11 7:45 PM9/21/11 7:45 PM
Nephrology Social Work 479
(p. 33) and that patients relied on nephrology
social workers to assist them with coping,
adjustment, and rehabilitation. According to
Rubin and colleagues (1997), dialysis patients
have ranked a “helpful social worker” as being
more important to them than nephrologists or
nurses. One study reported that 70% of pa-
tients said that social workers gave the most
useful information about treatment modali-
ties compared to nurses and physicians (Hol-
ley, Barrington, Kohn, & Hayes, 1991). These
researchers also found that patients thought
that social workers were twice as helpful as
nephrologists in helping them to choose be-
tween hemodialysis and peritoneal dialysis for
treatment.
Nephrology Social Work Tasks
Social workers can help renal patients with
their psychosocial needs in a variety of ways
in collaboration with the renal health team.
The activities conducted by nephrology social
workers may include assessment, counseling,
education, crisis intervention, end-of-life care,
case management, rehabilitation assistance,
and patient advocacy. Social workers also in-
tervene at the community level.
Assessment
Comprehensive individual psychosocial as-
sessment of ESRD patients is central to the
achievement of optimal patient outcomes (Fox
& Swazey, 1979). Nephrology social workers
conduct an assessment of patients’ psychoso-
cial status to identify their strengths, needs,
and the areas for social work intervention. So-
cial work assessments are completed for every
dialysis and transplant patient and take into
account each patient’s social, psychological,
fi nancial, cultural, and environmental needs.
A unique attribute of ESRD social work
care is that it is provided on a chronic, rather
than episodic, basis. Nephrology social work-
ers are fortunate to work in settings that allow
them to develop long-term relationships with
patients. Long-term relationships provide
them the opportunity to evaluate the effective-
ness of services and reassessment of clients’
needs through time. In her article for the New
Social Worker, Devon Rocha (2010) explains
her view of being a dialysis social worker:
There are many advantages to social work in
this setting. One of these is getting to work
with a consistent client base for potentially
several years. Since I work full time at one
dialysis unit, I get to see everyone a couple
of times each week. This is especially helpful
if or when a patient is experiencing a particu-
larly diffi cult time. It gives a nice opportunity
to at least “check in” on how the patient is
doing, instead of having to wait a full week in
a typical counseling/therapeutic relationship.
There can also be a real opportunity for col-
laboration with the patient’s outside support
system. A teamwork approach involving the
patient’s loved ones can be very effective for
diffi culties such as medication management,
nutrition, or adherence to the treatment regi-
men. It is also rewarding to be there with a
person who is undergoing such a signifi cant
life change, as when a person is newly diag-
nosed with end-stage renal disease and needs
to start dialysis. Some patients have never
even known they were at risk for kidney fail-
ure. Then all of a sudden they must deal with
this new self-image as someone who is “sick.”
This can be very anxiety provoking, with so
many new terms, routines, and new people
involved. There is often a great sense of loss
and always there is a huge lifestyle change.
Social workers also assess transplant do-
nors. Living donor kidney transplants, includ-
ing donations from strangers, have become
increasingly popular in the United States.
Social workers assess donors and recipients
to gauge any normative pressures on donors
that may infl uence their decisions to donate
as well as their motivations for donating and
their ability to make informed consent. This
is important because kidney donation requires
signifi cant surgery and recovery. If individu-
als feel pressured to donate a kidney, a social
worker may recommend that they not donate,
pending further assessment. Social workers
investigate the nature of relationships be-
tween donors and recipients as well as their
psychosocial and mental health statuses and
JWBT514_ch18.indd 479JWBT514_ch18.indd 479 9/21/11 7:45 PM9/21/11 7:45 PM
480 Health Social Work: Selected Areas of Practice
developmental and substance use histories in
order to make a recommendation to the trans-
plant team regarding surgery (Leo, Smith, &
Mori, 2003). The 2007 Medicare guidelines
for transplant centers mandate that every trans-
plant center have an independent living donor
advocate (Federal Register, 2007). This advo-
cate is in place to ensure that living donors are
evaluated independently and to maximize their
informed consent. In some transplant cen-
ters, social workers serve as the living donor
advocates.
Nephrology social workers use various
standardized assessment tools with demon-
strated validity and reliability, including those
to measure depression and quality of life. The
2008 Medicare Conditions for Coverage for
dialysis units mandate that every dialysis unit
that bills Medicare for services must have the
social worker assess patients’ quality of life
(Federal Register, 2008). This mandate was in
response to research fi ndings that suggest that
quality of life can independently predict dialy-
sis patients’ morbidity and mortality (DeOreo,
1997; Knight, Ofsthun, Teng, Lazarus, &
Curhan, 2003). Because future Medicare clini-
cal performance measures for dialysis units
suggest using the Kidney Disease Quality of
Life, most dialysis social workers use this
measurement to assess patient quality of life.
Counseling and Education
Nephrology social workers provide emotional
support, encouragement, and counseling to pa-
tients and members of their support networks.
ESRD patients and their families may have
diffi culty adjusting to the illness and treatment
regimes. Social workers can help them cope
through individual, family, and group counsel-
ing as well as through support groups.
Social workers can provide counseling and
education to decrease patient depression. De-
pression is a serious issue that often is experi-
enced by ESRD patients. Chen and colleagues
(2003) recommend that “a good psychosocial
support program should be incorporated into
the treatment of patients with chronic renal
failure to reduce the possibility and severity
of depression” (p. 124). In an empirical study,
Beder (1999) found that nephrology social
work counseling and cognitive-behavioral
education interventions signifi cantly lower
patient depression. In her experimental
study, Cabness (2005) found that a cognitive-
behavioral education group led by social work-
ers is signifi cantly linked to lower depression.
Johnstone and LeSage (1998) found that 76%
of depressed dialysis patients indicate that they
prefer to seek counseling from the nephrology
social worker on their treatment team rather
than pursue care from an outside mental health
practitioner.
Nephrology social workers help patients
deal with emotional concerns that stem from
the numerous losses associated with ESRD.
These include failed vascular accesses and
transplants, schedule and dietary restrictions,
the death of fellow patients, decreased activ-
ity levels, and employment and professional
losses. Kidney transplant patients also require
social work assistance when coping with anxi-
ety and frustration over being on a transplant
waiting list because it can take several years
to get a kidney transplant. Transplant patients
may need help with feeling guilty about ac-
cepting a deceased donor organ. They also may
have concerns about receiving a kidney from a
living donor because the donor is placed at risk
from the surgery.
Through patient education and other inter-
ventions, nephrology social workers are suc-
cessful in improving patient’s adherence to the
ESRD treatment regime (see Box 18.3). For ex-
ample, Rita-An Kiely and her social work col-
leagues counseled patients on the importance of
attending all hemodialysis treatments, tracked
attendance, and provided ongoing encourage-
ment for adhering to the treatment regime. As
a result of this social work education and coun-
seling, there was a 50% decrease in missed
hemodialysis treatments (Medical Education In-
stitute, 2004). Auslander and Buchs (2002) and
Root (2005) have shown that social work coun-
seling and education led to reduced fl uid weight
gains in patients. Johnstone and Halshaw (2003)
found that social work education and encour-
agement were associated with a 47% improve-
ment in fl uid restriction adherence.
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Nephrology Social Work 481
Beder, Mason, Johnstone, Callahan, and
LeSage (2003) conducted an experimental
research study to determine the effect of cog-
nitive-behavioral social work services. They
found that patient education and counseling by
nephrology social workers was signifi cantly
associated with increased medication com-
pliance. This study also determined that such
interventions improved patients’ blood pres-
sure. Sikon (2000) discovered that social work
counseling can reduce patients’ anxiety level.
Several researchers have determined that ne-
phrology social work counseling signifi cantly
improves ESRD patient quality of life (Chang,
Winsett, Gaber, & Hathaway, 2004; Frank
et al., 2003; Johnstone, 2003).
Nephrology social workers play an impor-
tant role in educating patients about the dif-
ferent treatment modalities for ESRD and in
helping patients pursue different treatment
options. This is particularly important in as-
sisting dialysis patients with getting a kidney
transplant. Despite evidence that a kidney
transplant is the ESRD treatment with the
best outcome, research has demonstrated
that vulnerable patients, particularly African
Americans, are less likely to be successful in
receiving a kidney transplant (Browne, 2008).
The 2008 Medicare Conditions for Coverage
recognize that patients need extra help from
their dialysis team in navigating the pathway
to getting a kidney transplant and now man-
date that all dialysis teams specifi cally and
methodically help all patients who are inter-
ested in a kidney transplant to get one (Federal
Register, 2008). Nephrology social workers
are well suited to oversee this task and help
patients get kidney transplants.
Crisis Intervention
Nephrology social workers provide crisis
intervention services in dialysis and trans-
plant units. Patients may act inappropriately
during hemodialysis, yelling at staff or pa-
tients, threatening violence, or trying to pull
the needles out of their arms. Social workers
also resolve crises with peritoneal dialysis
and transplant patients. Social workers often
effectively mediate confl icts in dialysis set-
tings (Johnstone, Seamon, Halshaw, Molinair,
& Longknife, 1997). Merighi and Ehlebracht
(2004a) found that more than 75% of nephrol-
ogy social workers mediate confl icts.
Box 18.3 Outcomes-Oriented Nephrology
Social Practice
Nephrology social workers at Fresenius
Medical Care in San Diego, CA, have
created an exemplar of outcomes-oriented
dialysis social work intervention. They also
provide “wellness programs” for patients
with ESRD. Because of the barriers that
arise for people to attend these programs,
they have started a telephonic group for
depression management. Patients will meet
once to establish supportive relationships
and then complete fi ve telephonic sessions
with a social worker. Similar to programs
offered to cancer patients, wellness
programming for the patient with ESRD
focuses on three areas:
1. These programs highlight the key role
of patients as part of the renal team and
invite them to participate actively in their
care.
2. The programs focus on imparting life
skills that help patients learn to manage
the complex medical regime in order to
improve survival and quality of life.
3. The programs, often featured as
wellness classes, launch patients out
with a sense of empowerment over their
own medical destiny. The perception of
control and self-effi cacy that improve
with these programs, combined with
the additional social support that the
classes offer, are seen as the key change
agents to their improved outcomes. This
group of social workers also conducts
a number of research projects related
to various psychosocial interventions
and are frequent contributors to renal
publications and presentations.
Source: Prepared by Stephanie Johnstone, Fresenius
Medical Care, San Diego, CA.
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482 Health Social Work: Selected Areas of Practice
End-of-Life Care
Social work has an important role in the pal-
liative and end-of-life care of ESRD patients.
Social workers provide end-of-life information
to patients and their families (Promoting Ex-
cellence in End-of-Life Care, 2002). Yusack
(1999) found that patient education provided
by social workers about advance directives
led to a 51% increase in the use of such docu-
ments. Terminally ill ESRD patients and their
families said that they would like more emo-
tional support and other interventions from
social workers and requested that social work-
ers make contact with their families after they
died (Woods et al., 1999).
The National Program Offi ce of the Robert
Wood Johnson Foundation created an ESRD
workgroup entitled “Promoting Excellence
in End-of-Life Care” in 2002. It recommends
that nephrology social workers:
• Provide education to ESRD patients and
their families on palliative and end-of-life
care.
• Create palliative care programs that include
attention to pain and symptom manage-
ment, advance care planning, and psycho-
social and spiritual support.
• Advocate for the adoption of patient self-
determination policies.
• Create peer-mentoring initiatives and be-
reavement programs.
Case Management
Renal social workers provide information to
patients and their families about resources and
information that are unknown to the family
(McKinley & Callahan, 1998). They routinely
provide case management services, including
information, referrals, and linkages to local,
state, and federal agencies and programs.
Rehabilitation Assistance
Social workers help patients maximize their
rehabilitation status. Doing this includes as-
sessing barriers to patient goals of rehabili-
tation, providing patients with education and
encouragement, and providing case manage-
ment with local or state vocational rehabili-
tation agencies. Helping patients maximize
the achievement of their rehabilitation goals
is very important for this patient population
and is included in the Medicare Conditions for
Coverage as a required focus for all dialysis
units (Federal Register, 2008). Research sug-
gests that many patients do not return to work
after starting dialysis. A survey of 296 ran-
domly selected dialysis clinics in the United
States determined that only 33% of all patients
who were working prior to starting dialysis
maintained employment after the start of treat-
ment (Kutner, Zhang, Huang, & Johansen,
2010).
In a literature review about nephrology so-
cial work and rehabilitation, Romano (1981)
outlines different roles for social workers
related to rehabilitation:
• Enabler/facilitator. Social workers can en-
courage patients to be as active as possible
with work, social activities, and exercise. In
addition to helping patients maintain em-
ployment after starting ESRD treatment,
social workers also can encourage patients
who are unable to or are not interested in
working to be involved in other activities,
such as volunteering and exercise.
• Educator/advocate. Social workers can
educate patients and their families about
vocational rehabilitation resources avail-
able for ESRD patients. They also can
educate schools, workplace settings, and
vocational rehabilitation agencies about the
needs of ESRD patients and advocate for
patients within these settings (Raiz, 1999).
At times, patients may think they can-
not work because of the intrusive dialysis
schedule. Social workers can provide pa-
tient education about home dialysis treat-
ment options that may be more conducive
to employment and allow a more fl exible
daily schedule. Social workers also can ad-
vocate with facility administrators at dialy-
sis units to offer patients dialysis schedules
that allow them to work, such as late-night
or overnight dialysis shifts.
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Nephrology Social Work 483
• Administrator. Social workers can develop
and oversee programs that offer rehabili-
tation opportunities for ESRD patients as
well as conduct relevant research. Many
social workers are involved as board mem-
bers and advisors for the national organi-
zation Life Options, which provides the
ESRD community with information about
rehabilitation.
Team Collaboration
Nephrology social workers collaborate with
the renal team in providing patient care.
They participate in quality assurance pro-
grams and team care planning, and train
other health-care professionals on the topic
of psychosocial issues. The 2008 Medicare
Conditions for Coverage for dialysis units
mandate that every unit implement a Qual-
ity Assessment and Performance Improve-
ment (QAPI) program to assess patient and
clinic outcomes (Federal Register, 2008).
The QAPI initiatives, often called QA
(Quality Assessment) or CQI (Continuous
Quality Improvement) programs, must be
interdisciplinary and include the dialysis so-
cial worker’s participation.
Advocacy
Social workers advocate for their patients
within their clinics as well as with community
agencies (see Box 18.4). For example, a so-
cial worker can explain to the nurse manager
that a patient’s hemodialysis schedule cannot
be changed because the patient would like to
attend a computer class in the afternoons. A
transplant team may hesitate to transplant a
patient with a history of substance use; a so-
cial worker can advocate for this patient and
explain that her four years of sobriety and
her three years of demonstrated adherence to
a dialysis regime merits her consideration for
transplant. Social workers also advocate for
patients on a systems level, with various orga-
nizations and governmental agencies. Arthur,
Zalemski, Giermek, and Lamb (2000) found
that nonrenal medical professionals, such as
home care or nursing home care providers,
are unfamiliar with the psychosocial issues
associated with ESRD. Renal social workers
can help patients navigate complex systems of
service provision, educate nonrenal commu-
nity care providers on the unique issues related
to ESRD care, and advocate for patients with
community providers not familiar with their
special needs.
Community-Level ESRD Social
Work Intervention
Nephrology social workers are committed to
social reform and infl uencing policy and pro-
grams affecting renal patients. Arizona dialy-
sis social worker Kay Smith organized weekly
garage sales to raise money for patients and
persistently lobbied for dialysis services for
undocumented workers. She was suspended
temporarily from her job at a for-profi t dialy-
sis center because of these activities. Smith
was named the 2003 “Social Worker of the
Year” by the National Association of Social
Workers (NASW). Her award noted that “she
made an outstanding difference in areas of
advocacy for clients, social policy, social
work practice, program development, admin-
istration, and research, while demonstrating
outstanding leadership and contributing to a
positive image for the profession” (NASW,
2003). Social worker Steve Bogatz (2000)
successfully advocated with a managed care
organization to secure payment of a kidney
transplant for a patient.
Social workers also are employed in mac-
rolevel services to the ESRD community (see
Box 18.5). They may be clinical managers of
treatment facilities, social work directors of
dialysis corporations, regional social work
coordinators, academic researchers, members
of boards of directors of community agen-
cies, or independent consultants to ESRD or-
ganizations. Nephrology social workers are
employed by nondirect patient care organiza-
tions, including the Centers for Medicare and
Medicaid, the National Kidney Foundation
(national and regional offi ces), the American
Kidney Fund, the American Association of
Kidney Patients, the ESRD Networks, and
state kidney programs.
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484 Health Social Work: Selected Areas of Practice
Box 18.4 Social Workers as Advocates:
Changing Health Policy
In 1982, Arizona Medicaid coverage for
organ transplantation was limited to kidney
transplants only. Many poor and working
poor individuals were enrolled in Medicaid
who needed heart, liver, and bone marrow
transplants, but Medicaid would not provide
coverage for those life-saving treatments.
By the late 1980s and early 1990s, Medicaid
patients eligible for Medicaid based on
federal entitlement, such as Supplemental
Security Income (SSI) or Aid to Families
with Dependent Children (AFDC), were
covered for life-saving organ transplants. But
those working poor individuals not federally
entitled but eligible based on low income
and high medical costs or “spend down” still
were not covered for life-saving transplants,
even though they were enrolled in Medicaid.
It was not uncommon for patients to become
disabled and receive SSI for the fi rst six
months of disability and be eligible for
Medicaid coverage of their transplant only to
lose SSI and that coverage once they began
receiving Social Security Disability Income
(SSDI). Patients receiving SSDI then had to
wait two years before becoming eligible for
Medicare that would cover their life-saving
transplant. Many did not live that long. In
1985, the social workers from the Arizona
transplant hospitals were able to document
that in the previous several years, over 50
people enrolled in Medicaid had died as a
result of this policy.
In November 1994, transplant social
workers joined with support group leaders to
form a coalition to lobby the Arizona State
Legislature and the governor to change the
Medicaid policy that denied heart, liver, and
bone marrow transplants to the working
poor enrolled in Medicaid (Thomas, 1999).
The coalition met regularly and invitations
were sent to every transplant support
group in Arizona, administrators from
the transplant programs, the State Organ
Procurement Organization, the Coalition
on Donation, the Health Departments from
the major metropolitan counties, the State
Health and Medicaid Departments, the
National Kidney Foundation (NKF), the
American Liver Foundation, the American
Association of Kidney Patients, the lobbyists
from the transplant hospitals, the American
Hospital Association, the Legislative
Liaisons (lobbyists) from the counties, and
individuals denied transplants by Medicaid
and their families. The social workers
from the transplant centers functioned as
community organizers.
Rothman’s (1968) principles of social
work practice were utilized: locality
development, social planning, and social
action. Locality development occurred
in developing the coalition of concerned
stakeholders. The social planning principle
was important because the coalition was able
to document that Medicaid was paying more
to provide medical services to individuals
dying than it would have to provide a
heart, liver, or bone marrow transplant.
For example, one woman who received
extensive media coverage died needing a
bone marrow transplant that would have
cost $130,000; Medicaid paid over $800,000
to provide services as she was dying. The
coalition identifi ed three alternative funding
sources: additional federal funds, unused
Medicaid funds in the annual budget, and
revenue from a new tobacco tax. The social
action phase included the development of a
policy brief or white paper that documented
how Medicaid “discriminated” against
the working poor in its transplant policy,
contacting the media, and training coalition
members and others on the legislative
process and how to engage the legislature.
The legislature and Medicaid were
slow to respond to the coalition, and many
of the coalition members were in urgent
need of a transplant. Utilizing a tactic from
Alinsky (1971)—“The threat is usually
more terrifying than the thing itself”—the
coalition threatened media coverage every
time a Medicaid patient who had been
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Nephrology Social Work 485
PROFESSIONALIZATION
OF NEPHROLOGY SOCIAL
WORKERS
Social workers are very involved in provid-
ing effective intervention with ESRD patients.
However, nephrology social workers may face
professional challenges, and they may be as-
signed tasks inappropriately by their employ-
ers. Tasks that are clerical in nature or involve
admissions, billing, and determining insurance
coverage prevent nephrology social workers
from performing the clinical tasks central to their
mission (Callahan, Witten, & Johnstone, 1997).
Russo (2002) found that all of the nephrology
social workers he surveyed felt that transporta-
tion was not an appropriate task for them, yet
53% of respondents were responsible for mak-
ing transportation arrangements for patients.
He found that 46% of the nephrology social
denied a transplant died. As noted, the media
previously had reported on several individuals
who had died after Medicaid denied coverage
for the transplant. This proved to be very
effective in getting the legislature’s attention.
The coalition increased its direct lobbying of
the legislature, the governor, and the media.
In March 1995, fi ve months after
organizing the coalition, the Arizona State
Legislature passed emergency legislation
authorizing the immediate appropriation of
$8.2 million from the tobacco tax to pay for
63 heart, liver, and bone marrow transplants
for the working poor. The governor
personally came to the fl oor of the state
senate to sign the bill into law. In October
1995, the coalition persuaded the governor to
call the legislature into special session when
an additional $2.7 million from the tobacco
tax was appropriated to fund 17 heart-lung
and lung transplants. In 1996, the legislature
expanded the state renal medication program
from $100,000 per year to $250,000 per year.
In 1997, an additional $100,000 was added
to the renal medication program for a total of
$350,000 per year. In 1998, legislation was
passed that created a new $200,000 per-year
nonrenal medication program for heart, liver,
and lung transplant patients. One unexpected
outcome of this process was the development
of a policy that allowed transplant candidates
on waiting lists to remain on the lists if they
lost their Medicaid eligibility and Medicaid
was the payer when the transplant eventually
occurred. By 2004, over 120 working poor
individuals were transplanted. The average
cost to the state was approximately $5
million annually, and over $4 million of state
appropriations have helped needy transplant
recipients with the costs of their medications.
In 2010, due to the economic recession,
the Arizona State Legislature eliminated
Medicaid coverage of liver transplants for
hepatitis C, all lung transplants, all single
pancreas transplants, and reduced coverage
for certain heart transplants and certain bone
marrow transplants. There were also budget
cuts to other areas of Medicaid as well as
to public education and the universities.
Social workers and the transplant community
mobilized but were not able to stop this
reduction in transplants. Unlike the earlier
success of expanding Medicaid coverage for
transplants, the state was in a fi scal crisis,
and no funds were available. The campaign
expanded beyond the Arizona transplant
community to the national organizations such
as the American Society for Transplantation,
the American Society for Transplant
Surgeons, and the United Network for
Organ Sharing. Serious concerns arose
that other states would follow Arizona’s
example and that Medicaid coverage of life-
saving transplants in other states would be
threatened. This issue has not been resolved
to date. Social workers, transplant hospitals,
patients and families, and now national
organizations continue the advocacy.
Source: Prepared by Charles M. Thomas, Banner Good
Samaritan Medical Center Transplant Services, Phoenix,
AZ.
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486 Health Social Work: Selected Areas of Practice
Box 18.5 Social Work and the End-Stage
Renal Disease Networks
The ESRD Network system was established
by law on June 3, 1976, after Medicare
coverage was extended on October 30, 1972,
to individuals younger than 65 years of age
with permanent kidney failure to promote
the effi cient and equitable distribution of
quality medical care to persons with end-
stage renal disease. On June 13, 1978,
the Social Security Act was amended
establishing the ESRD Networks.
The current 18 ESRD Networks, operating
as contractors to the Centers for Medicare
and Medicaid Services (CMS), manage a
computerized patient registry system, ensure
quality of care through continuous quality
improvement methodology and data analysis,
provide community education, process
patient benefi ciary complaints, and provide
regulatory guidance for providers. The
mission of ESRD Network Patient Services
professionals is to provide a patient-centered
perspective in the design and implementation
of ESRD Network programs and to meet the
needs of ESRD patients by assuring quality
of care through communication, education,
and confl ict resolution.
Full-time Patient Services Coordinator
(PSC) positions were mandated by CMS
at each network in 2003. PSCs must
be master’s-prepared social workers or
equally qualifi ed individuals (experienced
nephrology nurses or counselors). Most of
the networks utilize social workers for the
position, who are responsible for addressing
challenging patient situations. This practice
creates a strong social work perspective in
the network system and allows facility social
workers to serve as contacts for assistance.
Network organizations are viewed by many
as resources far beyond regulatory concerns.
A challenging patient is defi ned as
an individual who is nonadherent to the
treatment regimen and can be verbally
abusive, physically threatening, or physically
violent. In some instances, staff response
is not appropriate and exacerbates the
situation. All PSCs, regardless of discipline,
assume a proactive role in the prevention,
facilitation, and resolution of diffi cult patient
and facility situations. This role may include
implementing educational programs that
will assist facility staff in handling diffi cult
situations and advocating for individual
patient rights and rights of all patients at a
facility, depending on the situation presented.
Although regional differences due to
geography, cultural concerns, and density
of population create network-specifi c PSC
tasks, the overall purpose is the same. Some
of these tasks include visits to facilities to
meet with patients, staff, and administrators
for the purposes of patient education, staff
training, and responding to grievances;
attending regional conferences as a participant
or presenter; and creating network-wide
patient newsletters. Some networks have a
patient advisory committee (PAC) consisting
of patients who volunteer their time to help
improve the quality of care in their facilities.
The network PSC usually coordinates the PAC.
Most PSCs process grievances at the
network level and seek resolution through
interactions with the facility or follow
through with appropriate agency referrals
while maintaining a database that is
used to track trends. Network vocational
rehabilitation efforts to assist facilities
to encourage patients to return to work
are under the purview of most PSCs, as
are efforts to encourage patient exercise
programs. Some PSCs communicate
network policies, concerns, and goals to
other professional organizations, such as the
NKF, Kidney and Urology Foundation of
America, American Kidney Fund, American
Association of Kidney Patients, Society for
Social Work Leadership in Health Care,
and the national and local Councils of
Nephrology Social Workers.
In this environment, PSCs respond to
patient needs with an expanded view of
quality of care, embracing psychosocial as
well as medical concerns. The social work
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Nephrology Social Work 487
workers in his survey were responsible for
making dialysis transient arrangements (which
involved copying and sending patient records to
out-of-town units) yet only 20% were able to do
patient education. The 2002 report of Promoting
Excellence in End-of-Life Care recommends
that dialysis units discontinue using master’s-
level social workers for clerical tasks to ensure
that they will have suffi cient time to provide
clinical services to their patients and their
families. The 2005 Department of Health and
Human Services’ proposed conditions for cov-
erage of ESRD facilities recognize this issue:
[W]e recognize that dialysis patients also need
other essential services including transporta-
tion and information on Medicare benefi ts,
eligibility for Medicaid, housing, and medi-
cations, but these tasks should be handled by
other facility staff in order for the MSW to par-
ticipate fully with the patient’s interdisciplinary
teams so that optimal outcomes of care may be
achieved. (Federal Register, 2005, p. 6222)
Merighi and Ehlebracht (2004a,b, 2005),
in a survey of 809 randomly sampled dialysis
social workers in the United States, found that:
• 94% of social workers did clerical tasks and
87% of those respondents considered these
tasks to be outside the scope of their social
work training.
• 61% of social workers were solely
responsible for arranging patient transpor-
tation.
• 57% of social workers were responsible
for making travel arrangements for pa-
tients who were transient, taking 9% of
their time.
• 26% of social workers were responsible for
initial insurance verifi cation.
• 43% of social workers tracked Medicare
coordination periods.
• 44% of social workers were primar-
ily responsible for completing admission
packets.
• 18% of social workers were involved in
collecting fees from patients. Respondents
noted that this could signifi cantly dimin-
ish therapeutic relationships and decrease
trust.
• Respondents spent 38% of their time on
insurance, billing, and clerical tasks versus
25% of their time on counseling and assess-
ing patients.
• Only 34% of the social workers thought
that they had enough time to suffi ciently
address patient psychosocial needs.
The study also noted that as nephrology
social workers increased their involvement
in insurance and billing, their job satisfaction
decreased. This was true particularly for so-
cial workers who collected fees from patients.
Nephrology social work job satisfaction was
correlated positively with the amount of time
spent in counseling and patient education and
negatively with insurance-related, clerical
tasks. Nephrology social workers who spent
perspective has enhanced the awareness
of patient needs in national discussions on
quality-of-care issues for renal patients. These
discussions have had impact in meetings with
CMS offi cials and in developing network
policies that support patient health and
address quality of life concerns.
ESRD Network resources and newsletters
can be accessed through its Web sites. Links
to all networks can be found at the Forum of
ESRD Networks Web site, http://www.esrd
networks.org. In addition, publications by
Network PSCs (E. Anderson, R. Bachelder,
B. K. Campbell, R. Bova-Collis, B. Dyson,
L. Hall, M. Meir, K. Niccum, M. L. Peder-
son, D. Perez, R. Russo, K. Thompson, R.
Valdez, among others) have added to social
work literature, as well as that of other disci-
plines, via numerous articles in nephrology
publications and journals.
Source: Prepared by Rick Russo, MSW, LSW, Media,
PA.
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http://www.esrdnetworks.org
http://www.esrdnetworks.org
488 Health Social Work: Selected Areas of Practice
more time on insurance, billing, and clerical
activities reported increased emotional ex-
haustion. Those who spent more time doing
counseling and patient education reported less
emotional exhaustion. The authors posited
that providing education and direct counsel-
ing to patients and family members were more
congruent with the professional training and
education of master’s-level social workers and
thus more satisfying for them.
Another professional concern for nephrol-
ogy social workers is high patient caseloads.
The Council of Nephrology Social Workers
(CNSW) conducted an anonymous online
salary and caseload survey of nephrology so-
cial workers from March 31 to June 21, 2010
(Merighi, Browne, & Bruder, in press). This
survey (n = 1,037) indicates that full-time dialy-
sis social workers have caseloads ranging from
1 and 711 patients (median 125). Transplant
social workers can be responsible for hundreds
of patients and organ donors. Large nephrol-
ogy social work caseloads have been linked to
decreased patient satisfaction and less success-
ful patient rehabilitation outcomes (Callahan,
Moncrief, Wittman, & Maceda, 1998). Social
workers report that high caseloads prevent them
from providing adequate nephrology clinical
services, most notably counseling (Merighi, &
Ehlebracht, 2002, 2005).
The CNSW (2002) recommends an acuity-
based social worker-to-patient ratio that takes
into consideration the psychosocial risks of pa-
tients and recommends a maximum of 75 pa-
tients per full-time dialysis social worker. The
state of Texas mandates a load of 75 to 100
patients per full-time social worker. Nevada
likewise has a mandated ratio of 1 full-time
social worker per 100 dialysis patients. How-
ever, Merighi and Ehlebracht’s (2004c) na-
tional survey of social workers found that only
13% of full-time dialysis social workers had
caseloads of 75 or fewer, 40% had caseloads
of 76 to 100 patients, and 47% had caseloads
of more than 100 patients.
As of 2010, no nephrology social work
ratios had been mandated by federal authori-
ties. However, the 2008 Medicare Conditions
for Coverage for dialysis units do indicate that
every dialysis unit needs to make sure that all
professionals have caseloads that allow them
to fulfi ll their duties (Federal Register, 2008).
Specifi cally, condition 494.180 states:
An adequate number of qualifi ed personnel
are present whenever patients are undergo-
ing dialysis so that the patient/staff ratio
is appropriate to the level of dialysis care
given and meets the needs of patients; and
the registered nurse, social worker, and di-
etitian members of the interdisciplinary team
are available to meet patient clinical needs.
(p. 20483)
Nephrology social workers have reported
that large caseloads hindered their ability to
provide clinical interventions (Bogatz, Colas-
anto, & Sweeney, 2005). Social work respon-
dents in this study reported caseloads as high
as 170 patients; 72% had a median caseload of
125 patients. The researchers found that 68%
of social workers did not have enough time to
do casework or counseling; 62% did not have
enough time to do patient education; and 36%
said that they spent excessive time doing cleri-
cal, insurance, and billing tasks. One partici-
pant in their study stated: “The combination
of a more complex caseload and greater num-
ber of patients to cover make it impossible to
adhere to the federal guidelines as written. I
believe our patients are being denied access to
quality social work services” (p. 59).
COUNCIL OF NEPHROLOGY
SOCIAL WORKERS
The CNSW, a professional council affi liated
with the NKF, is the largest organization of
nephrology social workers in the world. The
organization’s goals are to: (1) develop and
promote patient and public education; (2) sup-
port and promote the profession and education
of renal social work; (3) impact regulatory
and legislative issues; (4) ensure that quali-
fi ed social workers are employed in ESRD
settings; and (5) provide ongoing support and
education to renal patients. In 2010, more than
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Nephrology Social Work 489
900 members belonged to the organization,
the majority of whom were from the United
States. More than 55 local CNSW chapters
are located around the country, all of which
are overseen by the national organization. Ne-
phrology social workers may belong to other
professional organizations, including:
• The Society for Transplant Social Workers,
which was founded in 1986 and is active in
the United States and Canada
• The European Dialysis and Transplant
Nurses Association, which has a social
work component
• The Kidney Foundation of Canada,
which includes a nephrology social work
organization
The CNSW became a national entity and
an advisory board to the NKF in April 1973.
Prior to this time, nephrology social workers
had met regionally to discuss common is-
sues and concerns. Early CNSW activities in-
cluded providing input on the ESRD federal
regulations and lobbying for the inclusion of
master’s-level social workers on renal teams.
Since then, CNSW has developed a number
of professional resources, including an an-
nual training program for nephrology so-
cial workers, as well as publications such as
“Standards of Practice for Nephrology Social
Work” and “Continuous Quality Improvement
for Nephrology Social Workers.” When the
Medicare Conditions for Coverage of dialy-
sis and transplant facilities were being revised
in 2005, a CNSW-directed initiative resulted
in social workers being the profession that
commented most frequently on the proposed
conditions, which set policy and practice in
all ESRD facilities. The CNSW partners with
the other NKF professional councils, such as
the Council of Renal Nutrition, Council of
Advanced Practitioners, and Council of Ne-
phrology Nurses and Technicians, on various
projects and to publish a quarterly professional
newsletter. Since 1981, the CNSW has pro-
vided funding for research projects initiated
by nephrology social workers.
Addressing the professional challenges dis-
cussed here and providing outcomes-oriented
nephrology social work care is a major em-
phasis of CNSW. In 1995, CNSW collabo-
rated with the NASW to create the “NASW/
CNSW Clinical Indicators for Social Work
and Psychosocial Services in Nephrology Set-
tings,” a set of guidelines for measuring social
work outcomes. CNSW also has a series of
18 training sessions entitled “Refocusing Ne-
phrology Social Work: An Outcomes Training
Program,” which consist of live presentations,
regional continuing education trainings via
videotape, and Internet-based professional
education programs on these topics:
• “Assessment of Cultural Barriers and
Design for Effective Care Plans”
• “Assessment and Management of the
Patient with Altered Mental Status”
• “Conducting a Comprehensive Clinical
Assessment”
• “Conducting Interventions to Improve
Adherence”
• “Continuous Quality Improvement”
• “Delivering, Scoring, and Interpreting Bio-
psychosocial Instruments to Enhance As-
sessment, Monitor Treatment Outcomes,
and Guide Continuing Interventions”
• “Developing Individualized Plans for Reha-
bilitation”
• “End-of-Life Issues”
• “Providing Case Management Services”
• “Facilitating Support, Psychoeducational,
and Brief Therapy Groups”
• “Interdisciplinary Team Collaboration and
Teaching”
• “Marital and Family Counseling to En-
hance Patient Adaptation to Illness”
• “Patient Education”
• “Providing Protective Services”
• “Treating Depression”
• “Understanding and Assessing for Depres-
sion in the ESRD Patient”
• “Understanding Psychosocial Predictors of
Treatment Outcome”
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490 Health Social Work: Selected Areas of Practice
A major CNSW emphasis is legislative
advocacy. CNSW is an active member of
the National Consortium of Health Care So-
cial Work Organizations and works with the
NKF to lobby for improvement in health in-
surance coverage for ESRD patients as well
as to extend Medicare coverage for trans-
plant recipients to include immunosuppres-
sive medications. Another focus of CNSW
is professional advocacy; the organization
has created a number of documents to clarify
the role of a nephrology social worker. The
council has four very active e-mail listservs,
one each for general membership, regional
chapter chairpersons, kidney transplant social
workers, and pediatric social workers. These
Internet resources allow members quick ac-
cess to their colleagues.
In October 2008, Medicare enacted the fi rst
update to the conditions of coverage for trans-
plant and dialysis facilities in 30 years. These
regulations specify the care provided in all
ESRD facilities in the United States and its ter-
ritories, and are used by state and federal sur-
veyors to determine if facilities are performing
adequately. The CNSW organized its members
to provide a response to these conditions, ad-
vocating for attention to ESRD psychosocial
issues and appropriate utilization of MSWs on
renal teams.
CONCLUSION
ESRD is a signifi cant public health concern
with serious biopsychosocial ramifi cations.
Nephrology social work interventions have
demonstrated effectiveness in addressing
the psychosocial barriers to optimal ESRD
patient care. Nephrology social workers
practice in all types of settings and levels of
practice and work with patients of all ages
and backgrounds. This chapter presents in-
formation that can guide social work practice
in nephrology as well as inform all health
social workers about ESRD and its psycho-
social issues.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 18.1
Increasingly, kidney transplant patients are
older (over 65 years) or have chronic illnesses
such as human immunodefi ciency virus (HIV)
and hepatitis. In the United States, there is a
signifi cant shortage of organs for patients on
the kidney transplant waiting list. Because of
this, in some areas of the country, patients wait
as long as 8 years to receive a deceased donor
kidney transplant. Recently there has been a de-
bate about changing the allocation system for
kidney transplants. Historically, children have
been given preference for organs, followed by
perfect antigen matches (i.e. if a donated kid-
ney perfectly matches the antigens of someone
on the transplant waiting list, that person usu-
ally will get the kidney), and length of time
someone has been on the list (i.e., the longer
you are on the list, the more likely you are to
receive a transplant). The proposed new kidney
allocation policy would emphasize “life years
from transplant” and prioritize the distribu-
tion of deceased donor kidneys to those on the
waiting list who would be most likely to live
the longest after a kidney transplant. Propo-
nents of this new allocation system argue that
because deceased donor kidneys are in short
supply, changes to the system are necessary
in order to maximize utility from this scarce
commodity. Opponents of this system argue
that this new procedure would disadvantage
older patients or patients with comorbid ill-
nesses and in effect prohibit such patients from
timely transplantation. Through small or large
group discussion (or a written assignment),
have students discuss or debate these questions
(refer to Chapter 3 for more information about
ethics; also see http://optn.transplant.hrsa.gov
/kars.asp for more information about the kid-
ney transplant allocation proposal):
1. What do you think about a 75-year-old pa-
tient, or a patient with HIV or hepatitis, re-
ceiving a kidney transplant from a deceased
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http://optn.transplant.hrsa.gov/kars.asp
http://optn.transplant.hrsa.gov/kars.asp
Nephrology Social Work 491
donor? How does the fact that there are
thousands of people (many of whom are
younger or less ill) waiting for a kidney
transplant infl uence your decision?
2. What do you think about the new proposal
for kidney allocation that would emphasize
“life years from transplant”? What social
work ethical considerations should be taken
into account when thinking about this?
3. If you agree with the new proposal and
think that life years from transplant should
be the primary consideration when allo-
cating kidneys for transplant, how would
you explain this new system to a healthy
70-year-old patient or to a 30-year-old pa-
tient with hepatitis or HIV who is interested
in a kidney transplant?
Learning Exercise 18.2
Healthy People 2020 is a set of health objec-
tives for the United States that relates to many
different health areas, including kidney dis-
ease (U.S. Department of Health and Human
Services, 2000; see Chapter 4 for more in-
formation). Have group members investigate
Healthy People 2020 and report back to the
group on (or write a paper addressing) these
questions:
1. What is Healthy People 2020?
2. What recommendations for kidney disease
patients are included in Healthy People
2020? (Students can fi nd this information
at http://www.healthypeople.gov)
3. What are at least fi ve ways that so-
cial workers can help the United States
achieve the kidney disease objectives in
Healthy People 2020? Be sure to include
individual- and family-level roles with
policy-level roles for social workers in this
discussion.
Learning Exercise 18.3
Divide the students into six groups. Within
these groups, half of the group will take
Case Example 18.1
Joseph is a 52-year-old White American
male with hypertension who just started
dialysis. He did not know that his kidneys
were failing and was shocked to be admitted
to the hospital with ESRD after going to the
emergency room because he was short of
breath. Before that, he had not been to see
a doctor for over 10 years. After spending
a week in the hospital, he started dialysis
at an outpatient hemodialysis clinic three
times per week. He is newly married, and
had been working full time as a construction
worker. He is concerned about how the
dialysis schedule will work around his job
duties, and is also very upset that he may
not even be able to return to his physically
demanding job because he is so weak. He
does not know about the different treatment
options for kidney failure and tells you that
he is afraid he is going to die.
Case Example 18.2
Rita is a 32-year-old Hispanic female who
has been on dialysis for 6 months in a busy
urban area. She is interested in a kidney
transplant and went to the hospital for an
evaluation by the transplant social worker.
Her family already has been tested as pos-
sible living donors for the transplant; as no
one is a good blood match, she must go on
the transplant waiting list for a deceased
donor kidney. She is concerned about the
waiting time for a kidney, as some of her
friends from the dialysis clinic have been
waiting for a kidney for more than six years.
Her dialysis unit reported to the transplant
clinic that Rita has not adhered completely
to her dialysis regime, as she does not al-
ways stay for her recommended treatment
time or may miss treatments altogether.
This concerns the unit staff, who are unsure
whether Rita would take all of her im-
munosuppressant medications if she got a
transplant, which would put her at risk for
rejecting a transplanted kidney.
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http://www.healthypeople.gov
492 Health Social Work: Selected Areas of Practice
the role of a nephrology social worker and
complete a social work assessment of the other
half of the group (who will role-play one of the
patient scenarios in case examples 18.1–18.3,
improvising details as they wish). Each group
will report back to the class about the unique
psychosocial issues identifi ed in the role-play.
If time allows, the groups can create an inter-
vention plan for the hypothetical patient.
SUGGESTED RESOURCES
Nephrology Social Work
Canadian Association of Nephrology So-
cial Workers—www.cansw.org
National Kidney Foundation—www.kidney
.org/professionals/CNSW/index.cfm
Society for Transplant Social Workers—
www.transplantsocialworker.org/
Kidney Disease, Psychosocial Issues, and
Treatment Options
American Association of Kidney Patients—
www.aakp.org
American Kidney Fund—www.akfi nc.org
American Society of Nephrology—www
.asn-online.org
American Society of Pediatric Nephrology
—www.aspneph.com
American Society of Transplant Surgeons
—www.asts.org
Centers for Medicare and Medicaid Services
www.cms.gov/
Dialysis from the sharp end of the needle
(Patient-created Web site about kidney
disease—www.billpeckham.com/from
_the_sharp_end_of_the)
Healthy People 2020—www.healthypeople
.gov
Home Dialysis Central—www.homedialysis
.org
Institute on Rehabilitation Issues—www
.rcep6.org/IRI_PublicaNational
Kidney and Urology Foundation of America
—www.kidneyurology.org
Kidney Directions: For Research in
Polycystic Kidney Disease—www
.kidneydirections.com
Case Example 18.3
John is a 42-year-old African American male
who came to the transplant center for a so-
cial work assessment from the living donor
advocate, in preparation for donating a kid-
ney to his sister Monique, who has been on
dialysis for a year. Monique has three small
children and has had many hospitalizations
since starting dialysis. Of all his siblings,
family, and parents, Joe is the only person
who matches Monique for a kidney dona-
tion. The family reports that this match is
a “miracle.” John is very ambivalent about
transplantation, however, because he is con-
cerned about missing work due to the kidney
donation workup, surgery, and recovery
period. He has never been very close to Mo-
nique and feels pressured by his family to
donate his kidney to his sister.
Case Example 18.4
Mary is a 20-year-old single White Ameri-
can female dialysis patient. She receives
hemodialysis at an outpatient clinic three
times a week. She started dialysis 2 years
ago after the failure of a transplant she
received at the age of 14. The dialysis-unit
team is very fond of Mary. She has been on
the deceased donor waiting list for another
kidney transplant and has no family mem-
bers who are able to donate a kidney to her.
(Her kidney failure is due to a genetically
inherited disease, which precludes fam-
ily members from donating a kidney.) In
Mary’s city, the wait for a kidney transplant
is about six years. Inspired by a television
news story about a grocery store clerk who
donated a kidney to one of his customers,
Mary has been asking the dialysis team
members if they would donate a kidney to
her. One of the patient care technicians,
Kim, is interested in donating a kidney to
Mary. After role-playing an assessment
with Mary, discuss the ethical issues that
may be related to Kim donating a kidney
to Mary.
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http://www.kidney.org/professionals/CNSW/index.cfm
http://www.transplantsocialworker.org
http://www.akfinc.org
http://www.aspneph.com
http://www.asts.org
http://www.cms.gov
http://www.billpeckham.com/from_the_sharp_end_of_the
http://www.healthypeople.gov
http://www.homedialysis.org
http://www.kidney.org/professionals/CNSW/index.cfm
http://www.asn-online.org
http://www.asn-online.org
http://www.billpeckham.com/from_the_sharp_end_of_the
http://www.healthypeople.gov
http://www.homedialysis.org
http://www.rcep6.org/IRI_PublicaNational
http://www.rcep6.org/IRI_PublicaNational
http://www.kidneydirections.com
http://www.kidneydirections.com
Nephrology Social Work 493
KDQOL Complete—www.kdqol-complete
.org
Resource to help administer and score
KDQOL assessments.
Kidney Disease Quality of Life (KDQOL)
Working Group—http://gim.med.ucla
.edu/kdqol/
Kidney School—www.kidneyschool.org
Life Options—www.lifeoptions.org
National Institute of Diabetes and Digestive
and Kidney Diseases—www.niddk.nih
.gov
National Kidney Disease Education
Program —www.nkdep.nih.gov/
National Kidney Foundation—www
.kidney.org
Nephron Information Center—www
.nephron.com
NephrOnline—www.nephronline.com
NephroWorld: The Whole World of Ne-
phrology—www.nephroworld.com
PKD Foundation: For Research in Polycys-
tic Kidney Disease—www.pkdcure.org
/home.html
Promoting Excellence in End of Life
Care—www.promotingexcellence.org
RenalWeb: Vortex Web Site of the Dialysis
World—www.renalweb.com
United Network of Organ Sharing—www
.unos.org
United States Renal Data System—www
.usrds.org
International Nephrology
European Dialysis and Transplant Society—
www.era-edta.org/
International Society for Hemodialysis—
www.ishd.net
International Society of Nephrology—
www.isn-online.org
International Society of Peritoneal
Dialysis—www.ispd.org
Kidney Foundation of Canada—www
.kidney.ca
Kidney Health Australia—www.kidney
.org.au
National Kidney Research Fund—www
.nkrf.org.uk
U.K. National Kidney Federation—www
.kidney.org.uk
World Kidney Fund—www.worldkidneyfund
.org
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19
Oncology Social Work
DANIEL S. GARDNER AND ALLISON WERNER-LIN
Oncology social work is a specialization in
social work that addresses the psychosocial
responses and needs of individuals and fami-
lies affected by cancer. Emerging from a long
tradition of social work in health care, the
subspecialty of oncology social work fl our-
ished in the 20th century as biomedical ad-
vances transformed cancer from a terminal
to a chronic disease. The conceptual founda-
tions of oncology social work are found in a
number of disciplines, including psychosocial
oncology, an area of clinical practice and re-
search that addresses the psychological, social,
behavioral, spiritual, and other dynamics of
cancer among individuals, families, and com-
munities. Through multisystemic and holistic
practice, research, education, and advocacy,
social workers are integral to adding to the
knowledge base of cancer and the provision
of comprehensive care to people with and af-
fected by cancer. This chapter will introduce
readers to the foundations of oncology social
work and to social work’s unique contributions
to comprehensive and integrated cancer care.
Chapter Objectives
• Provide an introduction of cancer epidemi-
ology, treatment, and the psychosocial, be-
havioral, and spiritual impact of the disease
on individuals and families.
• Describe the history, conceptual founda-
tions, and functions of oncology social
work in general, and the fi eld of psychoso-
cial oncology.
• Describe the contributions of social work to
oncology research.
• Defi ne the scope of practice knowledge,
skills, and interventions that oncology
social workers use to assess and ameliorate
psychosocial and quality of life concerns.
• Address emerging issues in psychosocial
oncology including cancer survivorship,
family decision making, genetic testing,
and end-of-life care.
• Present selected resources available for
patient education and support, and profes-
sional development.
CANCER EPIDEMIOLOGY
Over an average American life span, 44% of
men and 38% of women will develop some
form of cancer during their lifetimes, and an es-
timated 1.5 million new cases will be diagnosed
this year alone (Altekruse et al., 2010). Cancer
is an umbrella term for hundreds of diseases
characterized by uncontrollable growth of ab-
normal cells in the body. Oncologists classify
the diseases according to the type of cell or the
organ in which the cancer originated. Although
incidence rates vary by gender, race, and eth-
nicity, non-Hodgkin’s lymphoma and mela-
noma, in addition to cancers of the prostate,
breast, lung, colon and rectum, uterus, bladder
and kidney, and ovary, are the most common
cancers in men and women of all races (Altek-
ruse et al., 2010; see Tables 19.1 and 19.2).
Cancer typically begins with damage to
genetic material that leads to the growth of
abnormal cells, at times because of the failure
to repair mutations. These cells act in a dis-
organized manner, divide more rapidly than
healthy cells, and lack the requisite program-
ming to complete their genetically assigned
functions. Cancer cells form tumors (also
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Oncology Social Work 499
Table 19.1 Leading Cancer Sites for Females by Site, Race
Cancer Site
U.S.
Prevalence
2007 (SEER)
Estimated
New Cases,
2010 (ACS)
U.S.
Prevalence,
White
U.S.
Prevalence,
Black
U.S.
Prevalence,
Hispanic
U.S.
Prevalence,
Asian
ALL SITES 6,360,682 739,940 5,614,748 479,368 268,580 133,712
Breast (female) 2,591,855 207,090 2,296,698 201,276 102,436 58,562
Uterine corpus 575,108 43,470 523,613 26,175 19,390 10,533
Colon & Rectum 571,857 70,480 489,901 58,546 21,186 14,223
Melanoma 408,229 26,260 391,407 1,605 6,063 750
Non-Hodgkin
Lymphoma 211,470 30,160 188,249 15,490 10,719 4,382
Lung & Bronchus 197,878 105,770 172,551 17,957 4,795 4,049
Ovary 177,162 21,880 156,821 12,072 8,061 8,061
Kidney 116,651 22,870 102,098 13,778 7,288 1,816
Thyroid 100,521 338,026 298,625 19,155 21,041 10,761
Pancreas 16,939 21,770 13,718 2,330 1,082 589
Source: Adapted from SEER Cancer Statistics Review, 1975–2007, edited by S. Altekruse et al., 2008. Bethesda, MD:
National Cancer Institute.
Table 19.2 Leading Cancer Sites for Males by Site, Race
Cancer Site
U.S.
Prevalence
2007 (SEER)
Estimated
New Cases,
2010 (ACS)
U.S.
Prevalence,
White
U.S.
Prevalence,
Black
U.S.
Prevalence,
Hispanic
U.S.
Prevalence,
Asian
ALL SITES 5,353,054 789,620 4,688,195 462,999 233,031 94,285
Prostate 2,276,112 217,730 1,923,891 273,813 99,902 35,457
Colon & Rectum 540,636 72,090 472,191 43,302 23,519 15,315
Urinary Bladder 395,480 52,760 370,034 12,835 9,507 4,559
Melanoma 385,054 38,870 371,219 1,083 3,723 595
Non-Hodgkin
Lymphoma 226,855 35,380 203,436 15,559 11,662 4,732
Lung & bronchus 172,739 116,750 145,246 17,728 4,879 4,504
Kidney 164,839 35,370 144,338 15,097 9,831 2,881
Oral cavity &
Pharnyx 161,112 25,420 141,976 10,436 5,218 4,324
Leukemia 137,398 24,690 122,770 7,877 10,181 2,685
Pancreas 16,057 21,370 14,093 1,291 451 840
Source: Adapted from SEER Cancer Statistics Review, 1975–2007, edited by S. Altekruse et al., 2008. Bethesda, MD:
National Cancer Institute.
known as malignancies) that spread via the
blood or lymphatic system in a process called
metastasis, invading and destroying healthy
tissue. If the growth of invasive cells continues
unabated, the affected areas cease to function
(Eyre, Lange, & Morris, 2001). In fast-growing
or aggressive cancers, this process often leads
to death. In many cancers, however, tumor
growth is slow, and the disease can be stopped
or controlled with medical treatment.
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500 Health Social Work: Selected Areas of Practice
Malignant cell types present, behave, and
are treated differently, so accurate diagnosis
of type is critical. Diagnosis can involve care-
ful examination, blood tests, scans, or surgi-
cal biopsy, after which the cancer generally is
classifi ed as one of fi ve types. Carcinoma, a
term sometimes used to describe all cancers,
specifi cally refers to malignancies that origi-
nate in the epithelial linings of organs such as
the skin, lung, breast, liver, colon, or prostate.
Sarcomas affect bones, cartilage, muscle, or
connective tissues. Adenomas begin in the ad-
renal, pituitary, and hormonal glands. Lympho-
mas are cancers of the lymphatic system and
affect the organs affi liated with the immune
system. Leukemias are blood cancers that arise
in the bone marrow where stem cells mature
and travel through the bloodstream. Some can-
cers, such as melanomas and small-cell lung
carcinomas, do not fi t into any of these broad
categories (Beers, Porter, Jones, Kaplan, &
Berkwits, 2006).
Etiology and Mortality
Cancers are caused by multiple mechanisms
and operate along a variety of pathways, in-
cluding interactions among genetic, envi-
ronmental, or behavioral processes. Some
malignancies are caused by genetic damage
or mutations that occur randomly or spo-
radically, and others are due to hereditary
mutations that are passed from generation
to generation. Other cancers are strongly as-
sociated with age, gender, ethnicity, race,
or ancestry. Environmental infl uences (e.g.,
exposure to toxic chemicals, air pollutants,
viruses, or sunlight and ultraviolet rays), be-
havioral patterns (such as the use of alcohol
or tobacco, obesity and dietary habits, sexual
and reproductive behaviors), and social cir-
cumstances (e.g., poverty, racial disparities in
treatment, or the lack of access to adequate
housing and nutrition, clean air, education,
and health-care and preventive screening) also
can contribute to cancer expression, treatment
response, and mortality (Ghafoor et al., 2003;
McGinnis, Williams-Russo, & Knickerman,
2002; Shavers & Brown, 2002).
Approximately 570,000 Americans die
each year from cancer, representing nearly
25% of all deaths (American Cancer Society
[ACS], 2010a). Because of prevention efforts,
improved early screening, and treatment ad-
vances, mortality rates from cancer overall
have decreased since the 1990s (Altekruse
et al., 2010; Edwards et al., 2009). Although
survival rates vary by cell type and stage at
diagnosis, fewer than half of all people diag-
nosed with cancer will die from the disease
(Eyre et al., 2001). Despite these trends, in-
cidence and mortality rates demonstrate sig-
nifi cant health disparities based on gender,
age, race/ethnicity, ancestry, geography, and
socioeconomic status (SES). According to the
Centers for Disease Control and Prevention
(CDC, 2010), while different cancers affect
men and women at different rates, men are at
an overall greater risk than women for devel-
oping the disease. Incidence for all cancers
combined is signifi cantly higher for African
American men than for men of other races/eth-
nicities, and cancer mortality is higher for Af-
rican American men and women than for other
men and women. In general, lower SES puts
people at increased risk for developing cancer
(Ghafoor et al., 2003), and older adults are 10
times more likely to develop cancer than those
younger than 65 years (Altekruse et al., 2010).
Although well documented, the causes of
health disparities in cancer and other chronic
diseases are not fully understood and likely
refl ect complex interactions among biological,
social, and behavioral factors, including ge-
netic differences, exposure to environmental
toxins, and lack of access to good nutrition,
preventive screening, and health insurance
(Link & Phelan, 1995; Williams, 1997). Fac-
tors such as bias among health-care providers
and skepticism about mainstream medicine
among some individuals and lack of access to
primary and preventive care services have in-
creased cancer risks for vulnerable communi-
ties and marginalized populations (Shavers &
Brown, 2002). African American women, for
example, are less likely to have breast cancer
than White women but are signifi cantly more
likely to die from the disease (Chu et al., 1997;
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Oncology Social Work 501
Dignam, 2000). Gehlert and colleagues (2008)
propose a “downstream” model of disease
that links structural and environmental vari-
ables (e.g., poverty, poor nutrition, exposure
to crime, and substandard housing) with so-
cial isolation, depression, and stress-hormone
reactions, creating pathways to illness and
higher mortality among lower socioeconomic
and racial/ethnic communities.
Cancer Treatment
A variety of conventional and experimen-
tal treatments are designed to eliminate or
shrink tumors and to prevent the spread or
recurrence of cancer. Oncologists base treat-
ment decisions primarily on the type and the
invasiveness of the disease, or its stage of de-
velopment (see Box 19.1). Other important
considerations include the effectiveness of a
particular treatment option; the overall health
of the individual; the short- and long-term side
effects of treatments, which may vary across
groups; and fi nancial considerations, such as
insurance coverage (Eyre et al., 2001). Physi-
cians generally discuss treatment alternatives
with the patient, who then makes decisions
in consultation with health-care professionals
and family members. Treatment may include
some combination of surgery, chemotherapy,
and radiation.
Surgery is used for prevention, diagnosis,
and treatment of cancer. Surgical biopsies
provide visual confi rmation of tumor size and
extent of spread and obtain tissue for analy-
sis of cell type and disease stage. When the
Box 19.1 Cancer Staging
Staging is the process of determining the se-
verity and invasiveness of disease to inform
treatment decisions, determine prognosis,
identify clinical trials that might be appropri-
ate, and facilitate communication between
providers. Commonly, staging integrates infor-
mation about the location and size of primary
tumor(s), whether the cancer has spread into
the surrounding lymph nodes, and whether
cancer cells have invaded other organs.
Because criteria for stages vary by can-
cer type, the American Joint Committee on
Cancer developed the TNM classifi cation
system to provide common language. T
describes the size (in millimeters or centi-
meters) or extent of the original tumor; N
indicates whether cells have traveled to the
surrounding lymph nodes, and M indicates
the presence of metastases. Each criterion
has grades to indicate the degree of
severity.
Generally, however, cancer staging is dis-
cussed differently with patients and families.
This staging system is shown next.
Staging Type Description
Stage 0 in situ Abnormal cells are contained to the primary organ. Generally, Stage 0 cancers
are curable.
Stage 1 localized Cancer is limited to the organ in which it began, without evidence of spread.
Stages 2–3 regional Cancer is locally advanced, may have spread to local lymph nodes.
Stage 4 distant Cancer has spread from the primary site to distant organs or distant lymph
nodes. Generally, Stage 4 cancers are referred to as metastatic and may be
inoperable.
recurrent Disease that recurs either in the area of the primary tumor (locally recurrent)
or as metastasis (distant recurrence).
Source: From www.cancer.gov/cancertopics/factsheet/Detection/staging and www.cancerstaging.org/mission/whatis
.html
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http://www.cancer.gov/cancertopics/factsheet/Detection/staging
http://www.cancerstaging.org/mission/whatis.html
http://www.cancerstaging.org/mission/whatis.html
502 Health Social Work: Selected Areas of Practice
cancer is contained or easily removed, surgery
remains the most effective treatment. Surgery
frequently is used in combination with other
treatment modalities, including radiation, che-
motherapy, and/or hormonal therapy. Radia-
tion therapy uses ionizing radiation to destroy
or minimize malignancies and is used to target
precisely and reach cancer cells and tumors
that often are diffi cult to reach. Used success-
fully in curative and palliative treatment, ra-
diation treatment can be prescribed alone or as
an adjuvant treatment to surgery or chemother-
apy. Radiation often requires daily treatments
that last for many weeks. It is time consuming
and fatiguing and can result in localized skin
reactions, hair loss, or internal scarring in the
areas of the body that are treated (Eyre et al.,
2001; Weinberg, 2006).
In contrast to more localized treatment,
chemotherapy, a broad term describing hun-
dreds of medications that attack cancer cells
throughout the body, often affects healthy
organs and functions during treatment. Like
radiation therapy, chemotherapy can be used
for curative or palliative purposes, and is
used alone or as an adjuvant to other treat-
ments, depending on cancer type and staging.
Chemotherapy uses specifi c combinations of
cancer-fi ghting agents, provided via a range
of methods (e.g., transfusions, injections, oral
medications), schedules, and dosages, to maxi-
mize the effects of treatment while minimiz-
ing the impact on healthy organs (Beers et al.,
2006). Although chemotherapy plays a large
role in reducing mortality among cancer pa-
tients, its physical side effects can be severe
and cause great anxiety. A nonexhaustive list
includes nausea and vomiting, suppression of
immune systems, hair loss, mouth sores, fa-
tigue, and decreased libido (Weinberg, 2006).
Experimental approaches to treating cancer
may be offered to people with cancers that do
not respond well to conventional treatments
and to those experiencing metastatic growth
or recurrences (Eyre et al., 2001). Patients can
try new treatments by participating in clini-
cal trials that test the effectiveness of newly
developed protocols. Access to clinical trials
often is limited because of strict exclusion and
inclusion criteria for protocols, meaning that
not everyone who might be helped by an ex-
perimental treatment will qualify. Rural resi-
dents who live a distance from comprehensive
cancer centers are less likely to have the oppor-
tunity to use experimental approaches. Clini-
cal trials generally are performed at a handful
of research and teaching hospitals, and travel
requirements may be prohibitive for people
with fi nancial or instrumental constraints. Psy-
chosocial and structural barriers such as these
frequently prevent ethnic and racial minorities
from participating in clinical trials (Wells &
Zebrack, 2008). Experimental treatments often
are tested against placebo or Food and Drug
Administration–approved protocols in double-
blind tests.
Many people with cancer supplement their
conventional treatments with complementary
or alternative therapies. An estimated 53% to
68% of all adults in the United States have re-
ported using prayer or spiritual practices, natu-
ropathic supplements, breathing and relaxation
exercises, yoga, and chiropractic to enhance
their health (Richardson et al., 2000; Tilden,
Drach & Tolle, 2004). The use of less conven-
tional remedies to complement treatment has
risen steadily in recent years, and the National
Center for Complementary and Alternative
Medicine at the National Institutes for Health
anticipates that the trend will continue as the
baby boom generation ages (Kessler et al.,
2001). See Chapter 12 in this volume for more
discussion of complementary and alternative
treatments.
BRIEF HISTORY OF
PSYCHOSOCIAL ONCOLOGY
Fight Against a Devastating Disease
Although cancer has affected individuals for
much of recorded history, prior to the 20th
century, a defi nitive diagnosis was diffi cult to
make, and the disease was nearly always fatal
(Mukherjee, 2010). People diagnosed with
cancer often experienced uncontrolled pain,
incapacitation, disfi gurement, foul-smelling
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Oncology Social Work 503
tumors, social isolation, and loss of self-
esteem (Holland, 1998). Because little was
known about the disease or its etiology, cancer
engendered fears of contagion and stigmatiza-
tion (Sontag, 2001; Waskul & van der Riet,
2002). Cancer was a shameful secret; until
the late 20th century, social mores dictated
that a cancer diagnosis was rarely discussed
publicly and often not even disclosed to the
patient by physicians and family members.
The introduction of anesthesia in the late 19th
century allowed surgical intervention, the fi rst
potentially curative treatment for cancer. Early
surgeries often were devastating, however, and
carried long-term physical and functional side
effects. In the 1920s, radiation therapy was
found to be effective in shrinking some tumors
and was used in conjunction with surgery.
Following World War II, compounds initially
developed by the military for use in chemical
warfare were found to be successful in treating
acute leukemia in children (Mukherjee, 2010).
This discovery presaged the development of
widespread chemotherapy treatments begin-
ning in the early 1950s (ACS, 2010c).
Public and private funding for cancer re-
search and training began to increase once ef-
fective treatments became more common. The
federal government established the National
Cancer Institute (NCI) in 1937 to centralize
efforts to understand and reduce cancer mor-
bidity and mortality. After World War II, not-
for-profi t organizations dedicated to improving
cancer care and prevention, such as the Ameri-
can Society of Clinical Oncology (ASCO) and
ACS, increased public education about cancer
prevention and testing and helped fund a gen-
eration of research that produced signifi cant
breakthroughs in early detection and treatment
of a variety of cancers (ACS, 2010c; Fobair
et al., 2009). In 1970, President Nixon declared
a “War on Cancer,” and Congress enacted leg-
islation to focus efforts to fi nd a cure for the
disease (NCI, 2010). The National Cancer Act
of 1971 broadened the scope and responsi-
bilities of the NCI, created a National Cancer
Program, and organized the development of
12 (currently expanded to over 40) compre-
hensive cancer centers around the country to
integrate research and clinical practice. The
National Cancer Act created the infrastructure
for the generation and collection of data on
cancer etiology, treatment, and biological and
psychological impact that have fueled remark-
able advances in cancer screening, treatment,
and survivorship over the past 40 years.
Progress and Hope in the Late
20th Century
Because of continuing advances in cancer
screening and detection, diagnosis, and treat-
ment technologies, the 1960s and 1970s saw
increased long-term survivorship of cancer.
According to the ACS (2010a), the 5-year
survival rate for the 15 most common cancers
increased from 50% to 66% across race and
gender over the past two decades. This trans-
lates to an estimated 540,000 deaths that have
been avoided because of advances in cancer
treatment and early detection (Jemal et al.,
2010). Approximately 10.5 million people
nationwide have survived cancer, and mortal-
ity rates from the four leading cancers—lung,
breast, prostate, and colorectal—have fallen
for over a decade (Altekruse et al., 2010). As
greater numbers of people are living with can-
cer and experiencing the long-term side effects
of treatment, it has come to be considered a
chronic, episodic illness rather than a terminal
condition (Witter & LeBas, 2008). Although
curing cancer remains the goal, long-term sur-
vival has broadened the aims of treatment to
include controlling symptoms and optimizing
patient quality of life (Gunnars, Nygren, &
Glimelius, 2001; Holland & Lewis, 2000).
Growing public awareness about behav-
ioral and environmental aspects of cancer
(e.g., smoking, exposure to ultraviolet rays
and other carcinogens) and increasing survi-
vorship helped stimulate the development of
psycho-oncology, a medical subspecialty that
deals with psychological responses to the dis-
ease and treatment and the biopsychosocial
determinants of cancer morbidity and mortal-
ity (Holland, 1998; Montgomery, 1999). The
transdisciplinary fi eld of psycho-oncology
aims to develop and evaluate interventions
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504 Health Social Work: Selected Areas of Practice
that alleviate distress, increase supports, and
maximize quality of life among individuals
with cancer and their families. Efforts to in-
tegrate psychosocial care for cancer patients
and their families have increased signifi cantly
over the past 30 years. The ACS, ASCO, In-
stitute of Medicine (IOM), and NCI all have
promoted research, conferences, and scholarly
publications that have advanced the fi eld of
psychosocial oncology, addressing topics such
as cancer prevention, coping and adaptation,
survivorship, quality-of-life assessment, fam-
ily caregiving, cultural differences and health
disparities, psychoneuroimmunology, and can-
cer genetics (Montgomery, 1999).
The hospice and end-of-life care movement
in the 1970s developed in response to concerns
about the need to improve the quality of care
in chronic and terminal illness (Connor, 2007).
Advocating for enhanced patient autonomy,
pain and symptom control, communication
with patients about their medical status and
treatment options, and the importance of social
support networks at the end of life, hospice ad-
vocates and early programs had a pronounced
effect on the fi eld of oncology, leading to in-
creased public awareness and funding of pain
management teams and psychosocial care
services. In the ensuing 20 years, the hospice
movement spurred the development of pal-
liative medicine, which has brought a more
patient- and family-centered, holistic approach
to cancer treatment, beginning at the time of
diagnosis (Connor, 2007; National Hospice
and Palliative Care Organization, 2010). See
Chapters 22 and 23 for more details about pal-
liative and hospice care.
Social Work’s Contribution to Practice
Health social workers have helped individu-
als and their families cope with the biopsy-
chosocial aspects of illness in hospitals and
outpatient clinics since the early 20th century
(Beder, 2006; Fobair et al., 2009; see Chap-
ter 1 for more information). Pioneering social
workers like Ida Cannon and Harriet Bartlett
applied a holistic, “person-in-environment”
perspective to their clinical practices, which
led the way for the subspecialty of oncol-
ogy social work (Fobair et al., 2009). In the
1940s, social workers developed the fi rst hos-
pital departments dedicated to addressing the
psychosocial concerns of cancer patients and
their families, and oncology social workers
have become integral members of interdisci-
plinary health-care teams at major hospitals
around the nation since that time (Holland,
2002). Today, oncology social workers provide
comprehensive psychosocial assessment; case
management; and supportive individual, fam-
ily, and group interventions that help patients
and their families navigate medical systems,
make use of community resources, and attain
optimal adjustment to the disease and treat-
ment (Hermann & Carter, 1994)
Oncology social work leaders are deeply
committed to enhancing patient care. Many of
them helped to refi ne and disseminate clinical
knowledge and skills in the 1980s by build-
ing accomplished and highly respected de-
partments, developing standards of care, and
promoting professional training and research
programs (Fobair et al., 2009). These include
Grace Christ, who was the director of social
work at Memorial Sloan-Kettering Cancer
Center in New York; Joan Hermann, formerly
at the Fox Chase Cancer Center in Philadel-
phia; and Naomi Stearns, currently the director
of social work at Dana-Farber Cancer Institute
in Boston. With the support of the ACS, these
and other pioneers formed the National As-
sociation of Oncology Social Work in 1983
(renamed the Association of Oncology Social
Work [AOSW] in 1993), which has grown into
a major professional organization representing
social workers in the subspecialty. Psychoso-
cial support services are increasingly being
integrated into standard medical guidelines
for oncology (Blum, Clark & Marcusen, 2001;
Holland, 2002). National and international on-
cology social work organizations have helped
lead efforts to improve psychosocial care of
cancer patients and their families through the
creation of professional standards of practice
specifi c to social work in oncology; posi-
tion papers on areas such as euthanasia and
pain management; national conferences and
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Oncology Social Work 505
research awards; and formal continuing edu-
cation in areas such as end-of-life care and
family-centered practice (Fobair et al., 2009).
PSYCHOSOCIAL IMPACT
OF CANCER
Despite the advances in early detection and
treatment, a diagnosis of cancer can be an
emotionally devastating and life altering ex-
perience (IOM, 2007). Newly diagnosed
patients experience a range of emotions, in-
cluding fear, shock, uncertainty, and grief, and
many struggle to mobilize the coping skills
needed to manage these emotions (Hermann
& Carter, 1994). Patients and family members
must absorb and comprehend a great deal of
information and medical terminology about
the disease, undergo blood tests and diagnos-
tic procedures, manage the disease and treat-
ment regimens, navigate complex health-care
systems, ask informed questions and make
critical treatment decisions, and adapt to often-
extensive dietary and behavioral restrictions.
Cancer patients and their families struggle to
become experts in managing the illness, keep-
ing track of medical appointments and proce-
dures, interacting with a variety of health-care
providers, and monitoring insurance benefi ts,
including short- and long-term disability poli-
cies (Smith, Walsh-Burke, & Crusan, 1998).
Psychosocial stressors associated with cancer
and its sequelae can undermine an individual’s
sense of self and self-worth, provoke fears and
anxieties, and test coping mechanisms, values,
and social support systems like never before.
Coping with the emotional impact of the dis-
ease over time involves adapting to changes in
self and identity, living with uncertainty and
a heightened sense of mortality, and radical
disruptions in all arenas of one’s life, includ-
ing work, leisure, and social relationships
(Holland & Lewis, 2000; Waskul & van der
Riet, 2002).
Treatment often is associated with greater
discomfort and disruption of the patient’s life
than the disease itself. Cancer surgery can re-
sult in short-term complications, such as pain
and discomfort, lack of mobility, bleeding, or
infection, and long-term side effects, such as
scarring, nerve and tissue damage, and sig-
nifi cant functional limitations (e.g., disrup-
tion of gastrointestinal, respiratory, or sexual
functioning, and limited mobility or range of
motion) (Eyre et al., 2001). Despite the de-
velopment of interventions and protocols that
moderate symptomatic responses to treatment,
treatment effects of chemotherapy and radia-
tion therapy, such as fatigue, pain, nausea, and
vomiting, are still quite common (IOM, 2007).
Treatment effects can affect quality of life sig-
nifi cantly because they diminish energy and
limit mobility, autonomy, and the ability to
carry out day-to-day activities. Side effects,
such as hair loss and appetite and weight fl uc-
tuations, and radical surgical procedures carry
additional stigma by displaying visible clues
of a serious illness (Rosman, 2004).
Individuals with cancer have higher rates
of mental illness than their peers, especially
adjustment disorders, anxiety, and depres-
sion (Carlson et al., 2004; Spiegel, 1996).
Psychological distress may be preexisting or
a response to the diagnosis and can be exac-
erbated by ongoing disease and treatment.
Anxiety and depression are not related specifi –
cally to different types of cancer, but cancers
with poorer prognoses (e.g., pancreatic) tend
to be associated with greater levels of distress
(Carlson et al., 2004; Zabora, Brintzenhofeszoc,
Curbow, Hooker, & Piantadosi, 2001). Depres-
sion in cancer patients often is underdiagnosed
or viewed by health-care professionals as a
“natural” response to life-threatening disease
(Spiegel, 1996). The failure to accurately de-
tect and treat psychosocial diffi culties or men-
tal illness can exacerbate patient and family
distress, get in the way of disease management
and adherence to treatment protocols, and de-
crease quality of life (IOM, 2007).
Research on psychosocial response to can-
cer suggests that several factors may enhance
the patient’s adaptation to the disease. Cancer
patients who approach their illness with an in-
ternal sense of control over the disease process
and an optimistic or hopeful attitude generally
experience less emotional distress and higher
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506 Health Social Work: Selected Areas of Practice
psychological adjustment than do other cancer
patients (Ell, Nishimoto, Mediansky, Mantell,
& Hamovitch, 1992; Livneh, 2000). Using
active engagement-oriented coping styles
that emphasize problem solving, seeking in-
formation and social support, processing and
expressing emotions, and adopting a fi ghting
spirit also may enhance psychological adapta-
tion to the cancer experience (Stanton et al.,
2000). In addition, patients who report higher
levels of social support, and those who turn
to religion or faith in coping with the disease,
may experience less distress and improved
well-being (Wright, 1999). This literature has
many inconsistencies, however, and the role
of neuroimmunological changes, illness fac-
tors, and sociodemographic variables such as
gender, age, and race/ethnicity in coping and
psychological adjustment have yet to be fully
explored (Livneh, 2000).
Cancer and the Family
Cancer is considered a disease that affects
families because of the many ways in which an
individual’s illness affects and is affected by
the functioning of families and extended kin.
Cancer and its treatment can disrupt family
and social roles, causing emotional upheaval
and requiring changes in all family members
to manage the disease and maintain normal
family functioning (Weihs & Politi, 2006).
Families adapt to chronic and advanced ill-
ness through complex and often unconscious
changes in structure, rules, and communica-
tion with one other and with those outside the
family (Gardner, 2008; Patterson & Garwick,
1994). Having a parent, for example, who is
too ill or exhausted to care for her children,
a family breadwinner who is temporarily un-
able to work, or a partner who has signifi cant
changes in appearance or sexual desire can
bring about devastating changes in family in-
teractions, resources, and health.
Family caregivers provide the bulk of care
for cancer patients (Rabow, Hauser, & Adams,
2004; Wolff, Dy, Frick, & Kasper, 2007) and
play a signifi cant role in providing hands-
on, day-to-day care; ensuring adherence with
medications and care plans; and maintaining
communication with health-care team mem-
bers, friends, and family about the patient’s
daily status, needs, and concerns. This is
particularly salient when the cancer patient
is a child, elderly, or has advanced cancer
(Glajchen, 2004; Hauser & Kramer, 2004;
Waldrop, Kramer, Skretny, Milch, & Finn,
2005). A rich empirical literature suggesting
that family caregivers share much of the emo-
tional, physical, and fi nancial strains of living
with a chronic and progressive illness, often
at the risk of their own physical and mental
health (Hudson, Aranda, & Kristjanson, 2004;
Waldrop, 2007). Despite the potential benefi ts
of providing care for family members with
chronic illness (Kramer, 1997), doing so sig-
nifi cantly increases the caregiver’s vulnerabil-
ity to a range of mental and physical health
problems (Braun, Mikulincer, Rydall, Walsh,
& Rodin, 2007).
Family adaptation to cancer is infl uenced
by family dynamics, such as communication,
fl exibility, mutuality, cohesion, and family life
stage, as well as illness variables, including
disease course (i.e., acute or chronic, and pro-
gressive, constant, or relapsing), anticipated
outcome, and patient’s level of functioning
(Rolland, 2005; see Chapter 13 for further
discussion). Flexibility of family roles and
boundaries, which allows families to use out-
side supports while maintaining some consis-
tency in family functioning, is associated with
coping and resilience (F. Walsh, 2006). Living
with cancer changes family communication
patterns and requires families to talk about
things they often have little or no experience
in talking about. Although open and intimate
communication is thought to be helpful in
families living with chronic illness, barriers
to effective communication include preexist-
ing family confl icts, differing health beliefs or
care preferences, family secrets, or confl ict-
ing family narratives (Kramer, Boelk, & Auer,
2006; Werner-Lin & Gardner, 2009). Dyadic
and relational stressors can compound the
tasks of the cancer experience and negatively
affect marital or partner relationships (Kayser,
Watson, & Andrade, 2007; Manne, 1998).
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Oncology Social Work 507
Genetic Testing and Reproductive
Decision Making
Recent advances in mapping the human ge-
nome have uncovered alterations in the genetic
code that predispose carriers to increased risk
for a variety of adult-onset cancers (see Chap-
ter 21). According to the National Human Ge-
nome Research Institute (n.d), genetic cancers
account for approximately 5% to 15% of all
cancer diagnoses. A blood test can identify
the presence of one of these mutations, and
receiving results is complex and frequently
distressing (Meiser, 2005). Because of the na-
ture of genetic inheritance, test results provide
information about an entire family bloodline.
Because every generation is at risk for inher-
iting mutations, a major motivation for young
adults to pursue genetic testing is to inform
family planning (Decruyenaere et al., 1996;
Denayer, Evers-Kiebooms, Tejpar, Legius, &
Van Cutsem, 1999; Werner-Lin, 2010). Ge-
netic counseling and testing can reduce anxi-
ety for patients by clarifying risk perceptions
(Meiser & Halliday, 2002), increasing con-
trol over inherited risk, and opening avenues
to pursue advanced and targeted preventive
medical care (Gooding, Organista, Burack,
& Beisecker, 2006). Yet patients frequently
have trouble understanding, interpreting, and
using complex genetic health information.
Furthermore, although preventive measures do
exist, they provide no guarantees and may sig-
nifi cantly impact quality of life, identity, self-
esteem, sexuality (Lostumbo, Carbine, Wallace,
Ezzo, & Dickersin, 2004; Lux, Fasching, &
Beckmann, 2006; Metcalfe, Lynch, Ghadirian,
& Nadine, 2004), and long-term health out-
comes (Kauff et al., 2008; Rebbeck, 2002).
A mutation of the BRCA gene, just one of
the gene mutations that has been implicated in
inherited breast cancer risk, confers an esti-
mated 14% to 87% lifetime risk for breast can-
cer to women as well as a 10% to 68% lifetime
risk of ovarian cancer (Antoniou et al., 2003;
Szabo & King, 1997). High rates of cancer ex-
pression suggest that extended family systems
may have experienced many cancer-related di-
agnoses and losses with few periods of respite
between one diagnosis and the next. Experi-
ences with cancer treatment and loss may be-
come a familiar backdrop for family life and
may shape perceptions of cancer risk and deci-
sions about prevention and early detection for
asymptomatic family members (Werner-Lin,
2010).
Cancer Over the Life Course
Childhood and Adolescence
The psychosocial impact of cancer on individ-
uals, families, and communities depends to a
great extent on the biological, developmental,
historical, and culturally defi ned age of the pa-
tient. Children of different ages, for example,
interpret and experience illness and treatment
differently, according to their cognitive and
developmental capacities and in the context of
their family and peer relationships. Children
with cancer often experience increased anxi-
ety, depression, social isolation, and regres-
sion (Zebrack & Chesler, 2001). As a result, a
cancer diagnosis in childhood or adolescence
may impede the resolution of normal devel-
opmental tasks, such as individuation from
caregivers, identity development, and build-
ing intimate friendships. Children may experi-
ence anticipatory symptoms, including nausea
and vomiting, prior to treatment as a result of
classical conditioning or anxiety. Nonadher-
ence to cancer treatment is reported in 33%
of children younger than 13 years and 59%
of adolescents (Keene, Hobbie, & Ruccione,
2000; Richardson & Sanchez, 1998). Although
parents are responsible for their children’s ad-
herence to treatment, a child may still refuse
treatment. Social workers can intervene by refo-
cusing the child’s need for control toward other,
less harmful behaviors and by assessing how
parenting styles may be problematic for the
child. Referral for individual and family coun-
seling is crucial if ongoing diffi culties persist.
School experiences have a signifi cant im-
pact on development and support during child-
hood and adolescence (Patenaude & Kupst,
2005). Children often miss signifi cant amounts
of school, which impacts their classroom
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508 Health Social Work: Selected Areas of Practice
learning, peer relationships, and sense of mas-
tery and autonomy. For adolescents, cancer
can interfere with sexual development. Psy-
chosexual losses surround issues of physi-
cal development, menses, fertility, and libido
(Zebrack, Casillas, Nohr, Adams, & Zeltzer,
2004). Cancer also can interfere with adoles-
cents’ exploration of their sexual identities; an
estimated half of adolescent survivors of can-
cer feel uncomfortable with the opposite sex
and avoid dating (Zebrack & Chesler, 2001).
Parents of School-Age Children
When parents of school-age children are di-
agnosed with cancer, balancing parenting and
self-care may be problematic. Parents with
cancer worry about what and how to tell their
children about their illness, how to continue
meeting the demands of parenting throughout
treatment, and how to plan for their children’s
care if they die from the disease (Biank &
Sori, 2003). At times, cancer patients rely on
their children and teens for treatment or emo-
tional support; this “parentifi cation” can add
to the child’s burden and is associated with
negative mental health outcomes (Hermann,
2001). Children, adolescents, and parents can
benefi t from education and support, including
support groups in which their needs and con-
cerns can be addressed (Werner-Lin, Biank, &
Rubenstein, 2010).
Cancer in Later Life
Older adults account for approximately 77%
of new cases of cancer each year (ACS,
2010a). Older cancer patients are more likely
than those younger than 65 years to live with
concurrent, chronic illnesses, such as diabetes,
cardiovascular disease, respiratory disease,
kidney disease, and Alzheimer’s disease or
other dementing illnesses. The pervasiveness
of comorbid chronic conditions in later life
poses distinct health and psychosocial chal-
lenges to older cancer patients, their families,
and health-care providers. Chronic illness in
later life is associated with increased pain, de-
pression, and mortality and with diminished
quality of life (Kane & Kane, 2005; Lawton,
2001). Co-occurring chronic and degenerative
diseases often cause or exacerbate functional
limitations that threaten older adults’ ability to
care for themselves or live independently. Age-
related functional concerns, such as vision
and hearing loss, diffi culties with balance and
walking, falls, eating and nutritional problems,
cognitive losses, and incontinence, can signifi –
cantly limit an older adult’s ability to carry out
daily activities and manage medical treatments
(Inouye, Studenski, Tinetti, & Kuchel, 2007).
Frailty—a condition defi ned by muscle weak-
ness, limited mobility, and fatigue—is increas-
ingly common with age and is associated with
higher risks of falls, disability, hospitalization,
and premature death (Feldt, 2004; Woods et
al., 2005; see Chapter 16).
Older patients share many physical, psy-
chological, social, and spiritual concerns that
shape their aging and illness experiences,
quality of life, and palliative care needs. Older
adulthood is often a time of signifi cant life
transitions, including retirement, changing
family roles, the death of a partner and other
loved ones, and declining health, function-
ing, autonomy, and independence. Although
there is wide variability in how older patients
experience chronic and progressive illness,
some view a life-threatening diagnosis as an
“expected” and developmentally consistent
phenomenon. Many older adults report that
they fear the process of dying more than death
itself; frequent concerns include the possibil-
ity of experiencing uncontrollable pain, grow-
ing incapacity, loss of autonomy and control,
and becoming a burden on family members
(Cicirelli, 1999; Gardner & Kramer, 2009/10).
Elders who have or expect to experience more
physical pain, who fear abandonment, or who
lack social and spiritual support report having
more diffi culty coping with progressive illness
and dying (Fortner & Neimeyer, 1999).
Fixed incomes and inadequate insurance
benefi ts can limit an older cancer patient’s ac-
cess to the resources needed for coping with
the demands of cancer treatment, particularly
when older individuals themselves are car-
ing for adult children, grandchildren, or ill
spouses. Common challenges include paying
for treatments not covered by Medicare and
JWBT514_ch19.indd 508JWBT514_ch19.indd 508 9/21/11 7:45 PM9/21/11 7:45 PM
Oncology Social Work 509
other insurances, fi nding transportation to
medical appointments, and needing assistance
in performing daily self-care activities. Medi-
care and third-party insurers rarely cover new
or experimental medications and procedures,
making it diffi cult for older patients to take full
advantage of emerging treatment options. In
addition, a growing literature identifi es ageism
as a factor in the undertreatment of older pa-
tients with a range of cancer diagnoses (Dale,
2003; Peake, Thompson, Lowe, & Pearson,
2003). Older cancer patients frequently are ex-
cluded from clinical trials solely on the basis
of age, and physicians may refrain from offer-
ing aggressive treatments to them under the
assumption that older patients cannot physi-
cally handle adverse side effects (Marcusen
& Clark, 2001; Rohan, Berkman, Walker, &
Holmes, 1994).
Feeling that one has reliable, reciprocal
social supports and a community or social
network (e.g., church congregations, friends,
and extended family) is a signifi cant pre-
dictor of health and well-being in later life
(L. Berkman, 2000; Krause, 2006), and it
may mediate the impact of serious illness
and stressful life events (Cohen, 2001). Con-
versely, older adults who are socially isolated,
live alone, and report few social resources are
more vulnerable to illness, disability, and mor-
tality (Lyyra & Heikkinen, 2006; Moren-Cross
& Lin, 2006). Yet older adults generally cope
with advanced illness and the threat of dying
by turning inward (Atchley, 2009; Werth,
Gordon, & Johnson, 2002), engaging in in-
quiry about life’s meaning, their legacy, and
the afterlife (Bolmsjo, 2000; Nelson-Becker,
2005). Some elders experience renewed faith
that can strengthen their connections to family
and community and help them adapt to loss,
chronic illness, functional decline, dying, and
death (Atchley, 2009).
Cancer Survivorship
Outliving a life-threatening condition like
cancer often requires managing long-term ef-
fects that can cause emotional distress, func-
tional limitations, and further chronic health
problems. Some survivors live with “minor”
annoyances, such as a dry skin, lymphedema
(i.e., fl uid retention, often in the arms or legs),
or mild neuropathy in their hands and feet.
For others, surviving cancer comes at the cost
of developing other serious health concerns,
such as cardiac disorders, cognitive defi cits,
chronic renal disease, secondary cancers, and
infertility (Kornbluth, 1998; Oeffi nger et al.,
2006; Pizzo, 2001). These chronic conditions
and side effects act as ongoing reminders of
the negative emotional experiences associated
with cancer.
Survivors of childhood cancer face unique
medical and psychosocial issues. They fre-
quently worry about recurrence (Zebrack &
Chesler, 2001) and may need support with
separation from parents and reintegration into
peer groups. Learning disabilities can develop
as a result of chemotherapy and radiation
treatment and may impede academic progress
and cause loss of mastery and self-esteem, so-
cial isolation, depression, anxiety, and family
problems (Shilds et al., 1995; Zebrack, Jaehee,
Petersen, & Ganz, 2007). School reintegration
is a major area of concern for children and
families. Realistic standards should be set for
such children, combining appropriate school
rules to maintain normalcy while making spe-
cifi c illness-related allowances.
As survivors grow into adulthood, they be-
come more vulnerable to long-term treatment
side effects and early mortality (Mertens et al.,
2001). Families and providers may not fully
discuss the long-term side effects of cancer
treatment with children and adolescent cancer
patients, due either to a focus on the imme-
diate goals of helping the child to survive or
to diffi culty in broaching emotionally charged
and potentially painful future losses. Com-
mon treatment side effects experienced by
childhood cancer survivors in adulthood in-
clude the development of secondary cancers,
ongoing fatigue and pain, uncertainty about
fertility, and challenges to sexual functioning
(Zebrack et al., 2007). Sexuality and reproduc-
tive functioning present ongoing reminders of
childhood cancer experiences. Concerns about
fertility and sexual function require young
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510 Health Social Work: Selected Areas of Practice
adult survivors to wonder whether they can
or should have children and how to discuss
these issues with romantic partners (Zebrack,
Casillas, Nohr, Adams, & Zeltzer, 2004).
ONCOLOGY SOCIAL WORK
Oncology social workers provide psychosocial
support that maximizes the health and func-
tioning of individuals, families, groups, and
communities affected by cancer. In a variety
of oncology settings and across the cancer
continuum, they access psychosocial and in-
strumental resources, support adaptive coping
capacities, and alleviate emotional and envi-
ronmental stressors (AOSW, 2010). Social
workers draw on the profession’s person-in-
environment perspective to treat “the whole
person” in the context of social and environ-
mental factors that can enhance or exacerbate
the illness experience. This approach ad-
dresses biopsychosocial and spiritual concerns
that pose barriers to managing the illness, ad-
hering to treatment protocols, and persevering
through treatment, and makes the oncology so-
cial worker an essential member of the health-
care team (IOM, 2007).
Scope and Functions
Social workers intervene at multiple levels and
across systems (see Box 19.2) to enhance pa-
tient care and quality of life (Raveis, Gardner,
Berkman, & Harootyan, 2010). Psychosocial
support at the micro level includes:
• Conducting comprehensive assessments of
individual and family emotional, behav-
ioral, and social functioning
• Assessing patient and family coping, emo-
tional and social resources, and response to
the illness; educating and answering ques-
tions about medical, practical, and psycho-
social aspects of cancer and treatment
• Fostering adaptive coping
• Helping patients and families navigate com-
plex health-care and community systems
• Mobilizing supportive resources and ser-
vices to improve the quality of care
• Teaching strategies to manage and reduce
symptoms and side effects
• Providing supportive and therapeutic inter-
ventions to individuals, groups, and fami-
lies to address uncertainty, reduce anxiety
and emotional distress, and enhance qual-
ity of life throughout the illness course
(AOSW, 2010)
Oncology social workers use a variety of in-
terventions and provide a range of services,
from clinical case management, to intensive
psychotherapy, to meet the unique needs of
cancer patients and their families at different
points on the cancer continuum.
Traditionally, oncology social workers have
practiced primarily in inpatient and ambula-
tory hospital settings, but the subspecialty has
grown to a range of inpatient and outpatient
programs (e.g., oncology, pain medicine and
palliative care, and other specialty services),
home health and hospice services, commu-
nity-based cancer support programs, private
practice, and community-based mental health
settings (AOSW, 2010). The profession’s em-
phasis on social context and working across
multiple systems positions social workers well
to provide care coordination and enhance con-
tinuity of care for patients who commonly ex-
perience multiple transitions over the course of
the illness (Raveis et al., 2010).
Support groups can be an effective resource
for cancer patients, caregivers, and other fam-
ily members to fi nd answers to illness-related
questions and ameliorate psychosocial con-
cerns. Social group work often is used in cancer
care to reduce social isolation and build social
supports, facilitate the sharing of emotional
concerns, and provide safe places to exchange
strategies for managing symptoms, interacting
with family members and health-care provid-
ers, and coping with multiple illness-related
changes (Fobair, 1998; Spiegel & Classen,
2000). Patients and caregivers participating in
support groups feel less distress about cancer
and cope with illness-related concerns more
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Oncology Social Work 511
effi ciently (Goodwin et al., 2001; Spiegel &
Classen, 2000). Support groups can help to
keep children and adolescents on track de-
velopmentally, support overburdened and ex-
hausted parents, and provide continuity during
chaotic or uncertain transitions (Werner-Lin
et al., 2010).
Oncology social workers emphasize the
family as the unit of care, a perspective that
expands the traditional focus on the physician–
patient relationship to include the primary
social relationships that patients turn to most
for support when facing life-threatening,
chronic illness. Family-centered care engages
family members as allies in providing qual-
ity treatment, treats families with dignity and
respect, and helps patients and families make
more informed and consensual care decisions
(Johnson, 2000). Oncology social workers
help families adapt to illness-related changes
in family roles and responsibilities, provide
emotional support and resources to reduce
the burdens of family caregiving, assist with
fi nancial and other logistical concerns, and
empower families to stay informed about a pa-
tient’s status. They also advocate for patients
through the course of the illnesses. Family
caregivers benefi t from clinical case manage-
ment, resource referral, respite, and support
around transitions. Families also benefi t from
psychotherapeutic support and psychoedu-
cation around problem solving and decision
making, working through family confl icts, and
communicating more effectively with one an-
other and with team members (Hudson et al.,
2004; Johnson, 2000).
Family conferences are used extensively by
oncology social workers to increase communi-
cation and enhance management of the illness
among patients, family members, and mem-
bers of the health-care team (Hudson, Thomas,
Quinn, & Aranda, 2009). Social workers often
coordinate and facilitate family meetings and
help families and health-care team members
create an environment in which they can con-
nect with one another and address the concerns
of all participants. Effective family meetings
provide opportunities for communicating
about changing medical information and dis-
cussing treatment options, provide emotional
support to patients and families, and facilitate
communication and decision making about
goals and care preferences (Glajchen, 2004).
Family meetings also allow social workers
to bring together patients, families, friends,
neighbors, and representatives of community
institutions (e.g., workplaces, schools, and
houses of worship) to lend instrumental and
emotional assistance to families as they adapt
to living with cancer.
Box 19.2 Association of Oncology Social
Workers Scope of Practice
The scope of practice in oncology social
work as identifi ed in the AOSW Standards
of Practice includes:
1. Services to cancer survivors, families,
and caregivers through clinical practice
providing comprehensive psychosocial
services and programs through all phases
of the cancer experience.
2. Services to institutions and agencies
to increase their knowledge of the
psychosocial, social, cultural, and spiritual
factors that impact coping with cancer
and its effects, and to ensure provision of
quality psychosocial programs and care.
3. Services to the community through
education, consultation, research, and
volunteering to utilize, promote, or
strengthen the community services,
programs, and resources available to
meet the needs of cancer survivors.
4. Services to the profession to support the
appropriate orientation, supervision and
evaluation of clinical social workers in
oncology; participate in and promote
student training and professional
education in oncology social work; and
advance knowledge through clinical and
other research.
Source: From Association of Oncology Social
Workers. (2010). Scope of practice. Retrieved from
www.aosw.org/html/prof-scope.php
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http://www.aosw.org/html/prof-scope.php
512 Health Social Work: Selected Areas of Practice
The scope of oncology social work prac-
tice extends beyond the patient and family to
include service to other professionals on the
oncology team, health-care systems, commu-
nities, the social work profession, and soci-
ety at large. Oncology social workers act as
a bridge between patients and the health-care
system, advocate for patients and families,
and help keep the oncology team informed
about the unique concerns, strengths, cultural
beliefs, and care preferences that affect the
patient’s experience with cancer. Social work
contributes to the advancement of cancer pre-
vention and quality care by working to develop
and strengthen community resources; devel-
oping and implementing social services and
programs that are responsive to the needs of
cancer patients and survivors; promoting pub-
lic education about early cancer screening and
treatment options; and conducting research on
the impact of the disease on individuals and
families, the effectiveness of psychosocial
oncology interventions, and the long-term ex-
periences of cancer survivors and family mem-
bers (AOSW, 2010; Hermann & Carter, 1994).
In addition, social workers in oncology are ac-
tive in professional development, creating and
disseminating guidelines for ethical and com-
petent practice, providing clinical supervision,
and working to educate the next generation of
oncology health-care professionals.
Conceptual Foundations
Oncology social work practice is grounded
in a variety of theoretical frameworks and
empirical literatures, including psychosocial
oncology, attachment and loss, stress and cop-
ing models (Livneh, 2000), family systems
and relational coping (Boss, 2001; Kayser et
al., 2007), child and adult development, and
narrative and meaning making (Fife, 1994;
Werner-Lin & Gardner, 2009). In addition, an
ecosystems perspective (Germain & Gitterman,
2008; Meyer, 1995) and commitment to treat-
ing the person in environment are integral to
social work in oncology, sensitizing social
workers to team and organizational issues,
community processes, and macro-level policy
while they simultaneously attend to the intra-
psychic and interpersonal needs of individuals
and families. For the oncology social worker,
“the ecosystems perspective is a way of seeing
case phenomena (the person and the environ-
ment) that are interconnected and multilayered
to order and comprehend complexity and avoid
oversimplifi cation” (Meyer, 1995, p. 18).
Oncology social work practice refl ects the
ethics and values that guide the social work
profession, such as promoting service to cli-
ents, individual dignity and self-determination,
social justice, the importance of social rela-
tionships, and integrity in professional conduct
(NASW, 2008). The profession’s commitment
to meeting the needs of the most vulnerable
and oppressed members of society is particu-
larly important in the cancer context, where
social workers work to mobilize resources for
individuals, families, and groups and work to-
ward the elimination of health disparities and
inequities in treatment. The aims of oncology
social work are consistent with those of pallia-
tive care, gerontology, and health social work,
in that they focus on enhancing individual and
family functioning, autonomy and choice in
decision making, communication and access
to resources, and quality of life in chronic and
end-of-life care.
Essential Knowledge and Skills
Although cancer diagnoses, treatment pro-
tocols, and symptoms vary greatly, and each
patient’s experience is unique, the knowledge
and competencies presented in Box 19.3 are
fundamental to providing quality psychosocial
care for cancer patients and their families.
Medical and Psychosocial Knowledge
About Cancer and Oncology
Social workers in oncology must be well in-
formed about common types of cancer, symp-
toms, treatment protocols, medical procedures,
short- and long-term side effects, illness tra-
jectories, and survivorship. Knowing the fun-
damentals of cancer and oncology is important
in tracking a patient’s changing medical situa-
tion, assessing the extent to which patients and
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Oncology Social Work 513
families understand disease and treatment, and
helping them to prepare and ask appropriate
questions of their health-care and psychosocial
service providers. Having a basic understand-
ing of cancer prevention and control, including
early screening, genetic testing, and physical
and behavioral predictors of different cancers,
is also important for oncology social workers.
Research suggests that social workers can help
with cancer prevention by tailoring individual,
behaviorally oriented interventions to tar-
get harmful behaviors among groups (Gotay,
2005).
Understanding the physical, emotional,
psychological, social, spiritual, and practi-
cal effects of living with cancer across the
course of the illness represents the fundamen-
tal knowledge base of oncology social work.
It is essential that social workers continually
build on their command of developmental dy-
namics, ego functions, coping skills, family
dynamics and adaptation to illness, the excep-
tional needs of family caregivers, fi nancial and
other concrete needs, the role of social sup-
port, and community responses to cancer and
its sequelae to effectively assess and develop
plans that respond to the needs of patients and
families (Hermann & Carter, 1994). Oncology
social workers should be familiar with scien-
tifi c publications, professional listservs, and
opportunities for continuing education that
expose them to evidence-based research and
practice.
Oncology social workers also must keep
abreast of current knowledge about mental
health and illness, particularly regarding mani-
festations of psychopathology and psychiatric
symptoms associated with chronic and life-
threatening illness. Such knowledge, along
with a familiarity with the Diagnostic and
Statistical Manual of Mental Disorders and
psychopharmacology, is essential for com-
prehensive assessment, case planning, and
provision of appropriate services or referrals.
Individuals with cancer may be vulnerable to
anxiety and depression, and these and other se-
rious mental health concerns may be underdi-
agnosed and undertreated among people with
cancer. As the member of the transdisciplinary
care team who may have the most expertise in
mental and behavioral health, oncology social
workers should be familiar with risk factors
and treatment options for mental health condi-
tions that are common among cancer patients
and caregivers.
Health-Care and Social Service Systems
and Resources
To help patients and families navigate com-
plex systems and access resources necessary
to ensure quality care, oncology social work-
ers must be familiar with health-care organi-
zations and services, service delivery systems,
and fi nancial structures and processes (i.e.,
health insurance, managed care, Medicare,
and Medicaid). Oncology social workers are
trained to understand the aspects of the con-
tinuum of care from health promotion and dis-
ease prevention to critical and end-of-life care,
including programs and services ranging from
Box 19.3 Essential Knowledge and Skills
for Oncology Social Workers
Knowledge about cancer, symptoms,
treatment, and side effects
Biopsychosocial impact of chronic and
life-threatening illness on individuals,
families, and communities
Health-care and social service systems
and resources
Mental health diagnoses and treatment
Ethical and legal concerns
Conducting comprehensive
biopsychosocial assessment
Clinical case management
Direct clinical practice across the cancer
continuum
Family-centered practice
Educating patients and family
members about cancer prevention,
health promotion, and disease
self-management
End-of-life and palliative care
Interdisciplinary and ethical practice
Cultural competence and advocacy
Research- and evidence-based practice
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514 Health Social Work: Selected Areas of Practice
community-based clinics to inpatient hospi-
tals, rehabilitation, and long-term care facili-
ties. Linking patients with essential programs
and resources (e.g., information, fi nancial or
transportation assistance, home-care and home
health aides, Medicaid and third-party insur-
ance, etc.) requires up-to-date knowledge of
ever-changing policies and services, includ-
ing eligibility requirements, application pro-
cedures, and strategies for communicating
information to cancer patients and their care-
givers. Oncology social workers often also
work closely with patient navigators to pro-
vide information and services to patients and
families. Navigators are individuals hired by
hospitals and clinics to help patients operate
within treatment systems effi ciently and effec-
tively.
Ongoing Assessment of Individuals
and Families
The skills needed to conduct comprehensive
biopsychosocial assessments are fundamen-
tal to understanding and addressing the psy-
chosocial resources, challenges, and unmet
needs facing cancer patients and their fami-
lies. Early assessments help identify and re-
solve problematic coping and health behaviors
(Brintzenhofszoc, Smith, & Zabora, 1999;
Zabora et al., 2001). Comprehensive assess-
ments can predict morbidity and mortality in
older patients with cancer (Extermann & Hur-
ria, 2007). Assessment should be ongoing as
cancer progresses, remits, or recurs. For ex-
ample, assessment of survivorship experiences
may mitigate ongoing distress (Zebrack et al.,
2007) or help to address complicated bereave-
ment after a patient dies (Brintzenhofszoc
et al., 1999). Although many standardized as-
sessment instruments are designed to measure
adjustment to cancer and patient quality of
life (e.g., FACT, COPES; see Goodwin et al.,
2001, for a review), a comprehensive assess-
ment should include (IOM, 2007; Walsh,
2005; Zebrack, Walsh, Burg, Maramaldi, &
Lim, 2008):
• Current medical situation and symptoms,
including illness course and trajectory,
multidimensional assessment of pain and
other symptoms, and patient and family
perceptions of illness and care
• Cognitive and functional status
• Individual and family illness history (in-
cluding physical and mental illness and
use of medical and psychosocial support
services)
• Family and relational processes (family
structure, communication, problem solving,
adaptability, cohesion, and confl ict, etc.)
• Developmental capacities and concerns
• Coping skills and ego functioning
• Social supports (informational, emotional,
and practical) and resources
• Cultural, spiritual, and religious beliefs,
values, and practices
• Financial status and resources
• Access to community programs and
services
• Family meaning making
• Mental health and coping concerns
Cultural Competence and Advocacy
In an increasingly diverse and aging society,
the ability to practice with people from a vari-
ety of cultural, ethnic, racial, socioeconomic,
and religious backgrounds is a requisite skill
for oncology social workers. Social workers
are trained to provide culturally sensitive as-
sessment, care planning, and psychosocial
support services (Bonder, Martin, & Miracle,
2001). Oncology social workers must remain
attentive to differe nces in the way patients
and families perceive of and cope with ill-
ness, medical treatment, grief, and loss based
on ethnicity, culture, religion, life history, and
SES. Effective pain and symptom manage-
ment, for example, is impossible without un-
derstanding individual, familial, and cultural
perceptions, values, and beliefs about pain
and developing interventions that respect the
unique, individualized experiences of patients
with chronic illness and their families (Altilio,
2004; Davidhizar & Gige, 2004). Competent
social workers should be aware of their own
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Oncology Social Work 515
cultural assumptions and biases, engage in
exploring and appreciating the worldviews of
their diverse clients, and strive, develop, and
practice appropriate, relevant, and sensitive
intervention strategies in helping all clients
(Pérez Foster, 1998).
Social work’s core value of respect for the
dignity and worth of those they serve draws
attention to the dynamics of difference and so-
cial inequities that affect individuals, families,
and communities (NASW, 2008). Understand-
ing health disparities and the pervasive effects
of racism, xenophobia, sexism, ageism, eco-
nomic oppression, and cumulative disadvan-
tage thus are essential to oncology social work
practice. Promoting awareness of the unique
perspectives and concerns of diverse cancer
patients and their families, advocating for
their needs and concerns, and educating mem-
bers of the palliative care team about distinct
beliefs and values regarding aging, illness,
pain, and treatment can expand the reach and
enhance the quality of care (Del Rio, 2004).
Social workers have a professional mandate to
intervene on multiple levels (i.e., individual,
familial, institutional, community, and soci-
etal), ensure the provision of just and equi-
table care to all patients, and advocate within
health-care systems to balance the desire for
cost effi ciency and measurable outcomes with
services that are accessible and affordable to
all cancer patients and their families (Christ &
Diwan, 2008; Harootyan & O’Neill, 2006).
Clinical Practice With Multiple
Modalities Through the Cancer
Continuum
Oncology social workers provide psychosocial
support to individuals, families, and commu-
nities from the point of screening through the
period of long-term survivorship. Many can-
cer patients experience turning points along
the disease continuum at which they feel vul-
nerable, frightened, and uncertain about their
futures. These points may occur at the time of
cancer diagnosis, the inception of treatment,
remission, recurrence or metastasis, the con-
clusion of treatment, and, for many, when fac-
ing death from the disease or its complications.
Social workers are familiar with the challenges
specifi c to various cancer diagnoses and are
skilled at crisis intervention and supportive
counseling to help patients and families cope
with the emotional, practical, and existential
crises that often arise at this time.
Education and psychosocial support are
critical to helping patients understand medical
information and procedures, clarify the roles
of different health-care providers, and man-
age the demands of undergoing diagnostic
workups, navigating health-care systems, and
making informed decisions about treatment,
providers, and care settings. At the beginning of
treatment, oncology social workers continue to
support patients and family caregivers around
the fears and uncertainties inherent in adhering
to medical protocols, dealing with side effects,
and adjusting to new routines at home and in
the hospital or clinic. During treatment, social
workers help patients marshal their strengths
and adhere to often complex and demanding
treatment regimens and their accompanying
anxiety, uncertainty, and emotional exhaustion
(Eyre et al., 2001).
The termination of treatment presents an ex-
istential crisis for some patients, who feel they
are no longer actively fi ghting the cancer and
become anxious about its recurrence (Holland
& Lewis, 2000). The extraordinarily taxing
nature of cancer treatment makes the prospect
of a recurrence devastating for the cancer sur-
vivor, and each diagnostic test or exam in the
ensuing months and years can raise fears of
having to resume treatment. Oncology social
workers help survivors understand and adapt
to a new “normal” (Rolland, 2005) by pro-
viding individual, group, and family therapy
to enhance adaptation to long-term physical,
functional, and emotional effects of the dis-
ease and its treatment. This helps survivors to
anticipate concerns and mobilize the resources
needed to resume their previous roles and ac-
tivities.
Oncology social workers must be skilled
in a variety of direct practice methods. Social
workers are trained in using multiple modali-
ties, such as cognitive-behavioral, psychody-
namic, family and group therapy, to address
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516 Health Social Work: Selected Areas of Practice
illness related concerns. Being familiar with
treatment guidelines and evidence-based prac-
tices for patients with mental health concerns,
such as anxiety, depression, or chronic men-
tal illness, is essential to providing effective
psychosocial care. These skills enable social
workers to move fl uidly between modalities
and methods to support patients and their
families at different points along the cancer
continuum.
Clinical practice with families and family
caregivers is a central component of oncology
social work. Given dramatic changes in health
care, families have increasingly assumed the
burden of providing care for loved ones with
cancer and other chronic illnesses. Conducting
comprehensive family assessments, develop-
ing family-centered care plans, providing fam-
ily counseling around illness-related changes
and concerns, and arranging and facilitating
family conferences to apprise everyone of the
patient’s medical condition and treatment op-
tions are essential to supporting the psycho-
social needs of patients and family members
(Given, Charles, Given, & Kozachik, 2001).
Oncology social workers support family care-
givers through a range of evidence-based care-
giver interventions and respite services, and
link families to such resources as home care,
medication and fi nancial assistance, transpor-
tation, and social supports.
Case Management and Coordination
of Care
Case management has long been a critical role
for oncology social workers. Given their pro-
fessional skills in working with multiple com-
munity and institutions, social workers are
well suited to assist cancer patients in mak-
ing transitions between care settings as they
recover, receive rehabilitation, or need addi-
tional medical and psychosocial assistance.
Social workers, who have long practiced in the
context of community and institution-based
health-care teams, bring well-established skills
of collaboration, advocacy, and leadership to
their work with physicians, nurses, and allied
health professionals (Raveis et al., 2010). Care
coordination and case management require
collaboration across multiple settings (e.g.,
hospital, home, long-term care) to support pa-
tients and families through the course of their
illness. In an increasingly fragmented health-
care environment, case managers ensure
integration across health-care settings and pro-
mote continuity of care that benefi ts patients,
families, and health-care teams. Oncology
social workers support timely and effective
discharge planning by coordinating services
among various providers and settings; manag-
ing insurance and helping to access eligible
benefi ts; providing transportation services and
family and community support and services;
and procuring equipment and services to sup-
port home-based care.
Patient Education
Throughout the course of disease, oncology
social workers are involved in educating pa-
tients and their families about cancer and
its anticipated disease trajectory, treatment,
common psychosocial responses, community
resources, and symptom management. Oncol-
ogy social workers help families to access re-
liable resources online and in the community
(AOSW, 2010). Through ongoing guidance,
clarifi cation, and psychoeducation, oncology
social workers provide cancer patients and
their caregivers with tools to navigate health-
care and social service systems and teach
them strategies for communication, problem
solving, and decision making around patients’
changing needs, concerns, and preferences
(Glajchen, 2004; Hermann & Carter, 1994).
Oncology social workers empower patients
and families to be more engaged in their care
by helping them ask to questions and make in-
formed decisions about all aspects of medical
treatment. Changing medical technology has
opened new areas of decision making, such
as reproductive choices prior to treatment. An
example is whether to harvest eggs or collect
sperm prior to radiation therapy for later use.
Although such procedures are costly (Keene et
al., 2000; Richardson & Sanchez, 1998), they
have the potential to provide the cancer patient
with some control over future family planning.
Furthermore, social workers encourage adult
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Oncology Social Work 517
survivors to seek accurate information about
their own fertility as well as cancer-related
pregnancy risks for themselves and their off-
spring. For survivors, obtaining accurate in-
formation can signifi cantly reduce ongoing
distress and damage to self-esteem (Zebrack
& Chesler, 2001).
Palliative and End-of-Life Care
Oncology social workers are aware of transi-
tions at the end of life and with services to
control pain and discomfort for chronically
and terminally ill cancer patients. Hospice is
an innovative model of care that assumes pri-
mary management of dying patients care to
provide state-of-the-art medical care and pain
management to reduce physical, psychologi-
cal, and spiritual suffering in the last months
of life. Palliative care teams and programs pro-
vide integrated and holistic care at any point
during a serious chronic illness, with the aim
of enhancing patient autonomy and function-
ing, managing pain and other symptoms, and
working to improve the quality of care and
quality of life for seriously ill and dying in-
dividuals and their families. Unlike hospice,
palliative medicine often is provided simulta-
neously with curative treatment, until the pa-
tient’s condition improves or hospice services
are recommended (National Hospice and Pal-
liative Care Organization, 2010).
Although cancer mortality has decreased
(Altekruse et al., 2010), oncology social
workers should be skilled and comfortable in
working with patients who are chronically ill
and dying. In palliative and end-of-life care,
oncology social workers may serve as consul-
tants, mediators, and advocates on transdis-
ciplinary teams addressing complex ethical
dimensions of medical decision making, fam-
ily communication, and care preferences.
Requisite skills include psychoeducation for
families and patients about symptom manage-
ment and end of life, advanced care planning
and family therapy to help synchronize the pa-
tient’s end-of-life care preferences and wishes
with those of the family, and supportive coun-
seling around grief and bereavement (Blacker
et al., 2004).
Social workers are uniquely trained to ad-
dress complex ethical dilemmas involving in-
dividual autonomy and quality of life and to
mediate among the individual needs, perspec-
tives, values, and responsibilities of patients,
their family members, and health-care pro-
viders (Csikai, 2004). In the case of terminal
cancer, social workers may provide end-of-life
care to patients and family members by fa-
cilitating discussion of the patient’s end-of-
life wishes and supporting the selection of a
health-care proxy, if indicated. Finally, when
patients are dying, oncology social workers
can support families in funeral preparation and
providing bereavement counseling or bereave-
ment resources. See Chapters 22 and 23 for
more information about palliative and end-of-
life care.
Research on Evidence-Based Practice
An important way in which oncology social
workers can improve psychosocial care is by
engaging in research that addresses the cancer
experience for individuals and families across
the cancer care continuum (Brintzenhofszoc
et al., 1999; Clark, 2001; Institute for the Ad-
vancement of Social Work Research, 2003).
Social workers can conduct primary research
on the biopsychosocial aspects of cancer, with
the goal of enhancing our understanding of
patient and family needs, and developing and
evaluating psychosocial interventions. This
breadth of focus and the profession’s holistic
perspective of individual and family function-
ing makes social work research particularly
important in cancer care.
Social work research provides an opportu-
nity for producing evidence of the effective-
ness of social work and other interventions.
Important areas of inquiry include health sta-
tus and quality of life in cancer survivorship,
the interface of cancer and aging, the impact
of disparities and strategies to reduce these
disparities, improving the quality of care,
enhancing communications among families
and between patients and health-care provid-
ers, the needs of family caregivers, improv-
ing palliative care, behavioral interventions to
enhance cancer prevention and screening, and
JWBT514_ch19.indd 517JWBT514_ch19.indd 517 9/21/11 7:45 PM9/21/11 7:45 PM
518 Health Social Work: Selected Areas of Practice
identifying genetic contributions cancer and
treatment outcomes. Social workers have been
active in developing these interventions and
testing them for their effi cacy and effective-
ness. Social workers contribute to knowledge
building, too, by conducting primary research
on how the social environment contributes to
worse cancer outcomes (Gehlert et al., 2008).
CHALLENGES TO
ONCOLOGY SOCIAL WORK
Despite how much is known about the psy-
chological and emotional toll of living with
cancer, the health-care system has not ad-
dressed adequately the psychosocial concerns
of cancer patients, cancer survivors, and their
families. A report by the IOM (2007) suggests
that many health-care providers do not address
these concerns or consider psychosocial sup-
port to be an integral part of quality oncology
care. It is not surprising, therefore, that can-
cer patients and families often are dissatisfi ed
with the amount of supportive information and
psychosocial care that they receive from their
health-care teams and that they report that
their emotional, psychological, behavioral and
spiritual needs are largely unmet by the health-
care system (Christ, 2010; IOM, 2007).
Although transdisciplinary teams in oncol-
ogy settings are increasingly common, so-
cial workers are not always part of oncology
teams. The medical model traditionally has
focused primarily on biological and clinical
aspects of cancer to the exclusion of social
and psychological factors (IOM, 2007). Sig-
nifi cant changes in the treatment of cancer
and the structure and delivery of health care
also have complicated the work of social
workers in oncology. Traditional functions,
such as crisis and long-term counseling, case
management, and discharge planning become
problematic as inpatient stays are shortened.
Technological advances in genetic screening,
complex and specialized treatment options,
and life-sustaining technology, coupled with
a shift toward greater patient choice in treat-
ment decision making, simultaneously have
provided opportunities and placed additional
strains on individuals and families and present
important new roles for oncology social work-
ers. These developments in cancer care serve
as an impetus and opportunity for social work-
ers to develop innovative interventions to meet
the needs of their clients.
CONCLUSION
Social workers in oncology contribute signifi –
cantly to the provision of high-quality, fam-
ily-centered, biopsychosocial care for cancer
patients and their families in a wide variety of
settings. This subspecialty within health social
work includes many roles, such as helping pa-
tients and families to communicate with one
another and with providers about their needs
and care preferences and how to participate in
advance care planning. Oncology social work-
ers also help with decision making and serve
as advocates for patients and families within
the health-care system. Their distinct knowl-
edge, skills, and values make social workers
a resource for cancer patients, families, and
health-care teams.
Self-advocacy, a cornerstone of social work
practice, is essential for social workers in on-
cology to survive in the fi eld, both personally
and professionally (Stearns, 2001). Oncology
social workers who are hospital-based face the
effects of downsizing, and accessible psycho-
social resources continue to be scarce for can-
cer patients and their families in all domains.
Institutional and social advocacy on behalf of
the profession and clients is essential to main-
taining adequate and high-quality services
(Institute for the Advancement of Social Work
Research, 2003). Political activity and policy
development, particularly through or in part-
nership with national organizations, continues
to be a powerful tool for change to improve
the lives of our clients and to advance the
profession.
Given the high incidence of cancer and the
growing number of adult survivors, all social
workers should expect to work with at least
one person affected by cancer at some point in
JWBT514_ch19.indd 518JWBT514_ch19.indd 518 9/21/11 7:45 PM9/21/11 7:45 PM
Oncology Social Work 519
their careers. Discoveries in science and tech-
nology, early detection, cancer genetics, health
disparities, and translational research will con-
tinue to transform cancer into a chronic disease
that is managed primarily in the community
(NCI, 2010). Oncology social workers will be
at the forefront of addressing psychosocial and
spiritual concerns and enhancing quality-of-life
among cancer patients and their families, all done
through research, policy making, and practice.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 19.1
Using common genogram notation,* construct
a multigenerational genogram (for your family
or a client’s family) focused on experiences of
illness, family caregiving, and loss. Include at
least three generations.
1. Begin by adding basic demographic infor-
mation: dates of birth and death, marriage,
separation, and divorce; geographic loca-
tion; dates of immigration; and religious or
spiritual orientation.
2. Identify major illnesses or health-related in-
cidents. Include dates of onset, signifi cant
medical intervention (such as hospitaliza-
tion or surgery), and cause of death.
3. Add select family dynamics related to ill-
ness and caregiving roles, alliances, or
losses related to illness treatment or loss.
Refl ect on this genogram. Possible questions
to explore include:
• How do the etiology, treatment, and re-
quired care from physicians and family
caregivers impact coping and family life?
• How did the family adjust to the demands
of the illness? What was helpful in coping?
What might have facilitated greater coping?
• How did health or spiritual beliefs play into
the story of the disease?
Learning Exercise 19.2
One common psychosocial intervention to help
people coping with cancer is a support group.
These groups frequently are composed of par-
ticipants coping with different types of cancer
at various stages. Members bring unique family
and work concerns to the group for consider-
ation. The role of the oncology social worker
is to provide a safe place for participants to dis-
cuss these concerns, fi nd common elements in
their stories, and facilitate connections.
For this exercise, ask six students from the
class to role-play a session of such a support
group. Write descriptions of six roles, includ-
ing group facilitator and fi ve group partici-
pants, on slips of paper and place them, folded,
in a hat. The slips should include basic cancer
and demographic information. The volunteer
facilitator should not take on a role but should
come to the role-play with her own personal
history and lead the group as she would in a
real clinical setting.
Each student pulls one slip of paper from
the hat and then acts out that role for 15 min-
utes in a group role-play. Once the role-play
is complete, the students and facilitator should
take 10 minutes to process the experience of
leading, participating in, or observing the in-
teraction. Students should be encouraged to
provide constructive feedback to each other.
This activity can be modifi ed to address
different populations (e.g., family caregiv-
ers, children with cancer, siblings of cancer
patients, or bereaved adolescents).
SUGGESTED RESOURCES
Oncology Social Work Support
Organizations
American Psychosocial Oncology Society—
www.apos-society.org
* For guidance constructing a family genogram, refer
to information from your social work practice courses
or see R. Gerson, M. McGoldrick, and S. Petry (2008),
Genograms: Assessment and intervention, 3rd ed.
(New York, NY: Norton Professional Books).
ch19.indd 519ch19.indd 519 9/22/11 1:08 AM9/22/11 1:08 AM
http://www.apos-society.org
520 Health Social Work: Selected Areas of Practice
Association of Oncology Social Work—
www.aosw.org
Association of Pediatric Oncology Social
Worker—www.aposw.org
International Psycho-Oncology Society—
www.ipos-society.org/
Society of Behavioral Medicine—www
.sbm.org
National Cancer Organizations
American Cancer Society—www.acs.org
(800) ACS-2345
Cancer Care, Inc.—www.cancercare.org
(800) 813-HOPE
Cancer Support Community—www
.thewellnesscommunity.org (202) 659–
9709
National Cancer Institute—www.cancer
.gov (800) 4-CANCER
Professional Organizations and Support
Networks
American Society of Clinical Oncology—
www.asco.org
Association of Cancer Online Resources—
www.acor.org
Cancer News—www.cancernews.com
National Association of Social Workers—
www.naswwebed.org
Online continuing education.
National Center for Complementary and
Alternative Medicine—nccam.nih.gov
National Chronic Care Consortium—www
.nccconline.org
National Coalition for Cancer Survivor-
ship—www.canceradvocacy.org/
National Registry of Evidence-Based
Programs and Practices—www.nrepp
.samhsa.gov
Oncolink at the University of Pennsylvania
Cancer Center—www.oncolink.org
Resources for Family Caregivers
Caregiver Resource Directory—www
.stoppain.org/caregivers/resource_form
.html
National Alliance for Caregiving—www
.caregiving.org
National Family Caregiver Association—
www.nfcacares.org
U.S. Administration on Aging, National
Family Caregiver Support Program—
www.aoa.gov/aoaroot/aoa_programs
/oaa/resources/faqs.aspx#Caregiver
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Oncology Social Work 523
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526
20
Adherence and Mental Health
Issues in Chronic Disease:
Diabetes, Heart Disease, and
HIV/AIDS
WENDY AUSLANDER AND STACEY FREEDENTHAL
Direct practice issues increasingly present
challenges for social workers who treat people
with chronic disease. Rates of chronic disease
continue to grow, and psychosocial problems
often accompany or arise from chronic dis-
ease. People with chronic diseases face many
diffi culties maintaining sometimes complex
and burdensome treatment regimens. As mem-
bers of the health-care team who have exper-
tise in mental health and behavioral issues,
social workers are in a unique position to help
people who have a chronic disease.
This chapter provides an overview of
the epidemiology of heart disease, diabe-
tes, and human immunodefi ciency virus
(HIV)/acquired immunodefi ciency syndrome
(AIDS), three common chronic diseases that
social workers encounter within health-care
and community settings. Then it describes a
systematic practice model with which social
workers can promote patient adherence to
treatment, provides a review of strategies that
enhance patients’ recall of information, and
provides instructions for social workers to use
in their role as educators. Finally, the chap-
ter describes the relationship between mental
health problems and chronic disease etiology
and management.
Many other direct practice issues are im-
portant for social workers who treat persons
with chronic disease, such as family and indi-
vidual coping, social support, developmental
issues as they relate to illness and economic
and cultural factors that infl uence disease man-
agement; these issues are discussed in detail
elsewhere in this book (see Chapters 7, 10,
and 13).
Chapter Objectives
• Exhibit knowledge about the epidemiology
of heart disease, HIV/AIDS, and diabetes
in the United States, including racial and
ethnic disparities.
• Identify and assess psychosocial factors that
infl uence adherence to treatment among in-
dividuals with chronic disease.
• Incorporate a systematic model of adher-
ence counseling in practice with individuals
with chronic disease.
• Understand the importance of communi-
cation techniques in patient education and
adherence counseling for individuals with
chronic disease.
• Understand the relationship between men-
tal health and chronic disease.
CURRENT TRENDS IN THE
CARE OF PATIENTS WITH
A CHRONIC DISEASE
Signifi cant changes in the health status of
Americans have occurred within the past
century due to some relatively recent trends.
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 527
For one thing, individuals are living longer
than ever before. The average life span in the
United States increased by 27 years in the
past century—from 49.2 years in 1900 to 76.5
years in 2000 (Guyer, Freedman, Strobino, &
Sondik, 2000)—largely due to public health
measures such as vaccinations, antibiotics,
and other methods for controlling infectious
diseases (Centers for Disease Control and Pre-
vention [CDC], 1999a). A second trend is an
increase in the number of individuals living
with chronic diseases because of advances in
medical treatment and technology and the in-
creasing average life span. In addition, chronic
diseases have replaced infectious diseases as
the leading causes of death in the United States
(Guyer et al., 2000). For example, in 1900, the
top causes of death were pneumonia, tubercu-
losis, and intestinal problems such as diarrhea
(CDC, 1999b). Combined with diphtheria,
these acute diseases accounted for one-third of
all deaths in the United States (CDC, 1999b).
Today, heart disease, diabetes, and AIDS are
chronic diseases that are among the top causes
of death; heart disease is the number-one cause
of death in the United States, diabetes ranks
7th, and HIV/AIDS ranks 20th (CDC, 2010b)
Although still incurable, these diseases often
respond to medications, surgery, or other types
of medical management.
The increasing prevalence of chronic dis-
ease in the United States has led to a major
shift from viewing individuals as consumers
of health care to seeing them for what they
really are—providers of health care. Most of
the responsibility for preventing and manag-
ing chronic disease lies with the patient and
the patient’s family. Individuals with chronic
disease and their families are the members of
the health-care team who are most responsible
for the day-to-day activities necessary to carry
out treatment regimens. Because of this shift
in perspective, understanding how to promote
patient adherence to treatment has become in-
creasingly important in the past two decades.
In particular, diabetes, HIV/AIDS, and heart
disease are chronic diseases that, once di-
agnosed, require adherence to complex and
challenging treatment regimens. Prevention
of these diseases involves behavioral changes
such as weight loss, exercise, dietary changes,
and reduction of risky sexual behaviors, all of
which patients may have diffi culty maintain-
ing in the long term.
In addition to the importance of patient
adherence in chronic disease prevention and
management, three other issues related to
chronic disease are also important for social
workers to understand.
1. There are no known cures for chronic dis-
eases such as diabetes, heart disease, and
HIV/AIDS, and they are usually progres-
sive in nature. Unlike some disabilities or
acute illnesses, chronic diseases fl uctuate
in symptoms and disease-related compli-
cations. Disease-specifi c complications for
individuals with chronic disease can be
viewed as “predictable crises” (Hamburg
& Inoff, 1983) because they can cause a
state of anxiety and disequilibrium that is
expected, given what we know about how
the diseases progress.
2. Because of the progressive nature of chronic
disease, the patient and family must adjust
to continual treatment changes. For exam-
ple, new medications continually are being
developed that often subject the patient to
new side effects. The past few decades have
seen new medical technologies for the man-
agement of diabetes (e. g., insulin infusion
pumps and home glucose monitoring), yet
they all include some costs (e. g., fi nancial
and physical pain) along with the benefi ts
they provide for patients.
3. Because chronic diseases usually continue
throughout the patient’s lifetime, develop-
mental and lifestyle changes (such as preg-
nancy, puberty, divorce, or college) often
infl uence or pose additional challenges to
the person with a chronic disease.
Each of these challenges (i.e., disease, treat-
ment regimens, and developmental changes),
unique to chronic diseases, offers opportuni-
ties for social work intervention to promote
positive adaptation and management behaviors
among patients.
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528 Health Social Work: Selected Areas of Practice
EPIDEMIOLOGY OF
DIABETES, HEART DISEASE,
AND HIV/AIDS
Social workers encounter people with heart
disease, diabetes, and HIV/AIDS in virtually
all health-care settings, including emergency
rooms, hospitals, outpatient clinics, commu-
nity centers, hospices, nursing homes, and
rehabilitation centers. Before describing some
practice issues for social workers who work
with individuals who have been diagnosed
with diabetes, heart disease, and HIV/AIDS,
we fi rst present an overview of disease rates,
risk factors, racial and ethnic disparities and
other information related to these three major
killers in the United States and worldwide (see
Table 20.1).
Heart Disease: A Leading Killer
The term heart disease can refer to any of sev-
eral cardiac conditions including coronary ar-
tery disease, congestive heart failure, and heart
Table 20.1 Epidemiology of Chronic Diseases in the United States
Heart Disease Diabetes HIV/AIDS
Deaths (in 2007)a
Ranking 1 7 20b
Number 616,067 71,382 11,295
Percentage in the United States 25.4% 2.9% 0.5%
People living with disease 18 millionc 13.4 million (6.6%)d
16.7 million (8.3%)c
HIV: 800,000e
AIDS: 362,827d
Possible symptoms Chest pain or tightness
Shortness of breath
Fluid retention
Excessive thirst
Frequent urination
Extreme hunger
Unusual weight loss
Fatigue
Blurry vision
Rapid weight loss
Recurring fever or night
sweats
Profound fatigue
Swollen lymph glands
Chronic diarrhea
Pneumonia
Risk factors Diabetes
High cholesterol
High blood pressure
Smoking
Physical inactivity
Obesity
Older age
Family history
Type 2 only
Obesity
Physical inactivity
Older age
Family history
Black, Hispanic, or
American Indian/Alaska
Native
High blood pressure
Unprotected sex
Injection drug use
Preventive measures Exercise
Diet rich with fi ber, fruits,
and vegetables
No smoking
Type 2 only
Weight control
Healthy diet
Condom use
Clean needles
Blood donor screening
aFrom “WISQARS Leading Cause of Death Reports: 1981–1998,” by Centers for Disease Control and Prevention (2010b),
retrieved from http://webappa.cdc.gov/sasweb/ncipc/leadcaus9.html
bHIV ranks as the 8th leading cause of death for the 15- to 54-year-old age group.
cFrom “Prevalence of Diabetes and Impaired Fasting Glucose in Adults: United States, 1999–2000,” by C. C. Cowie, K. F.
Rust, D. Byrd-Holt, M. S. Eberhardt, S. Saydah, L. S. Geiss, et al., 2003, Morbidity and Mortality Weekly Report, 52,
pp. 833–837.
dFrom Summary Health Statistics for U.S. Adults: National Health Interview Survey, 2002 (DHHS Publication No. PHS
2004–1550), by U.S. Department of Health and Human Services, 2004, Hyattsville, MD: Author.
eFrom HIV/AIDS Surveillance Report, 13th ed. (pp. 1–44), Centers for Disease Control and Prevention, 2001. Atlanta, GA:
Author.
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http://webappa.cdc.gov/sasweb/ncipc/leadcaus9.html
Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 529
attack. Heart disease itself is a type of cardio-
vascular disease, along with hypertension and
stroke. Stroke also is a major leading cause of
death in the United States and results from the
brain being deprived of oxygen, usually due to
plaque in the arteries (CDC, 2010b). Although
stroke and hypertension are themselves impor-
tant public health problems, this section fo-
cuses only on chronic diseases directly related
to the heart (see Table 20.2).
Gender
Many people mistakenly believe that heart
disease primarily affects men, when in fact
men have experienced a decline in heart fa-
talities in recent years. However, the rate of
heart disease in women continues to increase
(American Heart Association, 2002), and
heart disease has become the leading cause of
death for women (CDC, 2010b). Hormones,
particularly estrogen, appear to protect many
women from heart disease until after meno-
pause, although a causal relationship is not
certain (Barrett-Connor, 2003). Research in-
dicates that hormone replacement therapy
for postmenopausal women actually may in-
crease the risk of heart disease (Manson et al.,
2003). This negative effect may increase with
age, with estrogen having a positive effect in
the years immediately following menopause
(Manson et al., 2007).
Racial and Ethnic Disparities
Like diabetes and HIV/AIDS, heart disease
disproportionately affects certain racial and
ethnic minority groups. Of the 700,000 people
who died of heart disease in the U.S. general
population in 2007, 19.5% were younger than
65 years (CDC, 2010b). Yet among American
Indians and Alaska Natives, 38.1% of people
who died of heart disease were younger than
65 years (CDC, 2010b). The rates were 35.4%
and 26.5% for African Americans and His-
panic Americans, respectively (CDC, 2010b).
The reasons for these disparities are not fully
understood but may include factors such as dif-
ferences in access to medical and emergency
care, diet, exercise, risk behaviors such as
smoking, and health behaviors such as check-
ing blood pressure regularly. For example, the
proportion of American Indians who smoke
is twice that of White Americans; African
Americans are more likely than White Ameri-
cans to have high blood pressure; and African
Americans, American Indians, and Hispanic
Americans are more likely than White Ameri-
cans to lack health insurance coverage (Bolen,
Rhodes, Powell-Griner, Bland, & Holtzman,
2000). Physician bias also may contribute to
racial and ethnic disparities in heart disease
fatalities. In an experiment using videotaped,
hypothetical case scenarios, physicians were
almost twice as likely to recommend a heart
Table 20.2 Major Types of Heart Disease
Name Description
Coronary artery disease Arteries become hardened and narrowed by plaque
(arteriosclerosis), decreasing blood fl ow to the heart and
oxygen to the heart muscle.
Acute myocardial infarction (“heart attack”) A blood clot cuts off blood to part of the heart, resulting in
damage to the heart muscle and sometimes death.
Congestive heart failure The heart fails to pump blood effectively, resulting in shortness
of breath, fl uid retention, and fatigue.
Congenital heart defects The heart or blood vessels around the heart failed to develop
properly at birth.
Cardiomyopathy The heart muscle is weakened.
Angina Chest pain or discomfort is caused by the heart not getting
enough blood, usually as a result of arteriosclerosis (hardening
of the arteries).
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530 Health Social Work: Selected Areas of Practice
procedure to White Americans and men than
to African Americans and women despite
identical symptoms among all the characters
(Schulman et al., 1999).
Diabetes: A Global Epidemic
Diabetes mellitus affects the body’s ability to
metabolize blood glucose (sugar). A healthy
person’s pancreas produces suffi cient insulin
for cells to absorb and convert food into blood
sugar. With diabetes, the person’s body either
fails to use insulin properly or produce it at all.
Many people with diabetes must therefore limit
their sugar intake or take insulin by either giv-
ing themselves injections or using an insulin
infusion pump. When diabetes is uncontrolled
and blood sugar levels get too high (hypergly-
cemia), the individual may experience short-
ness of breath; nausea; vomiting; excessive
thirst; and a life-threatening, precoma condi-
tion called diabetic ketoacidosis. Controlled
diabetes always carries the risk of hypogly-
cemia (low blood sugar) caused by too much
insulin or medication. Symptoms and signs of
hypoglycemia include shakiness, irritability,
heart palpitations, hunger, and sweating. Left
untreated, severe hypoglycemia can lead to
loss of consciousness, seizures, and coma.
Most people with diabetes live and function
for many years with the disease. Many people
with diabetes are not even aware they have
it because the onset of symptoms is gradual.
Yet diabetes can take an enormous toll on a
person’s health and quality of life. People
with diabetes commonly develop an array of
complications that can include cardiovascu-
lar disease, vision problems (including blind-
ness), amputations, kidney failure, and nerve
damage. Ultimately, diabetes can be fatal. It
ranked as the seventh leading cause of death in
the United States in 2007, resulting in 71,382
deaths (CDC, 2010b). Mortality rates under-
estimate the true extent of diabetes’s lethality
because the damage it exacts on lungs, tissues,
and organs contributes to other major causes
of death—heart disease, stroke, and kid-
ney disease, to name a few (National Center
for Health Statistics [NCHS], 2010). Half of
people with diabetes eventually die of heart
disease or stroke (World Health Organization
[WHO], 2009a).
Types of Diabetes
There are four major types of diabetes. Type
1 diabetes, formerly called juvenile diabetes,
frequently is diagnosed in children and young
adults and accounts for 5% to 10% of all dia-
betes cases (National Institute of Diabetes and
Digestive and Kidney Diseases [NIDDK],
2008). Type 1 diabetes is an autoimmune dis-
ease, whereby a person’s immune system inap-
propriately attacks necessary tissues. In type 1
diabetes, the immune system destroys the cells
that produce the hormone insulin, which me-
tabolizes blood sugar. People with type 1 dia-
betes must take insulin every day, sometimes
before every meal, via injections or an insulin
infusion pump.
Type 2 diabetes accounts for 90% to 95%
of all diabetes cases (NIDDK, 2008). In type
2 diabetes, formerly called adult-onset diabe-
tes, the body still may produce insulin, but the
body’s cells cannot absorb it. Eventually the
pancreas may lose the ability to produce insu-
lin altogether. This type of diabetes frequently
is associated with being overweight and physi-
cally inactive. Many people with type 2 dia-
betes control their blood sugar by managing
their diet, losing weight, exercising regularly,
and taking oral medications. Roughly 10% to
15% of people with type 2 diabetes require in-
sulin, either alone or in combination with oral
medication (NIDDK, 2008).
Gestational diabetes is a form of glucose
intolerance that occurs in about 14% of women
during pregnancy (Kim, Newton, & Knopp,
2002). The condition typically disappears after
childbirth, but various studies have shown that,
2.6% to 7% of women with gestational diabe-
tes develop type 2 diabetes (Kim et al., 2002).
Other types of diabetes include conditions
caused by genetic defects, drug use, infection,
or less common forms of autoimmune illness
(American Diabetes Association, 2004). These
types of diabetes are the least common, mak-
ing up only 1% to 5% of diabetes cases in the
United States (NIDDK, 2008).
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 531
Epidemiology
Diabetes has been diagnosed in more than
17.9 million people in the United States, and
an additional 5.7 million people are believed
to have diabetes without being aware of their
condition (NIDDK, 2008). Diabetes rates have
increased substantially in recent years, includ-
ing a 50% increase in the United States from
1997 to 2004 (CDC, 2006). Rates are increas-
ing so rapidly nationally and worldwide that
the WHO regards it as an epidemic with pre-
mature deaths of a similar magnitude, although
less recognized, to HIV/AIDS (WHO, 2004).
More than 1.1 million people worldwide died
from diabetes in 2005 (WHO, 2009a). About
220 million people worldwide have been di-
agnosed with diabetes (WHO, 2009a), and the
number is expected to increase to 366 million
by 2030 (Wild, Roglic, Green, Sicree, & King,
2004). The number of Americans with diabe-
tes is expected to grow to 38 million during the
same time period (Mainous et al., 2007).
Risk Factors
Type 2 diabetes is considered to be largely pre-
ventable. The increasing prevalence of type 2
diabetes parallels increases in obesity, sugar
and fat consumption, and physical inactivity
in today’s society (Mokdad et al., 2000). Dia-
betes is almost twice as common in developed
countries than in developing countries (Black,
2002), refl ecting the excess fat consumption
and lack of exercise that often accompany
higher socioeconomic status.
Racial and Ethnic Disparities
People from certain racial and ethnic minor-
ity groups are especially vulnerable to diabe-
tes (Black, 2002). Compared to non-Hispanic
White populations, Hispanic people in the
United States are 1.5 times more likely to
have diabetes, African Americans are 1.6
times more likely, and American Indians and
Alaska Natives are 2.3 times more likely
(CDC, 2004a). For example, almost 1 in 4 Af-
rican American women between the ages of 65
and 74 years have diabetes (Tull & Roseman,
1995). In some areas of the country, more than
1 in 3 American Indians have type 2 diabetes
(Lee et al., 2000). Pima Indians in southern
Arizona have the highest rate of diabetes in
the world, with 1 of every 2 tribal members
diagnosed with the disease (Black, 2002;
Knowler, Saad, Pettitt, Nelson, & Bennett,
1993). The higher rates of diabetes among mi-
norities are attributed to having less access to
health care and genetic differences in glucose
tolerance in addition to the other primary risk
factors of diabetes, including higher rates of
obesity and inactivity (Black, 2002).
Racial and ethnic minorities in the United
States also tend to suffer greater negative ef-
fects from diabetes than White Americans. For
example, compared to White Americans in the
United States, rates of death attributable to
diabetes among African Americans and His-
panic Americans are twice as high and, among
American Indians, 3 times as high (CDC,
2000).
HIV/AIDS: FROM TERMINAL
ILLNESS TO CHRONIC
DISEASE
HIV and AIDS are two different but overlap-
ping disorders. HIV infects the body’s immune
system, in particular cells called T4 lympho-
cytes (T cells), which protect the body against
infection and other threats. AIDS is the most
advanced stage of HIV infection and is defi ned
as a specifi c group of diseases or conditions
that severely suppress the body’s immune sys-
tem (CDC, 2001). An HIV-positive person is
diagnosed with AIDS when he or she has fewer
than 200 T cells per cubic millimeter of blood,
in comparison to levels of more than 1,000 in
healthy adults (National Institute of Allergy
and Infectious Diseases [NIAID], 2003). It
can take 10 or more years for an HIV-positive
person to develop AIDS (NIAID, 2003). This
lag time makes the virus especially dangerous,
because infected individuals may unknow-
ingly pass HIV to others.
HIV is transmitted through contact with
infected blood, which can occur from sexual
contact, sharing needles, or blood transfusions.
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532 Health Social Work: Selected Areas of Practice
Women also can pass the virus on to their in-
fants during pregnancy, birth, or breast milk.
The use of condoms during sexual intercourse
may prevent the transmission of HIV. Public
health approaches to preventing HIV include
screening blood donations, promoting non-
sharing of needles, and distributing free con-
doms on college campuses.
Epidemiology
The fi rst case of AIDS was reported in 1981
in the United States (NIAID, 2003). Within
just four years, AIDS was diagnosed in 16,000
people in the United States, 8,000 of whom
died (Center for Infectious Diseases, 1985). A
diagnosis of HIV or AIDS used to be a virtual
death sentence. The median survival time for
a person in the United States newly diagnosed
with AIDS in the mid-1980s was 11.6 months
(Jacobson et al., 1993). No effective treat-
ments existed, and patients’ suppressed im-
mune systems made them vulnerable to dying
from infections not typically deadly among
young individuals, such as pneumonia.
The death rate from HIV/AIDS in the
United States slowed in 1996, when patients
began taking potent medications called highly
active antiretroviral therapy (HAART). This
therapy combines different types of medica-
tions in what is frequently called a drug cock-
tail. The medications in a drug cocktail are
reverse transcriptase inhibitors, which prevent
the virus from making copies of itself, and
protease inhibitors, which control the enzyme
in HIV that spreads infectious viral particles.
Antiretroviral therapy does not cure HIV or
AIDS, but it does reduce the amount of virus
and prolong both the quality and length of
life. After the introduction of antiretroviral
therapy in the United States, deaths from HIV
declined dramatically—from 31,130 deaths in
1996 to 16,516 in 1997 (CDC, 2010b). That
same year, HIV/AIDS fell out of the top 10
causes of death. A study of AIDS deaths in 12
high-income countries found that antiretrovi-
ral therapy reduced mortality by 85% overall
(Bhaskaran et al., 2008).
In recent years, AIDS deaths in the United
States have consistently declined, dropping
from 14,478 deaths in 2000 to 11,295 in 2007,
the most recent year with available statistics
(CDC, 2010b). Most deaths from AIDS occur
in younger people; among youth and adults age
15 to 54 years, HIV is the eighth leading cause
of death in the United States (CDC, 2010b).
AIDS Worldwide: A Leading Cause
of Death
At least 20 million people worldwide have
died from AIDS since the very fi rst case was
reported almost 30 years ago (Joint United Na-
tions Programme on HIV/AIDS [UNAIDS],
2004). HIV/AIDS now ranks as the sixth lead-
ing cause of death worldwide (WHO, 2008).
The devastation is enormous, particularly in
southern Africa, which accounts for 22 million
of the world’s 33 million AIDS cases (WHO,
2009b). In 2008 alone, 1.4 million people
in southern Africa died of AIDS (UNAIDS,
2009). New, potent antiretroviral medications
have only recently become available to people
in these poorer countries; only 7% of south-
ern Africans with HIV received antiretroviral
medications in 2003, compared with 48% in
2008 (UNAIDS, 2009). Furthermore, rates of
HIV continue to increase. In 2008, an esti-
mated 2.7 million people in the world acquired
HIV (UNAIDS, 2009).
Almost all new HIV infections occur in the
world’s developing countries, and they spread
most commonly through heterosexual con-
tact. In Africa, more than 80% of HIV infec-
tions among women result from heterosexual
contact, and the remainder are transmitted
from mother to child or via blood transfusion
(Lamptey, 2002).
Gender and AIDS
For many years, AIDS was identifi ed in the
United States, often pejoratively, as a “gay
disease” because the majority of AIDS-
related cases occurred among men who had
sex with men without using a condom to
protect against sexually transmitted diseases
(CDC, 2001; Herek & Glunt, 1988). Yet
even from its earliest days, the disease also
claimed the lives of women who had sex with
HIV-positive men, infants and children born
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 533
to mothers who had AIDS, people who re-
ceived tainted blood transfusions, and people
who used injectable drugs and shared con-
taminated needles.
The disease still disproportionately affl icts
men who have sex with men in the United
States, but that is changing. In 2008, one-
third of people newly infected with AIDS
contracted the disease through heterosexual
contact (CDC, 2010a). Nationally, HIV is
more common among men than women,
with 75% of cases occurring in men (CDC,
2010a). Worldwide, almost half of all people
with AIDS are female, and heterosexual con-
tact is the primary means of infection (UN-
AIDS, 2009). For example, 60% of people
infected with HIV in southern Africa are
women and girls (UNAIDS, 2009). Gender
inequalities, especially including violence
against women, are blamed for women’s dis-
proportionate burden of the disease in Africa
(UNAIDS, 2009).
Racial and Ethnic Disparities
In wealthier, industrialized countries such as
the United States, deaths from AIDS have
dropped for all racial and socioeconomic
groups since antiretroviral therapies began, but
the progress has been smaller for some vulner-
able groups. The decline in deaths was lowest
among African American women and highest
among White American men and residents of
more affl uent areas (Karon, Fleming, Steketee,
& DeCock, 2001). Furthermore, HIV rates are
increasing among African Americans, Asian
Americans, and American Indians (CDC,
2010a). Although African Americans make up
13% of the U.S. population, they accounted for
52% of all new HIV infections in 2008 (CDC,
2010a). A study of 38 states that keep track of
HIV cases found that the highest rates of HIV
infection occur among African Americans
(CDC, 2010a). The disparities largely refl ect
differences in HIV-testing patterns and access
to new drugs (Karon et al., 2001). Minorities,
women, and people with low income may be
less likely to have access to and receive ef-
fective therapy for HIV and AIDS (Andersen
et al., 2000).
AIDS in the United States: A
Continuing Public Health Problem
Although more people with HIV and AIDS
in the United States survive and function well
with antiretroviral therapy, the conditions still
represent major, national public health prob-
lems (Arias, Anderson, Kung, Murphy, & Ko-
chanek, 2003). Even though AIDS deaths have
declined, the number of HIV cases reported
each year continues to grow (CDC, 2010b).
HIV primarily affects young people, espe-
cially minorities. Medical researchers caution
that the new drug therapies have resulted in
treatment-resistant types of HIV. Even when
the drug cocktails are effective and acces-
sible, many people fail to take them properly
because of complicated dosing regimens and
side effects (Conway, 2007; Fleming, Wortley,
Karon, DeCock, & Janssen, 2000). Immedi-
ate side effects can include rash, recurrent or
chronic diarrhea, vomiting, and fatigue; long-
term effects can include pancreatic, liver, and
kidney dysfunction (Sax & Kumar, 2004).
Although some writers disagree (e.g., Elford,
2006), others have suggested that the new, ef-
fective treatments lead to complacency among
high-risk groups who used to protect them-
selves against HIV infection (Fleming et al.,
2000). For these reasons, social workers in
health-care settings will continue to encoun-
ter people who are HIV-positive or living with
AIDS.
ADHERENCE TO
TREATMENT REGIMENS
The successful management of diabetes, heart
disease, and HIV/AIDS depends largely on
the extent to which patients adhere to and take
responsibility for their treatment regimens. As
such, facilitating patient adherence to medical
regimens has emerged as an important function
for the social worker on the health-care team.
Adherence is defi ned broadly as the extent to
which a patient’s behavior corresponds with
medical advice (Meichenbaum & Turk, 1987).
Although the terms adherence and compliance
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534 Health Social Work: Selected Areas of Practice
sometimes are used interchangeably, adher-
ence implies an active and collaborative role
with health-care professionals whereas com-
pliance connotes a more passive, submissive
role. Treatment effectiveness for many chronic
diseases, such as diabetes, heart disease, and
HIV/AIDS, is strongly infl uenced by the pa-
tient’s willingness and ability to adhere to a
complicated medical regimen.
For example, the diabetes treatment regi-
men involves multiple daily insulin injections
or use of an insulin infusion pump for type 1
diabetes or oral medications for type 2 diabe-
tes, frequent daily blood glucose testing, ad-
herence to a meal plan, and a regular exercise
program. Adherence to treatment for heart dis-
ease involves diet and exercise as well as oral
medications, blood pressure and lipid monitor-
ing, and regular visits to the cardiologist for
routine stress tests and electrocardiograms. For
HIV/AIDS, adherence to preventive behaviors
(e.g., use of condoms and clean needles) is
necessary to reduce the risk of transmission
or infection; once infected, adherence to treat-
ment is critical for slowing progression and
delaying complications of HIV. Current treat-
ment guidelines for HIV recommend HAART,
a complex regimen of usually three or four an-
tiretroviral drugs (Deeks, Smith, Holodniy, &
Kahn, 1997).
The magnitude of nonadherence to medical
regimens has been studied for decades. In a re-
view of 50 years of research across 569 stud-
ies, nonadherence ranged from 4.6% to 100%,
with an average of 75.2% (DiMatteo, 2004). In
this review, adherence was signifi cantly higher
in more recent smaller studies, those involving
pharmacological treatment rather than modi-
fi ed health behaviors, and populations with
greater resources such as higher education and
income. The IOM revealed that approximately
90 million adults have low literacy, the literacy
profi ciency needed to understand and respond
to health information (Kindig, Nielsen-
Bohlman, & Panzer, 2004). Individuals with
low income, ethnic minorities, and those who
live in rural areas are more likely to face health
literacy barriers (Kirsch, Jungeblut, Jenkins &
Kolstad, 1993).
Many studies have examined the correlates
or predictors of adherence among individuals
with diabetes, heart disease, and HIV/AIDS,
such as familial, mental health, health beliefs,
literacy, and demographic factors (Anderson,
Auslander, Jung, Miller, & Santiago, 1990;
Auslander, Thompson, Dreitzer, White, &
Santiago, 1997; DiMatteo, Haskard, & Wil-
liams, 2007; Frain, Bishop, Tschopp, Ferrin,
& Frain, 2009; Glasgow & Toobert, 1988;
Jacobson et al., 1990). Results from several
studies indicate that the degree of adherence
to one aspect of the diabetic regimen is un-
related to adherence to other aspects of the
regimen (Glasgow, Wilson, & McCaul, 1985).
These data suggest that there are multiple in-
fl uences on patient adherence and highlight
the complexities involved in facilitating be-
havioral changes among individuals with
chronic disease.
More recently, there has been an increase
in the number of studies about adherence to
HAART in patients infected with HIV. This
is due in part to the fact that effective treat-
ment requires at least a 95% adherence rate
to HAART to reduce viral loads and pre-
vent drug-resistant HIV variants (Chesney,
2003). Because nonadherence among these
patients can increase the risk of death sig-
nificantly, studies have focused on the bar-
riers to adherence as well as factors that
promote adherence behaviors (Chesney,
2003; Garcia & Cote, 2003; Steele &
Grauer, 2003). Identified barriers to adher-
ence include complicated dosing schedules
and food restrictions, medication side ef-
fects, psychosocial issues (i.e., substance
abuse, depression, stress), and unsupportive
relationships with providers (Altica, Mosta-
shari, & Friedland, 2001; Chesney, 2003;
Gonzalez et al., 2004).
Likewise, a review of the literature on the
antecedents of adherence of cardiovascular
risk reduction (Cohen, 2009) indicated that the
collaborative relationship between the practi-
tioner and patient is very important. Adherence
is infl uenced by perception of personal risk,
decision support, motivation, self-effi cacy, and
credible health information.
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 535
Systematic Model of Adherence
Counseling
Many studies have evaluated the effi cacy or
effectiveness of interventions designed to im-
prove adherence to treatment regimens, par-
ticularly for patients with diabetes and HIV/
AIDS (Anderson, Brackett, Ho, & Laffel,
1999; Smith-Rogers, Miller, Murphy, Tanney,
& Fortune, 2001; Wysocki et al., 2000), and
there are numerous systematic reviews of
adherence interventions (van Dulmen et al.,
2007). Yet few studies have specifi ed the pro-
cesses of adherence counseling that are com-
mon across these interventions. The adherence
counseling process described in this chapter is
not an evidence-based intervention, but rather
a comprehensive and systematic overview of
strategies that have been shown to improve ad-
herence in clinical settings (Auslander, 1993;
Auslander, Bubb, Peelle, & Rogge, 1989;
Bubb, Auslander, & Manthei, 1989; Lorenz
et al., 1996). The approach has a cognitive-
behavioral orientation and integrates classic
works by Becker (1974; Becker & Maiman,
1980), Meichenbaum and Turk (1987), and
Marlatt and Gordon (1985). Typically, evi-
dence-based interventions to improve adher-
ence target a portion of the behavioral change
strategies outlined in this model, such as en-
couraging peer and family support, assessing
and modifying health beliefs, or encourag-
ing joint decision making. In practice, social
workers often use all of the strategies, either
singly or in various combinations, depending
on the adherence-related problem. As shown
in Table 20.3, adherence counseling includes
four distinct phases that the social worker im-
plements: (1) assessment and identifi cation of
adherence problems, (2) planning the medical
treatment regimen, (3) facilitating behavioral
change, and (4) maintaining patient adherence.
Phase 1: Assess and Identify
Adherence Problems
The assessment phase focuses on those fac-
tors that are most likely to infl uence adher-
ence. Clinical experience and health behavior
research have identifi ed several areas that are
associated with a patient’s willingness and
ability to follow a treatment regimen (Marlatt
& Gordon, 1985; Meichenbaum & Turk,
1987). These areas include social support,
lifestyle, fi nancial status, psychological well-
being, health beliefs, past adherence history,
and satisfaction with the treatment regimen
(see Table 20.3). Assessment of these fac-
tors provides information that is important
in developing a realistic treatment plan de-
signed to increase the probability of regimen
adherence.
Social Support. The family assessment is
designed to identify family strengths and risk
factors associated with adherence. The family
assessment should include: (a) the family’s so-
cial and economic status; (b) the family’s will-
ingness to be supportive and competence to do
so (i.e., family member’s disease knowledge,
technical skills, ability to learn, problem-solv-
ing ability, and organizational skills); (c) fam-
ily stressors, such as divorce, remarriage, loss
of a job, a new baby, or a death in the family;
and (d) observation of family interactions to
gain information about the family’s ability to
work together and resolve confl ict. This is an
important area, given the wealth of research
that shows signifi cant associations between
family characteristics and adherence (Ander-
son et al., 1990; Glasgow & Toobert, 1988;
Thompson, Auslander, & White, 2001a,b). Pa-
tients spend a great deal of their time at work
or school, and, as at home, they need coop-
eration from those around them to create an
environment that promotes adherence. Patients
also need competent assistance in the case of
a medical emergency. Therefore, it is crucial
to assess the extent of support available from
friends, teachers, coworkers, employers, and
others outside of the family.
Lifestyle/Daily Schedule. Assessment of pa-
tients’ and families’ daily routines frequently
reveals confl icts between lifestyle and treat-
ment regimens that can undermine or prevent
adherence. The lifestyle/daily schedule assess-
ment can be accomplished by asking the pa-
tient to recall the events of a typical day, hour
by hour, from waking until bedtime, as well
as asking her to describe how weekends differ
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536 Health Social Work: Selected Areas of Practice
from weekdays. This methodology, a 24-hour
recall, has been widely used in research to as-
sess adherence to diet in patients with diabetes
and heart disease (Anding, Kubena, McIntosh,
& O’Brien, 1996; Johnson, Perwien, & Silver-
stein, 2000). Often, knowledge of the small
details of a patient’s life will lead to the under-
standing of major adherence problems.
Psychological Factors. As discussed earlier
in this chapter, several psychological problems
have been associated with adherence to medi-
cal regimens: depression (Anderson, Freed-
land, Clouse, & Lustman, 2001; Lustman et
al., 2000; Starace et al., 2002), anxiety disor-
ders (Anderson et al., 2002), eating disorders
(Jones, Lawson, Daneman, Olmsted, & Rodin,
2000), and substance use (Arnsten et al.,
2002). It is critical to assess for psychological
factors, because many of these conditions may
adversely affect adherence.
Beliefs. In his Health Belief Model, Becker
(1974; Becker & Maiman, 1980) suggested
that patients’ health-related decisions and
behaviors are infl uenced more by personal
medical experiences, beliefs, and attitudes
than by recommendations from health-care
professionals. It is important for members of
the health-care team to understand a patient’s
health beliefs so they can correct misinforma-
tion and misconceptions that could undermine
adherence. Becker’s model points to several
key assessment areas: (a) the patient’s beliefs
about whether the disease is serious enough
to warrant the effort involved in following the
treatment regimen, (b) the patient’s beliefs
about the probability of the treatment regimen
improving the medical condition, and (c) the
patient’s beliefs about the likelihood that the
benefi ts of treatment will outweigh the diffi –
culties and inconveniences of adherence.
Adherence History/Treatment Satisfac-
tion. A review of the patient’s past adherence
performance is important because practitio-
ners consider past adherence behaviors good
predictors of future adherence. Adherence
behavior patterns can be assessed by asking
the patient specifi c questions about how often
he follows each aspect of his prescribed regi-
men. For example, the patient can be asked
how frequently during the previous day, week,
or month he exercised. It also should be de-
termined when and where adherence is most
Table 20.3 Adherence Counseling for Chronic Disease Management
Phase 1: Patient and Family Assessment
Lifestyle and daily schedule.
Psychological factors.
Health beliefs.
Prior adherence history and treatment satisfaction.
Phase 2: Planning the Treatment Regimen
Promote a realistic medical regimen.
Encourage patient participation in regimen planning.
Facilitate communication.
Encourage joint decision making.
Phase 3: Facilitate Behavioral Change
Initiate new behaviors.
Translate treatment goals into behavioral goals.
Encourage self-management strategies.
Teach patients to plan for high-risk situations.
Activate social support.
Family support. Increase family involvement, promote shared responsibility.
Strengthen emotional support.
Social support outside of the family. Enhance patient’s ability to activate social and medical support
Phase 4: Strategies for Long-Term Adherence
Develop skills for maintaining adherence.
Teach how to cope with lapses in adherence.
Increase accessibility to health care.
Reinforce positive health-care behaviors.
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 537
diffi cult. During the assessment of the pa-
tient’s adherence history, the social worker
also can identify why the patient did not follow
a specifi c area of treatment. The social worker
can determine if, for example, nonadherence
resulted from the patient’s misunderstanding
of the prescribed regimen. In the assessment
of prior adherence history, it is important to
determine the patient’s satisfaction with his
adherence performance. If the patient is dis-
satisfi ed with his performance, he already may
have a plan and be motivated to change ad-
herence behaviors. In contrast, if the patient is
nonadherent according to the assessment but
satisfi ed with his performance, his readiness to
change will be limited. This situation demands
renegotiation of treatment goals between the
health-care provider and patient, which is dis-
cussed in Phase 2.
Phase 2: Plan the Medical
Treatment Regimen
Social workers must take an active role in
treatment planning because they often can en-
hance the plan’s effectiveness and increase pa-
tient adherence by ensuring that psychosocial
and behavioral factors are not overlooked or
disregarded.
Promote the Development of a Realistic
Medical Regimen. By encouraging patients
and health-care professionals to utilize the
social worker’s adherence assessment, a medi-
cal regimen can be developed that is feasible
for a patient in terms of her life. Patients are
more likely to be adherent if their regimens
are tailored to their specifi c lifestyle, behav-
ioral changes are minimized, and convenience
is enhanced (Chesney, 2003; DiMatteo, 2004).
Encourage Patient Participation in Regi-
men Planning. Adherence can be enhanced by
developing individualized medical regimens
that refl ect patient preference. It is important
that the social worker urge the health-care
team to actively involve the patient in treat-
ment planning and to seriously consider the
patient’s desires and expectations. The social
worker should ensure that the patient has been
informed of all treatment options, including
the risks and benefi ts of each option.
Facilitate Communication. Several research
studies have found positive correlations be-
tween a physician’s communication style and
the patient’s comprehension, satisfaction, and
adherence (Roter & Hall, 1997). Physicians
and other health-care providers may commu-
nicate more effectively with a patient after the
social worker consults with the health-care
team regarding the patient’s individual life
demands and adherence diffi culties. Patients,
too, must be willing to listen to and understand
their health-care providers. To ensure accurate
understanding, social workers should encour-
age health professionals routinely to ask pa-
tients to restate important medical information
and instructions; misunderstandings then can
be corrected. At the end of this chapter, we re-
view strategies that social workers can use to
enhance patient recall of information.
Encourage Joint Decision Making. After
effective communication is established, the
social worker can encourage and guide health-
care professionals in negotiating a treatment
plan with the patient. Research has shown
that actively engaging patients in treatment
decision making or shared decision mak-
ing has potential to improve adherence and
health outcomes (Fraenkel & McGraw, 2007;
Heisler, 2008; Stacey, Samant, & Bennett,
2008). Shared decision making is important
because patients’ treatment goals often differ
from those of their health-care professionals.
For example, in the case of diabetes treatment
planning, the diabetes team might prescribe a
treatment designed to normalize blood sugar
levels when the patient’s goal is to prevent
uncomfortable episodes of low blood glucose,
thus intentionally keeping blood sugars higher
than normal. The patient may then be adherent
in terms of behaviors to reach goals, but non-
adherent from the perspective of the health-
care professional.
Phase 3: Facilitate Behavioral Change
Patients with recently diagnosed chronic dis-
ease often must develop new behaviors and
change established behaviors to most effec-
tively implement the recommended treatment
regimen. Strategies that can be used by social
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538 Health Social Work: Selected Areas of Practice
workers to facilitate behavioral change can be
grouped into two categories: initiating new
behaviors, and activating social support.
Initiating New Behaviors. Early success in
the process of behavioral change reinforces
and motivates patients. The techniques de-
scribed here are designed to ensure that pa-
tients feel a sense of accomplishment as soon
as possible after they begin to establish new
adherence behaviors (Meichenbaum & Turk,
1987). The fi rst technique is to assist patients
in translating treatment goals into behavioral
goals. Patients must understand exactly what
new or changed behaviors are required in
order to achieve their treatment goals. They
must plan specifi cally how, when, and where
the new behavior(s) will occur. If the treatment
goal is to increase exercise, simply advising
the patient to exercise more frequently will not
be as effective as guiding her in devising a plan
specifying, for instance, the type of activity,
exercise frequency, and when and where she
will engage in the activity. Meichenbaum and
Turk warn that the plans should be moderately
specifi c, but not overly rigid, for best results.
A second technique is to encourage patients
to use self-management strategies. After be-
havioral goals are set, patients can be encour-
aged to establish a daily self-monitoring or
self-recording system. Changes seem easier to
achieve when taken day by day. Daily moni-
toring or recording also reinforces patients’
efforts by giving them a sense of immediate
achievement. In addition, patients and health-
care providers can use information from
self-monitoring forms to manage treatment
regimens more effectively. Small changes are
easier to make than big changes. Patients may
be more successful if they graduate the treat-
ment plan; that is, change their behaviors in
a step-by-step fashion. For example, a patient
who is instructed to exercise fi ve times per
week may be overwhelmed by the task. It may
seem less daunting to the patient to begin by
exercising twice per week, gradually adding
more activity. Another self-management strat-
egy is to structure the physical environment
by organizing the home and work site. Doing
this often entails encouraging patients to make
simple adjustments, such as keeping tempting,
high-fat foods out of the house, setting up an
exercise mat in a convenient place, or keeping
blood-testing equipment in a convenient place.
Last, cueing is another self-management strat-
egy that has been successful in increasing pa-
tient adherence. Patients can be taught to use
cues to prompt them to remember new behav-
iors. Patients can use routine events, such as a
favorite television show or the evening news,
as a prompt to take medication. Medication
containers separated into daily doses are also
helpful. Be creative, even humorous, in help-
ing patients identify behavioral cues.
A third technique to foster the initiation of
new behaviors is to teach patients to plan ahead
for high-risk situations (Marlatt & Gordon,
1985). During the assessment, the patient may
have identifi ed or given clues to behaviors,
situations, events, or persons that are likely
to interfere with adherence to the treatment
regimen. Anticipating these obstacles to adher-
ence and planning ways to manage them are
key strategies to successful behavioral change.
Role-play and rehearsal are useful in prepar-
ing patients to cope with the challenges of
everyday living.
Activating Social Support. Results of a
wide range of studies strongly suggest that so-
cial support and social relationships positively
affect health, in part through health behav-
iors (Heaney & Israel, 1997). Strengthening
and expanding a patient’s support network,
within the family and without, is an essential
component of the third phase of adherence
counseling.
Knowledge of family strengths and risk
factors revealed in the initial adherence as-
sessment enables the social worker to focus
interventions on areas where the need is great-
est. In general, to activate effective family sup-
port, the social worker can encourage family
involvement and competence, promote shared
responsibility among family members, and
strengthen the family’s emotional support for
the patient (Anderson et al., 1990; Glasgow &
Toobert, 1988). To encourage family involve-
ment and competence, it is crucial that the so-
cial worker encourage the health-care team to
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 539
include family members in disease-related ed-
ucation and regimen planning, especially those
members who play key roles in areas related
to adherence. For example, family members
who do the shopping and cooking must learn
about the recommended diet for individuals
with heart disease or diabetes and help the
health-care team tailor the patient’s diet to the
at-home situation. In order to accomplish this
type of involvement, classes or meetings must
be scheduled at a time convenient not only for
the patient and health-care team, but for fam-
ily members as well. If family members are
reluctant to learn about the disease or seem
hesitant about helping with the regimen, the
social worker can talk with them about the rea-
sons for their reluctance to become involved.
Do they fear medical procedures? Do they
know how to help? Are they resentful of the
demands being placed on them? Once these is-
sues surface, the social worker and family can
openly deal with them. Family members are
more likely to want to continue helping if they
know their efforts have made a difference and
are appreciated.
Promoting shared responsibility among
family members is another way to improve
the effectiveness of family support. Because
research has shown that disagreements be-
tween family members regarding the division
of responsibility for disease-related tasks have
been associated with problems with adherence
(Anderson et al., 1990), patients and their
families should be encouraged to discuss and
decide on the tasks and roles each person is
willing to assume. Families often are anxious
about handling medical emergencies, so often
it is useful to devote the fi rst meeting to help-
ing them plan what must be done in an emer-
gency and who will carry out each task.
Emotional support can be strengthened by
encouraging family members to openly share
their feelings. Often the patient and family
try to hide painful emotions, such as sadness,
grief, or anxiety, in order to protect each other.
In doing so, they miss an opportunity to com-
fort one another and grow closer as a family.
Social workers also can encourage families to
share angry feelings so that differences can be
negotiated and confl icts resolved. Many stud-
ies have found that cohesive families with low
levels of confl ict have better adherence and im-
proved medical outcomes (Hanson, De Guire,
Schinkel, & Kolterman, 1995; Herskowitz
et al., 1995).
Adhering to a treatment regimen for heart
disease, diabetes, or HIV/AIDS may be diffi –
cult, if not impossible, if the patient has unin-
formed or unsympathetic friends, coworkers,
bosses, or teachers. Encouraging the patient to
educate at least one or two coworkers or fellow
students can strengthen the supportive atmo-
sphere and increase the probability of adher-
ence. Support from others at work or school
can be encouraged by educational efforts by
the patient. In children with diabetes, personal
contacts by a member of the health-care team
may be used to reinforce parental education of
school personnel.
Linking patients with support groups fre-
quently reduces the sense of isolation and
provides opportunities for learning practical
ways of dealing with adherence problems.
Linking patients with appropriate community
resources, a traditional and essential social
work function, helps patients access supplies
and services that are important for regimen
adherence.
Patients will be better served in the long run
if they learn how to activate their own support.
Social workers can guide patients to identify
those persons who might provide social sup-
port by having them recall people who have
helped them in the past and by asking them to
think of those who might be willing to help in
the future. Further, social workers can prepare
patients to ask for support and cope with refus-
als by using role-play and rehearsal techniques
as described by Marlatt and Gordon (1985).
Patients who are uncomfortable about “bother-
ing the doctor” can be taught patient activation
or assertiveness skills to obtain medical sup-
port. One patient activation strategy is to en-
courage patients to prepare a list of questions
before they make telephone calls to the doc-
tor or go to offi ce visits (Roter, 1977). Other
strategies include encouraging patients to learn
about their medical condition by reading their
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540 Health Social Work: Selected Areas of Practice
medical charts and helping them negotiate
medical treatment decisions with their health-
care providers. In a study of the cognitive and
behavioral determinants of adherence to the
diabetes regimen, Amir, Rabin, and Galatzer
(1990) found that a patient’s ability to assert-
ively request follow-up with a specifi c doctor
was signifi cantly correlated with adherence.
Phase 4: Maintaining Patient
Adherence
Marlatt and Gordon (1985) observed that the
high rate of failure associated with attempts
to change behaviors may stem from a lack of
emphasis on the maintenance phase of treat-
ment. Chronic disease patient education and
management programs commonly suffer from
a lack of attention to maintenance issues.
Health-care professionals often are naive in as-
suming that their job is done once the patient
has been educated and launched onto a new
treatment regimen. However, for patients, the
challenges are just beginning. The next strate-
gies have been helpful in facilitating long-term
adherence.
Assist in Maintenance Skills. Many of the
strategies described previously as effective in
initiating behavioral change are also effective
in maintaining behavioral change. In general,
the most successful strategies will be those di-
rected toward helping patients develop a sense
of personal responsibility for their own adher-
ence and helping them acquire the skills needed
to carry out this responsibility (Meichenbaum
& Turk, 1987). One of the most crucial of
these skills, described earlier in this chapter, is
the ability to anticipate and plan ahead for situ-
ations that are likely to result in nonadherent
behaviors. This skill is particularly important
in light of Marlatt and Gordon’s (1985) fi nd-
ings that most episodes of nonadherence occur
in a limited number of high-risk situations that
are unique to each individual.
Other skills that will help patients indepen-
dently maintain adherence are problem-solving
skills, assertiveness skills, interpersonal skills,
and stress management skills (Meichenbaum
& Turk, 1987). When a patient is defi cient
in these areas, the social worker’s role is to
strengthen these skills as they relate to adher-
ence. The patient also can be referred to skills
training programs offered by community agen-
cies. The social worker then can help the pa-
tient apply the knowledge and skills learned
from the training program to his personal regi-
men adherence problems.
Teach Techniques for Coping with Lapses.
To maintain long-term adherence, patients
must learn to cope successfully with lapses in
adherence. Marlatt and Gordon (1985) stress
the importance of cognitive reframing for pa-
tients who view each slip in adherence as a
sign of personal inadequacy or as an indication
that adherence is not achievable. Patients who
think this way become easily discouraged and
lose motivation. Cognitive reframing involves
helping patients view lapses as errors or mis-
takes in the process of learning new behaviors,
not as indications of personal defi ciencies, so
they can understand, as with any mistake, the
possibility of corrective learning. The social
worker can then assist patients in reviewing
and debriefi ng the lapse so that causes can
be identifi ed and strategies devised to prevent
recurrences. Marlatt and Gordon (1985) also
suggest lapse rehearsal as a technique for pre-
paring patients to handle lapses in adherence.
Lapse rehearsal gives patients an opportunity
to anticipate an adherence lapse, to imagine
their response to the lapse, and to receive feed-
back and coaching from the social worker.
Utilize Follow-up Techniques. There are a
number of very direct ways that the health-care
team can encourage long-term maintenance,
some of which involve ongoing communica-
tion between patient and health-care profes-
sional. Regular phone calls, text messages,
e-mails, and reminders help some patients
keep on track.
Social workers can utilize strategies to re-
duce health-care costs, such as locating low-
cost sources of medications and supplies and
making referrals to state and federal agencies
for fi nancial and medical assistance. Chronic
diseases, such as HIV/AIDS, diabetes, and
heart disease, can be very expensive to man-
age because of the high cost of prescription
drugs, blood glucose testing supplies, dietary
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 541
restrictions, frequent doctor visits, medical
transportation, child care, and laboratory tests.
Patients frequently fail to maintain their regi-
men because of the hardships these expenses
cause for their families over time. In the long
term, other fi nancial demands may take prior-
ity over disease-related expenses. Social work-
ers should be aware that changes in adherence
over time may be due to competing fi nancial
needs.
Social workers must consistently recognize
and reinforce patients’ positive health-care
behaviors. Reinforcement will be more effec-
tive if done in such a way that patients real-
ize their successes are due to their own efforts
rather than those of their health professionals
(Meichenbaum & Turk, 1987). Patients need
self-confi dence and a belief in their own self-
effi cacy to follow the treatment regimen suc-
cessfully for a lifetime.
Applicability to Diverse Populations
This approach holds promise for individu-
als from diverse socioeconomic and ethnic
backgrounds because it uses an ecological
approach for assessing barriers and facilita-
tors to adherence. This approach also ac-
knowledges and examines the infl uence of the
broader social context, such as societal and
cultural factors, that affect adherence behav-
iors. For example, cultural factors, such as
health beliefs and extended family social sup-
port networks among minority patients, may
differ from those of the majority culture and
are crucial to successful adherence counsel-
ing. Furthermore, this approach to adherence
counseling can be used as a strategy to prevent
adherence problems from developing with
newly diagnosed patients or patients who are
changing their regimens. Clinical wisdom, as
well as research about chronically ill children,
suggests that it is easier to prevent the occur-
rence of family-related adherence and disease
management problems than it is to reverse
already existing negative patterns within the
family (Auslander, Anderson, Bubb, Jung, &
Santiago, 1990; Auslander, Bubb, Rogge, &
Santiago, 1993).
ADHERENCE AND
PATIENT–PRACTITIONER
COMMUNICATION
Outcomes Associated With Positive
Patient–Practitioner Communication
After three decades of research about patient–
practitioner communication, several consistent
fi ndings that characterize interactions between
patients and practitioners have been shown to
be associated with adherence to treatment. For
example, when practitioners engage in more
positive and less negative talk, ask fewer ques-
tions, and offer more information, patients are
more likely to be adherent. In fact, more infor-
mation giving is associated with better patient
recall and more partnership building (Hall,
Roter, & Katz, 1988; Roter & Hall, 1997).
Although many of these studies have been
conducted with physicians as the practitioner,
general principles and techniques used to im-
prove communication skills can be extrapo-
lated to other members of the health-care team,
such as social workers, nurses, and dietitians.
Likewise, the strongest predictor of patient
satisfaction is how much information is pro-
vided to the patient; that is, patients who re-
ceive more information are more satisfi ed with
medical care than those who receive less infor-
mation (Hall et al., 1988). The strong relation-
ship between more information and greater
satisfaction may be due to the need patients
have for knowledge about their condition. It
also may be related to patients’ perceptions
that practitioners who share more informa-
tion with them are more concerned and caring
people. Studies even link patient–practitioner
communication with health outcomes such
as improved recovery from surgery and de-
creased use of pain medication (Roter & Hall,
1997). As patients with chronic diseases take
greater responsibility for their own treatment
and health, their needs for information will
increase. Social workers can lead the medi-
cal team in changing the interaction between
patients and providers to a more collaborative
style of communication. (See Chapter 10 for
further discussion of these issues.)
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542 Health Social Work: Selected Areas of Practice
Information Giving and the
Educator Role
Patients with chronic diseases are continu-
ally coping and adapting to changes, whether
they are the co-occurrence of a mental health
problem, changes in their medical condition,
changes in their treatment regimen, or devel-
opmental or lifestyle changes. All of these
changes pose demands on the patient to con-
tinually seek out new information and learn
new ways of coping. In response to this patient
need, social workers play a large role in de-
livering information to patients and educating
them about disease-related and psychosocial
issues. Although there is an emphasis on con-
ducting psychosocial assessments in most so-
cial work programs, little attention is spent on
training social workers to deliver information
to patients. Research in patient–practitioner
communication indicates that patients are dis-
satisfi ed and nonadherent when (a) they do not
understand what they are told and do not ask
questions, (b) they forget what they are told,
and (c) too much time is spent on assessing
personal histories as opposed to providing pa-
tient education (Robbins et al., 1993; Roter,
1977; Roter, Hall, & Katz, 1987).
Communication Techniques to
Enhance Information Recall
Patients forget much of what practitioners tell
them by the time they leave the building. To
increase the amount of information recalled
by patients, the next communication strategies
have been identifi ed as useful in the medical
encounter. The fi rst strategy is to use explicit
categorization. When giving a lot of informa-
tion to patients, social workers should present
the information in categories or blocks and de-
scribe each category in advance. For example,
“I am going to tell you the various types of
support groups that are available for you and
your family, what the potential benefi ts are to
participating in these groups, who facilitates or
sponsors each of these groups, and where and
when these groups are held and how you can
sign up for them. ”
A second strategy is to use repetition. Com-
bined with explicit categorization, repeating
the most important information to patients
and their families can increase recall. In one
of the pioneer studies on patient–practitioner
communication, providers asked patients to
repeat the information back to the physician
to make sure they understood what they were
told. Any information that was misunderstood
or forgotten was repeated to the patient. Re-
sults of this study showed that individuals in
the experimental group were better able to re-
call information from the physicians and also
more satisfi ed with the medical visit (Bertakis,
1977).
Another strategy to enhance recall of in-
formation is to provide specifi c instructions.
Patients can remember and more easily follow
concrete or specifi c, detailed advice or infor-
mation more easily than general, abstract in-
formation, because the former better enhances
imagery than the latter. For example, the clas-
sic general statement, “You should reduce the
sugar in your diet,” often is ignored by patients
not only because it is diffi cult to achieve but
because it does not provide specifi c enough
advice. A more specifi c statement would be
“Substitute fresh fruit and crackers for dessert
after meals in your diet.” When using specifi c
instructions, social workers should avoid using
medical jargon and long sentences that are dif-
fi cult to follow.
Ley (1982), another pioneer in studying in-
formation giving to patients, examined the or-
dering of information presented to the patient.
Results indicated that patients presented with
information in a medical encounter remember
best what they are told fi rst and what they con-
sider most important. Because practitioners
often end their visits with patients by provid-
ing them with information and recommenda-
tions, patients may be more likely to forget
this information. Instead, Ley’s early work
suggests that social workers should present the
most important information early in their visit
with patients so that patients are more likely
to remember it. Providing a rationale to help
patients understand why a treatment is recom-
mended is another strategy that may increase
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 543
patient recall. Last, practitioners should elicit
patient expectations and involvement. None
of these techniques will improve the interac-
tion with patients, unless the practitioner asks
what the patients want to know and encour-
ages patient involvement in their interactions.
A recent study that assessed how frequently
recall-promoting physician behaviors are used
in primary care settings indicated that rep-
etition was the most common technique used
(53.7%), followed by a rationale for treat-
ment (28.2%) (Silberman, Tentler, Ramgo-
pal, & Epstein, 2007). Because longer visits
were associated with increased use of recall-
promoting techniques, social workers can play
a strong role in enhancing recall by having ex-
tended visits with patients after the physician
completes her interaction.
Previous research on adherence and com-
munication between practitioners and patients
has led to the understanding that health-care
professionals are most effective when they
adopt a collaborative style with patients.
When patients choose to not adhere to a treat-
ment regimen, it should be viewed as a logical,
motivated choice. The solution is to renegoti-
ate the agreed-on prescribed treatment so that
patients can realistically follow it. Lessons
learned from a multisite controlled trial of
intensive therapy (the Diabetes Control and
Complications Trial) for individuals with type
1 diabetes (Lorenz et al., 1996) demonstrated
that for intensive therapy to be successful,
health professionals must change as much as
patients.
RELATIONSHIP BETWEEN
MENTAL HEALTH AND
CHRONIC DISEASE
One of the most important issues for social
workers who work with chronically ill patients
is the co-occurrence of mental health problems.
People with chronic illnesses, such as heart
disease, diabetes, or HIV/AIDS, have higher
rates of emotional problems than the general
population. Chronic illness can cause func-
tional disabilities, ongoing pain, burdensome
medication regimens, reliance on caregivers,
and awareness of one’s mortality, any of which
can lead to feelings of grief, anxiety, and de-
pression. But the relationship between mental
disorder and chronic illness goes beyond the
easily explainable premise that chronic ill-
nesses cause patients distress. Research also
indicates that the relationship occurs in the
other direction as well—distress can be a
causal factor in the etiology of chronic illness.
Depression can increase the risk of heart dis-
ease, diabetes, and HIV/AIDS through direct
and indirect pathways.
Social workers bring a holistic, person-in-
environment perspective to the care of people
with chronic illness. Part of this perspective
requires knowledge of how mental illness and
other physical illnesses can inextricably con-
verge. To summarize such knowledge, this
section examines: the prevalence of mental
disorders among individuals with heart dis-
ease, diabetes, or HIV/AIDS; the bidirectional
relationship of these chronic illnesses and
mental disorders; factors associated with men-
tal health in people with chronic illness; and
approaches to providing social work services
for people with a mental disorder and heart
disease, diabetes, or HIV/AIDS.
Prevalence of Mental Disorders Among
People With Heart Disease, Diabetes,
or HIV/AIDS
Heart Disease
An estimated 15% to 20% of people with
heart disease also have depression, compared
to 4% to 7% in the general population (Lett
et al., 2004). Research shows that depression
can exacerbate heart disease, perhaps because
of behavioral consequences of depression,
such as poor eating and exercise habits, or
because of physiological correlates, such as
decreased heart rate variability and platelet
activity in depressed individuals (Ferketich,
Schwartzbaum, Frid, & Moeschberger, 2000).
In 20 studies that followed patients with heart
disease for up to 15 years, people with heart
disease and depression were, on average,
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544 Health Social Work: Selected Areas of Practice
2 times more likely to die of cardiac compli-
cations than people with heart disease and no
depression (Barth, Schumacher, & Herrmann-
Lingen, 2004). Studies generally indicate
that people who experience coronary artery
disease, acute myocardial infarction, conges-
tive heart failure, or heart surgery and who
subsequently experience depression are 1.5 to
2.5 times more likely to die from their cardiac
condition than people with heart disease and
no depression (Lett et al., 2004). Although
depression is a major risk factor for suicide
(Rihmer, 2007), a review of studies on sui-
cide and medical illness found no increased
suicide risk for cardiac conditions such as
hypertension and heart transplant (Hughes &
Kleespies, 2001).
Diabetes
Studies consistently show the risk for depres-
sion is 2 times higher among people with
type 1 or type 2 diabetes compared with
those who do not have diabetes (Ali, Stone,
Peters, Davies, & Khunti, 2006; Anderson et
al., 2001). This effect is consistent for women,
men, children, and adults, as well as for dif-
ferent types of diabetes. In general, a review
of 39 studies including 20,218 participants in-
dicated that 11% of people with diabetes had
major depression and an additional 31% had
a high number of depression symptoms (An-
derson et al., 2001). In a longitudinal study of
children with type 1 diabetes, 28% developed
depression over a 10-year period (Kovacs,
Goldston, Obrosky, & Bonar, 1997). Psychi-
atric disorders occurred most commonly in the
fi rst year after treatment. Depression among
people with diabetes is related to poor nutri-
tion, lack of medication adherence, increased
health problems, and lower quality of life (An-
derson et al., 2001; Ciechanowski, Katon, &
Russo, 2000; Lustman & Clouse, 2005). Vari-
ous studies have shown that depression is re-
lated to a greater likelihood of hyperglycemia,
eye damage, heart disease, hospitalization, and
other complications among people with dia-
betes (Clouse et al., 2003; Kovacs, Mukerji,
Drash, & Iyengar, 1995; Lustman et al., 2000;
Lustman & Clouse, 2005; Rosenthal, Fajardo,
Gilmore, Morley, & Naliboff, 1998). The se-
verity of diabetes and functional impairment
appears to increase the risk for depression
(de Groot, Anderson, Freedland, Clouse, &
Lustman, 2001; Lustman et al., 2000).
Other emotional problems and disorders,
particularly anxiety and general psychological
distress, also occur with higher-than-average
frequency among people with diabetes. Anxi-
ety is twice as likely in people with diabetes
(Kruse, Schmitz, & Thefeld, 2004), and it
is especially associated with hyperglyce-
mia (Anderson et al., 2002). Overall, 14%
of people with diabetes also have general-
ized anxiety disorder, and an additional 40%
have elevated symptoms of anxiety (Grigsby,
Anderson, Freedland, Clouse, & Lustman,
2002). In a study of almost 10,000 people in
New York City, people who had been diag-
nosed with diabetes were twice as likely as
those without diabetes to be in serious psy-
chological distress, defi ned as having at least
13 symptoms of anxiety, depression, schizo-
phrenia, and other mental disorders (McVeigh,
Mostashari, & Thorpe, 2004). Although little
research has examined whether psychological
disorders occur at equal rates among people
with diabetes of different races and ethnici-
ties, one major study in the United States
found that American Indians with diabetes
had the highest rates of depression, followed
by White, Hispanic, and African American
patients; Asian American patients with diabe-
tes had the lowest rates (Li, Ford, Strine, &
Mokdad, 2008).
Finally, the need to focus on food and
exercise continually may give rise to eat-
ing disorders in some people with diabetes.
Some adolescent and young adult women
with type 1 diabetes engage in what is called
“insulin purging” (Rydall, Rodin, Olmsted,
Devenyi, & Daneman, 1997), by which they
regulate their weight by withholding insulin
and thus purging themselves of food that
would be stored as fat. Perhaps as a result,
women with type 1 diabetes have almost
twice the risk for bulimia nervosa com-
pared with women without type 1 diabetes
(Mannucci et al., 2005).
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 545
HIV/AIDS
Because the human immunodefi ciency virus
invades the central nervous system, numerous
types of psychiatric complications can accom-
pany HIV and AIDS (Forstein & McDaniel,
2001). HIV-associated dementia and minor
cognitive-motor disorder can result from the in-
volvement of the virus with the central nervous
system. Studies have reported high prevalence
rates (4%–19%) of HIV/AIDS among people
with serious mental illness, but these stud-
ies lacked random samples or control groups
(Lyon, 2001). The risk for suicide among peo-
ple with HIV/AIDS is generally 2 times higher
than average (Dannenberg, McNeil, Brundage,
& Brookmeyer, 1996; Marzuk et al., 1997),
although earlier studies produced dramatically
larger estimates (Komiti et al., 2001)
Treatment for HIV/AIDS also can trigger
psychiatric problems. For example, antiretro-
viral therapy can induce psychosis in some pa-
tients, which may subside once the therapy is
withdrawn and antipsychotic medication is in-
troduced (Foster, Olajide, & Everall, 2003). At
the same time, antiretroviral therapy has been as-
sociated with a marked decline in cases of AIDS-
related dementia (Liner, Hall, & Robertson,
2008) and with improvement of depression in
people with HIV/AIDS (Low-Beer et al., 2000).
Depression and Other Mental
Illness: Cause or Consequence of
Chronic Illness?
Chronic illness can engender suffi cient stress
and anxiety to affect a person’s mental health.
But what about the possible infl uence of men-
tal health on the etiology of chronic disease?
Indeed, evidence is building that poor mental
health can increase the risk for chronic illness.
The research involving depression, in particular,
is the strongest; studies of many diseases indicate
that depression can both directly and indirectly
increase the risk of certain health conditions.
Heart Disease
Studies have found that depression increases
the risk of subsequent heart disease by an
average 1.5 to 2 times, almost as much as
smoking, which increases the risk of heart dis-
ease by 2.5 times (Lett et al., 2004; Wulsin &
Singal, 2003). One of the fi rst studies of this
phenomenon, the Epidemiologic Catchment
Area study, found that people with no history
of heart disease and a history of major de-
pression in 1981 were 4.5 times more likely
to have had a heart attack by 1994 than those
with no depression history (Pratt et al., 1996).
A more recent study discerned that, among
adults with no previous history of heart dis-
ease, people with depression were 2.7 times
more likely than those without depression
to die of heart disease within an average of
8.5 years (Surtees et al., 2008). The relation-
ship between depression and heart disease
complications may be more profound for men
than for women. One study found that men
with depression were 2.75 times more likely
than men without depression to develop heart
disease, but depression did not increase risk
of heart disease for women (Hippisley-Cox,
Fielding, & Pringle, 1998).
Why depression increases the risk of heart
disease and heart-related complications is not
known. One hypothesis asserts that behav-
ioral consequences of depression—specifi cally
smoking, alcohol use, or physical inactivity—
and physiologic effects increase the risk of
heart disease or complications (Lett et al.,
2004). Depression’s effects on motivation,
energy, and hopefulness are known to impair
compliance with treatment regimens, which
can in turn lead to graver health outcomes.
Physiologic effects of depression that may en-
courage heart problems include alterations in
blood platelet activity, serotonin dysregulation,
infl ammation, and diseases such as diabetes,
obesity, and hypertension (Lett et al., 2004).
Antidepressant medications that target sero-
tonin (fl uoxetine [Prozac], sertraline [Zoloft],
and other selective serotonin reuptake inhibi-
tors) provide evidence supporting a relation-
ship between serotonin and heart disease. At
the same time, Lett and colleagues caution that
factors related to both depression and heart
disease need more longitudinal study before
any causal relationships can be established.
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546 Health Social Work: Selected Areas of Practice
Diabetes
Although we know that depression may
follow a diagnosis of diabetes, depression
also is associated with increased risk of ac-
quiring diabetes (Knol et al., 2006; Mezuk,
Eaton, Albrecht, & Golden, 2008). It is not
clear why depression may increase the risk
of diabetes. As with heart disease, one pos-
sible explanation is that depression itself
leads to poor diet, lack of exercise, smoking,
social isolation, and stress, all risk factors
for diabetes (Barth et al., 2004; Rozanski,
Blumenthal, & Kaplan, 1999). Another pos-
sibility is that depression produces biochem-
ical changes that make an individual more
susceptible to other types of illness or that
depression directly affects cardiac and meta-
bolic regulation.
Diabetes also is associated with other men-
tal illnesses besides depression. People with
schizophrenia have higher rates of impaired
glucose tolerance than people in the general
population, even when no antipsychotic medi-
cations that might affect physiology are taken
(Ryan, Collins, & Thakore, 2003). In fact,
people with schizophrenia who take antipsy-
chotic medications are at an elevated risk for
developing diabetes (Koro et al., 2002; Leslie
& Rosenheck, 2004; Sacchetti et al., 2005).
This relationship is particularly strong among
newer antipsychotic medications, such as
olanzapine (Zyprexa), risperidone (Risperdal),
and quetiapine (Seroquel). One study found
that 1% of people developed diabetes within
three months of initiating quetiapine (Koro
et al., 2002).
Weight gain, which is another side effect
of the medications (Allison et al., 1999), may
help explain the increased risk for diabetes.
For these reasons, it is especially important
that people who start taking antipsychotic
medications be monitored regularly by a phy-
sician, eat low-fat and high-fi ber diets, and
act preventively in general. Yet schizophrenia
itself may affect the metabolic system (Ryan
et al., 2003), and the challenges posed by
schizophrenia can make it diffi cult for people
to exercise diligently and eat well.
HIV/AIDS
In the case of HIV/AIDS, in which transmis-
sion of the disease is preventable with be-
havioral measures, mental illness indirectly
increases the chances of acquiring the sexu-
ally transmitted disease. Many people with
serious mental illness engage in dispropor-
tionately high rates of risky behaviors that can
lead to HIV infection, including unprotected
sex, drug use involving needles, and prostitu-
tion (Meade & Sikkema, 2005). Feelings of
hopelessness and lethargy produced by de-
pression can inspire risky sexual behavior.
In a study of 460 gay men, those with dys-
thymic disorder were 2.4 times more likely
than those without any depressive disorder to
have engaged in unprotected anal intercourse
with a casual partner in the previous 6 months
(Rogers et al., 2003). Cognitive problems,
particularly those associated with schizophre-
nia, can hinder a person’s understanding of
the magnitude of HIV/AIDS and methods for
prevention (Lyon, 2001).
Even after an individual contracts HIV, de-
pression is associated with graver outcomes.
A 7-year study of 1,716 women with HIV
found that the proportion of women with
chronic symptoms of depression who died of
AIDS was double that of those with few or
intermittent depression symptoms (Cook et
al., 2004).
Mental Illness and Adherence
to Treatment Regimens
Not surprisingly, depression, anxiety, schizo-
phrenia, substance use disorders, and other
types of mental disorders can negatively affect
a person’s compliance with treatment recom-
mendations. Depression itself is perhaps the
largest culprit (DiMatteo, Lepper, & Croghan,
2000). The nature of depression lessens moti-
vation, concentration, energy, and hopefulness.
These problems make it diffi cult to exercise,
eat healthfully, test blood sugar regularly, and
maintain medications (Ciechanowski et al.,
2000; Rubin, Ciechanowski, Egede, Lin, &
Lustman, 2004).
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 547
Depression hinders compliance with treat-
ment for heart disease, diabetes, and HIV/
AIDS (Ciechanowski et al., 2000; DiMatteo
et al., 2000; Starace et al., 2002). In a study
of patients with cardiac problems, those with
depression were less likely, than those without
depression, to take their medications regularly,
to quit smoking, to attend cardiac rehabilita-
tion appointments, and to exercise regularly
(Kronish et al., 2006). Among adults with
depression and HIV, those who took antide-
pressants were more likely to comply with an-
tiretroviral therapy (Yun, Maravi, Kobayashi,
Barton, & Davidson, 2005). Illicit drug use
also infl uences adherence. In a study of 85
current and former drug users infected with
HIV, only 27% of cocaine users adhered to
their medication regimen compared to 68%
of people who reported no cocaine use during
the six-month study (Arnsten et al., 2002). Al-
though depression and other mental illnesses
may disturb a person’s motivation and ability
to follow a medical regimen of diet, exercise,
and medication, Rubin and Peyrot (2001)
stress that many people with depression do
adhere to their treatment plan and, likewise,
many people who do not follow their medical
regimen are not depressed.
Protective Factors and Mental Health
in Chronic Illness
Not everybody with a chronic illness develops
a mental disorder. Most people with heart dis-
ease, diabetes, or HIV/AIDS do not merit a di-
agnosis of major depression, despite managing
constant stress and fears related to their illness.
What helps people cope with their chronic
illness without experiencing depression, anxi-
ety, or other mental disorder? Studies gener-
ally fi nd that marriage and higher levels of
education, income, and social support are
associated with fewer psychiatric complica-
tions with diabetes (Blazer, Moody-Ayers,
Craft-Morgan, & Burchett, 2002; McVeigh
et al., 2004; Peyrot & Rubin, 1997). In cases
of diabetes, well-controlled blood sugar is as-
sociated with a decreased risk for depression
(Rubin & Peyrot, 2001), as are lower weight,
insulin treatment, and older age (Katon et al.,
2004). White Americans with diabetes are less
likely to experience major or minor depression
than African Americans (Blazer et al., 2002)
and other people of color who have diabetes
(Katon et al., 2004).
It is hard to know whether depression or poor
health habits (such as control of blood sugar)
come fi rst because of the reciprocal effect they
have on each other. This is also true of exercise,
diet, and sleep, which can help prevent depres-
sion but also can be dramatically affected by
depression. As Rubin and Peyrot (2001) note,
“The helplessness and hopelessness often as-
sociated with depression may contribute to a
vicious cycle of poor self-management, worse
glycemic control, and exacerbation of depres-
sion” (p. 461). A synergistic effect seems to
exist when a person has comorbid physical
and mental illnesses: The worse the physical
or psychosocial situation, the worse the conse-
quences for one’s mental health. Psychological,
economic, social, and physical health problems
are likely to interact with each other in what
can be either a vicious or a productive cycle,
depending on the circumstances.
Interventions to Improve Mental Health
in People With Chronic Disease
Social workers have numerous interventions
available to help people with mental health
problems. Medical crisis counseling, psycho-
therapy, and relaxation training are briefl y
described here. Antidepressant medication is
omitted because social workers do not pre-
scribe medications but rather work with psy-
chiatrists and other physicians who prescribe
them. However, it is helpful for social workers
to be aware of the benefi ts and risks of psy-
chiatric medications so that they can educate
and advocate for their patients. For example,
antidepressants can reduce depression effec-
tively but also carry risks, including increased
risk for suicidal behavior in children, adoles-
cents, and young adults (Barbui, Esposito, &
Cipriani, 2009).
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548 Health Social Work: Selected Areas of Practice
Medical Crisis Counseling
Medical crisis counseling is a short-term inter-
vention that centers on fears, anxieties, disabil-
ities, and other problems posed by a person’s
medical condition (Pollin, 1995). The premise
of medical crisis counseling is that eight fears
impede a person’s ability to cope with illness:
loss of control, loss of self-image, dependency,
stigma, abandonment, expressing anger, isola-
tion, and death. The counseling typically lasts
for only 10 or fewer sessions, and an active,
problem-solving approach is stressed. The role
of the social worker or other therapist “is that
of a facilitator, problem-solver, health educa-
tor, and coach to the patient with a solution-
focused orientation” (Pollin, 1995, p. 53). The
ultimate therapeutic goal is to help people with
illness feel some sense of control over their
situation and, in turn, cope more effectively.
A small, randomized controlled trial indicated
that crisis counseling may help increase so-
cial support for patients with diabetes, heart
disease, and other conditions without increas-
ing costs (Koocher, Curtiss, Pollin, & Patton,
2001).
Psychotherapy
Various studies attest to psychotherapy’s ef-
fectiveness in general (Nathan & Gorman,
2007), but evidence is mixed regarding psy-
chotherapy and people with specifi c illnesses.
Psychotherapy may vary by orientation (e.g.,
cognitive-behavioral or psychodynamic), mode
(individual or group), or focus (cognitive dis-
tortions, grief, or stress).
Cognitive-behavioral therapy has reduced
depression effectively (Petrak & Herpertz,
2009; Snoek et al., 2008) and improved glyce-
mic control (Ismail, Winkley, & Rabe-Hesketh,
2004) among people with type 2 diabetes.
Rubin and Peyrot (2001) propose that interper-
sonal psychotherapy also would benefi t people
with diabetes because so much of the illness’s
management requires effectively interacting
with other people. In one of the fi rst studies
to examine stress-reduction training and heart
disease outcome, men who had a heart attack
and received stress-reduction training had
lower fatality rates than those with no psycho-
logical intervention (Frasure-Smith & Prince,
1985). In addition, psychotherapy delivered
over the telephone has demonstrated positive
results; in a randomized controlled trial with
cardiac patients, patients who received six ses-
sions of telephone therapy reported less de-
pression and anxiety than those who did not
receive the intervention (McLaughlin et al.,
2005).
Not all studies of psychotherapy effective-
ness yield positive results. An intervention
including group and individual psychotherapy
failed to reduce rates of depression, recur-
rence of heart attack, or death rates among
2,328 people who had a recent heart attack
(Jones & West, 2004). A large study of indi-
vidual and group cognitive-behavioral therapy
for adults with depression and a recent heart
attack showed that the intervention was asso-
ciated with reduced depression and increased
social support. However, within the average
follow-up period of 29 months, 1 in 4 people
had died regardless of whether they received
psychotherapy (Berkman et al., 2003). More
research is needed into the effectiveness of
different types, modes, and foci of psycho-
therapy, specifi cally for people with chronic
illness.
Relaxation Training
Relaxation techniques have generated consid-
erable evidence of effectiveness among people
with chronic health conditions. In his classic
book The Relaxation Response, Benson (1976)
showed that meditating for 10 to 20 minutes
a day can produce physiologic changes, such
as lower blood pressure and heart rate. Relax-
ation techniques are associated with improved
blood glucose control among people with dia-
betes (McGinnis, McGrady, Cox, & Grower-
Dowling, 2005). Deep relaxation techniques
can help children and adolescents with type
1 diabetes feel less fear and anxiety when re-
ceiving injections and other stressful medical
procedures (Sewell, 2004).
Numerous types of relaxation training
exist. In meditation, a person sits still while
concentrating on counting, repeating a phrase,
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Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS 549
or visualizing an object. In progressive mus-
cle relaxation, a person breathes deeply and
relaxes specifi c muscle groups one at a time,
starting either from the head and going down
to the feet or vice versa. In hypnotherapy, also
called deep relaxation (Sewell, 2004), another
person induces relaxation in the patient by
directing the patient to focus attention on an
object or a visualization. For detailed instruc-
tions on how to use relaxation techniques with
clients, see Bernstein, Borkovec, and Hazlett-
Stevens (2000) or Payne and Donaghy (2010).
CONCLUSION
Social workers in all types of health-care set-
tings frequently work with people who have
heart disease, diabetes, HIV/AIDS, or some
other chronic disease. Chronic disease brings
ongoing challenges to patients, particularly in
the form of issues with mental health, treat-
ment adherence, and gathering information to
better cope with ongoing changes associated
with the disease. Chronic illness may lead to
mental health problems, such as depression and
anxiety, which in turn can exacerbate physi-
cal complications of chronic illness. Mental
health problems such as depression also can
negatively affect a patient’s ability to follow
through with medication, diet, and other com-
ponents of the medical regimen. Adherence
to medical treatment is of utmost importance
for people with chronic illness. How patients
live on a daily basis—whether they eat, exer-
cise, take medication regularly, or act preven-
tively—can profoundly impact the course and
outcome of their illness.
Social workers have multiple roles in their
work with chronically ill patients: adherence
counselor, mental health specialist, and edu-
cator. Each of these roles demands that social
workers are knowledgeable about the pa-
tients’ diseases and treatments in addition to
their unique psychosocial issues. Perspectives
on nonadherence have changed from one of
blame to one of choice, whereby the practi-
tioner and patient must take responsibility for
renegotiating the agreed-on treatment.
Future trends in health care may infl u-
ence the roles that social workers assume in
health-care settings and in the community. For
example, increased rates of obesity and diabe-
tes among individuals of all age groups, even
children and adolescents, will strengthen so-
cial work’s role in promoting lifestyle changes
and adherence. The relatively new emphasis
on prevention of heart disease, diabetes, and
HIV/AIDS will enhance social workers educa-
tional role in community-based public health
settings, such as schools, primary care clinics,
and mental health and social service agencies.
Finally, the continued disparities in health
found between people of color and White
Americans will highlight the need for social
workers’ expertise in sociocultural and family
factors that infl uence health outcomes. Knowl-
edge of heart disease, diabetes, and HIV/AIDS
is critical for social workers who work with
growing numbers of individuals who are ac-
tively preventing and managing these chronic
diseases.
SUGGESTED LEARNING
EXERCISES
Read a book about an individual’s struggle to
cope or adapt to a chronic disease. The book
can be a personal account (autobiographical)
or written by someone else.
Suggested Learning Exercise 20.1
In a case study presentation or paper, analyze
the individual’s ability to manage the disease
using the adherence counseling model de-
scribed in this chapter. First, describe the dis-
ease by its etiology, symptoms, treatment, and
progression. Then analyze how various factors,
such as family social support, lifestyle, cul-
tural factors, mental health status, emotional
reaction to the diagnosis, health beliefs, and
treatment satisfaction, may affect the charac-
ter’s ability to manage the disease and adhere
to treatment. Based on this assessment, how
might a social worker intervene with the client
JWBT514_ch20.indd 549JWBT514_ch20.indd 549 9/21/11 7:46 PM9/21/11 7:46 PM
550 Health Social Work: Selected Areas of Practice
and family to facilitate behavioral changes, ac-
tivate social support, and help them cope more
effectively?
Suggested Learning Exercise 20.2
In pairs, assume the role of the individual from
the book that you read, and role play by tak-
ing turns conducting a social work assessment
with one other. Once you have completed this
assessment, individuals can take turns com-
pleting a social work intervention plan based
on strengths and challenges identifi ed in the
role-plays. After the work done in pairs, indi-
viduals can share information and feedback
from the role-play experience with the larger
group.
Suggested Learning Exercise 20.3
Considering the information in this chapter, along
with information from Chapter 15 (“Social Work
With Children and Adolescents With Health
Conditions”) and Chapter 16 (“Social Work With
Older Adults in Health-Care Settings”) from this
book, have small- or large-group discussions
about the unique (1) psychosocial barriers and
(2) social work intervention issues related to
chronic illnesses, such as diabetes, HIV/AIDS,
and heart disease among children, adolescents,
and older adults. Among each of these popula-
tions, what may be unique issues related to ad-
hering to medical recommendations?
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557
21
Social Work and Genetics
ALLISON WERNER-LIN AND KATE REED
Historically, social workers in health care
have helped families cope with the psychoso-
cial implications of genetic conditions (Schild
& Black, 1984). The earliest articles that ad-
dress how to integrate genetic concepts and
concerns into social work practice were pub-
lished over 45 years ago. Two seminal articles,
one by Schild (1966) and the other by Schultz
(1966), outlined advances in genetics and their
potential infl uence on social work practice.
Both emphasized the importance of psychoso-
cial support for individuals and families deal-
ing with genetic disorders and suggested that
social workers are particularly well suited to
provide counseling about genetics.
Since then, scientifi c advances have al-
tered the landscape of genetic medicine dra-
matically. Most notably, the Human Genome
Project was launched in 1990 to determine the
exact makeup of the human genome with the
hope of improving health by identifying ge-
netic variants that contribute to disease. Com-
pleted in 2003, the Human Genome Project
(www.ornl.gov/sci/techresources/Human
_Genome/home.shtml) allows us to read the
human genetic blueprint. This opens the door
for improved methods of understanding the
underlying biology and genetics of disease and
the development of effective interventions for
both rare and common genetic conditions. Sci-
entists have made great strides in identifying
genetic contributions that cause or predispose
individuals to specifi c disorders. Identifying
these genetic variants has enabled the devel-
opment of genetic tests for individuals inter-
ested in learning whether they carry specifi c
gene variants (commonly called mutations or
alterations) that predispose or cause illness.
Yet the ability to identify genetic contribu-
tions to disease continues to outpace the de-
velopment of targeted therapies. Furthermore,
our understanding of the relationship between
single gene variants and disease expression
has increased in complexity, and the interplay
between multiple genes and environmental
factors further complicates prediction. Thus
an unintended result of the Human Genome
Project was the creation of a new class of pa-
tients for whom we can detect risk variants
but cannot determine whether or when disease
will develop.
The identifi cation of genetic variations that
predispose individuals to a variety of condi-
tions means that social workers must contend
with a new risk concept, one that is micro-
scopic. Our person-in-environment lens must
be broadened to include consideration of ge-
netic variation as a core feature of develop-
mental, social, and environmental assessment
without essentializing genetic contributions
to conditions or traits. As scientists identify
genes linked to stigmatized disorders, such
as mental illness and addiction, or personality
traits, such as aggression and anxiety, the abil-
ity to identify genetic predispositions comes
with a potent ethical, social, and personal cost.
Knowledge of basic genetic concepts and how
they are presented and understood in medical
care is critical to competent practice, especially
with marginalized and vulnerable populations,
such as those with limited health literacy and
inadequate resources.
The genetic revolution offers a variety of
opportunities for social workers to partici-
pate in the comprehensive care of patients and
families to address an entire range of health
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558 Health Social Work: Selected Areas of Practice
shape the ways humans grow and develop.
For example, only a subset of people ex-
posed to tobacco become addicted. Genetic
variants infl uence how nicotine is processed
in the body; people with one variant experi-
ence the effects of nicotine for longer than
others because it is metabolized more slowly.
These individuals need to smoke fewer ciga-
rettes during the course of a day than people
who metabolize nicotine more rapidly. These
genetic variants interact with other environ-
mental and behavioral factors, such as access
to cigarettes and composition of the social
network, to determine whether an individual
develops an addiction.
Genetic variation refers to the differences
that exist in the genetic code across individu-
als and groups. Those differences contribute
to diversity in physical appearance, health,
and behavior and affect the ways individuals
respond to their environment. The code that
determines the basic instructions for growth
and development, DNA (deoxyribonucleic
acid), is grossly the same among all indi-
viduals because those instructions are neces-
sary to support life. For example, all humans
have the same basic body shape and develop
organs in the same order and at around the
same time. Beyond these fundamental in-
structions, though, variation is the rule, not
the exception.
A rapidly growing body of literature ad-
dresses genetic variation and the interplay
between genes and environments (Manolio,
2009). This literature tells us that genetic
variation contributes to the array of personal-
ity and behavioral traits we develop, to illness
expression and treatment response, and to the
development of psychopathology. Genetic fac-
tors play a role in an individual’s stress and
coping response, thus shaping the way individ-
uals engage with and respond to environmen-
tal stressors (Caspi, Hariri, & Holmes, Uher,
& Moffi tt, 2010). Social workers are trained
to assess environments and to hypothesize and
test links between environmental strengths
and constraints and mental health and health
outcomes. Recognizing genetic as well as en-
vironmental factors will allow social workers,
concerns, including genetic aspects of well-be-
ing. The strengths perspective and person-in-
environment lens suggest a potent role for
social workers to participate in designing in-
formation-sharing models and approaches to
genetic services that are tailored to the specifi c
needs of individuals, families, and communi-
ties (Kent, 2003). The aim of this chapter is to
present an overview of basic genetic concepts
and dilemmas most relevant to social work
practice.
Chapter Objectives
• Introduce basic concepts and recent devel-
opments in genetic medicine.
• Identify variation and gene–environment
interaction as a foundation for building
strengths-based knowledge and practice in
genetics.
• Discuss opportunities and challenges for in-
tegrating social work into transdisciplinary
clinical and research teams in genetic medi-
cine.
• Introduce common ethical issues faced by
providers and patients involved in genetic
medicine.
• Examine recent policy developments in the
area of genetic medicine.
• Suggest roles for social work in develop-
ing and implementing research, advocacy,
education, and intervention protocols in
genetics.
INTRODUCTION TO GENETIC
VARIATION
No two people or environments are identi-
cal. Even twins born with identical genetic
blueprints develop distinct personalities,
interests, and social networks. Researchers
have long studied twin pairs in an attempt to
identify the impact of varied environmental
conditions on the ways genes are expressed
(their phenotype) (Rose & Kaprio, 2008;
Shih, Belmonte, & Zandi, 2004). Yet great
variation exists in how specifi c genes are ex-
pressed and in how those genes interact with
similar and diverse environmental factors to
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Social Work and Genetics 559
in partnership with other health and mental
health professionals, to develop interventions
and resources that are targeted to an individ-
ual’s specifi c circumstances across a variety
of presenting problems. Thus, with respect to
social work practice in the age of genetic dis-
covery, social workers are in the ideal position
to identify the environmental, behavioral, and
familial factors that provide the context for
gene expression.
The Basics
Variation ultimately occurs at the level of
DNA, which is the source of all genetic in-
formation. DNA carries genetic information
encoded in four different chemicals bases—
adenine, thymine, cytosine, and guanine, or,
more familiarly, A, T, C, and G—which pair
(A-T and C-G) together. Each pair is called a
nucleotide, and the sequence of nucleotides
conveys specifi c instructions about the growth,
function, and development of the cells. Genes
are segments of DNA with a unique combi-
nation of nucleotides that contain instructions
for making a specifi c protein required for cell
growth, development, and/or maintenance.
Human beings have about 20,000 to 25,000
genes. All human beings have roughly the
same genes, but no two people, except identi-
cal twins, have the same versions (alleles) of
each of those genes. Each person generally has
two copies of each gene, one inherited from
each parent (see Figure 21.1).
Chromosomes provide the organizational
structure for DNA. They are composed of
complexes of genes and proteins found in the
nucleus of the cell. A normal human cell has
46 chromosomes. We inherit 23 chromosomes
from each parent, which means we have 23
pairs of chromosomes and two copies of every
gene. The chromosomes that we inherit from
each parent are grossly the same for 22 pairs.
The 23rd pair of chromosomes determines
biological sex of the individual. Females have
two X chromosomes and males have one X
and one Y chromosome.
Sources of Genetic Variation
Genetic variation refers to the changes that
exist in the genetic code across individuals
and groups that affect the function of the gene.
These changes can be small or large, and their
effect on an individual depends on their loca-
tion in the genome and whether the change
has functional signifi cance. Variation itself is
neutral; not all changes lead to negative health
consequences. Some genetic changes have no
effect, some make individuals less susceptible
to certain diseases, and some increase the risk
for disease.
There are two main types of genetic varia-
tion, reproductive and structural. Structural
variation, in many ways, can be thought of as
“mistakes” that occur during the replication of
DNA. By contrast, we all have genes that facili-
tate the process of increasing variation through
reproduction. The following explanations are
designed to provide an overview of the me-
chanics of variation that have signifi cance for
how individuals, families, and groups present
for treatment, the kinds of questions or medi-
cal decisions they may be facing, and the scope
of psychosocial intervention that may facilitate
positive health and mental health outcomes.
Reproductive Variation
The union of genetically distinct egg and sperm
produces a unique combination of genetic in-
formation, thereby increasing variation. During
the process of reproduction, genetic material
from each biological parent is sorted randomly Figure 21.1 DNA
Deoxyribonucleic Acid (DNA)
Chromosome
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560 Health Social Work: Selected Areas of Practice
to ensure a full complement of genes from
each parent. Therefore, each egg or sperm
cell is a mix of what that individual inherited
from each biological parent. This random as-
sortment creates a unique person with risk
factors and disease susceptibly inherited from
the combination of the parents’ genetic risk
factors and susceptibility. Random assortment
further ensures that siblings are not genetically
identical (except for twins); they will inherit
different combinations of their parents’ DNA
(see Box 21.1).
Structural Variation
Structural variation refers to changes in the
genetic code that may be as large as an entire
chromosome or as small as a single nucleo-
tide (A-T or C-G pair) within a gene. These
include genetic mutations and polymorphisms.
Changes that are seen in less than 1% of the
population typically are referred to as muta-
tions. A mutation is a change to DNA that,
depending on its location on the gene and the
type of change, can impact the function of
a protein encoded for by that gene. In some
Box 21.1 Patterns of Inheritance
Most traits and conditions have a genetic
component that is inherited in one of a few
common patterns. Identifying the pattern
can inform diagnostic and counseling
approaches about the risk of developing the
trait or condition for the individual and their
family members. Patterns of inheritance also
can impact individuals’ understanding of
and experience with the condition.
Autosomal Dominant Inheritance
Autosomal dominant patterns of inheritance
are indicated by conditions or traits for
which having a mutation on one copy of the
causative gene is suffi cient to develop the
phenotype. An individual with an autosomal
dominant condition or trait often has a
parent with the same condition. Each child
of a carrier has a 50% chance of inheriting
an autosomal dominant mutation, with males
and females equally likely to be affected.
Dominant traits usually are seen in multiple,
successive generations in a family.
Autosomal Recessive Inheritance
Autosomal recessive patterns of inheritance
are indicated by conditions that require
both copies of the gene in question to carry
mutations that prevent normal functioning.
Individuals who have one working copy of
a gene and one nonworking copy are called
carriers and are at increased risk of having a
child with the condition if the other parent is
also a carrier. Males and females are equally
likely to be affected by autosomal recessive
conditions, and these conditions often are
found in siblings. Affected individuals may
have unaffected parents, and all offspring
of an affected individual are carriers of the
gene mutation. Each child of two carrier
parents has a 25% chance of being affected.
Carrier
X-Linked Inheritance
X-linked patterns of inheritance are
indicated by conditions or traits that are
caused by changes in genes found on the X
chromosome. The X and Y chromosomes
determine an individual’s sex; males have
one X chromosome and one Y chromosome
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Social Work and Genetics 561
cases, a mutation can change the meaning of
the DNA substantially, resulting in an ineffec-
tive or nonfunctional protein. In other cases,
mutations do not disable to protein and are be-
nign. Environmental conditions also infl uence
the impact of a mutation. For example, a muta-
tion in the gene that codes for hemoglobin B
can result in sickle cell trait. This trait causes
considerable damage and discomfort at high
altitudes but has no impact at sea level.
Some genetic mutations have enabled adap-
tive responses to changing environments. For
example, a small subset of people who are reg-
ularly exposed to human immunodefi ciency
virus (HIV) carry a specifi c mutation that pre-
vents infection by denying the virus access to
human cells. As far as we know, this mutation
is not associated with any negative effects and
may have other undiscovered properties, and
most carriers are unlikely to know they have
it. This mutation likely existed well before
the HIV epidemic, but only with a changed
environment within which HIV exists did we
become aware of its existence. Other benefi cial
mutations in our current environment include
the ability to digest lactose and resistance to
malaria infection in carriers of sickle cell trait.
Somatic mutations occur sporadically after
birth. Although they may have a signifi cant
impact on the carrier, the carrier’s children
are not at risk of inheriting the mutation. Most
types of cancer, for example, are due to genetic
mutations in a single cell caused by exposure to
environmental toxins. These mutations affect
the individual but, because they are not present
in the sex cells, cannot be passed onto the next
generation. Only specifi c types of mutations,
called germline mutation, are passed from one
generation to the next in a family bloodline.
Germline mutations are those that are present
in the sex (egg and sperm) cells. A small subset
of people who develop cancer carry a germline
mutation, such as the BRCA1 or BRCA2 mu-
tations, which predispose carriers to elevated
while females have two X chromosomes.
This means that males have only one
copy of each of the genes found on the X
chromosome while females have two copies.
As a result, females typically are less affected
by X-linked conditions because they have one
normal copy of the gene that may partially
compensate for the missing or incorrect gene
product. Because affected males transmit
their only X chromosome to their daughters
but not their sons (who inherit their Y
chromosome instead), all daughters will
become carriers while sons will not. Women
who carry one normal copy and one mutated
copy of a gene implicated in an X-linked
disorder are called carriers. Each son has a
50% risk of inheriting the mutated version
and thus, having the condition.
Multifactorial Inheritance
Multifactorial patterns of inheritance are
implicated by conditions or traits with many
contributing factors, including both genetic
and environmental factors. These conditions
or traits often occur in multiple family
members due to shared environmental and
genetic factors. Most commonly, chronic
conditions such as heart disease and diabetes
are multifactorial, as are many traits,
including height and depression. Because
multiple factors are involved in combination,
some of which may not be easily identifi ed, it
is diffi cult to predict whether individuals will
develop symptoms even if genetic testing for
the known genetic factors is available.
mood disorder
alcoholism
suicide
ADHD
anxiety/
depression
depression
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562 Health Social Work: Selected Areas of Practice
risk of developing breast and ovarian cancer.
In this subset of individuals, cancer develops
only after exposure to an environmental toxin
that causes an additional genetic mutation to
occur. In this case, the germline mutation and
the somatic mutation each act as an indepen-
dent “strike” against the individual’s resistance
to cancer. Cancer in these individuals tends to
occur at an earlier age because the mutation is
present from birth.
Polymorphisms are changes in the DNA
that are present in more than 1% of the popula-
tion, making them genetically common. Many
polymorphisms consist of a change to a single
nucleotide (single nucleotide polymorphism
or SNP). Although some polymorphisms are
associated with moderate increases in risk for
common diseases, not all polymorphisms are
associated with disease risk. Examples of non–
disease-related polymorphisms are those that
contribute to eye and skin color.
Chromosomes provide the organizational
structure for genes. Each chromosome con-
tains hundreds of genes, and changes to the
number or structure of the chromosome can
have profound effects on the development of
the individual. An extra chromosome 21 results
in the constellation of health and cognitive is-
sues known as Down syndrome. The presence
of a single X chromosome with no other sex
chromosome (each individual should have two
sex chromosomes) causes Turner’s syndrome
in women, characterized by small stature, non-
verbal learning disabilities, and fertility and
other health concerns. Other disorders result
from the deletion, duplication, or inversion
of segments of specifi c chromosomes. Chro-
mosomal abnormalities related to the number
of chromosomes are thought to cause 50% to
60% of miscarriages because these changes
are not compatible with supporting life.
New technology called microarray can
identify deletions and duplications on chro-
mosomes that are too small to have been
detected by previous technologies. In most
cases, microarrays are indicated for individu-
als who have signifi cant developmental and
health problems. Microarrays assess the entire
genome rather than focusing in on detecting
a specifi c mutation or condition. Because the
technology is nonspecifi c, it has the potential
to detect a genetic anomaly for a growing pro-
portion of the affected population. Yet the use
of this technology raises ethical and medical
challenges. For one thing, microarrays identify
changes in areas of the chromosomes that have
not previously been associated with disease,
so interpreting the results requires educated
guesswork about the causative nature of the
change and its impact on development. Also,
analysis may identify risk information that is
not connected to the concerns that initially led
an individual or family to pursue genetic test-
ing. For example, a deletion of a gene that is
associated with an adult-onset disorder, such
as amyotrophic lateral sclerosis (ALS, also
known as Lou Gehrig’s disease), could be
identifi ed in a child being worked up for de-
velopmental delay. Although these types of
unanticipated results are not unique to genet-
ics, they present a challenge to the introduc-
tion of new technologies, informed consent,
and medical decision making.
GENE–ENVIRONMENT
INTERACTION
A variety of models demonstrate current theo-
retical assumptions about the ways genes and
environments interact. All diseases are caused
by a combination of genetic and environmen-
tal factors. In some cases, disease occurs only
after risk factors accumulate. It is similar to the
threshold effect with exposure to environmen-
tal toxins—a certain amount of mercury is be-
lieved to be safe and tolerated by the body, but
beyond that amount there is increased risk for
health and cognitive problems. In the context
of genetics, the presence of a mutation alone
may not be suffi cient to cause disease, but
when environmental risk factors also are pres-
ent (e.g., high-fat diet, smoking), the scales are
tipped and the individual may meet the crite-
ria for a clinical diagnosis. It is important to
note that prior to having a clinical diagnosis,
a person may have symptoms. For example,
an individual may have relatively high blood
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Social Work and Genetics 563
pressure but not have clinical hypertension;
an individual may have a persistent, relatively
severe depressed mood (dysthymia) but never
meet the diagnostic criteria for major depres-
sion. Early symptoms such as these also are
due to a combination of genetic and environ-
mental factors.
Some conditions occur only if specifi c
environmental and genetic risk factors are
both present. For example, people with a
mutation in a gene responsible for breaking
down certain components of alcohol, alcohol
dehydrogenase, will develop facial fl ushing,
heart palpitations, light-headedness, and nau-
sea when consuming alcohol. Both alcohol
consumption and this specifi c mutation are
required for the effect to occur. Individuals
with phenylketonuria (PKU) are missing an
enzyme that breaks down one of the main
components of protein, the amino acid phe-
nylalanine, because of a genetic mutation.
Phenylalanine is present in virtually all natu-
rally occurring protein sources (e.g., beef,
chicken, milk, pork). Individuals with PKU
must eliminate phenylalanine from their diet
or they will develop cognitive impairment
over time. This specifi c genetic mutation is
problematic only in a world where phenyl-
alanine is an essential component of pro-
tein. In an environment that did not rely on
phenylalanine, having the mutation would
not affect a person’s health or development.
Because the disease is managed successfully
if caught early, the United States Preventive
Services Task Force (2009) recommends that
all newborns be screened for PKU. As a re-
sult, all babies in the United States are tested
for PKU right after they are born. In both ex-
amples, the genetic mutation has no impact
unless specifi c environmental factors also are
present.
Current research is focusing on understand-
ing gene–environment interactions in more
common diseases. For example, the interac-
tion between genes that control pigment, such
as melanin, and sunlight both are implicated in
the development of skin cancer. Exposure to
ultraviolet rays causes disease in combination
with a genetic variant that produces insuffi cient
pigment for protection. Similar interaction
studies are being completed for other diseases,
including diabetes and metabolic syndrome. Al-
though more work is needed to fully elucidate
the biology behind these disease processes, this
type of investigation helps us better understand
the way in which genetic and environmental
risk factors impact disease risk.
Perhaps most exciting for social workers
and others who seek to measure and modify
environments to improve the health and mental
health of individuals, families, and communi-
ties is the fi eld of epigenetics. Epigenetics is
the study of how environmental factors impact
gene expression in individuals and groups. Al-
though these changes are acquired during the
course of an individual’s life, that individual’s
children may inherit them. Epigenetic factors
may impact the onset and expression of dis-
ease. For example, research on early breast
cancer in African American women has linked
social environments and hypervigilance to in-
creased breast cancer risk for African Ameri-
can women on Chicago’s South Side (Gehlert
et al., 2008). Epigenetic research such as this
has signifi cant implications for social work in-
terventions designed to identify environmental
risk for and prevent health and mental health
conditions before they occur. This research
shows that living in an environment that re-
quires heightened vigilance impacts hormone
levels because of an increased need to modu-
late response to stress (McClintock, Conzen,
Gehlert, Masi, & Olopade, 2005). Hormone
levels impact breast cancer risk. Although
this research is ongoing, initial fi ndings from
these studies suggest that changing the social
environment may impact disease risk in the
community. Epigenetic research demonstrates
the important connection between animal and
human research as well. Evidence from rat
models links maternal care (licking) of infant
pups to adult rat stress responses (Weaver
et al., 2004). Here the environment infl uences
the control of DNA processing by shaping
how and when specifi c genes (stress response
genes) are expressed later in life. Both of these
epigenetic projects required collaboration
across several disciplines.
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564 Health Social Work: Selected Areas of Practice
Understanding Phenotypes
Phenotypes are the detectable end product of
the interaction among genetic and environmen-
tal factors that contribute to a particular trait
or disease process. They are the outcomes that
we observe: physical traits, such as hair, skin
and eye color, height, and weight, or disease
processes, such as diabetes, heart disease, al-
coholism, and depression. Yet one’s phenotype
is frequently too vague to direct effective in-
terventions. Breaking down a broad phenotype
into intermediate end points that correspond to
each underlying pathway has clinical and so-
cial value. For example, heart disease can be
caused by a variety of factors, of which poor
food choice is only one pathway. For individu-
als living in minimally resourced environments,
access to heart-healthy food choices are limited.
For others, genetic factors impact their ability
to metabolize cholesterol. For yet others, infec-
tions, such as rheumatic fever, or other disease
processes, such as high blood pressure, can lead
to heart disease. Different pathways may have
specifi c indicators that are measurable before
heart disease is diagnosed, such as cholesterol
level, allowing for targeted intervention. Each
of these pathways leads to heart disease in
different ways, requiring targeted social and
medical indicators and interventions. Dietary
changes will not help to remediate heart disease
linked to rheumatic fever.
Select phenotypes incur social stigma. Race,
discussed later, is one. Cultural discourse links
these phenotypes to patterns of trait or disease
expression. For some, such as obesity, stigma
grows from assumptions about the lack of self-
control. Teasing apart the overarching pheno-
type, obesity, allows health and mental health
professionals to identify the varied pathways
leading to disease. From there social miscon-
ceptions can be addressed and individualized
interventions designed. This section presents
background on select phenotypes with which
social workers are familiar.
Environment, Culture, and Evolution
Understanding the biological basis for dif-
ferences among human populations requires
understanding of genetic history and the im-
pact of evolutionary pressures. Differences exist
between populations for a number of reasons,
including environmental conditions that create
a selective advantage for a particular trait. For
example, darker skin color for individuals living
near the equator provides protection from the
harmful effects of intense sunlight. Similarly,
the ability to digest lactose is more prevalent in
populations with a historically greater exposure
to lactose-containing foods (i.e., dairy products).
In both examples, the original population had
some individuals with different forms of each
trait (e.g., individuals with lighter and darker
skin color near the equator and individuals with
and without the ability to digest lactose in lands
with cows). Over generations, individuals with
the more advantageous trait for the environment
were more likely to survive and have more chil-
dren, thereby passing on that genetic variant and
having it become more prevalent in that specifi c
population. This phenomenon is called natural
selection (Darwin, 1859) and can be seen over
generations for many different types of traits and
in all species.
Social and cultural pressures also may im-
pact the type and prevalence of genetic attri-
butes within a population. Groups descended
largely from a relatively small founding popu-
lation may have genetic disorders that were
present among the founders. For example, the
Old Order Amish population in the United
States has cultural and social restrictions on
marrying individuals outside the commu-
nity. Consequently, the gene pool is relatively
small, and there is a higher prevalence of cer-
tain predisposition to and incidence of genetic
disorders than is seen in a larger population
with more genetic variation. Specifi cally, the
Old Order Amish have a higher prevalence of
some rare, single-gene disorders as well as
gene variants that convey risk for certain com-
plex disorders including diabetes (McKusick,
1973; Pollin et al., 2008). The Ashkenazi
Jewish population faces a different set of con-
ditions because of what was present in the
founding population and cultural mandates to
marry within the group. Although more preva-
lent in these groups, these conditions can be
seen in any population.
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Social Work and Genetics 565
Race
Race is a powerful social construction in
which phenotypic expression is linked to
layers of sociopolitical history and cultural
meaning. As genetic discovery enables differ-
entiation of subgroups of the population, the
genetics of race has been explored in a variety
of politically and socially charged contexts.
Hypotheses about links between genes and
race are founded on assumed covariance be-
tween phenotype and other skills or attributes,
such as intellectual prowess and athletic per-
formance. An examination of social dialogue
about genetics and race is beyond the scope
of this chapter. Yet we would be remiss not to
mention the ways genetics research has ad-
dressed the concept of race and the risks of
using racial distinctions to categorize genetic
variation. Of signifi cant concern is genetics
research that inadvertently (or deliberately)
may promote essentialist thinking, where en-
vironmental conditions that lead to health and
mental health disparities are obscured in favor
of explanations that look to deterministic and
“inevitable” genetic variation (Sankar, 2009).
As social workers well know, understanding
an individual’s specifi c social, familial, and
medical context rather than relying on assump-
tions based on a diagnosis or demographic in-
formation allows for the development of more
effective approaches to practice.
In medical settings, race often serves as a
heuristic, or cognitive shortcut, for the health
professional to focus on certain disease risks
based on the prevalence within that population
(Satel, 2002). Although race is used as a cate-
gorical variable in research, it is diffi cult to op-
erationalize since it is a social construct rather
than a biological one (Bonham, Warshauer-
Baker, & Collins, 2005; Dupre, 2008; Hunt &
Megyesi, 2008). As a result, categorization of
participants based on racial categories relies
either on self-report or the researchers’ percep-
tion based on visual cues. As a result, the term
race may be used ambiguously, inconsistently,
and without rigor (Hunt & Megyesi, 2008).
Furthermore, increased mobility and inter-
marriage have blurred the physical and social
attributes that determine one’s race. Although
originally the observable genetic differences
between races may have served as reliable
marker of other unique characteristics of the
population, such as beliefs or cultural heritage,
which do not have a genetic basis, the mixing
of populations and increasing globalization
have made those markers much less useful. As
race diminishes in its usefulness as a proxy for
genetic background, this use has become less
effective. Such an approach assumes race in-
volves salient and innate differences, but this
claim has not been substantiated in genetics
research.
Genetic Contributions to Mental Illness
Psychiatric disorders tend to cluster in fami-
lies; thus, interest in exploring genetic contri-
butions to mental illness has grown since the
inception of the Human Genome Project. Even
with new technologies that make the entirety
of the human genome more accessible, no
strong single gene has been identifi ed for any
psychiatric disorder. State-of-the-art research
suggests that mental illness develops like other
complex disorders. That is, many genes, each
associated with a small increase in risk, con-
tribute to disease in combination with environ-
mental factors (Dick, Rose, & Jaakko, 2006;
Jaffee & Price, 2007; Wermter et al., 2010).
For example, several researcher teams are in-
vestigating a gene–environment interaction in
the development of depression in individuals
exposed to stressful life events. A particular
mutation in a gene that responds to a chemi-
cal (serotonin) released in the brain during
stressful situations has been implicated in risk
for developing depression. Some studies have
found that having the mutation alone does not
cause any problems. When the environmental
factor (stress) is present, serotonin interacts
with the altered protein and sets off a chain of
events that increases risk for depression. Al-
though other studies have not found the same
interaction, the underlying disease pathway
still is being considered and may help to clar-
ify the specifi c mechanism (e.g., Caspi et al.,
2003; Risch et al., 2009). A parallel body of
research, pharmacogenomics, examines gene
variants that impact the ability of individuals
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566 Health Social Work: Selected Areas of Practice
to metabolize drugs used to treat psychiatric
conditions (Malhotra, Lencz, Correll, & Kane,
2007). The aim of this research is to opti-
mize treatment by avoiding adverse effects
and determining effective dosing effi ciently.
In combination, these bodies of research sug-
gest a future role for personalized psychiatric–
genetic medicine.
The mutation in the gene that responds
to serotonin is implicated in elevating risk
of depression and also has been tied to other
mental health outcomes, including alcohol
dependence. Depending on the research or
clinical environment, explanations for addic-
tion vacillate among genetic factors, adverse
familial and social conditions, and personal-
ity or character defi cits. Although addictions
run in families, teasing apart how much of
the clustering is due to genetic factors versus
shared environmental factors, including ex-
posure to addictive behaviors, is complicated
(e.g., Crabbe, 2002). Twin, adoption, and fam-
ily studies provide support for both genetic
and environmental contributions (Agrawal &
Lynskey, 2008). These studies suggest that the
initiation of substance use is highly familial,
yet not inherited. Shared genotypes within
families may account for common behavioral
responses to known environmental variants.
Thus, some family members may be more sen-
sitive to environmental determinants than oth-
ers. Understanding the complex relationship of
genes and environment in addiction may help
elucidate other behavior pathways as well as
help to target interventions.
TRANSDISCIPLINARY
TEAMS IN PRACTICE AND
RESEARCH
In many ways, genetics provides a unifying
structure that brings specialists together to ad-
dress different aspects of a single underlying
disease. Listed in this section are the types
of professionals most frequently involved in
caring for an individual and family with a ge-
netic condition. This list is likely to expand to
include primary care providers, as additional
genetic factors related to common disease
are identifi ed and as clinical testing becomes
available. This list is not exhaustive. Spe-
cialists involved who can respond to specifi c
concerns (e.g., endocrinologists, neurologists,
dermatologists) will change based on the med-
ical, psychosocial, and developmental needs
of the affected individual and family. In gen-
eral, the role of these specialists will be to di-
agnose, treat, and manage specifi c symptoms.
Although genetics professionals typically will
take the lead on patient care coordination, pa-
tient management is a shared responsibility
among these professionals.
Who Is on the Team?
Clinical geneticists are physicians who have
completed additional residency training in
medical genetics. Clinical geneticists typically
see patients for medical diagnosis and man-
agement. They help connect patients with the
appropriate specialists to ensure current and
anticipated medical issues associated with the
underlying condition are addressed.
Genetic counselors are health-care profes-
sionals with combined graduate level train-
ing and expertise in medical genetics, patient
education, and psychosocial counseling. Some
genetic counselors are generalists while others
may specialize exclusively in one area of med-
icine, such as cardiovascular or psychiatric ge-
netics. In clinical settings, genetic counselors
help individuals and families to understand
and address genetic risks, make testing deci-
sions, and adapt to genetic diagnoses, mainly
on a short-term basis.
Nutritionists/dietitians work primarily with
patients who have conditions that require
their diets to be restricted, such as those with
metabolic conditions such as PKU who can-
not metabolize certain nutrients. Nutritionists/
dietitians develop diet plans that ensure that
individuals get the appropriate nutrients given
their underlying condition and work with fam-
ilies to help them integrate changes in diet into
their lives.
Physical, occupational, and speech thera-
pists provide both short- and long-term support
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Social Work and Genetics 567
for individuals who have either delayed de-
velopment of skills or experienced changes
in skills due to a genetic condition. Patients
affected at the beginning of life may benefi t
from these therapies by virtue of the help that
they receive in meeting their developmental
milestones. Adults who develop neurodegen-
erative conditions may lose abilities, including
coordination, speech, and swallowing. Thera-
pists sometimes can help to preserve and im-
prove functioning.
Social workers, psychologists, and psychia-
trists are part of the recommended care model
for individuals experiencing infertility and
considering predictive testing for adult-onset,
neurodegenerative conditions such as Hunting-
ton disease. Their role in the testing process is
to assess the individuals’ baseline emotional
state to determine the presence of risk factors
associated with pregnancy. Social workers are
trained to understand clients and families in
their social and historical milieu by: eliciting
family narratives of illness, caregiving, and
loss; addressing outstanding emotional con-
cerns; fostering active client participation in
counseling and decision making; and bolster-
ing client self-awareness. They may provide a
variety of psychosocial services to individuals
and families with genetic conditions, includ-
ing: referrals; individual and family counsel-
ing; consultation; and ongoing support to
individuals, families, and groups attempting to
cope with genetic conditions. They also may
facilitate family meetings about genetic testing
and treatment, support medical decision mak-
ing, and structure group interventions.
Research
Social workers currently are involved in genet-
ics research of various types, and opportunities
to be more involved are becoming more abun-
dant. Social workers’ training and perspec-
tive in assessing environmental conditions,
dynamics, and development provide a needed
perspective when considering the implications
of genetic discoveries. Social workers have the
skills to lead transdisciplinary teams to exam-
ine problems from a holistic perspective. To
support social work leadership and participa-
tion in genetic research, in August 2010, the
National Institutes of Health offered a week-
long, intensive summer institute addressing the
potential to integrate social work and genetic
research. The program highlighted a number
of opportunities and challenges to the interdis-
ciplinary collaboration required to bridge pro-
fessional boundaries successfully.
Opportunities
As the fi eld of epigenetics expands, geneticists
increasingly will need to partner with social
scientists trained to: assess environments;
hypothesize links between environmental
strengths, constraints, and health outcomes;
and design research to test these links. Social
work strength in these partnerships lies in the
profession’s expertise in understanding the
impact of familial and social conditions on
human development throughout the life cycle
and across diverse and dynamic environments.
The rich history of innovative and applied re-
search by social workers will facilitate ethical
translation of genetic discovery into tangible
products to support vulnerable and marginal-
ized groups.
Challenges
Although complementary knowledge and
skills across collaborators can potentiate re-
search impact, disparate professional lexicons,
beliefs about standard and rigorous research
methodology, and perceptions about important
targets of research and change may threaten
collaboration. The use of discipline-specifi c
terminology or different defi nitions of the
same term can impede communication among
team members. Laboratory research, common
in genetics, may share little with participatory
research, qualitative methods, intervention
research, or self-report measures common in
social work research (Padgett, 2008). Further-
more, meaningful outcomes may be defi ned
differently by professional discipline. For ex-
ample, polymorphisms (defi ned as “common”
genetic variants) are those mutations present
in at least 1% of the population. Understand-
ing 1% of the variance in a population is
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568 Health Social Work: Selected Areas of Practice
Box 21.2 Common Research Questions by
Professional Discipline
Clinical geneticists investigate many aspects
of the fi eld, including molecular genetics,
clinical application, and ethical and social
questions about genetic testing. Common
research questions include:
• How do we best defi ne the phenotype and
spectrum for a condition or trait?
• What are the distinct genetic
contributions and gene–environment
interactions for related phenotypes?
• What novel genetic variants are associated
with common conditions or traits?
• What new therapies can be developed
based on our understanding of genetic
mechanisms?
• How do changes in gene expression
impact the characteristics of disease?
Genetic counselors examine social science
questions within the fi eld of genetics and
explore the process and outcomes of the
profession. Common research questions
include:
• How do patients respond psychologically
to discovery of a deleterious trait?
• How can genetic counselors facilitate
adaptation to a genetic condition?
• How does cultural or ethnic group
identifi cation affect patient educational
and psychosocial needs?
• How do individuals share the results of
genetic testing with family, friends, and
partners?
• Does genetic counseling change
compliance with medical
recommendations?
Genetic epidemiologists examine the
etiology, prevalence, and mechanisms of
complex traits, focusing on the intersection
of genes and environment in particular
groups and populations. Common research
questions include:
• Why is a certain trait or condition
aggregating in a particular family or
population?
• What are the prevalence, impact, and
burden of a genetic variant in a population?
• What are the relative contributions of
genes and environment for a given trait?
• What areas of the genome might yield
the most information about particular
conditions or traits (i.e., mutation hot
spots)?
Population geneticists apply the techniques
of molecular genetics to the study of human
evolution and diversity. They typically
have training in evolutionary biology or
biological anthropology. Common research
questions include:
• What genetic markers are associated with
particular racial/ethnic admixture, linguistic
group, or cultural/geographic heritage?
• What can we learn about human history
and patterns of migration by tracing
genetic markers?
• What factors infl uence population
divergence or convergence?
• How have specifi c genetic variants
moved through human populations and
geography over time?
Social workers and other mental health
and social science professionals examine
the factors that infl uence the expression of
and response to genetic information and
testing for individuals, families, and groups.
Common research questions include:
• How do environments shape the
expression of conditions or traits?
• How do family legacies shape pursuit and
interpretation of genetic testing results?
• How do shared understandings of disease
shape medical decision making and
management of genetic risk or conditions?
• How does health literacy impact
interpretation of genetic test results?
• How do genetic variants contribute to
mental illness risk behaviors, such as
suicide and substance abuse?
• How can mental health providers
best support decision making, family
communication, and coping for patients
engaged in genetic testing?
Source: Adapted from NCHPEG program Genetics
for Social and Behavioral Science Researchers (in
development).
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Social Work and Genetics 569
meaningful from the perspective of a geneti-
cist, but from a social science perspective, this
may not constitute a meaningful fi nding.
Each member of the research team brings
unique knowledge, research aims, and skills to
collaborative endeavors (see Box 21.2). When
these are congruent and complementary, trans-
disciplinary work is possible. However, cultural
assumptions about what constitutes “good” sci-
ence may thwart collaborative efforts if disparate
understandings are not equally communicated,
valued, or integrated into research plans.
GENETIC COUNSELING,
EDUCATION, TESTING, AND
REFERRAL
Genetic testing identifi es changes in chromo-
somes, genes, or proteins. Unlike many other
medical tests, the results of genetic tests largely
do not change over time and are not infl uenced
by the environment. Instead, tests identify ge-
netic mutations that are a permanent part of a
patient’s DNA. Although test results are static,
our understanding of how these results impact
health and disease evolves as we learn more
about genetic variation and environment inter-
actions.
Different types of genetic testing are used
to identify genetic contributions to disease in
different contexts. The most common catego-
ries of and purposes for genetic tests are listed
next.
• Diagnostic testing is used to identify
an underlying diagnosis for individuals
showing symptoms that indicate a genetic
condition.
• Carrier testing is offered to asymptom-
atic individuals who are at risk of carry-
ing a mutation for an X-linked or recessive
condition due to family history or ethnic
background. This type of testing is used
most commonly to inform reproductive
planning.
• Predictive testing is offered to (a) asymp-
tomatic individuals who are at high risk
of adult-onset genetic disorders (such as
Huntington disease) based on their family
history and (b) individuals diagnosed with
a disorder known to have a genetic compo-
nent (such as certain cancers).
• Prenatal testing uses fetal DNA to test for
certain single-gene and chromosomal dis-
orders in fetuses at high risk due to family
history, results of screening tests, or ad-
vanced maternal age.
• Newborn screening for a number of genetic
conditions is performed on most newborns
to identify those who would benefi t from
further testing, including diagnostic genetic
tests, or treatment.
• Susceptibility testing is a relatively new
category of genetic tests that provides in-
formation about risk to develop common
and complex disorders. Results from this
type of testing do not predict the onset of
disease; they just indicate increased or de-
creased risk.
Referrals to Genetic Services
In general, genetics professionals use an indi-
vidual’s medical and family history to assess
the genetic contribution to health and disease.
Most often this assessment occurs when there
is an increased risk for an underlying genetic
condition, due to current health, family his-
tory, or background attributes (i.e., age, eth-
nicity). Increasingly, though, clinical tests are
becoming available to test for genetic changes
that increase risk for common, complex condi-
tions. This means that a larger proportion of
the population may be soon gaining knowl-
edge about their genetic makeup.
Social workers frequently ask clients with
physical and mental illness about family his-
tory and may, therefore, be in a good position
to identify families that could benefi t from
genetic counseling. Before referrals are made,
social workers should ask clients about interest
in a referral. If the client is interested, referrals
are appropriate when factors are present in the
individual or family that suggest an increased
risk for a genetic condition. For example,
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570 Health Social Work: Selected Areas of Practice
parents of children with multiple medical is-
sues may benefi t from a genetics referral to try
to identify an underlying diagnosis. With the
availability of new technologies that have been
shown to be effective for multiple outcomes,
genetic testing in the pediatric setting outside
of genetic services is becoming increasingly
common. Unfortunately, the interpretation of
the genetic testing results can be complicated.
Social workers can help to facilitate optimal
care for their patients by assessing the needs of
the individuals and their family and connect-
ing them to the appropriate services.
Genetic services have long been integrated
into standard prenatal care. Screening for a
variety of common and preventable disorders,
genetic and nongenetic, are offered routinely
during pregnancy to identify fetuses that are
at risk of being affected. Screening tests are
not diagnostic, so prospective parents who
screen positive are offered diagnostic testing
for common chromosomal disorders. Follow-
up genetic testing is provided for prospective
parents to prepare for a child with special
needs or to offer the possibility of termination
if a condition is identifi ed. Diagnostic test-
ing also may be offered if there is a known
genetic diagnosis in either parent’s family or
if either parent fi ts a specifi c risk profi le, such
as advanced maternal age or a specifi c ethnic
background. The only genetic services incor-
porated into routine pediatric practice involve
newborn screening for identifi able and treat-
able genetic disorders, yet the number and
consistency of screening varies across state
lines. Recent expansion of newborn screen-
ing recommendations includes conditions for
which early detection will be benefi cial, such
as hearing loss (Berg et al., 2002). There is
ongoing discussion and concern about the
best approach to obtaining informed consent
for newborn screening, since many parents
are unaware that their children have been
screened (Fernhoff, 2009).
Individuals, couples, and families often
pursue genetic services after being diagnosed
with or having a family history of a serious
condition that may have an identifi able ge-
netic component, such as adult-onset cancers
or neurological diseases. Predictive testing
raises psychosocial, and sometimes ethical,
issues for patients and requires input from
knowledgeable professionals, including social
workers, to facilitate decision making that is
congruent with patient values and priorities.
Social workers should be prepared to provide
reliable referrals and resources to clients in-
terested in pursuing genetic consultation. This
list of resources should include providers who
specialize in genetic education and counseling
in addition to online resources that can link
clients to supportive and informative commu-
nities, particularly for rare genetic conditions.
Because of the vast amount and variable qual-
ity of information available online, especially
with respect to rare conditions, social workers
also should be prepared to help patients inter-
pret and assess the quality of information.
Although not routine, genetic services are
increasingly available in other specialties, in-
cluding oncology, cardiology, and neurology,
to help facilitate assessment, testing, and treat-
ment decisions. As genetic testing becomes
more widely available for common, complex
conditions and traits, there will be an increas-
ing need for individuals to help both provid-
ers and patients understand and interpret the
results.
The shortage of trained specialists, specifi –
cally genetic counselors and medical geneti-
cists, who can deliver genetic services limits
the availability of these tests through regulated
channels, specifi cally in rural or underre-
sourced environments. Genetic tests for com-
mon and rare diseases are more common now
than they were a decade ago. Yet, as genetic
testing moves from tightly controlled research
settings with stringent procedures for informed
consent to the primary care arena, in which a
physician can order a test with little or no pre-
test or posttest counseling, informed consent
may be compromised and the potential for mis-
use of testing increased (Resnik, 2003). In ad-
dition, some companies are marketing genetic
tests directly to the consumer (DTC), enabling
individuals and families to access them out-
side of medical settings. Although most DTC
tests identify genetic variants that change only
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Social Work and Genetics 571
moderately an individual’s risk for common
conditions and traits, results could negatively
impact patients, both medically and psycho-
socially (Gray et al., 2009). The validity and
utility of these tests currently is being debated
(e.g., Annes, Giovanni, & Murray, 2010; U.S.
General Accountability Offi ce, 2010; Waalen
& Beutler, 2009). Whatever the fate of any one
type of genetic testing, it is likely that with-
out regulation, disparities will grow between
those who have access to supportive care, ge-
netic education, and counseling to manage test
results and those who do not.
Access to genetic services is hindered fur-
ther by widespread problems with health lit-
eracy, patient and provider lack of awareness
about genetic tests and services, and diffi culty
negotiating complex health information and
systems. In addition to limited access to ge-
netic testing and quality risk management,
marginalized groups have been less willing to
engage in genetic research and testing to iden-
tify disease risk or traits than privileged groups
(Halbert et al., 2006; Murphy, Wickramarante,
& Weissman, 2009; Nanda et al., 2005). This
may be due to skepticism about how results
will be used and kept private and concern
about whether results will be misinterpreted to
exploit communities and groups. The legacy
of the Tuskegee experiment and the recent bi-
ography of Henrietta Lacks (Skloot, 2010; see
Chapter 3 for further discussion) support con-
cerns that genetic testing may reinforce rac-
ism and that minority patients will be used as
guinea pigs (Bussey-Jones et al., 2009).
Thus, access to genetic services is com-
promised not only by minimally resourced
environments with few trained professionals
and limited health profi ciency, but also by the
nation’s centuries-old history of exploiting
people of color for the benefi t of privileged
groups. Social workers must partner with com-
munity groups and advocates to enhance con-
fi dence in skeptical communities when quality
services are available that can lead to early
detection, treatment, and prevention of life-
threatening disease. These partnerships pro-
vide valuable contexts for engaging vulnerable
groups in cutting-edge research and practice
while also protecting them from coercion or
unfair burden.
As the demands for genetic services con-
tinue to increase beyond the capacity of ge-
netic counselors and nurses to provide them,
non-health-care providers may increasingly
help patients to access, interpret, and adjust
to genetic information. Social workers are
in a unique position to promote access to
resources, facilitate medical decision mak-
ing, and provide emotional support over the
dynamic and long-term adaptation to genetic
information (Smets, van Zwieten & Michie,
2007).
Communicating and Interpreting
Genetic Risk Information
Communicating genetic risk information to
individuals and families is a complex and
multilayered process. In addition to disease
risk information, providers should be alert to
the ways emotional reactions, perceptions of
self-effi cacy, social context (McCoyd, 2008),
family loyalties, and medical histories (Kenen,
Ardern-Jones, & Eeles, 2003; Werner-Lin,
2007) cloud comprehension and judgment.
Evidence suggests the emotional and sup-
portive parts of genetic services help patients
understand risk information more than the
educational or informational components (Ed-
wards et al, 2008; Meiser & Halliday, 2002).
Yet a recent literature review suggests that pro-
viders rely heavily on medical language while
providing counseling and education (Meiser,
Irle, Lobb, & Balrow-Stewart, 2008). Some
providers may not be comfortable with the
emotional tenor and intensity of genetic coun-
seling and education and may retreat into the
safety of neutral medical terminology. In such
cases, social workers can provide support not
only to patients, but also to providers, on how
to manage countertransference reactions and
seek collegial support to help providers to en-
gage fully with distressed individuals and fam-
ilies. Providers must be coached to integrate
the dual demands of sharing complex medical
information and supporting the emotional ex-
perience of receiving that information.
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572 Health Social Work: Selected Areas of Practice
Health Literacy and Numeracy
Health literacy is defi ned as the degree to
which individuals are able to “obtain, process,
and understand basic health information and
services needed to make appropriate health
decisions” (Ratzen & Parker, 2000). Health
literacy is mediated by education, culture, and
language profi ciency and involves a variety of
intellectual skills, including listening, speak-
ing, writing, and reading. Approximately 90
million Americans, or half of all adults, have
trouble understanding and using health infor-
mation (Nielson-Bohlman, Panzer, & Kindig,
2010). Those most signifi cantly impaired, and
thus at risk of poor health outcomes, are el-
derly persons and individuals with limited
education or English profi ciency. A signifi cant
piece of health literacy involves numeracy,
or the ability to fi nd, understand, and use nu-
merically based health information, such as
probabilistic or risk information (Ancker &
Kaufman, 2007). Genetic information is often
expressed in numbers, including disease risk,
penetrance (the proportion of mutation carriers
who will manifest symptoms), mutation preva-
lence, inheritance patterns, and the benefi ts of
risk reduction. Providers may assume individ-
uals and families are able to interpret and use
numerical information to make rational deci-
sions, yet numerical risk estimates are hard to
understand for the average patient. As a result,
risk evaluations based on numerical data are
overshadowed by vivid examples from the
individual’s family and social worlds (Hur-
ley, Miller, Rubin, & Weinberg, 2006). Social
workers should promote the use of basic health
literacy screening tools to identify at-risk pa-
tients and to support their understanding and
informed uptake of research, genetic testing,
and treatment protocols.
Estimating Risk: Coping and
Calculating
In genetic risk counseling, patients receive,
and are presumed to integrate, objective risk
information regarding their likelihood of de-
veloping disease, or of their child being born
with a disease, based on the most up-to-date
medical information available. Patients tend
to interpret probabilistic information using a
dichotomous, deterministic lens (Lippman-
Hand & Fraser, 1979). This makes ambiguous
information more manageable for them. Shift-
ing risk estimated into absolutes (e.g., 1/0; yes/
no; 100%/0%) prevents individuals from hav-
ing to entertain the uncertainty (or multiple
uncertainties) associated with genetic risk and
its management. For example, if a fetus is di-
agnosed with an anomaly that is incompatible
with life, women are much more likely to ter-
minate. Although this certainty does not obvi-
ate the occurrence of signifi cant and painful
grief reactions, it facilitates decision making
(McCoyd, 2008). When genetic testing infor-
mation is more ambiguous, cognitive distor-
tions may interfere with patients’ ability to
comprehend risk information accurately due
to unique and complex family histories with
the disease (Kenen et al., 2003; Werner-Lin,
2007), poor preexisting knowledge of genetic
concepts, innumeracy, risk aversion, and de-
fensive pessimism (Hurley et al., 2006). In-
terventions have been developed to improve
patients’ comprehension and ultimately to
bring their “subjective” risk perception more
closely in line with “objective” estimates
through systematic analysis of evidence (e.g.,
Schwartz, 2001; Slovic, Finucane, Peters, &
MacGregor, 2004). This formal risk analysis
perspective tends to view affective responses
as irrational. More recent scholarship argues
that “rational” decision making requires an in-
tegration of both analytic and experiential (af-
fective) systems. This perspective is congruent
with the view that risk perception is “inevita-
bly mediated through social and cultural pro-
cesses and can never be known in isolation
from these” (Lupton, 1999, p. 35).
For conditions with ambiguous penetrance,
risk is diffi cult to quantify accurately (Sivell
et al., 2008). Defensively pessimistic (Norem
& Cantor, 1986) individuals may prepare for
the worst by overestimating personal risk. Yet
this may lead to drastic prevention measures
that adversely impact health and quality of
life (Braithwaite, Emery, Walter et al., 2004;
Hallowell & Richards, 1997). Protectively
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Social Work and Genetics 573
ignorant (Yaniv, Benador, & Sagi, 2004) indi-
viduals may underestimate their own risk and
thus avoid risk management or early detection
protocols that could extend their lives while
simultaneously maintaining their quality of
life. As individuals “stage” closer to expected
ages for disease onset, they may experience
greater emotional distress and become averse
to seeking information about genetic testing
and risk management (Johnson, Case, An-
drews, & Allard, 2010). In any case, attempts
to correct mistaken beliefs may improve health
outcomes. Social workers may partner with
genetic counselors and other health profes-
sionals to help patients understand estimates
as probabilistic rather than prophetic. Depar-
ture from deterministic understandings may
increase anxiety but also will support informed
medical decision making.
Reproductive Genetics and Infertility
Genetic information frequently becomes sa-
lient for individuals and couples considering
pregnancy or anticipating the birth of a child.
At these times, couples and providers focus
on the health of the fetus and the risks that
may impact a pregnancy or delivery. Because
of the complexities of development, all preg-
nancies have a risk of miscarriage and birth
defects, regardless of the genetic and envi-
ronmental background of the biological par-
ents. Most birth defects occur during the fi rst
trimester (www.acog.org/publications/patient
_education/bp165.cfm), and some can be de-
tected through ultrasound and blood tests.
Others cannot, making it important to clarify
the limitations of prenatal testing to the pro-
spective parent(s).
Genetic services, specifi cally prenatal ge-
netic counseling, often are incorporated into
family planning and pregnancy care, because
of the ability to detect certain types of genetic
conditions prior to the birth, and in some cases
the conception, of the child. Prenatal counsel-
ing discussions inherently evoke ethical and
moral issues, because they involve decisions
about an unborn fetus. Genetic counselors
may be involved in providing information
about the potential diagnosis and risks, as well
as helping prospective parents with decision
making that is compatible with their values
and beliefs. Counselors are trained to facili-
tate these discussions in a nondirective way.
Social workers also can be part of these dis-
cussions, especially with regard to exploring
the couple’s social and familial context and
how certain decisions might affect their family
system. Understanding the options available
for testing may help to facilitate the decision-
making process.
Social workers have long been involved
in providing prenatal genetic services. Ongo-
ing research examines the support needs of
women carrying fetuses that have been diag-
nosed with genetic anomalies (McCoyd, 2008,
2010). This work suggests that one of the most
critical factors in supporting women through
genetic testing and decision making about
pregnancy termination is a connection with
empathic providers (McCoyd, 2010). This fact
speaks to the need for social workers to sup-
port clients and educate physicians on how to
provide compassionate and holistic care.
Prenatal Diagnosis
Genetic diagnosis of a fetus during pregnancy
is done using a variety of methods. Screening
tests do not test the fetus’s blood directly but
rather test pregnancy-associated proteins for
the possibility of a genetic condition. These
screening tests do not provide defi nitive diag-
noses. Instead, they provide risk information
that can help with making decisions about
whether to seek further testing.
First-trimester screening involves a blood
test and an ultrasound. These procedures
can provide information about increased risk
for certain chromosomal problems, includ-
ing Down syndrome and trisomy 18 (having
three copies of chromosome 18 rather than
two). They allow the identifi cation of Down
syndrome in 82% to 87% of cases. Second-
trimester screening for Down syndrome, tri-
somy 18, trisomy 13, and neural tube defects
uses a blood test. If a woman has had a negative
screen during the fi rst trimester, she requires
only one additional blood test, for neural tube
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574 Health Social Work: Selected Areas of Practice
defects, during her second trimester. Typically,
a detailed ultrasound is performed at 18 to 20
weeks into a pregnancy to visualize the fetus
and to screen for major structural abnormali-
ties. Not all birth defects can be visualized,
and some can develop after 20 weeks.
Women at high risk for having a child with
detectable genetic disorders because of results
from screening tests, ultrasound, family history,
or advanced maternal age (greater than 35) may
be offered prenatal testing of fetal cells. Cho-
rionic villis sampling (CVS) and amniocente-
sis remove and isolate fetal cells that are then
grown and examined for chromosomal anoma-
lies. CVS can be done earlier in pregnancy
(between 10 and 13 weeks) than amniocentesis
(after 14 weeks). Both carry a risk for miscar-
riage in around 1% of cases. If there is a known
single-gene disorder in the family, the fetal cells
obtained through CVS or amniocentesis can
be used to test for the presence of that known
mutation. Social workers should be aware that
although nearly all women receiving prenatal
care receive an ultrasound, many low-income
women cannot afford amniocentesis or CVS.
Furthermore, any woman covered by a federal
health insurance plan, such as through the mili-
tary or a public program, will not be covered
for pregnancy termination; federal law prohib-
its federal funds from being used for abortion
under any circumstance.
In Vitro Fertilization and
Preimplantation Genetic Diagnosis
In vitro fertilization (IVF) is a reproductive
technology that enables some infertile couples
to carry and give birth to a biologically related
child. IVF fi rst was used successfully nearly
three decades ago and has become widely
available around the United States. The pro-
cedure is expensive, and insurance coverage is
not standard across plans. The procedure also
is said to be emotionally exhausting, with mul-
tiple attempts often needed before a successful
pregnancy is achieved. Male and female fac-
tors, or a combination of the two, contribute.
Cultural mandates to procreate, fear of social
judgment, and shame about infertility fre-
quently push couples to keep their infertility
and IVF experiences secret, potentially depriv-
ing them of critical emotional support.
Preimplantation genetic diagnosis (PGD)
was fi rst developed in 1990 and by early 2005
had been used in over 3,000 IVF cycles, re-
sulting in over 700 births (Klipstein, 2005).
PGD is a technically complex and expensive
procedure by which blastocysts (pre-embryo
produced by cell division following fertiliza-
tion) produced through IVF are examined for
a specifi c genetic disorder before transfer.
Only those embryos that are determined to
be unaffected are transferred to the uterus.
PGD allows couples at risk to begin a preg-
nancy with a blastocyst known to be free of
the disorder in question. PGD commonly is
used to detect chromosomal aneuploidies
(an abnormal number of chromosomes) that
produce disorders such as Down syndrome
(trisomy 21) or Turner syndrome (monosomy
X) and approximately 100 single-gene disor-
ders. Currently, it is impossible to use a single
PGD procedure to detect multiple conditions
without compromising the viability of the
blastocyst. Finally, IVF and PGD may both
produce viable embryos that are never trans-
ferred to the uterus. Thus, initiating these
procedures requires couples to consider what
to do with unused embryos: to freeze them
for potential future use, donate them for re-
search, or destroy them.
PGD raises ethical and moral issues for both
the couple and the population as a whole. Tech-
nically, PGD can be used to test embryos for a
range of disorders, from those that are lethal in
childhood, such as Tay-Sachs disease, to those
that are adult onset and for which treatments are
available, such as BRCA1/2 associated breast
and ovarian cancer. It also can be used to detect
conditions such as deafness, for which there is
disagreement about its consideration as a dis-
ease. Despite the issues it raises, PGD broad-
ens the options for individuals who previously
chose not to have children because they might
pass on a genetic condition.
Carrier Screening
Couples who are planning a pregnancy and
have a family history of genetic illness or
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Social Work and Genetics 575
who are among a high-risk group for a genetic
illness may request carrier screening to identify
genetic mutations or anomalies. Some of the
disorders for which carrier screening is avail-
able are Tay-Sachs disease, sickle cell disease,
and cystic fi brosis. If recessive genetic disor-
ders are known to exist in a family, individuals
may choose to know their carrier status for the
disorder. Carrier screening may reveal that a
person has an altered gene for the disorder. If
the person’s partner is also a carrier, the risk
for a child with the condition is 25%. If only
one person is a carrier, the couple’s offspring
will not be affected; thus, a single test may be
all that the couple need. If a single member of
the couple is a carrier, the couple may elect
to replace that partner’s germ cell (ovum or
sperm) with donor ova or sperm to minimize
risk. The use of donor material requires the use
of assisted reproductive techniques. As a rule,
donor sperm requires only intrauterine insemi-
nation while donor ovum requires a full IVF
cycle for both the donor and the gestational
mothers.
Ensuring that someone is not a carrier is
diffi cult in some cases. For example, cystic
fi brosis (CF) is an autosomal recessive condi-
tion caused by mutations in the CFTR gene.
Although over 1,000 mutations are known
to cause cystic fi brosis, the carrier screening
panel is required to test for only 23 of them
(Watson et al., 2004), because these 23 ac-
count for the vast majority of mutations found
in the population with CF. Negative carrier
screening using this panel will substantially
decrease the chance that the individual is a
carrier for CF but cannot eliminate the pos-
sibility entirely. In addition, the panel is opti-
mized for the population that has the highest
prevalence of people affected with CF, north-
ern Europeans. Individuals in other popula-
tions may be more likely to have CF caused
by mutations that do not occur on the stan-
dard carrier panel. Consequently, the detec-
tion rate is not the same across groups. This
is true for other conditions as well. Therefore,
couples must be counseled adequately about
the limitations of testing as well as its ben-
efi ts (see Box 21.3).
Genetic Testing for Adult-Onset
Disorders
Genetic testing for adult-onset disorders iden-
tifi es germline mutations in blood or tissue
samples that are linked to specifi c patterns of
disease risk. These illnesses typically pres-
ent in adulthood, as is the case Huntington’s
disease and certain cancers. Individuals may
present for genetic testing for a variety of rea-
sons. If an abnormality is discovered, a patient
or loved one is peridiagnostic, or if a family
history indicates patterns of genetic inheri-
tance, the individual may pursue genetic test-
ing to inform treatment decisions. Individuals
and couples frequently pursue genetic testing
to inform family planning. Early population-
based studies of interest in genetic testing for
adult disorders predicted signifi cant uptake,
yet only a small percentage of individuals and
families referred for genetic counseling com-
plete that testing (Struewing, Lerman, & Kase,
1995). Individuals with family histories of
disorders for which prevention and treatment
remain elusive pursue genetic testing even less
frequently than do individuals with disease for
which effective treatment exists (e.g., Decruy-
enaere et al., 1997).
Genetic testing may provide individuals
from families with extensive disease histories
with a sense of increased control over inherited
risk by minimizing uncertainty and opening
avenues for advanced and targeted preventive
medical care (Gooding, Organista, Burack, &
Biesecker, 2006). If genetic testing reveals a
genetic mutation, carriers must make crucial,
and frequently distressing, decisions, about
how to monitor their health (Erblich, Bovbjerg,
& Valdimarsdottir, 2000; Schlich-Bakker, ten
Kroode, & Ausems, 2006). Predominant mod-
els of health behavior suggest health decisions
are “rational” when informed by a combina-
tion of a risk–benefi t calculus, pressures from
and modeling of important others, beliefs
about control and mastery, and available re-
sources (see Chapter 6, “Theories of Health
Behavior”). Although socially focused models
of health behavior and decision making exist,
these models were conceptualized well before
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576 Health Social Work: Selected Areas of Practice
Box 21.3 Essential Skills for Social
Workers in Genetics
Social workers should develop skills to:
• Acquire a basic understanding about
genetics as a science and a fi eld of study,
including its biological, psychosocial,
ethical, and legal aspects.
• Gather relevant genetic family
history information, including a
multigenerational family history that
includes parents, children, siblings,
grandparents, aunts/uncles, and cousins.
• Identify clients who might benefi t from a
referral for genetic services.
• Properly communicate to clients the
purpose of genetic services and the role
of various genetic professionals.
• Provide culturally sensitive services
to clients with or at risk of developing
genetic conditions.
• Seek assistance from and refer to
appropriate genetics experts and peer
support resources.
• Explore with clients the possible range
of emotional effects they and family
members may experience as a result of
receiving or refusing genetic information.
• Assist clients and their families in the
genetic decision-making process and
in adapting to genetic information
throughout the life cycle.
• Discuss costs of genetic services and
insurance benefi ts.
• Safeguard privacy and confi dentiality
of genetic information of clients to the
extent possible.
• Facilitate the creation and maintenance of
support resources for clients with genetic
conditions.
• Obtain current genetic information from
reliable sources, for self, clients, and
colleagues.
• Educate clients, professionals, and the
community about policy issues regarding
genetics.
• Advocate for client-focused public policy
in genetics.
• Assist clients in understanding the
limitations and benefi ts of participating in
genetics research and the importance of
informed consent.
• Develop specialized knowledge and
understanding about the history,
traditions, values, and family systems of
client groups as they relate to genetics.
• Participate in multidisciplinary teams that
deliver comprehensive genetics services
and conduct genetics research.
• Contribute to the development of research-
based and practice-relevant knowledge
of the psychosocial, cultural, economic,
and ethical implications of genetics on
individuals, families, and society.
Source: NASW Standards for Integrating Genetics
into Social Work Practice by J. Weiss et al., 2003,
Washington, DC: NASW Press.
the genetic revolution and may prove insuf-
fi cient for the examination of individual and
family experiences with hereditary disease.
For example, these models do not take into
account the importance of family histories in
shaping cognitive representations of the illness
experience long before the individual experi-
ences a symptom or diagnosis, a scenario in
which grief, self-concept, and relational dy-
namics are tied intimately to illness expecta-
tions and decision making.
Risk assessment and subsequent medical
decision making often involve calculating
genetically determined disease risk against
other pressing psychosocial risks, such as the
burden of a potential diagnosis on loved ones
or anticipated decision regret from a specifi c
course of action (or inaction). Psychosocial
assessment of individuals pursuing genetic
testing for adult-onset disorders must take into
account the individual’s dependencies, inter-
dependencies, and obligations in family life.
These obligations intersect with (anticipated)
physical symptoms, affective factors that im-
pact information processing and coping, and
social contexts (Howard et al., 2009) to shape
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Social Work and Genetics 577
medical decision making about genetic test-
ing, risk management, and prevention. For ex-
ample, empirical fi ndings suggest these factors
shape the decision to complete risk-reducing
mastectomy, salpingo-oophorectomy, or col-
ectomy to minimize inherited cancer risk. In
the absence of illness, some individuals may
experience inertia in changing health behav-
iors. For others, anxiety and distress are con-
sistent predictors of how they manage disease
risk.
Genetic testing is available for some con-
ditions for which no treatments exist. For
disorders such as Huntington’s disease and
early-onset Alzheimer’s disease, risk is not
malleable via medical, surgical, or lifestyle
intervention. Living with uncertainty about
when and how a dormant genetic condition
will become symptomatic may increase an-
ticipatory mourning for a healthy identity and
challenge adaptive coping to genetic testing
results (Rolland, 2006).
Mapping Genetic Risk in Family
Histories
Uncertainty about genetic testing results (e.g.,
many BRCA variants are not yet linked to con-
crete risk information), disease penetrance (not
all gene mutation will lead to disease), illness
onset and course (Alzheimer’s disease onset
varies tremendously), and outcomes (whether
treatment will be effective in preventing or
treating disease) shape coping and adaptation.
Ambiguity challenges understandings of risk
and makes advance planning diffi cult. Given
that limited research addresses the variety of
factors that scatter gene alteration carriers
across spectrums of disease risk, clinicians
continue to look at family histories as predic-
tors of risk, as do individuals (Werner-Lin,
2007). Subjective perceptions of risk, couched
in family histories with disease rather than sta-
tistical risk estimates, are powerful predictors
of interest in and uptake of genetic testing and
risk management choices for high-risk indi-
viduals and families.
A pedigree is a multigenerational represen-
tation of patterns of biological inheritance and
disease expression that includes information
about the family’s geographic origins, births
and deaths, medical problems, birth defects,
and developmental delays (Bennett, 1999).
Designed to identify patterns of genetic inheri-
tance, a family pedigree focuses on biological
families (Atkinson, Parsons, & Featherstone,
2001; Kenen & Peters, 2001) rather than the
affective experiences and cognitive percep-
tions that guide health promotion and risk
management behaviors around inherited risk
(Patenaude, 2004). Early attempts to identify
the genetic mutation for increased breast and
ovarian cancer risk recruited families with
multiple affected members within and across
generations. In these studies, family history
tools such as the pedigree were used exten-
sively to identify patterns of illness expression
and to suggest genetic markers for disease risk
(e.g., Lynch & de la Chapelle, 2003).
Like the pedigree, a genogram maps mul-
tigenerational family patterns, helping to ex-
pand the family’s scope of attention from the
individual to the familial (Kenen & Peters,
2001; McDaniel, Rolland, Feetham, & Miller,
2006). A medically oriented genogram incor-
porates developmental, familial, community,
and social factors that infl uence and are af-
fected by disease expression and management
as well as the emotional sequela (McGoldrick,
Gerson, & Shellenberger, 1999). The process
of creating a family genogram can bring to
light shared and individual narratives and dis-
courses around familial disease (Eunpu, 1997)
and enable shifts in perceptions of disease risk
(Werner-Lin & Gardner, 2009).
Mounting evidence supports the notion that
individuals in families with ambiguous genetic
testing interpret their risk based on patterns
of illness expression in their families, family
loyalties, and visual and personality charac-
teristics (Werner-Lin, 2007). Reaching the age
of a parent at their diagnosis and reactions to
prior losses contribute to meaning attribution
about genetic testing results (Gabriel, 1992;
Werner-Lin, 2008). For example, signifi cant
illness milestones may increase anxiety or
anticipatory loss. As illness experiences ac-
cumulate and recur over generations, as they
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578 Health Social Work: Selected Areas of Practice
frequently do with hereditary disease, they be-
come family myths that include beliefs about
who gets sick and why, how families care for
ill members, appropriate modes of communi-
cation within the family and with outsiders,
and illness outcomes. Those who test negative
for genes linked to familial disease experience
their own unique challenges in integrating ge-
netic testing results, including survivor guilt,
the need to alter trajectories so that they no
longer make room for a future diagnosis, or
disbelief at test results (Bakos et al., 2008;
Sobel & Cowan, 2003).
Inherited Adult-Onset Disease Risk
Across the Life Cycle
The timing of genetic testing in the life course
plays a signifi cant role in coping with and ad-
aptation to testing results. Furthermore, coping
and adaptation to genetic information changes
over the life cycle, as salient developmental
tasks shift.
Childhood. Children growing up in homes
with parents affected by critical or termi-
nal illness frequently grow up faster than
peers because of responsibilities to maintain
the household or to care for ill parents and
younger siblings. Early parental loss drasti-
cally alters normative developmental trajec-
tories and shapes perceptions of vulnerability
to inherited disease in addition to coping and
medical decision making.
Adolescence. Treatment has improved sub-
stantially for some genetic conditions (e.g.,
cystic fi brosis), and children with genetic con-
ditions that previously were fatal now live well
into adulthood. Providers are not necessarily
prepared to address the concerns of adoles-
cents aging out of pediatric care. Research is
needed to identify the new challenges faced by
adolescents as their disorders shift from fatal
to chronic and as their care shifts from pedi-
atric clinics with holistic resources to adult fa-
cilities that rely on patients to coordinate and
manage their own care.
Young Adulthood. Individuals with inher-
ited disease risk frequently pursue genetic
testing during their reproductive years to in-
form marriage and family planning. Couples
may promise to love each other in sickness
and in health, yet the experience of creating
a life plan that integrates the possibility of
early illness and death is developmentally out
of sync with normative developmental tasks
of establishing intimate relationships and the
start of family planning. Inherited disease risk
may shape the qualities an individual seeks in
a life partner (Werner-Lin, 2008) as well as a
couple’s hopes and fears about family plan-
ning. Genetic testing during this life stage in-
forms: (a) life planning surrounding marriage,
childbearing, and professional development
(Hoskins, Roy, Peters, Loud, & Green, 2008);
(b) the adult’s capacity to remain healthy and
vital to parent a child; and (c) the child’s risk
of developing the same condition as they reach
adulthood. In some communities, such as Or-
thodox Jewish communities, genetic testing
provides information about one’s viability as a
spouse. Parents may feel responsibility to pro-
tect children from genetic conditions or may
experience guilt at potentially passing on ge-
netic mutations to children.
NEGOTIATING COMMON
ETHICAL CHALLENGES
Competent and skilled practice requires famil-
iarity with common ethical challenges faced by
health and mental health providers. Attempts
to deal with ethical dilemmas must rely both
on the National Association of Social Workers
Code of Ethics and on major principles of bio-
ethics, such as respect for autonomy, benefi –
cence, and justice. This section of the chapter
highlights some of the more challenging di-
lemmas confronting providers today, including
informed consent, family communication and
confi dentiality, patient autonomy, and genetic
testing of minors for adult-onset disorders.
Informed Consent
Originating in the doctrine of self-
determination, informed consent is a process
of communication between a provider and a
patient, during which the risks and benefi ts
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Social Work and Genetics 579
associated with a procedure are explained, thus
enabling the patient to make an educated and
personal choice about whether to proceed. In-
dividuals give informed consent when agreeing
to any medical procedure. This consent should
be voluntary and based on adequate and accu-
rate information and understanding. A variety
of issues challenge providers’ ability to obtain
informed consent across medical settings. For
example, some have argued that informed con-
sent procedures have suffered as prenatal ge-
netic testing became integrated into standard
prenatal care (McCoyd, 2010; Rapp, 1999).
Although genetics is not the only medical dis-
cipline that has struggled with how to ensure
informed consent, the nature of genetic re-
search and treatment protocols present unique
challenges. These protocols frequently involve
complex and sophisticated explanations of di-
agnostic, treatment, and research procedures.
That 90 million Americans have limited health
literacy means that individuals across a vari-
ety of medical and community settings might
agree to participate in protocols without suf-
fi cient understanding of the medical, social,
psychological, economic, and legal risks they
could incur.
Our ability to identify genetic vulnerability
to a condition continues to outpace medicine’s
ability to treat it, marking a signifi cant thera-
peutic gap (Holtzman & Watson, 1997) in ge-
netic medicine. The information contained in
informed consent documents presented at the
time of genetic testing may be confusing and
leave a person with unrealistic expectations or
false assumptions about test results (Freedman,
1997). A person considering genetic testing or
research participation in which genetic mark-
ers are used should engage voluntarily. There
may be internal (anxiety, fear) or external pres-
sures (family members or health-care provid-
ers) to engage in these activities. The question
of how well individuals understand consent
forms is subjective and is infl uenced by their
emotional state at the time. Thus, the stress
of genetic counseling and testing may limit
the patient’s or family’s ability to attend suf-
fi ciently to the detailed explication of the risk
and benefi ts of the procedure.
Currently, genetics research projects funded
by the National Institutes of Health (NIH) are
required to add genotype and phenotype data
into a single, large database (dbGAP) that can
be accessed by other NIH researchers. This
is a protected database, and access is heav-
ily regulated with specifi c attention to privacy
and confi dentiality. Pooling data among stud-
ies will increase the ability of researchers to
investigate genetic contributions to both rare
and common diseases, yet protocols using this
database do not routinely query patients who
have provided blood samples or tissue about
informed consent that addresses confi dential-
ity, the scope of future research, or the return
of laboratory results (Ludman et al., 2010;
Wolf, Bouley, & McCulloch, 2010).
Current protocols also have led to questions
about the ownership of genetic material and
about who should benefi t from genetic discov-
eries. These issues are explored in the recent
biography of Henrietta Lacks, who unknow-
ingly “donated” the fi rst human cells success-
fully cultured in a laboratory (Skloot, 2010).
Although discoveries using her cells (called
HeLa cells) led to signifi cant breakthroughs in
public health, her children and grandchildren
remain impoverished and uninsured. Further-
more, they did not know that Ms. Lacks’s cells
had been obtained, cultured, or used for scien-
tifi c research. Although new protections exist
to prevent such situations, genetic research
has identifi ed signifi cant gaps that remain in
informed consent protocols for research.
Family Communication and
Confi dentiality
The familial implications of identifying ge-
netic links to conditions and traits shifts the
existing biomedical paradigm that focuses on
the rights of the individual patient to a broader
focus on the rights of family members. Al-
though genetic testing information may be
probabilistic, genetic testing of one family
member for a condition may identify other
family members at risk. This may motivate in-
dividuals to pursue testing, as in the case of
a perimenopausal woman with a breast cancer
JWBT514_ch21.indd 579JWBT514_ch21.indd 579 9/21/11 7:46 PM9/21/11 7:46 PM
580 Health Social Work: Selected Areas of Practice
diagnosis who pursues genetic testing not only
to inform her own treatment decisions, but also
to identify risk to her children. Patients may
withhold genetic testing information from fam-
ily members because they do not want to upset
bereaved loved ones if they are estranged, if
they perceive family members are unlikely to
take action, or if they want to keep their risk
information private (Offi t, Groeger, Turner,
Wadsworth & Weiser, 2004; Patenaude, 2004).
Genetic research using a family systems
lens identifi ed challenging family roles created
by the possibility of genetic testing. The fi rst
individual in a family to pursue testing and to
discuss risk with family members is the mes-
senger of genetic information. Children test-
ing positive for a recessive or X-linked genetic
condition may identify parents as obligate
carriers (Adelsward & Sachs, 2003, Dudokde
Wit et al., 1997). Obligate carriers and others
implicated by genetic testing in the bloodline
may be unprepared to learn about or address
their risk. Furthermore, perceptions of risk may
be skewed, if risk information is communi-
cated unclearly or inaccurately within families
(Smith, Dancyger, Wallace, & Michie, 2010).
If genetic testing reveals risk information
about an entire bloodline, the needs of the en-
tire family must be considered. Providers may
be challenged to help family members ap-
proach this question in a way that is respectful
to everyone. Facilitating disclosure of genetic
testing results in families includes attention
to the rights of family members not to know.
The concerns of individual family members
unprepared to address and use genetic test-
ing information reach beyond health risks;
this information may impact mental health,
individual development and family formation,
relationship, and dynamics (Gilbar, 2007). So-
cial work training includes skills that can be
applied to support planned disclosure and to
facilitate family discussion of genetic testing.
Because genetic testing reveals risk informa-
tion for an entire family, individuals who do not
know they may have inherited disease risk do
not have the opportunity to engage in treatment
or prevention. If treatments are available to pre-
vent a fatal illness or improve quality of life and
prevent suffering, are doctors obligated to share
genetic information with other members of the
bloodline? The Health Insurance Portability
and Accountability Act requires physicians to
breech confi dentiality to “prevent or lessen a
serious and immediate threat” (Department of
Health and Human Services, www.hhs.gov/
ocr/privacy/hipaa/understanding/summary
/index.html). The Institute of Medicine concurs
that when failure to communicate genetic in-
formation can result in serious, imminent harm
or death, the physician may contact the family
if the patient has not done so. Although some
genetic diseases follow predictable patterns of
expression, many inherited predispositions are
ambiguous and uncertain, leaving signifi cant
gray area in interpreting federal policy and
medical guidelines.
Patient Autonomy and Testing Minors
Children constitute an especially vulnerable
group in terms of genetic screening, because
they are dependent on adults (Knoppers,
Avard, Cardinal, & Glass, 2002). When a ge-
netic condition presents in childhood, genetic
testing before the child is symptomatic, or
as the child becomes symptomatic, may help
physicians to manage the condition medically
(Field, Shanley, & Kirk, 2007).
Genetic testing of minors is more ethically
questionable for disorders that present later in
life. These disorders vary widely, and fami-
lies should be discouraged from genetic test-
ing, unless children and teens can benefi t from
testing before they reach adulthood. The pro-
fessional ethics of both geneticists and genetic
counselors do not support testing children for
adult onset disorders in most circumstances
(e.g., the National Society of Genetic
Counselors position statement, 1995). This
is because they believe that children should
have the right to decide about testing when
they reach adulthood. Beyond the inability
of a child to give informed consent, genetic
testing in childhood presents a host of ethi-
cal and social concerns for children and fami-
lies. Genetic testing in childhood removes
children’s right to know (or not know) their
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Social Work and Genetics 581
genetic status; opens them up to the possi-
bility of discrimination in social, academic,
and medical settings; and may impact their
self-concept, self-esteem, and the ways they
are parented (Ross & Fost, 2006). Although
genetic testing at any stage of the life cycle
informs family planning, testing during child-
hood removes reproductive confi dentiality
and may shape the messages children receive
about becoming parents. Furthermore, the ab-
stract nature of probabilistic risk information
is hard for adults to comprehend; it is even
more diffi cult for children to do so, as they
have not yet developed the cognitive tools to
understand abstractions or probability, or may
be learning about their risk from parents with
skewed perceptions or distinct motivations.
Finally, as prenatal testing becomes more so-
phisticated, parents may be able to decide to
pursue prenatal genetic testing for adult-onset
conditions, whether to make decisions about
pregnancy termination or to skirt recommen-
dations against genetic testing in childhood.
This means that a child may be born as a
known carrier of a genetic condition that is
unlikely to present for decades.
No legally defi nitive statement regulates the
testing of minors for genetic conditions pre-
senting in adulthood. In the absence of legal
guidance, bioethicists and health and mental
health professionals are left to debate what is
in the best interests of the child. Who is in the
best position to decide for or about the child?
Although parents express considerable inter-
est in genetic testing for adult-onset disorders
during childhood, such testing is not recom-
mended when no treatments exist for children.
This is particularly evident when genetic test-
ing may result in psychosocial harm (stigma,
self-esteem) to the child and the family. Al-
though parental anxiety may be reduced by
genetic testing, families may have problems
planning and adjusting expectations about the
child’s life and abilities. Parents may benefi t
from an explanation of why testing is not in the
child’s best interest. Children may be (uninten-
tionally) coerced by parents or feel motivated
by a parent’s guilt and distress to pursue test-
ing (Wilfond & Ross, 2009). Instead, children
should be informed about genetic testing after
they reach adulthood (McConkie-Rosell &
Spiridigliozzi, 2004).
POLICY DEVELOPMENTS
Health-care professionals and individuals,
families, and groups pursuing genetic testing
have been hindered by the concern that results
might be used for discriminatory purposes. Of
specifi c concern is the impact of genetic test-
ing information on health insurance coverage
and deductibles and other fees. In a few cases,
employers inappropriately have required ge-
netic testing of employees and then used
results to make employment or promotion de-
cisions. Although the civil rights of individuals
with genetic conditions are protected under the
Americans with Disabilities Act, protection
from other types of discrimination does not
exist. These concerns constitute a signifi cant
barrier to genetic services, particularly genetic
testing.
After a 13-year process that culminated in
May 2008, President George W. Bush signed
the Genetic Information Nondiscrimination
Act (GINA) into law (see Box 21.4). All as-
pects of the law were in effect as of November
2009. GINA was created to remove barriers to
the appropriate use of genetic services. The
legislation protects the public from the mis-
use of genetic information by health insurers
and employers. GINA amended laws that do
not apply to certain groups of individuals re-
ceiving federal benefi ts. Those excluded are
members of the United States military, veter-
ans obtaining health care through the Veterans
Administration, individuals using the Indian
Health Service, or federal employees enrolled
in the Federal Employees Health Benefi ts
program. However, the military and veterans’
health-care systems have policies in place that
provide protections similar to GINA. Federal
employees likewise are protected by an execu-
tive order that was signed by President Clin-
ton in 2000. Despite its limitations, GINA is
landmark legislation that removes a signifi cant
barrier to genetic testing.
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582 Health Social Work: Selected Areas of Practice
Box 21.4 Genetic Information
Nondiscrimination Act
Genetic Information Nondiscrimination Act
(GINA) states:
Under GINA, group and individual health
insurers cannot:
• Use a person’s genetic information to
set eligibility requirements or establish
premium or contribution amounts.
• Request or require that a person undergo
a genetic test.
Under GINA, employers cannot:
• Use a person’s genetic information
in decisions about hiring, fi ring, job
assignments, or promotions.
• Request, require, or purchase genetic
information about an employee or family
member.
GINA protects genetic information
related to:
• Family medical history.
• Carrier testing: that is, cystic fi brosis,
sickle cell anemia, spinal muscular
atrophy, fragile X, and other conditions.
• Prenatal genetic testing: that is,
amniocentesis, chorionic villus sampling,
and other techniques.
• Susceptibility and predictive testing:
for example, BRCA testing for risk of
breast or ovarian cancer, testing for
Huntington’s disease, or HNPCC testing
for risk of colon cancer.
• Analysis of tumors or other assessments
of genes, mutations, or chromosomal
changes.
GINA does not protect against or apply to:
• A condition that is already diagnosed and
manifest, even if that condition is genetic.
• Life, disability, or long-term-care insurers
(as of the date listed on this document).
• Information about current health status.
• Employers with fewer than 15 employees.
GINA does not protect certain groups of
individuals.
Source: The Genetic Nondiscrimination Act (GINA),
National Coalition of Health Professional Education in
Genetics, 2010. Retrieved from www.nchpeg.org/index
.php?option=com_content&view=article&id=97&Item
id=120
CONCLUSION
Genetic discovery may provide new interpre-
tive frames for the meaning and cause of dis-
ease. The movement toward consumer-driven
health care is challenged by the combination
of limited health literacy and the beliefs about
the promise of genetic discoveries that have
yet to develop. Recognizing genetic, as well as
environmental, factors that impact conditions
and traits will allow social workers, in part-
nership with other health and mental health
professionals, to develop interventions and
resources that are targeted to educating and
supporting the unique circumstances of indi-
viduals, families, and communities.
Adapting to and integrating genetic informa-
tion into a life plan is an ongoing process, with
fl uctuating periods of tranquility and distress.
For individuals from families with extensive
disease histories, genetic explanations may in-
crease distress and anticipatory loss by altering
expectations about future health status. Alterna-
tively, genetic mechanisms and the ability to test
for the presence (or absence) of a disease-re-
lated mutation may enable patients to construct
life plans that maximize healthy years. Whereas
contact with genetic counselors and physicians
is time limited, an underestimated strength of
social work in genetics is social workers’ abil-
ity to have ongoing contact with clients and
their families (Weiss et al. 2003). The potential
for prolonged contact with mental health ser-
vices allows social workers to facilitate adapta-
tion and coping over extended periods of time
and throughout the life cycle as new concerns
emerge and the meaning of risk shifts. Social
workers are in a unique position to develop and
implement relevant programs to provide ongo-
ing support for families with educational and
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http://www.nchpeg.org/index.php?option=com_content&view=article&id=97&Itemid=120
http://www.nchpeg.org/index.php?option=com_content&view=article&id=97&Itemid=120
Social Work and Genetics 583
supportive services delivered at key points in
the adaptation to genetic conditions (Taylor-
Brown & Johnson, 1998).
SUGGESTED LEARNING
EXERCISES
Read the exercises and discuss how you would
help clients deal with their genetic concerns.
Learning Exercise 21.1
Tina and Jon are referred to a social worker
after routine ultrasound identifi ed multiple
birth defects in their developing baby. The spe-
cifi c pattern of defects indicates their child has
a rare, inherited genetic condition. After the
initial diagnosis by the obstetrician, the couple
met with a fetal-maternal specialist at a medi-
cal center who performed a high-resolution ul-
trasound and confi rmed the fi ndings. Because
the couple is only eight weeks from the due
date, pregnancy termination is not an option.
The couple was referred for genetic counsel-
ing after the diagnosis. The genetic counselor
explored Tina and Jon’s family medical histo-
ries and documented that no one has reported
a stillbirth or neonatal death in three genera-
tions. Tina is 31 years old, and this is her fi rst
pregnancy. She has two older sisters and sev-
eral nieces and nephews who are healthy. Jon
is 38 years old and has two healthy school-age
children from a previous marriage who stay
with the couple on alternating weekends. The
genetic counselor tells Tina and Jon that each
of them carries a specifi c gene alteration and
when they both pass the gene on to a child,
the presence of the two altered genes will re-
sult in disruption of fetal development. There
is no genetic test to confi rm this diagnosis.
Furthermore, each child they conceive has a
25% chance of inheriting both altered forms of
the gene. Both appear to be too distracted and
angry to absorb this risk information.
Tina and Jon are both distraught that so
little is known about their baby’s condition.
Both are appropriately concerned and fright-
ened. Jon is worried about Tina and how this
baby will impact her and their marriage. Tina
is angry that she needs to wait and see what
happens at delivery. When Jon is out of the
room, she tells you she is jealous that Jon’s
other children are fi ne and worries about what
she might have done to deserve this, to “ruin”
her baby. Jon is not sleeping and is actively
engaging Tina in discussions about a timeline
and plans for conceiving the next baby.
1. Draw a genogram of this family, indicating
both medical and family data.
2. What are the key pieces of information
about the genetic condition? What is the
mode of inheritance? Describe the risk to
each future pregnancy.
3. You recognize that you need better
information to counsel this couple. Find
resources that will help you learn about this
condition so that you can support them in
their efforts at family planning.
4. What are the primary psychosocial concerns
this couple might face after the child is
born?
5. Prioritize these psychosocial concerns, and
identify interventions and resources that
will help support the family in your com-
munity.
Learning Exercise 21.2
Carolyn and Michael have been attempting
to achieve a pregnancy since their wedding
8 months ago. Carolyn is 39 years old, and
Michael is anxious about her fertility be-
cause of her age. Carolyn’s mother was di-
agnosed with breast cancer at age 46 and
died at age 51. Carolyn’s maternal aunt and
grandmother also died of breast cancer. After
meeting Michael, Carolyn pursued genetic
testing and was found to carry a BRCA1
genetic mutation. Carolyn is eager to have
children quickly given her age and her de-
sire to complete risk-reducing mastectomy
(surgical removal of breasts) and salpingo-
oophorectomy (surgical removal of her ova-
ries and fallopian tubes) to minimize her
chances of developing cancer.
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584 Health Social Work: Selected Areas of Practice
For fertility reasons, Carolyn asks for a
referral to a reproductive endocrinologist to
discuss assisted reproduction. Michael and
Carolyn come to the fi rst appointment with
questions in hand and a growing sense of ur-
gency. Their consultation leads to several test-
ing appointments with the good news that no
obvious clinical condition appears to exist.
During the discussion of what interventions
might have the best success, the reproductive
endocrinologist brings up the BRCA1 mutation
and introduces the possibility of pre-implanta-
tion genetic diagnosis (PGD) in combination
with in vitro fertilization (IVF). PGD screens
embryos from IVF for the BRCA1 mutation,
thus allowing only embryos without the muta-
tion to be implanted. IVF is not guaranteed
to achieve a successful pregnancy. The doc-
tor advises the couple that there is no good
data about the impact of IVF-associated
hormone treatment on breast cancer risk for
women with a BRCA mutation. The data for
women at average risk for breast cancer show
that there is no increased breast cancer risk
associated with the hormone treatment. PGD
is an additional cost on top of IVF, which is
generally costly and not always covered by
insurance.
Carolyn is interested in pursuing PGD.
She discusses the procedure with her sisters,
both physicians, and they agree that it is an
attractive option. Michael is not interested in
pursuing PGD. He is concerned about expense
and the impact of the hormone treatments on
Carolyn’s cancer risk, especially given how
close in age she is to when her mother was
diagnosed initially. Carolyn and Michael meet
with a genetic counselor who explains that,
because of their age, there is a slightly greater
than 1% chance that any fetus they conceive
may have a chromosomal abnormality. Mi-
chael is very concerned about the risk and
would like to conceive quickly. Carolyn feels
differently; compared to her lifetime risk of
developing cancer, her interpretation of chro-
mosomal risk is more positive: a 99% chance
that a conception at this age will not have any
chromosomal abnormalities. She would like
to proceed immediately with PGD. Michael
disagrees, stating they should not interfere
with the natural process of creating a baby
if no obvious fertility issue exists, since they
have been trying to conceive for less than 12
months, and the baby may not inherit the mu-
tation. Carolyn disagrees and feels very disap-
pointed in Michael. She begins to experience
severe anxiety, and they argue regularly. The
couple is referred to you for counseling.
1. Draw a genogram of this family, indicating
both medical and family data.
2. The couple has a number of competing
pragmatic and emotional concerns. De-
scribe these concerns and how they are re-
lated to perceptions of risk.
3. You recognize that you need better informa-
tion to counsel this couple. Find resources
that will help you learn about these condi-
tions so that you can support them in their
efforts at family planning.
4. Identify targets for change and appropriate
interventions to support the couple.
SUGGESTED RESOURCES
American College for Medical Genetics—
www.acmg.net
This site provides information about
clinical geneticists and includes a search
function to locate a clinical geneticist.
The site also presents educational
materials, including information about
newborn screening and statements
covering a variety of genetics issues.
Centre for Genetics Education—www.gen
etics.com.au/home.asp
The Centre for Genetics Education
is dedicated to providing current
and relevant genetics information
to individuals and family members
affected by genetic conditions and to
professionals who work with them.
Duke Center for Human Genetics—www
.chg.duke.edu/education/online.html
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http://www.acmg.net
http://www.genetics.com.au/home.asp
http://www.genetics.com.au/home.asp
http://www.chg.duke.edu/education/online.html
http://www.chg.duke.edu/education/online.html
Social Work and Genetics 585
The mission of the Duke Center for
Human Genetics is to discover genetic
infl uences on human health, to charac-
terize the relationship between genetic
and environmental infl uences, and to
foster the application of this knowledge
to the practice of medicine. The site con-
tains online educational programs for a
variety of audiences as well as research
resources.
Genetic Alliance—www.geneticalliance.org
Genetic Alliance was started by so-
cial workers to increase the ability of
genetic advocacy groups to achieve
their missions and leverage the voices
of millions of individuals and families
living with genetic conditions. The al-
liance has an annual conference, links
to support groups for common and rare
conditions, advocacy resources includ-
ing specialty issue teams (e.g., access,
disparities), a resource repository for
educational materials and presentations,
and news.
Genetic and Rare Conditions Site—www
.kumc.edu/gec
The University of Kansas Medical
Center has links to lay advocacy and sup-
port groups and information on genetic
conditions/birth defects for profession-
als, educators, and individuals, national
and international organizations.
Genetics and Public Policy Center—www
.dnapolicy.org
The center helps policy leaders, deci-
sion makers, and the public better under-
stand and respond to the challenges and
opportunities arising from advances in
genetics and their application to human
health and well-being. The center’s mul-
tidisciplinary team monitors advances in
human genetics and their translation into
clinical applications and conducts quali-
tative and quantitative social science and
legal and policy analysis.
Genetics Science Learning Center—http://
learn.genetics.utah.edu/gslc/
The Genetics Science Learning Cen-
ter is a science and health education
program that aims to make biology and
genetics concepts accessible. It provides
educational materials and interactive
programs on genetics for local and glob-
al audiences.
National Coalition of Health Professional
Education in Genetics—www.nchpeg.org
NCHPEG promotes health profes-
sional education and access to infor-
mation about advances in human ge-
netics. NCHPEG draws on the collec-
tive experience and expertise of mul-
tiple organizations, professionals, and
specialists to promote genetics educa-
tion. The Web site offers free, online
educational programs for a variety of
audiences as well as biannual newslet-
ters, core competencies in genetics,
and information from the annual pro-
fessional meetings.
National Human Genome Research Insti-
tute (NHGRI) at the National Institutes
of Health—www.genome.gov
NHGRI is one of the 27 institutes and
centers at National Institutes of Health.
NHGRI led NIH’s efforts toward the Inter-
national Human Genome Project, which
had as its primary goal the sequencing
of the human genome. This project was
completed successfully in April 2003.
Now the NHGRI’s mission has expanded
to encompass a broad range of studies
aimed at understanding the structure and
function of the human genome and its
role in health and disease. The Web site
has informational and educational materi-
als about all aspects of genetics.
National Society of Genetic Counselors—
www.nsgc.org
This site provides information about
genetic counseling and a search feature
to assist people to fi nd a genetic coun-
selor. It also includes a list of resources
for patients concerned about genetic dis-
crimination.
JWBT514_ch21.indd 585JWBT514_ch21.indd 585 9/21/11 7:46 PM9/21/11 7:46 PM
http://www.geneticalliance.org
http://learn.genetics.utah.edu/gslc
http://learn.genetics.utah.edu/gslc
http://www.nchpeg.org
http://www.genome.gov
http://www.nsgc.org
http://www.kumc.edu/gec
http://www.kumc.edu/gec
http://www.dnapolicy.org
http://www.dnapolicy.org
586 Health Social Work: Selected Areas of Practice
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22
Pain Management and
Palliative Care
TERRY ALTILIO, SHIRLEY OTIS-GREEN, SUSAN HEDLUND, AND IRIS COHEN FINEBERG
The unique values that inform the purpose and
perspective of social work practice are essen-
tial to the provision of quality palliative care
and comprehensive pain management. Social
workers historically have seen the alleviation
of suffering as part of their mission, and this
is refl ected in a code of ethics that supports
service, social justice, respect for the dignity
and worth of the person, a belief in the cen-
tral importance of human relationships, integ-
rity, and competence (National Association of
Social Workers [NASW], 1999). These ideals
are woven through the fi elds of palliative care
and pain management, yet social work has not
been fully engaged in these areas of practice.
In addition to shared values however, knowl-
edge and expertise is essential if social work is
to strengthen its voice in these practice arenas.
In this chapter, we discuss the interface of val-
ues and knowledge and detail the richness of
opportunity presented to social workers in the
fi elds of palliative care and comprehensive pain
management.
Chapter Objectives
• Defi ne palliative care, including domains
and guidelines established by the National
Consensus Project for Quality Palliative
Care and the preferred practices endorsed
by the National Quality Forum.
• Defi ne and distinguish pain and symptom
management as both a focus of palliative
care as well as an independent focus of so-
cial work practice.
• Confi rm the unique opportunity and histori-
cal framework of palliative care that invites
social work participation and leadership in
this area of practice, and explore the obsta-
cles to realizing the opportunity.
• Describe aspects of a biopsychosocial-
spiritual assessment that inform a plan of care
in palliative care and pain management.
• Defi ne interventions, and illustrate their
usefulness through patient narratives.
• Discuss ethical principles that relate to
palliative care and the management of pain.
• Explore various models of team collabora-
tion, sources of professional gratifi cation
and work-related stress, and opportunities
for enhancing self-care.
PALLIATIVE CARE AND
PAIN MANAGEMENT: AN
OVERVIEW
The chapter fi rst focuses on palliative care and its
comprehensive approach to the care of patients
with life-threatening illness. Although pain and
symptom management are included as a core pal-
liative care skill, a separate section discusses pain
management as an independent subspecialty.
Underlying both practice areas is a multidimen-
sional focus encompassing biological, emotional,
cognitive, socioeconomic, cultural, and spiritual
aspects of the unique experience of patients and
families. It is at this critical, yet nuanced, nexus
that social work expertise is essential.
Palliative Care
According to the American Heritage Dic-
tionary, palliate means “to alleviate without
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Pain Management and Palliative Care 591
cure.” The World Health Organization (WHO,
n.d.) has adapted this basic defi nition to in-
clude that palliative care improves the quality
of life of patients and families who are fac-
ing life-threatening illness through preven-
tion and relief of suffering. Quality-of-life
improvement might be achieved through the
assessment and treatment of pain and other
physical, psychosocial, and spiritual distress.
Palliative care is important throughout the
course of illness and may be integrated with
disease-modifying therapies that are intended
to prolong life. For example, palliative care
may be incorporated with chemotherapy and
radiation therapy in an oncology setting. In
chronic renal disease, it may be provided
along with dialysis. Interventions are adapted
to the changing course of illnesses, such as
when disease-modifying therapies lose their
benefi t or appropriateness. When this oc-
curs, palliative care may become the primary
focus of intervention. Palliative interventions
affi rm life and treat dying as a natural pro-
cess. Clinicians generally work together as a
team to assist patients and families, including
children, to live as actively as possible with
enhanced quality of life. Social workers help
patients and members of their social support
networks to cope during illness and their own
bereavement. Palliative care interventions
may include referral to a hospice program
and a team-based program of care, support,
and bereavement services for persons whose
life expectancy is six months or fewer.
Pain and symptom management are essen-
tial components of palliative care, because
uncontrolled pain and symptoms not only
shape the lived experience of the patient,
family, and staff but also infl uence bereave-
ment and the legacy of the illness as it be-
comes integrated into the family narrative.
Families describe this dynamic through com-
ments such as “My mother suffered terrible
pain; I cannot bear to think that my husband
will suffer in the same way.” The desire to
create a family legacy of comfort and respect
is one of the factors that drives the shared
professional commitment to symptom as-
sessment and intervention.
Pain Management
Although pain and symptom management are
essential foci of palliative care, pain manage-
ment as a specialty extends beyond life-limiting
illness to chronic conditions such as migraine
headaches, fi bromyalgia, arthritis, and back pain.
In 2006, the National Center for Health Statis-
tics reported that more than 26% of Americans
age 20 years and older had a pain problem dur-
ing the last month that lasted for more than 24
hours. Thirty percent of adults age 45 to 64 years
and 21% of persons age 65 years and older re-
ported pain that lasted more than 24 hours. An
estimated 9% of the U.S. adult population suf-
fers from moderate to severe pain at any point in
time (Roper Starch Worldwide, 1999). Although
not necessarily life limiting, these conditions can
force major life adaptation. As in palliative care,
assessment and treatment ideally is based on a
biopsychosocial-spiritual model. As a generic
concept, pain management refers to both chronic
and acute pain. The populations highlighted in
this chapter include people who experience pain
as a consequence of a life-limiting illness and
those who are affected by chronic pain.
The International Association for the Study
of Pain (2010) defi nes pain as
an unpleasant sensory and emotional experi-
ence associated with actual or potential tis-
sue damage, or described in terms of such
damage. Although it is unquestionably a
sensation in part or parts of the body, it is
always unpleasant and, therefore, an emo-
tional experience. (www.iasp-pain.org/AM
/Template.cfm?Section=Pain_Defi %20.isplay
.cfm&ContentID=1728#Pain)
It is clear from this defi nition that pain in-
volves the physical and emotional self at a
very basic level.
Acute pain differs from chronic pain in that it
has a clear onset, follows an injury, and often but
not always is accompanied by objective physi-
cal signs of autonomic nervous system activity,
such as increased heart rate. It is self-limited,
and its duration roughly parallels the healing of
the injury. An example might be a fractured toe
or a toothache. Chronic pain is largely defi ned
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http://www.iasp-pain.org/AM/Template.cfm?Section=Pain_Defi%20.isplay.cfm&ContentID=1728#Pain
http://www.iasp-pain.org/AM/Template.cfm?Section=Pain_Defi%20.isplay.cfm&ContentID=1728#Pain
http://www.iasp-pain.org/AM/Template.cfm?Section=Pain_Defi%20.isplay.cfm&ContentID=1728#Pain
592 Health Social Work: Selected Areas of Practice
temporally, and although it may begin as acute,
it continues beyond the normal period of heal-
ing. Because pain may not be associated with
observable tissue injury or sympathetic nervous
system arousal, chronic pain may not be visible
to others. This absence of objective signs often
confounds inexperienced clinicians, who may
conclude that patients’ pain is not real and chal-
lenge their credibility (American Pain Society,
2003). This can be distressing for patients who
may feel diminished by the experience.
A key characteristic of chronic pain from
the patient’s perspective is that it becomes like
any other chronic illness. That is, as opposed
to acute pain, the focus of care often shifts
from searching for a cause and cure to manag-
ing the pain itself. Comprehensive assessment
and interventions extend beyond the physical
to psychological, social, cultural, and spiritual
aspects of the patient’s experience, compa-
rable to the clinical assessment appropriate to
palliative care patients and their families. Col-
laborative goals might include minimizing suf-
fering and the negative impact of chronic pain
and enhancing functioning and quality of life.
Challenges and Opportunities
Principles and values underlying palliative care
and pain treatment have much in common with
those of social work. In both, comprehensive
quality assessment is individualized, patient
and family centered, and multidimensional and
includes biological, social, emotional, spiritual,
and environmental factors that interact and con-
tribute to an understanding of the patient and
family experience. Underlying values that inform
this process are a respect for the central impor-
tance of human relationships and an affi rmation
of the person-in-environment paradigm in all of
its manifestations (Roy, 1981). Consideration
of patient and family values, needs, beliefs, and
goals is implicit in the principle of respect for
the dignity and worth of the person. Historically,
health social workers have championed the idea
that context, community, and family are critical
components of the illness experience of patients.
Ida M. Cannon, who led the fi rst social work de-
partment at Massachusetts General Hospital (see
Chapter 1 in this book), saw the task of helping
physicians understand the impact of the com-
munity and social context as essential to social
work. This is a unique perspective that is a core
element of both palliative care and pain manage-
ment. The impact and potential of this role are
enhanced by the plethora of interventions, ethical
concerns, and policy issues that invite the par-
ticipation of compassionate and competent social
work clinicians to these two specialty areas of
practice (Roff, 2001).
Rich opportunities exist concurrently with
signifi cant challenges for health social work-
ers in palliative care and pain management.
Although there are likely a myriad reasons for
social work’s lack of leadership in the two
fi elds, lack of adequate training is perhaps
the most salient. Increasing numbers of so-
cial workers are seeking mentorship in pal-
liative and end-of-life care, yet many see pain
and symptom management as outside their
scope of practice. Very few social workers
are exposed to pain management as a poten-
tial specialty practice. Schools of social work
make diffi cult, complex decisions about cur-
riculum content, and even though death is a
universal experience, the topic typically is
taught only as an elective course. Pain has
been viewed largely as a physical problem,
and the biopsychosocial-spiritual focus has
come primarily from the fi elds of psychiatry
and psychology. Few social workers practice
in pain management programs in which their
person-in-environment and strengths perspec-
tive can be well utilized. Many social work-
ers in health-care settings struggle with the
impact of shortened stays, competing priori-
ties, and increasing caseloads. Counseling and
pain management interventions may not seem
sustainable in understaffed, managed care en-
vironments. (See Chapter 5 in this book for
an explanation of managed care.) Historically,
social workers have been less accountable for
providing evidence-based interventions than
their colleagues in nursing and medicine.
At the same time that the number of pal-
liative care programs is increasing, these
programs are expanding into settings such as
extended-care facilities and home care. The
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Pain Management and Palliative Care 593
Center to Advance Palliative Care (2008) has
defi ned doctors, nurses, and social workers as
team members. In 2009, the NASW published
Standards for Social Work Practice in Pal-
liative and End-of-Life Care (NASW, 2009b),
which included 12 standards that cover eth-
ics and values, knowledge, assessment, inter-
vention and treatment planning, attitude and
self-awareness, empowerment and advocacy,
documentation, interdisciplinary teamwork,
cultural competence, continuing education and
leadership, supervision, and training. NASW
developed two Internet courses to further social
workers’ continuing education: Understand-
ing End-of-Life Care and Social Work’s Role
and Achieving Cultural Competence in Reduc-
ing Health Disparities in End-of-Life Care. In
2008, the NASW and the National Hospice
and Palliative Care Organization collaborated
to develop a social work credential in hospice
and palliative care (NASW, 2009a). Concur-
rently, accreditation agencies such as the Joint
Commission (2010) include pain, palliative,
and end-of-life care in their standards, creat-
ing opportunities for skilled social workers to
participate in and lead institutional initiatives
with the goal of both expanding their scope of
service and improving patient care.
Social workers who work in any venue—
including hospitals, public agencies, hospices,
methadone maintenance programs, prisons,
long-term care facilities, private practices,
and government programs—have the oppor-
tunity to enhance the care of patients and the
adaptation of patients and families affected
by chronic or life-limiting illness. This broad
range of practice settings creates a potential
for quality care to be transferred from for-
mal health-care institutions to the community.
Although these settings may impose specifi c
challenges, generic competencies and values
underlie the social work approach. Understand-
ing how community, culture, and institutional
and family dynamics impact palliative care is-
sues or pain experiences informs and guides
intervention. For example, in a rural commu-
nity in which pain often accompanies physi-
cal labor and thus is expected, it is important
to recognize that a new pain may be ignored
or minimized until it interferes with work. In
the prison population, tolerating pain may be
a sign of strength and a defense against vul-
nerability. Expression of need or a request for
care, even in cases of life-limiting illness, may
be viewed by others as a sign of weakness. In-
mates might avoid any medication that would
impact their alertness and awareness of their
surroundings. In a prison environment, coping
skills that utilize internal processes such as re-
laxation, imagery, and focused breathing have
the potential to restore some control and en-
hance internal comfort, thus minimizing suf-
fering (Enders, 2004; Linder & Enders, 2011).
HISTORICAL PERSPECTIVE
Principles and behaviors that inform the work
of palliative care and the treatment of pain
have their roots in human antiquity and serve
a vital social function. A historic tension ex-
ists between society’s desire to fl ee from the
ill, injured, or dead and our recognition that
the vulnerable need assistance in order to sur-
vive. The need to fl ee is based on the fear that
others’ misfortune may befall us. At the same
time, the desire to help the vulnerable and suf-
fering is derived from an empathic understand-
ing that we potentially need others for our own
optimal survival. Caring for those who suffer
reinforces important social bonds and the ca-
pacity to be empathic. Each society throughout
history has evolved special ways of caring for
its suffering, dying, and bereaved members.
For example, shamans or healers proscribed
behavior and offered guidance in times of cri-
sis. Those who “know what to do” offer com-
fort, and such healers might be considered our
earliest social work ancestors as they provided
what might be thought of as early psychoedu-
cational and spiritual support and expertise.
Until recently, limited interventions were
available to infl uence the course of illness, so
the alleviation of pain and suffering frequently
was the most one could hope for. Palliative
care was often the only means of medical in-
tervention for those with serious illness. These
earliest healers typically offered integrated
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594 Health Social Work: Selected Areas of Practice
spiritual, herbal, and behavioral interventions
to normalize concerns and support the dying
and their families. Compassionate support
during illness or injury was the imperative, al-
though the fi nal outcome of illness or injury
was understood to be outside of the healer’s
control. From the origin of human life until
the development of widespread improvements
in sanitation and public health and the advent
of anesthesia, antibiotics, and other medical
breakthroughs, people typically died relatively
quickly after the onset of serious illness (Lynn,
Schuster, & Kabcenell, 2000).
The origin of the words hospice and hospi-
tal date back to the fourth century. During the
Middle Ages, hospices were established at key
crossroads on the ways to religious shrines.
These shelters helped pilgrims, many of whom
were traveling to shrines in search of cures and
many of whom died while on their pilgrimage.
Returning crusaders, often ill or wounded, also
died at these hospices, strengthening the asso-
ciation of hospices as places for the dying and
destitute (Koppelman, 2003).
In addition to linguistic history, philosophi-
cal perspectives infused the evolution of med-
icine and the care of the sick. For example,
the seventeenth-century lawyer and mathema-
tician René Descartes popularized the dualis-
tic-mechanistic model, which suggested that
the body belonged to the realm of science and
the spirit to the realm of religion (Koppelman,
2003). This set the stage for the “medicaliz-
ing” of dying, and by the mid-20th century, al-
most 80% of people in the United States died
in a hospital or nursing home (Koppelman,
2003). This changing death trajectory coin-
cided with the widespread use of antibiotics.
The discovery of penicillin and other medical
advances, such as improvements in anesthe-
sia that made more daring surgeries possible,
the medical fi eld began to focus on expand-
ing possibilities for cure. Attention to the tra-
ditional concerns of palliative care and pain
management somewhat paradoxically became
less important to the providers of mainstream
medicine.
Prior to this time, pain medications typi-
cally had been herbal in nature, with reliance
on alcohol and morphine as the most potent
remedies for serious discomfort. In the mid-
19th century, laudanum was widely available
and became immensely popular. Easy access
to these remedies allowed individuals to self-
medicate, and addiction became a societal evil
associated with stigma. Legislative regulations
subsequently were enacted to protect the pub-
lic. This fear of addiction to pain medications
and the stigma associated with addiction and
opioid medication use continues to infl uence
professional behavior, patient and family per-
ceptions of illness and its treatment, and public
policy.
In London in the 1960s, Cicely Saunders,
a physician previously trained as a nurse and
social worker, developed the fi rst modern hos-
pice (Saunders, 1996). She pioneered the con-
cept of “total pain,” which recognized pain as
a social, psychological, spiritual, and physical
experience that required intervention provided
by an interdisciplinary care team. She revolu-
tionized the treatment of pain by scheduling
around-the-clock use of opioids with the goal
of managing persistent pain and minimiz-
ing its exacerbation. She was instrumental in
encouraging patients to self-assess pain and
incorporated the family into care (Forman,
1998; Saunders, 2001). In 1969, Elisabeth
Kübler-Ross’s book On Death and Dying set
the stage in the United States for a revolu-
tion in the provision of end-of-life care, the
development of palliative care as a medical
specialty, and the renewal of interest in more
sophisticated pain and symptom management
strategies. More recently, pioneers like phy-
sician Jimmie Holland (Holland et al., 2010)
have championed the development of psycho-
oncology as a unique specialization that seeks
to integrate the biopsychosocial-spiritual fac-
tors of illness. This model is exemplifi ed by
the decision of the National Comprehensive
Cancer Network (Jacobsen, 2007) to encour-
age the use of “distress thermometers” as
standardized screening tools to measure phys-
ical pain as well as psychological suffering in
cancer patients.
Social workers often have failed to add
their expertise to these developing specialties,
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Pain Management and Palliative Care 595
leaving a vacuum that is being fi lled by psy-
chologists, chaplains, nurses, and physicians
sensitive to psychosocial issues. Although
there have been recent efforts to highlight the
contributions of social workers in these fi elds
(Altilio & Otis-Green, 2011), there remains a
need for social work leadership in palliative
care and pain management across all aspects
of care: policy, research, education, and clini-
cal practice.
NATIONAL CONSENSUS
PROJECT ON PALLIATIVE
CARE
Palliative care programs are increasing in num-
ber at a rapid pace. In addition to the growing
population of aging persons living with debili-
tating and life-limiting illnesses, reports such
as the Institute of Medicine’s Approaching
Death, When Children Die (2003) and Cross-
ing the Quality Chasm (2001) have called for
improving access to palliative care during
all stages of illness along the continuum of
care. In 2004, the National Consensus Project
for Quality Palliative Care (NCP) was estab-
lished to formulate clinical practice guidelines
to promote consistent and high-quality care
and guide the development of palliative care
services. The project’s participants included
professionals, health-care organizations, pol-
icy- and standard-setting bodies, consumers,
and payers.
The consensus document Clinical Practice
Guidelines for Quality Palliative Care that
was originally published in 2004 by the NCP
describes palliative care as consisting of inter-
ventions that may accompany life-prolonging
treatments and be practiced at both the gen-
eralist and specialist levels. The implication
that primary health-care providers integrate
basic palliative care invites all health-care
providers, including social workers, to learn
core skills. The integration of palliative care
into generalist practice has great potential to
impact care for patients and families in vari-
ous settings through the course of illness to
the end of life.
In 2004, the NCP described the defi nition,
scope, and goal of palliative care in this way:
The goal of palliative care is to prevent and
relieve suffering and to support the best pos-
sible quality of life for patients and their
families, regardless of the stage of the dis-
ease or the need for other therapies. Pallia-
tive care is both a philosophy of care and an
organized, highly structured system for de-
livering care. Palliative care expands tradi-
tional disease-model medical treatments to
include the goals of enhancing quality of life
for patient and family, optimizing function,
helping with decision making, and provid-
ing opportunities for personal growth. As
such, it can be delivered concurrently with
life-prolonging care or as the main focus
of care. Palliative care is operationalized
through effective management of pain and
other distressing symptoms, while incorpo-
rating psychosocial and spiritual care with
consideration of patient/family needs, pref-
erences, values, beliefs, and culture. Evalua-
tion and treatment should be comprehensive
and patient-centered with a focus on the cen-
tral role of the family unit in decision mak-
ing. Palliative care affi rms life by supporting
the patient and family’s goals for the future,
including their hopes for cure or life-pro-
longation, as well as their hopes for peace
and dignity throughout the course of illness,
the dying process, and death. Palliative care
aims to guide and assist the patient and fam-
ily in making decisions that enable them to
work toward their goals during whatever
time they have remaining. Comprehensive
palliative care services often require the ex-
pertise of various providers to adequately as-
sess and treat the complex needs of seriously
ill patients and their families . . . (2004, p. 6)
In 2009, this defi nition was reconfi rmed,
as were the eight domains of care. The clini-
cal practice guidelines were expanded and are
delineated in Box 22.1. The 2009 consensus
document added justifi cations, supporting and
clarifying statements, references, case ex-
amples, and suggested criteria for assessing
outcomes, creating a rich and comprehensive
tool for guiding generalist or specialist pallia-
tive care.
ch22.indd 595ch22.indd 595 9/22/11 1:08 AM9/22/11 1:08 AM
596 Health Social Work: Selected Areas of Practice
Box 22.1 NCP for Quality Palliative Care
Domains and Guidelines
Domain 1: Structure and Processes of Care
Guideline 1.1. The timely plan of care is
based on a comprehensive interdisciplinary
assessment of the patient and family.
Guideline 1.2. The care plan is based on the
identifi ed and expressed preferences, values,
goals, and needs of patient and family, and
is developed with professional guidance and
support for decision making.
Guideline 1.3. An interdisciplinary team
provides services to the patient and family
consistent with the care plan. In addition to
nursing, medicine, and social work, other
therapeutic disciplines with importance
in the assessment of patients and families
include physical therapists, occupational
therapists, speech and language pathologists,
nutritionists, psychologists, chaplains, and
nursing assistants. For pediatrics, this should
include child life specialists. Complementary
and alternative therapies may be included.
Guideline 1.4. The use of appropriately
trained and supervised volunteers on the
team is strongly encouraged.
Guideline 1.5. Support for education and
training is available to the interdisciplinary
team.
Guideline 1.6. In its commitment to quality
assessment and performance improvement,
the palliative care program develops,
implements, and maintains an ongoing
data-driven process that refl ects the
complexity of the organization and focuses
on palliative care outcomes.
Guideline 1.7. The palliative care program
recognizes the emotional impact on the
palliative care team of providing care to
patients with life-threatening illnesses and
their families.
Guideline 1.8. Palliative care programs should
have a relationship with one or more hospices
and other community resources in order
to ensure continuity of the highest-quality
palliative care across the illness trajectory.
Guideline 1.9. The physical environment
in which care is provided should meet the
preferences, needs, and circumstances of the
patient and family to the extent possible.
Domain 2: Physical Aspects of Care
Guideline 2.1. Pain, other symptoms, and
side effects are managed based upon the best
available evidence, with attention to
disease-specifi c pain and symptoms.
Domain 3: Psychological and Psychiatric
Aspects of Care
Guideline 3.1. Psychological status is
assessed and managed based upon the best
available evidence, which is skillfully and
systematically applied. When necessary,
psychiatric issues are addressed and treated.
Guideline 3.2. A grief and bereavement
program is available to patients and families,
based upon the assessed need for services.
Domain 4: Social Aspects of Care
Guideline 4.1. Comprehensive
interdisciplinary assessment identifi es the
social needs of patients and their families,
and a care plan is developed to respond to
these needs as effectively as possible.
Domain 5: Spiritual, Religious, and
Existential Aspects of Care
Guideline 5.1. Spiritual and existential
dimensions are assessed and responded to
based upon the best available evidence, which
is skillfully and systematically applied.
Domain 6: Cultural Aspects of Care
Guideline 6.1. The palliative care program
assesses and attempts to meet the needs
of the patient, family, and community in a
culturally sensitive manner.
Domain 7: Care of the Imminently Dying
Patient
Guideline 7.1. Signs and symptoms of
impending death are recognized and
communicated in developmentally appropriate
language for children and patients with
cognitive disabilities, with respect for family
preferences. Care appropriate for this phase of
illness is provided to patient and family.
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Pain Management and Palliative Care 597
Guideline 7.2. Postdeath care is delivered in
a respectful manner. Cultural and religious
practices peculiar to the postdeath period
are assessed and documented. The body is
cared for in a manner that is congruent with
these practices, in accordance with both
organizational practice and local law.
Guideline 7.3. A postdeath bereavement plan
is activated. An interdisciplinary team member
is assigned to the family in the postdeath
period, to help with religious practices,
funeral arrangements, and burial planning.
Domain 8: Ethical and Legal Aspects of
Care
Guideline 8.1. The patient’s goals,
preferences, and choices are respected
within the limits of applicable state and
federal law, with current accepted standards
of medical care, and form the basis for the
plan of care.
Guideline 8.2. The palliative care program is
aware of and addresses the complex ethical
issues arising in the care of persons with
life-threatening debilitating illness.
Guideline 8.3. The palliative care program
is knowledgeable about legal and regulatory
aspects of palliative care.
Source: Clinical Practice Guidelines for Quality
Palliative Care, 2nd ed., by National Consensus
Project for Quality Palliative Care, 2009, www
.nationalconsensusproject.org
In 2006, the National Quality Forum (NQF)
released A National Framework and Preferred
Practices for Palliative and Hospice Care
Quality. This document refl ects the NQF’s de-
cision to accept and adopt the Clinical Prac-
tice Guidelines for Quality Palliative Care and
provides 38 preferred practices on which mea-
sures for palliative care are to be developed.
The NQF is recognized as the national leader
in health-care quality improvement, represent-
ing a broad array of practice areas and topics.
Consequently, the adoption of these guidelines
both recognizes and legitimizes palliative care
(NCP, 2009; NQF, 2006).
Although the NCP guidelines delineate
shared aspects of practice responsibility for
all disciplines, some areas seem to fall natu-
rally into the domains of specifi c disciplines.
For example, social aspects of care draw on
the social work principle that highlights the
importance of the person and their environ-
ment (Altilio, Otis-Green, & Dahlin, 2008).
The domains, guidelines, and preferred prac-
tices are invitations for social workers to as-
sert and enhance their expertise as essential to
palliative care and refl ect social work’s respect
for the individual experiences of patients and
families. The next section discusses aspects of
social work assessment to assist in elucidating
the synergy of social work and palliative care.
BIOPSYCHOSOCIAL-
SPIRITUAL ASSESSMENT
Comprehensive and ongoing biopsychosocial-
spiritual assessment is a key function of social
work in health-care settings and is the basis of
effective treatment planning. As in any clinical
situation, the scope of the assessment is modi-
fi ed according to context and immediate needs
and goals. The assessment of an individual
with chronic pain or a life-limiting illness in-
volves gathering in-depth information about
the physiological aspects of the symptoms and
illness, addresses treatment, and complements
competent medical management. A family his-
tory might include previous experiences with
pain and illness, remote and immediate loss
experiences, and pain- and illness-related be-
haviors as well as information about family
roles, structure, functioning, communication
and confl icts, social supports and resources,
and cultural and spiritual values and networks.
Unique family factors and illness variables
impact family function and response. Did the
illness evolve over time or appear suddenly?
Do the patient and family have a history with
this specifi c disease or symptom? What is the
role of the patient in the family? Is the family a
cohesive unit? How adaptable and fl exible are
family members? Is extended family or social
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http://www.nationalconsensusproject.org
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598 Health Social Work: Selected Areas of Practice
network support available? What life cycle is-
sues are present? Is the family experiencing
stressors, such as fi nancial worries, preexist-
ing confl icts, or illness? What might interfere
with the family’s ability to adapt, support each
other, or use community resources?
Numerous needs and challenges arise when
pain or life-limiting illness arises in the life of
a family. Such needs and challenges may in-
clude: understanding the disease, its treatment,
and potential prognosis; developing strategies
to manage the impact of pain or illness; coping
with and learning the language of professional
caregivers and institutions; maintaining stabil-
ity while restructuring to meet the changing
individual needs of patient and family mem-
bers; dealing with family responses as well as
the individual emotions, grief, and adaptation
of specifi c family members; planning for the
continuation of family life through periods of
change and uncertainty and possible death; and
fi nding meaning as a family and as individuals.
People with chronic pain or chronic pro-
gressive diseases and the members of social
support networks experience grief as they
come to terms with the myriad losses associ-
ated with pain and illness. Many people living
with chronic pain face similar loss experiences
that are not related to life-limiting illness but
similarly evoke grief and demand multiple
levels of change and adaptation (MacDonald,
2000).
Illness-related behaviors and responses
arise in the context of specifi c family, cul-
tural, social, health care, and political systems
that may infl uence the suffering component
of the experience. Suffering, as defi ned by
Webster’s Dictionary, is “to submit to or be
forced to endure, to tolerate as inevitable, to
sustain loss or damage, to endure death, pain
or distress.” Suffering is a subjective experi-
ence viewed through the lens of an individu-
al’s life, values, perspectives, and priorities
and is closely tied to a search for meaning. It
may include pain but can exist in the absence
of physical symptoms (Cassell, 1991). In the
absence of meaning and a reframed vision
of hope that extends beyond cure of a condi-
tion, suffering may continue despite excellent
management of pain and treatment of disease
(Barkwell, 1991). Viktor Frankl, in his book
Man’s Search for Meaning (1984), develops
“Logotherapy,” a therapeutic concept based in
the belief that fi nding meaning allows one to
transcend loss and suffering. The construct is
useful when working with people whose lives
have been derailed by life-limiting illness or
chronic pain. Clinicians can create a support-
ive space within which patients can gently
and respectfully explore alternative sources of
meaning and perhaps see the illness as an im-
petus for these discoveries (Lethborg, Aranda,
Bloch, & Kissane, 2006; Otis-Green, Sher-
man, Perez, & Baird, 2002). Systematic psy-
chosocial pain assessment (Otis-Green, 2006)
can be a useful tool for identifying the unique
impact of the multidimensional experience of
pain on a patient and their families. Specialized
spiritual assessment tools also are available for
exploring patients’ spiritual and cultural cop-
ing strategies and gathering insights into how
they interpret their pain or illness experiences
(Puchalski et al., 2009).
People with chronic illness may experience
sadness and some symptoms of depression and
anxiety. Symptoms may interfere with func-
tion and quality of life and be pervasive and
persistent. Skilled assessment and treatment,
including pharmacology and counseling, are
essential to enhancing the quality of life of
patients (Hultman, Reder, & Dahlin, 2008).
Likewise, caregivers and other family mem-
bers may become overwhelmed and exhausted
over time and be at risk for physical and psy-
chological effects (Schulz & Beach, 1999).
In the palliative care model, the unit of care
is the patient and those identifi ed as family.
Consequently, clinicians attend to the needs of
caregivers and family as a necessary part of
ongoing assessment and treatment. Compre-
hensive care of people with chronic pain also
should involve those family members who are
observers and often participants in the chronic
pain experience (Glajchen, 2003). Caregiv-
ing over time has the potential to affect the
emotional, physical, and fi nancial well-being
of the patient and family. Thus, vigilance, on-
going assessment, and advocacy are required
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Pain Management and Palliative Care 599
to meet the current and anticipated needs of
patients and their caregivers (Glajchen, 2011).
The perceptions, evaluation, and experi-
ences of the patient, family, and health-care
professional are unique. As a result, discrep-
ancies in observations and assessment may
occur, and these data become part of a com-
prehensive assessment. For example, the clini-
cian’s or family caregiver’s appraisal of pain
may not agree with that of the patient (Lob-
chuk & Degner, 2002; Miaskowski, Zimmer,
Barrett, Dibble, & Wallhagen, 1997). Evi-
dence suggests that clinicians underrate pain,
especially when it is severe (Cleeland et al.,
1994; Grossman, Sheidler, Swedeen, Mucen-
ski, & Piantadosi, 1991; Von Roenn, Cleeland,
Gonin, Hatfi eld, & Pandya, 1993). Appraisals
are fi ltered through the experience, suffering,
and cognitive and emotional distress of the
appraiser; thus objective assessment is crucial
to insure that appropriate interventions are di-
rected to the right persons (Redinbaugh, Baum,
DeMoss, Fello, & Arnold, 2002). For example,
a family caregiver may perceive a loved one’s
pain to be out of control while the patient re-
ports a reasonable level of comfort. The care-
giver’s perception may be affected by fatigue,
fear, and feelings of helplessness. The appro-
priate intervention, therefore, might be for the
social worker and team to reevaluate the plan
of care and increase support through practical
and psychological interventions rather than an
increase in medication for the patient.
Individual and family attitudes and be-
haviors related to pain, illness, and death are
infused with and enriched by cultural infl u-
ences. Societal attitudes toward health, illness,
and death have been infl uenced by a variety
of ethical, political, religious, and philosophi-
cal beliefs in addition to changing medical
practices through the 20th century. Although
the standard medical approach to illness and
health care in the United States is largely
based on the Western bioethical model of
autonomy, self-determination, and informed
consent, the United States is a multicultural
society in which beliefs and behaviors are
informed by a range of values. The assump-
tion that patients and families work from a
model of self-determination, accept the values
implicit in advance directives, and become
informed self-advocates may represent a clini-
cian-driven focus that does not necessarily re-
fl ect the unique and individualized experiences
of patients and their families. Psychosocial-
spiritual assessment recognizes that cultural
values and nuances inform patient and fam-
ily understanding and adaptation to pain and
symptoms, illness, and death and that care can
be adapted accordingly (Crawley, Marshall,
Lo, & Koenig, 2002; Im et al., 2007; Kagawa-
Singer & Blackhall, 2001; Koenig & Gates-
Williams, 1995; Koffman, Morgan, Edmonds,
Speck, & Higginson, 2008). The next case
example captures some of the complexity that
is involved when the health-care team is faced
with cultural beliefs that differ from the tradi-
tional Western bioethical model.
Case Example
Mrs. M is a 33-year-old Muslim woman from
Nigeria diagnosed with ovarian cancer and
hospitalized with symptoms of pain, nau-
sea, and weakness. She speaks little English
and communicates through her husband or
through an AT&T language line interpreter.
Although she has decision-making capacity,
she requests that information be given to her
husband, who will make the health-care deci-
sions. This request is troubling to the health-
care team who are more comfortable with
the traditional Western model of informed,
self-determined decision making. The social
worker from the palliative care consult service
asks the primary team to consider that one can
retain autonomy while giving decision-making
power to another individual. She acts as cul-
tural mediator throughout the hospital stay.
A discussion ensues about the harm that may
result if staff’s pressure to inform the patient
of her prognosis is experienced as an assault
on the beliefs and family structure that sustain
the couple in times of crisis. The complexity
is compounded with the suggestion of possi-
ble surgery, because the risk and benefi ts and
nature of invasive surgery change the context
and quality of the consent discussion. The pa-
tient, her husband, and the health-care team
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600 Health Social Work: Selected Areas of Practice
explore the interface of cultural, institutional,
and legal issues and negotiate an agreement
whereby the husband will consent with the pa-
tient assenting by marking an X on a witnessed
consent form. The social worker also assists
the team with these interventions and adapta-
tions, which were required in order to provide
respectful care to this couple:
• A visual pain assessment tool is combined
with observation of nonverbal behaviors
to help staff assess and manage Mrs. M’s
pain. Mr. M is reassured that when he is not
available, his wife’s pain can be assessed
and managed in spite of the language
difference.
• Issues related to prognosis, as per cultural
and religious beliefs, are not discussed with
the patient because both the husband and the
AT&T interpreter report that discussing the
possibility of death will be distressing, may
impact her adversely, and be interpreted by
the patient and her husband as a challenge
to the ultimate power and will of Allah.
• Postdeath needs and rituals are researched,
discussed with an imam, and shared with
nursing staff so that all will be prepared
to provide respectful care during and after
death.
The scope of a palliative care assessment
(see Box 22.2) has much in common with a
comprehensive pain assessment in that it can
include physical, emotional, socioeconomic,
cognitive, cultural, behavioral, spiritual or
existential, and environmental realms. Qual-
ity palliative care also focuses on advance
care planning and risk factors for complicated
bereavement. A comprehensive assessment
involves the individual as well as signifi cant
others and seeks to identify needs and any dis-
crepancies in perceptions and understanding.
Box 22.2 Assessment in Palliative Care
Physical. Diagnosis and prognosis; his-
tory of disease or pain; symptoms; and im-
pact on function, sleep, mood, and intimacy.
Emotional. Depression, anxiety,
demoralization, fear, anger, grief, sadness,
acceptance, guilt, shame, loss of control,
helplessness, hopelessness; preexisting or
comorbid psychiatric issues; coping skills;
bereavement risk.
Socioeconomic. Sources and stability
of income; access to care; entitlements;
insurance issues; potential issues related to
economic disadvantage or ethnic minority
status; and impact and symbolic signifi cance
of disability status.
Cognitive. Attitudes, beliefs, and values;
expectations that inform responses to pain
and illness; internal dialogue and symbolic
signifi cance of pain, disease, and treatment;
attributed meaning; impact on self-effi cacy,
self-image, and locus of control.
Cultural. Communication, gender, and
language issues; degree of acculturation,
assimilation, or generational differences;
beliefs related to illness, pain, decision
making, truth telling, death; use of folk
remedies and native healers.
Behavioral. Verbal and nonverbal
communication; conscious and unconscious
bodily responses such as grimacing,
restlessness, or crying; regression,
dependence, and acting out; problematic
handling of medications and inability to
cooperate with treatment plans.
Existential/Spiritual. Issues of meaning,
despair, faith, and spiritual comfort; life
review, hopes, and goals for the future;
legacy-building opportunities; illness, pain,
and suffering as related to beliefs such as
redemption, endurance, and forgiveness;
religious or spiritual beliefs that impact
treatment decisions and peaceful dying.
Environmental. Emotional signifi cance
of the physical environment, including
alterations that need to be made consequent
to pain or disease-related issues, such as
need for equipment, medical personnel at
home; behaviors of staff, friends, or family
that may increase distress.
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Pain Management and Palliative Care 601
INTERVENTIONS
For social work, the fi elds of pain manage-
ment and palliative care present an emerging
opportunity to apply skill sets that are a routine
part of our training and to learn other skills
to enhance the care and outcomes of patients
and their families. Social work interventions
may be focused in the arena of policy or public
advocacy work or in the clinical realm of the
patient’s family experience.
Advocacy
Advocacy is an ongoing task; needs change,
distress varies, and skills of self-advocacy
may fade as the patient and family deal with
protracted illness, symptoms such as pain and
fatigue, and associated feelings of exhaustion,
helplessness, and hopelessness. Unrecognized
and unrelieved pain and symptoms and confl ict
and misunderstandings within families or with
staff are examples of clinical situations that may
require social work advocacy skills. Patients and
families often need assistance in advocating for
adequate discharge plans and negotiating with
insurance companies. When patients and fami-
lies are less distressed, advocacy skills can be
taught with the goal of increasing self-effi cacy
(McCaffery & Pasero, 1999). In addition, there
are multiple opportunities for promoting sys-
tems change within institutions as well as at a
political and policy level.
Supportive Counseling Interventions
Supportive counseling interventions include
techniques of clarifying, exploring, partializ-
ing, validating, and problem solving. Patients
and family members often are faced with
myriad illness-related issues, such as pain and
crucial medical decision making. These inter-
ventions, along with intensive medical man-
agement of symptoms, establish a basis for
trust while they explore immediate needs and
concerns. They also have the potential to cre-
ate a relationship environment within which
the patient and family feel understood and
validated.
Education and Anticipatory Guidance
Education is an essential part of helping peo-
ple master circumstances. In the health-care
environment, education often means exposure
to the language of medicine in the setting of
pain, illness, and anxiety. The health-care
community is responsible for accommodat-
ing and adapting to the needs of patients and
providing information in a way that supports
patient and family understanding and compe-
tence. Health-care clinicians need to anticipate
future challenges and offer preemptive educa-
tion and support to patients and their loved
ones, which may include exploring the use of
advance directives.
Case Example
Maria introduces herself as the family’s so-
cial worker by explaining that she is avail-
able to offer them support through Mr. S’s
upcoming hospitalization for cardiac surgery.
In addition to asking about their immediate
questions and needs, she provides a folder of
information and suggests that they might fi nd
the material helpful as treatment evolves. She
acknowledges that people have different ways
of coping and discusses some of the resources,
such as support groups and counseling oppor-
tunities, that others have found helpful. Maria
closes by saying that she will be available to
discuss a range of concerns, such as the im-
pact of treatment on the family, its side effects,
sexual functioning, fi nances, and spirituality.
The affective and cognitive components of
pain described earlier in this chapter can be
impacted by providing education and informa-
tion about pain, management techniques, and
strategies for coping. Many people are familiar
with acute pain, and the transition to a chronic
pain condition is often gradual and subtle. Con-
sequently, the necessary emotional and cogni-
tive adaptation to a chronic condition may be
delayed. In the absence of clear education, ex-
pectation for cure may continue with the result
that the patient and family have repeated ex-
periences of failure and disappointment. Edu-
cation helps patients and families distinguish
between the preventive use of medications and
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602 Health Social Work: Selected Areas of Practice
addiction, physical dependence, and tolerance.
Information should be customized to the needs
of individual patients and families, because
learning needs, language, and preferred learn-
ing styles differ.
Case Example
Mr. W is a 33-year-old unmarried male living
at home with his parents who came to Amer-
ica from Trinidad. He hurt his back stocking
shelves in the supermarket. He has been out
of work for two years and, as a result of his
ongoing struggle with worker’s compensa-
tion insurance, he has become defensive and
interprets pain-related assessment questions as
a challenge to his credibility and the validity
of his pain experience. His mother searched
for curative treatment. When his pain contin-
ued, however, she began to wonder if he had
a psychiatric as well as a physical problem.
She sought a chronic pain program where,
over time, educational interventions addressed
these interrelated issues:
• Mr. W’s pain experience includes physi-
cal, psychological, cultural, and systemic
components. Multidimensional assessment
of his pain is not intended to diminish his
pain but rather to acknowledge him as a
whole person, including but not limited to
his physical self. Diagnostic and medical
evaluation indicate that Mr. W’s pain is no
longer a signal that he is doing further harm
to his body.
• His mother’s behaviors, based in her culture
and role, need to be refocused on support-
ing independence and recovery rather than
“taking care of her son.” His back pain is
reframed from an acute to a chronic condi-
tion, requiring a caregiving approach that
encourages effi cacy and maximum func-
tioning.
• Medications are prescribed to diminish his
pain and also serve to validate symbolically
the clinician’s belief in his reports of pain.
• Mr. W is advised to consider participat-
ing in a vocational rehabilitation program
rather than waiting for his pain to dissipate,
thus reframing the goal of care as being to
maximize functioning rather than to ame-
liorate pain.
Cognitive-Behavioral Interventions
Cognitive-behavioral techniques recognize
that the biological, cognitive, behavioral, and
emotional aspects of experience are related
and that interventions focused on any one as-
pect have the potential to modify the entire
experience. The internal dialogue of the pa-
tient or family member becomes a source of
rich diagnostic information, and the relation-
ship of body, mind, and emotion becomes an
avenue for helping to maximize feelings of
control and self-effi cacy and modify symp-
toms. Cognitive-behavioral interventions may
be adjuncts to the medical management of
symptoms. They often are used in combina-
tion and may be the primary interventions in
chronic pain situations. They can be helpful to
patients during procedures and diagnostic tests
that often create distress and feelings of lack
of control.
The strategies selected relate to the goals and
condition of the patient and often tap into the
patients’ and families’ interests and abilities.
For those who are overwhelmed or physically
or mentally exhausted, the clinician works to
build a successful experience by selecting inter-
ventions that require less effort, such as those
based in visual or auditory senses, such as au-
diotapes and music. These interventions can
be taught to individuals and families or can be
incorporated into group experiences. Education
is often a basic component of these techniques.
Normalizing aspects of cognitive-behavioral in-
terventions helps patients and families integrate
them more easily. To that end, comparing imag-
ery to controlled daydreaming or distraction to
being engaged in an exciting movie reinforces
the familiar at the same time that new skills
are being introduced. It can be helpful to intro-
duce these techniques as an extension of natu-
ral abilities to distract from the painful stimuli,
which does not mean that the pain is either
nonexistent or psychological in origin (Altilio,
2004; Berlin, 2001; Devine, 2003; Jacobsen
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Pain Management and Palliative Care 603
& Hann, 1998; Loscalzo & Jacobsen, 1990).
These techniques focus clinical attention on
the relationship among body, mind, and emo-
tion and provide options for interventions that
refl ect the multidimensional experiences of pal-
liative care patients and individuals living with
chronic pain (Kerr, 2000). The International
Association for the Study of Pain (2009) and
the National Cancer Institute (NCI, 2010) Web
sites are important sources of information and
references about how to integrate interventions
into practice.
Cognitive Restructuring
Cognitive restructuring involves monitoring
a person’s interpretation of events in order to
reduce feelings of distress, helplessness, and
hopelessness. Exploring a patient’s internal
dialogue can help to identify thoughts and
feelings that exacerbate pain, symptom inten-
sity, and distress. The technique provides an
opportunity both to explore fears and miscon-
ceptions and to reinterpret thoughts to enhance
comfort and control (Bradley, 1996; Syrjala,
Donaldson, Davis, Kippes, & Carr, 1995).
Case Example
Mr. K is a 51-year-old Latino married father
of two adult children who was admitted to the
hospital with back pain. Within a fi ve-day pe-
riod, he was diagnosed with lung cancer and
informed that his cancer had metastasized to
his liver and bones. His sister is an assertive, in-
formed advocate who speaks English and is the
primary spokesperson for the family with the
health-care team. Mrs. K, whose primary lan-
guage is Spanish, is frightened and tearful. It is
an expected response, but one that is particularly
distressing to Mr. K, who has seen himself as
protector and provider. Mr. K’s respiratory con-
dition worsens precipitously, and before mak-
ing a decision about resuscitation or appointing
a health-care agent, he requires ventilator sup-
port and is therefore unable to communicate.
Diagnostic work continues, and antibiotics are
prescribed for his respiratory symptoms. The
social worker and palliative care team continue
to provide service to the patient and family to
maintain continuity throughout the crisis. Sup-
portive counseling techniques are used to assist
Mr. K and his family to integrate the quickly
changing medical situation. They include edu-
cation about diagnosis and treatment, validation
of the range of emotions, concerns, and ques-
tions associated with the medical and family
crises, and clarifi cation of the intent and goals
of the medical team. In family meetings, Mrs.
K is determined to be the surrogate decision
maker, although the process of decision making
becomes one of family consensus. The social
worker sees to it that Mrs. K has a staff inter-
preter to ensure that information is interpreted
directly to her rather than through distressed
family members and to validate the importance
of her role and participation. In addition to cur-
rent circumstances, the social worker and doc-
tor explore the patient’s prior articulated beliefs
and values that might inform the decisions to be
made on his behalf. This is especially important
consequent to the family’s perception that they
would be “killing” Mr. K if they agreed to have
the ventilator removed. The family indicates
that Mr. K had shared his desire not to be sus-
tained by machines. He also had told the team
chaplain that he had a good life and that quality
of life was more important to him than quantity.
Using the technique of cognitive reframing, the
family was asked to consider that discontinu-
ing the ventilator refl ects a respect for Mr. K’s
values and that, rather than “killing him,” they
were allowing death to occur, consistent with
the guidance he had given. Family members
allow the medical team to remove the ventila-
tor. The social worker and physician provide
anticipatory guidance to assist family members
with their individual decisions to be present as
the ventilator is removed, educating them about
this unfamiliar process, using breathing and im-
agery techniques both to prepare them for Mr.
K’s death and to enhance coping with the actual
experience.
Coping Statements
Coping statements are internal or spoken state-
ments designed to distract, enhance coping,
self-sooth, or diminish the threatening aspect
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604 Health Social Work: Selected Areas of Practice
of a situation or experience (International As-
sociation for the Study of Pain, 2009; McCaul
& Malott, 1984; Syrjala et al., 1995). Cata-
strophic and defeating self-statements about
pain can be replaced with internal dialogues
that enhance coping, calm, and competence.
Distraction
Distraction involves refocusing attention to
stimuli other than pain and to other aspects
of self, which might include mental activity
(internal) such as prayer, reading, or doing
crossword puzzles, or physical activity (ex-
ternal), such as breathing, rhythm, or engag-
ing in conversation (American Pain Society,
2005; Broome, Rehwaldt, & Fogg, 1998).
Activities such as telling stories, music, life
review, prayer, and reading silently or aloud
can have therapeutic value while at the same
time distracting from pain and other sources
of distress (Altilio, 2002; McCaffrey &
Pasero, 1999).
Self-Monitoring Techniques
Self-monitoring techniques such as diaries or
journals externalize and objectify thoughts, be-
haviors, and feelings and create a personal his-
tory. The identifi cation of attitudes, thoughts,
and beliefs allows redefi nition of the threaten-
ing aspects of experience toward the goal of
decreasing distressing feelings and reactions.
The techniques are adaptable to different per-
sonalities and goals, can be kept for a week or
for months, can be written in telegram format
or in paragraphs, and provide a link to the cli-
nician (Altilio, 2004; American Pain Society,
2005). At times, diaries and audio recordings
serve an additional purpose because they come
to represent symbolically the therapeutic re-
lationship, as in the concept of a transitional
object, thereby extending the therapeutic ben-
efi t and comfort implicit in that relationship
(Winnicott, 1971). Diaries can be useful in
understanding the multidimensional aspects of
illness and symptoms, including pain, insom-
nia, anxiety, and depression, and thereby guide
interventions (Kelly & Clifford, 1997).
Case Example
The next journal entries were written over time
by Ms. J, a 28-year-old woman with breast can-
cer that had metastasized to the bones, causing
pain that impacted function, sleep, and mood.
11:00 am: I had a relatively good night’s
sleep. When I woke up, instead of turning
on the TV, I tried to go back to sleep. I told
myself that if I tried for 15 to 20 minutes to
go to sleep, I could get up or watch TV. I fell
back to sleep both times. [Coping statement
integrated with sleep hygiene techniques em-
power and diminish helplessness related to
sleeplessness.]
2:00 pm: Feeling very depressed because I
was supposed to go out to dinner in the city,
but I canceled because I feel so horrible.
I’m also afraid that I’d be in miserable pain.
That’s why I canceled. But now I’m feeling
depressed because I feel like this pain has
control over my entire life. [Patient’s cata-
strophic thinking and anticipation of pain
controls behavior, exacerbating her helpless-
ness and distress.]
4:30 pm: Feel really depressed about every-
thing. The pain is making me feel like I’m
dying [attributed meaning]. Not that it’s that
bad—it’s not—it’s actually pretty mild, but
I just feel overwhelmed by everything; the
decisions I have to make. [Patient differen-
tiating pain, symbolic meaning of pain and
feelings and distress generated by pending
decisions.] (Altilio, 2004)
Relaxation Techniques
In the 1970s, a research cardiologist named
Herbert Benson developed a simple relaxation
technique that incorporates muscle relaxation
and rhythmic breathing. Its goal is to elicit a
relaxation response that counteracts fi ght or
fl ight, the internal adaptive response to threat
during which the body secretes catecholamines,
or stress hormones, that prepare a person to
fi ght or fl ee. This response is essential when
facing acute threats and often becomes acti-
vated during medical procedures that may be
frightening or threatening to patients, because
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Pain Management and Palliative Care 605
the anticipated results, such as a diagnosis of
cancer, will be life altering. The fi ght-or-fl ight
response is not helpful when stress is chronic,
as when the threat is an internal experience,
such as pain or shortness of breath (Benson,
1975). It also often is disruptive during proce-
dures that require patient attention or stillness.
Learning the breathing technique that elicits a
relaxation response may empower patients and
families to cope with events, fears, and over-
whelming thoughts, thus enhancing feelings of
self-effi cacy.
Many patients use breathing techniques
with or without muscle relaxation to reverse
their physiologic, emotional, and behavioral
reactions to stress and pain. The choice of
technique is based on a clinical evaluation.
Most exercises combine repetition of a word,
phrase, or breath, with or without imagery,
and are enhanced by a quiet environment and
a secure comfortable physical position. Clini-
cians often work with patients and families
to practice techniques within the therapeu-
tic relationship. Personalized relaxation and
imagery exercises can be recorded for use
by patients and families, thus creating the
potential to extend their therapeutic benefi t
(Gallo-Silver & Pollack, 2000; Loscalzo &
Jacobsen, 1990).
Imagery
Imagery is the use of mental representations
to assist in the control of symptoms, to en-
hance relaxation and comfort, or to distance
oneself from a problem and in so doing gain
insight into it. Imagery often incorporates a
relaxation exercise. Although visualization
is the most common form, many exercises
are enriched by involving the senses of taste,
smell, hearing, and touch. Imagery can be
used to mentally rehearse upcoming activities
or feelings that are threatening (Eller, 1999;
Graffam & Johnson, 1987; Luebbert, Dahme,
& Hasenbring, 2001; Sheikh, 1983). Images
elicited from the patient or family may repre-
sent personal memories or imaginary places
and have the potential to enhance the thera-
peutic impact of intervention.
Hypnosis
Hypnosis is a technique for inducing a state
of heightened awareness, increased suggest-
ibility, and focused concentration that can be
used to alter the perception of pain, reduce
associated fear and anxiety, and sometimes
control pain itself (Kirsch, Montgomery, &
Saperstein, 1995; Montgomery, David, Win-
kel, Silverstein, & Bovbjerg, 2002). Autogenic
self-hypnosis uses self-suggestions of warmth,
heaviness, and relaxation in sequence through-
out the body. It can be associated with decrease
of pain and enhanced relaxation (Sternbach,
1987). Clinicians who choose to add hypnosis
to their skill sets seek specialized training. The
concept of suggestion, however, can be inte-
grated easily into professional communication
simply by attending to language. For example,
the phrase “as you become more comfort-
able” implies both process and an expectation
of positive outcome, a message signifi cantly
different from “when or if you become more
comfortable.”
Life Review and Legacy Building
The diagnosis of an advanced illness often is
associated with an increased awareness that
one is indeed mortal. Erikson (1963) specu-
lated that those facing death attempted to re-
solve the confl ict between “ego integrity” and
“despair.” Assisting patients with life review
by focusing on generativity (continuing to
be engaged in meaningful activities) offers a
foundation for positive refl ection at this vul-
nerable stage of life. New attention to existen-
tial “meaning of life” concerns may begin to
take precedence as the individual considers the
possibility of a limited life span or living with
chronic pain. Social workers can assist dur-
ing this period by normalizing these concerns,
sharing time for review, and offering resources
to assist in the life review process. Tools are
available that offer guidance in recording life
history on video- or audiotapes, in journals or
scrapbooks, or through other artistic strate-
gies (Babcock, 1997; McPhelimy, 1997; Otis-
Green & Rutland, 2004). These efforts can be
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606 Health Social Work: Selected Areas of Practice
tremendously cathartic for the patient and of
great value to loved ones as part of an inten-
tional legacy-building exercise. With chronic
pain, life review may happen as a natural part
of integrating the impact of chronic pain as pa-
tients and families refl ect on changes in their
current lives, as well as their future hopes.
Case Example
Ms. T has been reluctant to come to the De-
tours group that meets monthly at the hospital.
When her doctor tells her that it was for those
with recurrent disease, she summons her cour-
age and comes to a meeting. She is relieved
to see so many others already grabbing snacks
and fi nding seats. The social work facilitator
invites the participants to share what “detours”
life has thrown each of them. Ms. T fi nds her-
self relaxing as she listens to so many stories
similar to her own. She has been feeling stuck
and unsure of what to do since learning of the
recurrence of her illness. The social worker
encourages members of the group to think
about what is most important to them and to
consider how to ensure that what is most es-
sential to them is not lost. Ms. T raises her
hand to tell the group that her three children
are what matters the most and asks the group
for suggestions to help her “protect them from
all of this.” Later Ms. T tells her doctor that
the group helped her to see that, although she
might not be able to protect her children, she is
thinking more clearly about how she can bet-
ter prepare them for whatever they might have
to face. In subsequent meetings, Ms. T devel-
ops a guardianship plan and works on record-
ing and creating memories through videotape.
She also prepares a book of reminiscences and
memories for her children.
Integrative Strategies: The Use of the
Expressive Arts
The expressive arts offer social workers enor-
mous opportunities for culturally sensitive
interactions with those they serve. Integra-
tive interventions are especially useful as a
distraction technique for those suffering pain.
Although many pediatric units recognize the
benefi ts of expressive art interventions, fewer
adult units incorporate art, music, or play strat-
egies into routine care. Health social workers
are well positioned to recommend and coordi-
nate integrative programs (Otis-Green, 2003).
For example, hand or foot massage programs
may fi t well into a skilled nursing environ-
ment, the introduction of a music program may
be appropriate for an intensive care setting, or
the use of the visual arts may be incorporated
into existing support groups. Developing a
mind-set that looks for ways to integrate the
expressive arts into conventional settings is a
fi rst step toward creating opportunities for the
successful integration of these strategies.
Case Example
Mr. H is diagnosed with chronic renal disease
and signifi cant diabetic neuropathy, yet he
comes regularly to the Hands on Harps con-
certs and workshops sponsored by the social
work department. When asked what makes
these meetings so important to him, he always
beams and states that when listening to the
music, all of his pain disappears and that al-
though he lacks digital dexterity, “playing with
the harp always sounds so sweet.” When Mr.
H becomes too ill to attend the workshops, his
social worker arranges for the harpist to visit
his hospital room. Mr. H’s family later reports
that they played harp music to him while they
sat vigil awaiting his death and plan to play the
CD at his funeral, since it always brought such
comfort to him.
Child/Adolescent-Specifi c Interventions
In years past, children often were excluded
from participation and interaction with the
illness experiences of their family members.
This well-meaning exclusion was intended to
protect children from distress and confusion.
It is now understood that providing children
with age-appropriate information, and allow-
ing them to participate as appropriate, can
enhance their adjustment to a changed family
experience and to the losses and adaptations
that accompany chronic pain, progressive ill-
ness, and death (Harpham, 2004).
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Pain Management and Palliative Care 607
Most children are very perceptive but may
lack both the cognitive and developmental
abilities to understand what is happening in
their family and may not have the language to
talk about it. Although cultural variation may
infl uence how families engage children and
adolescents, clinicians can focus attention to
child and adolescent coping by asking relevant
questions as part of an overall assessment,
not only of the immediate or nuclear family
members, but also of grandchildren, nieces,
and nephews who are emotionally connected
to the patient. Age-appropriate information
provided by signifi cant adults can enhance un-
derstanding, dispel myths, fears, and anxieties,
enhance trust, and help children to make sense
of their own feelings as well as those of others.
Many children worry that they have caused the
pain or illness of loved ones, because of the
magical thinking that may accompany their
stage of development. They may have fears
about their own health, overreact to compa-
rable symptoms such as pain, and worry about
how they will be cared for if income is lost
or a parent becomes disabled or dies. Giving
children permission to ask questions and ex-
press feelings and fears helps them feel secure
and cared for. Techniques such as play ther-
apy, art therapy, storytelling, and journaling
can be especially helpful. Signs of regression
or disinterest, while common for children, can
be disconcerting for adults who may already
be overwhelmed and misinterpret the behav-
iors of their children or adolescents. Educa-
tion, reassurance, and maintenance of routine
is often helpful (Heiney, Hermann, Bruss, &
Fincannon, 2000).
Adolescents are at a particularly vulner-
able stage of development that can be com-
plicated when an adult is ill or affected by
chronic pain. The need to be aligned with
peers, to regulate uncertainty and anxiety,
and the desire to achieve some degree of
emancipation and independence may become
more diffi cult when medical issues and role
changes create additional anxiety and require
the adolescent to limit peer activity and as-
sume more responsibility at home. Resulting
behaviors may include withdrawal, silence,
or anger, and may refl ect a myriad of feel-
ings, such as embarrassment, sadness, guilt,
depression, and anxiety. Social work inter-
ventions may include:
• Educating the family about adolescent-
specifi c issues.
• Engaging and educating adolescents about
medical situations in age-appropriate ways.
• Encouraging adults to continue to talk, even
in monologue, about what is occurring, re-
inforcing stability as well as changes that
may occur.
• Monitoring unobtrusively the teen’s school-
work and interactions with peers and sig-
nifi cant adults.
• Assessing the pros and cons of alerting school
personnel—teachers and counselors—
about what is occurring in the family,
ensuring that they respect the teen’s confi –
dentiality while offering additional support.
• Encouraging opportunities for contact with
signifi cant adults in the teen’s life, such as
aunts, uncles, and coaches.
• Evaluating for depression, anxiety, and
changes in sleep and appetite.
Case Example
Mrs. L is a 42-year-old Latina married mother
of two children—Paulino, age 9, and Pedro,
age 5. She was diagnosed with a Stage 4 glio-
blastoma approximately four months ago. De-
spite limited response, she has continued to
pursue treatments, including chemotherapy,
and has chosen to participate in clinical tri-
als. Mrs. L reports that when her husband is at
work, the children act out. Paulino complains
that his “summer is ruined,” and Pedro talks
back to his parents, does not adhere to set lim-
its, and is beginning to regress, wetting his bed
and soiling his garments. Mrs. L responds by
apologizing and is overwhelmed by feelings
of sadness, anger, and guilt. She is fatigued
from treatments and paralyzed by the fear that
she will die, leaving her children and husband.
The social worker works with Mrs. and Mr.
L to explore the potential benefi ts of a family
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608 Health Social Work: Selected Areas of Practice
meeting. They agree to a meeting of all family
members to explore their understandings and
to provide age-appropriate information for
the children. During the meeting, the social
worker reviews the meaning and etiology of
fatigue and assists the children in reframing
their understanding of Mrs. L’s waning abil-
ity to participate physically in their lives. The
age-appropriate needs of the children are ac-
knowledged, and the family is encouraged
to take advantage of their available supports.
They identify family members, specifi cally an
uncle and friends, who might assist in helping
with the children. In addition to contributing
to the lives of the children, allowing friends
and family to participate will enable Mrs. L
to focus her energy on meaningful activities
with her sons, individually and together, cre-
ating memories. Friends and family are as-
signed tasks that allow them to realize their
desire to help. They are grateful to know that
they are contributing to the life of Mrs. L and
her family. The social worker locates low-cost
day camps in their area, providing the children
with age-appropriate activities and allowing
time for Mrs. L to rest. Mr. L is consistently
engaged in planning, because it is essential
that the children experience a relationship of
trust and confi dence in their father, who is
likely to be the parent who raises them.
Family Meetings
Family meetings can be used as therapeu-
tic tools for providing family-oriented clini-
cal, palliative, and end-of-life care. They are
forums for communication in which social
workers have the potential to make tremen-
dous contributions (Fineberg, 2010). In the
hospital setting, such meetings, also called
family conferences, may be defi ned as “a
meeting which involves a number of family
members, the patient, and hospital personnel
in discussions concerning the patient’s illness,
treatment and plans for their discharge or their
care outside the hospital” (Hansen, Cornish, &
Kayser, 1998, p. 58). Family conferences are
not the same as family therapy (Meyer, Sch-
neid, & Craigie, 1989) because they focus on
immediate issues relating to health and care
rather than longer-term improvements in fam-
ily functioning. They can, however, enhance
and enrich therapeutic work. Effective com-
munication with families is particularly chal-
lenging, because family members are often the
“hidden patients” in palliative care, both pro-
viding and needing care (Kristjanson & Aoun,
2004). This is especially true when family
members, as defi ned by the patient, are chosen
rather than related by biological or legal con-
nections. By advancing a family systems theo-
retical perspective, family conferences bring a
holistic approach that is emphasized in pallia-
tive and end-of-life care but largely absent in
medical systems (Erstling & Devlin, 1989).
Family conferences have been shown to
improve communication in palliative care
(Hudson, Thomas, Quinn, & Aranda, 2009;
Lautrette et al., 2007). Conferences often
address emotionally intense topics, such as
advance care planning, pain and symptom
management, and ethical issues. They are im-
portant forums for decision making in hospi-
tals, intensive care units, and clinics (Curtis et
al., 2001; Hansen et al., 1998; Kushner, Meyer,
& Hansen, 1989; Meyer et al., 1989). Con-
ferences provide opportunities for collective
patient, family, and health-care provider dis-
cussions (Ambuel, 2000; Liebman, Silbergleit,
& Farber, 1975) that promote the inclusion of
patients and families, invite family members to
be active participants in care (Atkinson, Stew-
art, & Gardner, 1980), allow for collaborative
dissemination of information and clarifi cation
of misinformation, and increase coordination
of health-care providers to reduce the potential
for patients and families to receive confl icting
messages. Given the complexity of purpose
implicit in family meetings, it is important
to consider the involvement of both current
providers and those who have a historical re-
lationship with the patient and family. These
providers often bring both emotional and clini-
cal continuity as well as valuable information
based on an ongoing relationship (Altilio et al.,
2008). Although it is challenging to involve
providers who may have worked with the pa-
tient in the past, technology such as Internet
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Pain Management and Palliative Care 609
video conferencing now enables us to enlist
participants who may be anywhere in the world.
Social work advocacy for clinician continu-
ity and participation may mitigate feelings of
abandonment and honor prior discussions with
patients and families related to their articulated
values, goals, and decision-making processes.
Family conferences, while not normative
in the care of persons with chronic pain, can
serve as forums for educating and assisting
families as they emotionally and cognitively
struggle to move from an acute care model
that anticipates that pain will dissipate to a
recognition that pain may have become a
chronic condition that requires adaptation and
has a continuing impact on the life of the fam-
ily. Varying combinations of patients, family
members, and health-care providers may par-
ticipate in family conferences, making these
interventions adaptable for a broad range of
family confi gurations and cultural traditions
(Fineberg & Bauer, 2011).
SOME ETHICAL CONCEPTS
RELATED TO PAIN AND
PALLIATIVE CARE
Medical ethics was remarkably continuous
and consistent from the time of Hippocrates
until the mid-20th century. In recent years sci-
entifi c, technological, and social developments
have produced rapid changes in the many tra-
ditional conceptions of ethical practice and
obligations in health-care practice. Medical
care, living with chronic illness, and, in many
instances, dying have become more complex
than in previous generations as a result of our
highly technical and disjointed systems of
care. At times, it seems that our medical tech-
nology has surpassed the ability to make ethi-
cal decisions about its use.
Ethics is a branch of philosophy that
seeks to determine how human actions may
be judged right or wrong. The study of eth-
ics implies that the human mind is the funda-
mental means by which actions can be judged
(Beauchamp & Childress, 1989). Thus, ethics
is not the same as moral theology or religious
ethics since ethics uses reason alone and does
not invoke religious beliefs as the source of its
conclusions. Nor is ethics the same as the law.
Although the law is largely concerned with the
public good and the protection of individual
rights, ethics goes further to look at the obliga-
tions of individuals to themselves as well as to
others and to society.
In the practice of medicine, these obliga-
tions are intimately related to purpose. Pel-
ligrino (1979) asserted that the purpose in
medicine is a right and good healing action
taken in the interest of a particular patient.
Kass (1983) emphasized healing as the primary
purpose of medicine while acknowledging that
the pursuit of health, the prevention of death,
and the alleviation of suffering were second-
ary to healing. Any dialogue that attempts to
explore and expand these values and concepts
should be based on a common understanding
and acceptance of the language used. Palliative
care, with an essential focus on serious illness,
risk and benefi ts, goals of care, and decision
making, requires that clinicians are familiar
with common ethical principles and are suf-
fi ciently skilled to identify an ethical dilemma
(see Chapter 3 for further discussion of ethics).
The four principles that underlie and guide
ethical decision making are autonomy, be-
nefi cence, nonmalefi cence, and justice. The
following defi nitions establish a common lan-
guage as a basis for collaboration and discus-
sion.
Autonomy is derived from the Greek autos
(self) and nomos (rule, governance, or law).
Those who have autonomy “act intention-
ally, are informed and free from interference
and control by others” (Lo, 2000, p. 11). In
Western health-care systems, autonomy is
promoted by providing information and assist-
ing patients and surrogates to reach decisions.
Closely tied to the principle of autonomy are
the values of respect for persons, the right
of self-determination, and informed consent.
Cultural beliefs, values, and family dynamics
often require thoughtful clinicians to adapt and
negotiate in order to balance the principle of
individual autonomy with unique patient and
family circumstances. Respect for persons is
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610 Health Social Work: Selected Areas of Practice
based on the tacit belief in the value of each
person; considers social, economic, and cul-
tural variables; and includes the right to self-
determination. Respect for persons supports
the right of capacitated persons to determine
the appropriate level, if any, of medical inter-
vention and the right to change their decisions
about treatment when their condition changes.
At its most basic, benefi cence means no
more than “do good.” Similarly, the principle
of nonmalefi cence tells us to avoid doing harm.
Ethical medical decision making is complex,
and it is not always possible to know clearly
what is “doing good” in the face of ambiva-
lent and nonspecifi c potential outcomes. In
addition, the concept of doing good may dif-
fer based on individual opinions, cultural and
spiritual beliefs, and social preferences, as evi-
denced in the case example describing the care
of Mrs. M.
Justice is an important ethical principle that
involves provision of health care as related to
the availability and distribution of goods and
services. Some argue that society is expected
to determine a just, or at least reasonable, dis-
tribution of the goods necessary to protect the
dignity of the individual person. When we ex-
pand the construct of “distribution of goods”
to include pain management skills and medi-
cations, it becomes a violation of the principle
of justice as well as benefi cence when vulner-
able groups such as older persons, women, and
minorities are not provided competent pain
management equal to that provided to other
groups (Bonham, 2001; Cleeland et al., 1994;
Tarzian & Hoffman, 2004). Distribution is
concerned with scarce resources. At times, de-
mand outstrips supply, a reality that becomes
particularly complex in the American health-
care system, in which supply also is infl uenced
by availability of services and access as deter-
mined by geography, fi nances, and socioeco-
nomic status (see Chapters 5 and 7 for further
discussion).
Ethicists have created specifi c guidelines to
assist in deliberations of challenging ethical
dilemmas wherein there may be confl ict and
confusion about actions that may have both
benefi ts and harms. For example, the principle
of double effect assists clinicians struggling
with decisions related to interventions that
may have intended positive effects at the same
time as unintended, but foreseen, harmful ef-
fects. The concept of proportionality assists in
the weighing of potential benefi ts and harms.
The beliefs, values, and responsibilities of cli-
nicians, patients and families, and institutions
are infused with these profound and complex
discussions. Social workers who are privileged
to join in these deliberations have an important
role in bringing their comprehensive assess-
ment and understanding of patients and fami-
lies to the process and assisting in ensuring
that the process is respectful and informed and
honors the participants as well as the complex-
ity implicit in these discussions.
In addition to a working knowledge of au-
tonomy, benefi cence, nonmalefi cence, justice,
and double effect, social workers practicing
in palliative care and pain settings require
expertise in concepts such as euthanasia and
physician-assisted death or assisted suicide.
In the care of seriously ill patients, treatment
of pain or shortness of breath often requires
use of medications that may have the unin-
tended side effect of sedation. Euthanasia,
physician-assisted suicide, is not the same
as withholding or withdrawing interventions
that allow death to occur. Confusion about the
intent of intensive symptom management, eu-
thanasia, and assisted death on the part of the
staff, patient, or family requires that social
work clinicians, in consult with their nursing
and physician colleagues, are knowledgeable,
responsive, and vigilant in exploring observa-
tions and that they provide accurate informa-
tion to dispel misinterpretation and perhaps
alter the plan of care. Public discussion of
these topics invites thoughtful and compre-
hensive social work analysis because they are
refl ective of profound and complex ethical
and moral issues.
Euthanasia is the deliberate action by a phy-
sician or an individual other than the patient to
end the patient’s life for benevolent motives,
such as the relief of suffering. The act is per-
formed with the explicit consent of a compe-
tent adult who is the patient. The patient’s death
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Pain Management and Palliative Care 611
occurs consequent to the direct action of the
medical provider. Involuntary euthanasia is
the intentional administration of medications
or other interventions to cause the death of a
competent patient without the patient’s explicit
request and full informed consent. Nonvolun-
tary euthanasia is the intentional administration
of medications or other interventions to cause
the death of an incompetent patient who is in-
capable of explicitly requesting it (Emanuel &
Emanuel, 1992). All forms of euthanasia are il-
legal in the United States.
Physician-assisted death is the provision
by a physician of medications or advice that
enables patients to end their lives. It is the
ingestion of medications by a terminally ill,
competent adult intended to hasten death.
Patients take the medications themselves and
are thus the direct agents of their own deaths.
Two states currently allow physician-assisted
suicide: Oregon (since 1998) and Washington
(since 2008).
The Oregon Death with Dignity Act
(ODDA) was structured around the three pil-
lars of self-determination, professional immu-
nity and integrity, and public accountability.
Several unexpected outcomes have occurred
over the decade during which ODDA has been
in effect. Among them is the fact that rela-
tively few persons have chosen to hasten death
through this legislative vehicle. Before the act
was implemented, opponents anticipated a de-
mographic “surge” to Oregon of near-terminal
patients. The empirical evidence does not bear
this out. In 10 years, 541 Oregon residents
have received prescriptions for lethal doses of
medication to end their lives; of this number,
341 actually ingested the drugs. These fi gures
are lower than those forecasted by those on
both sides of the debate. Although those fi g-
ures generally have risen each year, the deaths
under ODDA are still a very small proportion
of Oregon’s total deaths. The principal con-
cerns expressed by patients who choose to
hasten their deaths is loss of autonomy, dimin-
ished quality of life, loss of dignity, and loss of
control of bodily functions, all of which are as-
pects of care that are within the scope of social
work practice (Oregon Department of Health
Services, 2008).
It appears that ODDA may have served as a
catalyst for improving end-of-life care among
Oregon practitioners, driving the increased
use of hospice and palliative care and the im-
proved management of pain. Ensuring death
with dignity for all patients is a goal beyond
the parameters of ODDA. It is infl uenced by
improving the practice of all clinicians caring
for seriously ill patients. Currently there is a
move away from describing “death with dig-
nity” and “physician-assisted suicide” toward
language that describes the hastening of death
by ingestion of medications provided by a phy-
sician as “assisted death.” Of note, in Oregon,
the cause of death on the death certifi cates of
those who chose ODDA is the underlying ter-
minal illness, thus not precluding provision of
life insurance benefi ts.
Only a few states have offered initiatives
to legalize assisted death, either through state
legislatures or citizens themselves. Washington
State has legalized its own death with dignity
act, which was passed in November 2008. The
fi rst year’s report is that 63 patients requested
medication under the law, and of those 63, 36
people died after ingesting medication (Wash-
ington State Department of Health, 2009).
These data are similar to data collected in Or-
egon, as are the top three reasons for pursu-
ing assisted death among Washington patients:
loss of autonomy, loss of dignity, and being
less able to engage in activities that make life
meaningful (Washington State Department of
Health, 2009).
PAIN MANAGEMENT:
AN OVERVIEW
In addition to the opportunity presented in
palliative care, many people who live with
chronic pain have needs that fall well within
the purview of social work practice. In 2003,
a national telephone survey of 1,004 adults
revealed 57% of respondents to have reported
chronic or recurring pain during the past year
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612 Health Social Work: Selected Areas of Practice
(Hart, 2003). The survey considered chronic
pain conditions such as back and knee pain,
arthritis, headache, and migraine. Of those
surveyed, 76% had experienced pain, either
directly or through a connection to a fam-
ily member or friend. Chronic pain had led
to changes in employment, residence, per-
sonal freedom, or mobility. Steps taken to
cope with pain included applying for disabil-
ity and seeking help with activities of daily
living. These fi ndings refl ect adaptation and
experiences of loss that have the potential to
affect self-esteem, identity, role function, and
social and economic stability, both for the
person living with pain and for close family
members and friends. In addition to the per-
sonal and family impact, data from an Ameri-
can Productivity Audit in 2001 estimated that
over half (52.7%) of the workforce reported
pain conditions in the two weeks prior to
the survey. In that two-week period, 12.7%
of respondents lost productive time, with an
average loss of 4.6 hours per week, at a cost
of $61.2 billion a year (Stewart, Ricci, Chee,
Morganstein, & Lipton, 2003). These fi nd-
ings point to a health and economic concern
of major proportions.
Pain is necessary to survival and gener-
ally, but not always, signals physical injury
or disease and alerts one to take some kind
of action. Although pain arguably is a truly
universal experience, at the same time, indi-
viduals, including clinicians, relate to pain
through a kaleidoscope of cultural, familial,
sociopolitical, and spiritual values. For exam-
ple, pain can be viewed as a misfortune, as
a weakness, a path to redemption, or a form
of punishment. Some believe the appropriate
response is to bear pain stoically while others
view pain as a signal to seek medical atten-
tion and expect to receive help and care from
family and friends. Although many expect to
be healed through medical intervention, oth-
ers believe that pain can best be controlled
through prayer or psychological or integra-
tive interventions (see Chapter 12 for further
information). Patients with chronic pain that
may or may not be associated with observable
tissue damage sometimes are accused of ex-
aggerating pain and disability for secondary
gain; yet many feel ashamed and or dimin-
ished by dependence on others and the need
to apply for disability in a system that often
challenges the integrity of applicants. Thus,
we begin to see the complexity and impor-
tance of comprehensive clinical assessment
and interventions to assist persons with pain
that has the potential to impact profoundly
their identity and the quality of their lives
and the lives of their family and friends. This
is true for chronic pain or for pain that ac-
companies incurable progressive illness.
Pain is also unique as a symptom, in that
it is a subjective experience, and unlike other
somatic experiences, such as high blood pres-
sure, body temperature, or blood glucose lev-
els, cannot be measured objectively (American
Pain Society, 2003). Clinicians and family
members must rely on the person’s report of
pain severity and its impact. Social work’s
emphasis on starting where the client is and
assessing people in their environment serve as
frames of reference that imply a respect for in-
dividuals’ perceptions of their experiences and
a valuing of the whole person, including but
not limited to the body. In the management of
pain, an analogous principle is to believe the
report of pain; in palliative care, a comparable
mandate is an understanding of the holistic ex-
perience including values, beliefs, and culture
that inform the life of the patient and family.
The task for social work clinicians is to com-
plement values such as respect for the dignity
and worth of the person with pain and pallia-
tive expertise that empower the profession to
intervene on a clinical, institutional, policy,
and research level.
Pain in Life-Limiting and Chronic
Incurable Illness
In palliative care settings, the experience and
management of pain is impacted by the mul-
tiple challenges presented by diseases such
as cancer, multiple sclerosis, and acquired
immunodefi ciency syndrome (AIDS). These
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Pain Management and Palliative Care 613
statistics provide a sampling of the diseases for
which compassionate care demands that pain
and palliative care needs are addressed.
Pain occurs in:
• 40% to 83% of patients with Parkinson’s dis-
ease (Beiske, Loge, Ronningen, & Svennson,
2009; Ford, 1998; Goetz, Tanner, Levy,
Wilson, & Garron, 1986)
• 42.9% of patients with multiple sclerosis
(Solaro et al., 2004)
• 49% of pediatric cancer patients (Collins
et al., 2000)
• 59% of cancer patients in active therapy
(Van den Beulken-van Everdingen et al.,
2007)
• 64% of cancer patients with advanced dis-
ease (Van den Beulken-van Everdingen
et al., 2007)
• 88% of patients with AIDS (Frich &
Borgbjerg, 2000)
Pain and symptoms such as shortness of
breath, cognitive impairment, and anorexia pres-
ent challenges to patients, their families, and
caregivers that intensify the suffering and feel-
ings of helplessness often associated with life-
threatening and incurable progressive illnesses.
The next narrative illustrates the impact of pain,
fatigue, and cognitive impairment that extends
beyond the direct experience of the patient.
Case Example
Mrs. D is a 65-year-old widowed African
American woman diagnosed with chronic
renal disease. She has been the emotional
and administrative center of a large extended
family and is becoming increasingly fatigued,
spends more time in bed, and is less able to
engage with, and direct, her family. Her pain is
being managed intensively, and the medica-
tions prescribed have caused cognitive impair-
ment. It is expected that as her body becomes
tolerant to the medication, her cognition will
improve. Her family is becoming increasingly
distressed; wanting her to be more awake,
physically active, and cognitively clear. They
are angry with the palliative care doctor,
because they perceive his lack of expertise in
prescribing as the reason for her cognitive im-
pairment. Diagnostic assessment indicates that
the symptom of fatigue refl ects irreversible,
progressive kidney failure. Social work inter-
ventions include:
• Reviewing the family’s perception and un-
derstanding of the status of disease
• Exploring various factors that might inform
the anger expressed at the physician, includ-
ing a lack of understanding of the process
of trialing and adjusting pain medications,
racial tensions or misunderstandings, and
fear that patient is being harmed rather than
helped
• Exploring the symbolic signifi cance and at-
tributed meaning of the symptoms of pain
and confusion to understand the impact on
family of viewing their mother as confused
and unavailable to them
• Assisting the family to integrate medical
information by organizing a family meet-
ing with the team, eliciting and exploring
their own observations of the changes in the
patient’s condition
• Working with medical staff to prepare the
family for the probability that Mrs. D will
become increasingly sleepy and that, as she
clears cognitively, they will need to value
and maximize the time that she is awake
and able to interact
• Acknowledging and exploring the individual
and family response to this potential loss, and
reinforcing community and spiritual supports
that might be helpful to them
• Acknowledging the changing family struc-
ture as a loss experience, and assisting the
family to consider how to move forward
with roles and responsibilities
Mrs. D’s narrative portrays how a multi-
dimensional view of symptoms can be at the
core of the assessment and intervention pro-
cess. Each individual and family experiences
symptoms in the context of either a chronic
or potentially life-threatening illness and
through their own unique history and family
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614 Health Social Work: Selected Areas of Practice
constellation. The next narrative takes the
same symptoms—pain, fatigue, and cognitive
impairment—but demonstrates how the etiol-
ogy, impact, symbolic signifi cance, and result-
ing interventions may differ.
Case Example
Mrs. J is a 35-year-old married mother of three
children, ages 3 to 8. She has back pain that
is often debilitating and interferes with her
ability to parent, work, and participate in an
intimate relationship with her husband. She is
engaged in a multimodal treatment plan that
includes medication trials, physical therapy,
and cognitive-behavioral therapy. As directed
by her doctor, she gradually has raised the
dose of opioid medications and experiences in-
creased side effects of fatigue, sleepiness, and
cognitive slowing. Her husband and extended
family worry that she is too impaired to care
for her children, who appear to be increasingly
“out of control.” Her sister-in-law, who is not
aware that she is receiving opioids for pain,
interprets her behaviors as symptoms of drug
addiction, and reports the family to child pro-
tective services.
In this context, Mrs. J’s symptoms are med-
ication side effects that precipitate an emer-
gency situation stemming from her decreased
ability to function. It compromises the safety
of her family, and results in trauma and fam-
ily confl ict consequent to the charge of child
endangerment. A proactive and preventive ap-
proach from the pain management team might
have prevented the deleterious outcome. The
social work plan included:
• Assessment of the relationship among the
children’s behaviors, Mrs. J’s symptoms
and side effects, and the increased family
tensions
• Intervention with the family and child pro-
tective services to address the needs of the
children and ensure the family’s ability to
provide support and supervision as medica-
tions are stabilized
• In consultation with Mrs. J, a meet-
ing with family members, including the
sister-in-law, to educate them about the dif-
ferences among addiction, tolerance, and
physical dependence, and behaviors related
to medication side effects
• Engagement with family members as in-
formed supports and participants in a plan
of care that would involve multimodal
treatments, including ongoing medication
trials and titration of medications
VULNERABLE POPULATIONS
AND DIVERSE SETTINGS
Undertreatment of pain is a multifaceted
problem that involves educational, regula-
tory, and reimbursement barriers as well as
beliefs, values, and behaviors that impact the
individual’s relationship to pain, medications,
and health-care professionals. Poorly con-
trolled pain causes unnecessary suffering for
many, and particular groups have been iden-
tifi ed as more vulnerable. The risk of under-
treatment increases when assessment of pain
becomes more of a challenge; for example,
for those who have language or cultural differ-
ences and for infants, children, older persons,
and people who are cognitively impaired or
have mental illness (American Pain Society,
2003). Many of the barriers to pain manage-
ment are psychosocial, political, spiritual, or
cultural in nature and thus become appropriate
foci for social work assessment and interven-
tion (Altilio, 2004; Parker-Oliver, Wittenberg-
Lyles, Washington, & Sehrawat, 2009).
Social work’s heritage of service, commit-
ment to justice, and advocacy for oppressed
groups demands that we develop the ability to
recognize and advocate for populations whose
vulnerability and sense of impotence may be
intensifi ed by pain, illness, and the inherent
continuing diffi culty in accessing care from
a health-care system that can be unresponsive
(Mendenhall, 2003).
Geriatrics
Geriatric social work clinicians share responsi-
bility for highlighting and solving the problem
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Pain Management and Palliative Care 615
of unnecessary suffering in older persons caused
by unrecognized and uncontrolled symptoms,
including pain and depression (Beekman et al.,
2002; Bernabei et al., 1998; Fox, Raina, & Jadad,
1999; Jerant, Azari, Nesbitt, & Meyers, 2004;
Liao & Ferrell, 2000). Older people may expe-
rience multiple chronic illnesses over time that
impact their quality of life as well as the lives of
their family and caregivers. Uncontrolled pain
can lead to depression and other mood disor-
ders, agitation, social isolation, sleeplessness,
decreased function, loss of appetite, and risk
of falls (American Geriatric Society Panel on
Persistent Pain in Older Persons, 2002; Stein,
2001; WHO, 2004). Older people often believe
that pain is to be expected and, when asked,
may not acknowledge “pain” but willingly af-
fi rm “aches” or “soreness.” Additional barriers
include myths and misunderstanding regarding
addiction and worry about cost and side effects
of medications. The focus of assessment often
extends beyond physical pain to existential is-
sues, such as the mortality of self and friends
and the meaning and purpose of life. In this
vulnerable population, cognitive impairment
can complicate the expression, assessment, and
management of pain and increase the clinical
team’s responsibility to adapt assessment and
treatment for chronic conditions, such as osteo-
porosis, or for life-threatening illnesses (Sachs,
Shega, & Cox-Hayley, 2004; Stein, 2001).
Palliative care and chronic pain interven-
tions require accommodation of the particular
needs of older people at the individual level by
adapting assessment to functional limitations,
such vision or hearing limitations. At the level
of group, community, or society, social work-
ers are charged to construct alternate palliative
care models to respond to those who require
care over the course of chronic, slowly pro-
gressing illnesses (Jerant et al., 2004).
Gender Issues
A person’s experience with and response to
pain is infl uenced by multiple factors, includ-
ing gender. Men and women experience pain
differently; research suggests that women are
more likely to be inadequately treated both
in chronic pain settings (Hoffman & Tarzian,
2001) and in the case of illnesses such as can-
cer and AIDS (Breitbart et al., 1995; Cleeland
et al., 1994). The study of gender-based dif-
ference in pain includes consideration of such
complex areas as:
• Biological factors, such as mechanisms re-
lated to opioid receptors, sympathetic nervous
system function, and hormonal infl uence
• Psychological factors, such as cognitive ap-
praisal and attributed meaning
• Behavioral responses, such as coping mech-
anisms; communication styles; and health-
related activities, such as seeking care and
taking medications
• Cultural and socialization factors that im-
pact reactions, perceptions, thoughts, and
behaviors on both the part of the patient and
health-care practitioners (Unruh, 1996)
Although etiology and causation are not
well understood, current research suggests that
the pain reports of women are taken less seri-
ously than those of men, that women’s pain
is more likely to be discounted as emotional
or psychogenic, and that women receive less
aggressive treatment (Fillingim, 2005; Interna-
tional Association for the Study of Pain, 2009).
This disparity violates the ethical principles of
justice and respect for the dignity and worth
of the individual (Hoffman & Tarzian, 2001).
Keefe and colleagues (2000) report signifi cant
differences in pain, pain behavior, and physi-
cal disability between men and women with
osteoarthritis. Of note, when “catastrophiz-
ing” the experience was considered, the previ-
ously signifi cant effect of gender disappeared.
Gender differences in expression of pain were
found in a classic early study in which males
reported signifi cantly less pain to female ex-
perimenters than they did to male experiment-
ers (Levine & De Simone, 1991).
Minority Populations
In 2001, Bonham reviewed multiple stud-
ies documenting disparities in pain treatment
by race, ethnicity, and socioeconomic status.
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616 Health Social Work: Selected Areas of Practice
Although reports are somewhat inconsistent,
substantial evidence exists to support the
troubling conclusion that persons belonging
to racial and ethnic minority groups are less
likely to receive adequate treatment for acute
and chronic pain (Anderson et al., 2000; An-
derson, Green, & Payne, 2009; Bonham, 2001;
Cleeland et al., 1994; Dannemiller Memorial
Educational Foundation, 2004). Variables that
underlie these disparities are multifactorial and
may exist on the clinician, patient, family, or
institutional level. They range from poor com-
munication, mistrust, racism, and economic
or educational disadvantage, to a health-care
system that supports disengagement, lack of
continuity of care, and fails to allow suffi cient
time in clinical encounters to bridge differ-
ences and enhance trust.
In addition, language differences can in-
tensify misunderstanding and increase anxiety
consequent to the patient’s inability to comfort-
ably communicate his or her needs to health-
care professionals. Evidence also suggests that
inner-city pharmacies do not stock the opioids
used to treat moderate to severe pain, creating
an additional challenge for an already disad-
vantaged group. Informed social workers can
assist their patients and colleagues to prevent
crises by encouraging patients to contact their
pharmacies to ensure that prescribed medica-
tions are available or to make alternate plans
to secure them (Morrison, Wallenstein, Natale,
Senzel, & Huang, 2000).
Substance Abuse
It is estimated that between 6% and 15% of
the U.S. population has a substance use disor-
der that may involve the abuse of illicit drugs
or misuse of prescription medications (Collier
& Kopstein, 1991; Groerer & Brodsky, 1992;
Zachny et al., 2003; see Chapter 17 for more
information). Some medications used in the
management of chronic pain and in palliative
care are controlled substances. These and other
classes of medications have the potential for
abuse and diversion, creating a heightened vig-
ilance when pain medications are prescribed
for patients known to abuse drugs. Treatment
of patients with a current or remote history of
addiction is impacted by clinical, social, regu-
latory, and policy challenges such as:
• Confusion and lack of understanding of
these terms:
• Addiction. A primary, chronic, neuro-
biological disease with genetic, psy-
chosocial, and environmental factors
infl uencing its development and mani-
festations. It is characterized by be-
haviors that include one or more of the
following: impaired control over drug
use, compulsive use, continued use de-
spite harm, and craving. Use despite
harm includes harm in the physical,
emotional, or social arenas as well as
harm to relationships, including relation-
ships with providers. At times, behav-
iors suggestive of addiction are actually
relief-seeking behaviors that dissipate
after pain is managed.
• Physical dependence. A state of adapta-
tion that is manifested by a drug-class-
specifi c withdrawal syndrome that can be
produced by abrupt cessation, rapid dose
reduction, decreasing blood level of the
drug, or administration of an antagonist.
Physical dependence may develop with
chronic use of many classes of medica-
tions. These include beta-blockers, cor-
ticosteroids, antidepressants, and other
medications that are not associated with
addictive disorders.
• Tolerance. A state of adaptation in which
exposure to a drug induces changes that
result in a diminution of one or more of
the drug’s effects over time. Tolerance
may occur to both the desired and unde-
sired effects of drugs and may develop
at different rates for different effects.
For example, in the case of opioids, tol-
erance usually develops more slowly to
analgesia than to respiratory depression,
and tolerance to the constipating effects
may not occur at all. In many instances,
this dynamic of diminishing effect is due
to progression of disease rather than to
tolerance to a medication.
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Pain Management and Palliative Care 617
• Pseudoaddiction. A term used to describe
behaviors that may occur when pain is un-
dertreated. Patients with unrelieved pain
may become focused on obtaining medi-
cations, “clock watch,” or request specifi c
medications that they have found helpful
in the past. Pseudoaddiction can be dis-
tinguished from true addiction in that the
behaviors resolve when pain is treated
effectively (www.ampainsoc.org/advocacy
/opioids2.htm)
• Providers’ fear of the processes and conse-
quences of prescribing opioid analgesics,
which has been referred to as opiophobia
(Morgan, 1986; Shine & Demas, 1984).
• Fear of regulatory, law enforcement, and
medical board scrutiny.
• Patient’s, family’s, and clinician’s fears of
causing relapse or activating a latent addic-
tive disease.
• Worry about potential diversion.
• Lack of time, skill, and interdisciplinary
support needed to assess, treat, and monitor
the care of people with pain and problem-
atic drug use behaviors.
Many people with the disease of addiction
have multiple medical problems and conse-
quently can be quite symptomatic. They often
are marginalized and have few advocates (Otis-
Green & Rutland, 2004). Those who used
substances early in life may not have learned
behaviors or skills that allow them to negoti-
ate health-care systems. As a group, they may
have no power base or political infl uence and
often have alienated friends and family. They
require expert and respectful treatment of their
addiction or problematic drug-use behaviors as
well as symptom management that maximizes
benefi t and diminishes harmful outcomes. Al-
though experts in these dual fi elds of addic-
tion and pain management are few, guidance is
available through many resources that are eas-
ily accessible through the Internet. A treatment
program requires expert assessment, structure,
consistency, and psychosocial and psycho-
logical interventions to create a treatment plan
that maximizes the opportunity for successful
treatment of both pain and addictive disease
and creates an environment of safety for pa-
tients, families, and prescribers. See Chapter
17 for a full discussion of substance use issues.
Policy Issues: Opportunity for Advocacy
and Leadership
In 1998, the National Institutes of Health
(NIH) estimated the fi nancial impact of poorly
treated pain to be in excess of $100 billion a
year, including the costs of health care, com-
pensation, and litigation. Above and beyond
the multilevel impact of poorly treated pain on
the quality of life of individuals and their fami-
lies lie the fi nancial implications of a public
health problem of signifi cant proportions.
For example, while the standard of care in
both pain and palliative care is a multidimen-
sional approach with a strong emphasis on psy-
chosocial needs, reimbursement is insuffi cient
to support this level of care. There is a need to
collaborate with insurers and legislators to ad-
vocate for research funding and to document
the potential impact of pain and palliative care
interventions on the quality and cost of care for
patients, families, and caregivers. This care often
is provided at considerable physical, fi nancial,
and emotional cost to caregivers and ultimately
to the heath-care system (Levine, 2004). Legis-
lative efforts range from pain management bills
that mandate professional education to those
that recommend monitoring programs that re-
quire prescribers to submit patient prescription
information to a central database. Although the
goal is to decrease abuse and diversion of pre-
scription medications, this program challenges
core social work and human values, such as pri-
vacy, self-determination, autonomy, and confi –
dentiality. These legislative efforts are rich areas
for social work involvement. Whether as clini-
cians, advocates, community organizers, policy
planners, or researchers, the need for a social
work presence is critical.
Interdisciplinary and Transdisciplinary
Team
An interdisciplinary team approach involv-
ing health-care providers from a number of
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618 Health Social Work: Selected Areas of Practice
professions is central to optimal palliative
care practice (Lickiss, Turner, & Pollock,
2004; NCP, 2009; WHO, 1990) and is at the
core of chronic pain care. In contrast to a
multidisciplinary approach in which differ-
ent professionals independently provide care,
“interdisciplinary practice refers to people
with distinct disciplinary training working
together for a common purpose, as they make
different, complementary contributions to pa-
tient-focused care” (McCallin, 2001, p. 419).
A team addresses patients’ and family mem-
bers’ needs—biological, psychological, emo-
tional, social, and spiritual—by providing
the dual benefi t of specialized knowledge
and skills from multiple professionals de-
livered in combination rather in isolation.
Characterized by a collaborative effort that
includes information exchange and coordi-
nated care planning, it places the patient and
family at the center of team deliberations and
maximizes the unique contributions of each
member (Connor, Egan, Kwilosz, Larson, &
Reese, 2002; Loscalzo & Von Gunten, 2009).
Intervention techniques, such as family con-
ferences that include patients, family mem-
bers, and health-care team members, promote
such coordinated interdisciplinary practice
(Fineberg, 2010).
Some highly coordinated palliative care
teams may be using a transdisciplinary approach.
The transdisciplinary team is characterized by
substantial overlap in functions such that mem-
bers share roles in addition to providing their
discipline-specifi c contributions to the team. Al-
though team professionals are not interchange-
able, they share responsibilities for assessing and
addressing patient and family care issues.
In transdisciplinary work, roles of the individ-
ual team members are blurred as their profes-
sional functions overlap. Each team member
must become suffi ciently familiar with the con-
cepts and approaches of his or her colleagues
to be able to assume signifi cant portions of the
others’ roles. (Hall & Weaver, 2001, p. 868)
The team approach requires profession-
als to act both as unique contributors and as
team members. This dual role may be very
challenging to health-care providers but of-
fers a very powerful form of care. Team
members, while readily able to verbalize and
explain their roles both to other team mem-
bers and to patients and families, are at the
same time fl exible in practicing their profes-
sional roles and careful not to compromise
patient and family care due to overly guarded
application of their professional “turf” (Otis-
Green & Fineberg, 2010). Turf issues should
be discussed openly so that they can be dis-
armed and minimized. In the setting of eco-
nomic strains in health care, team members
may be especially guarded about their turf in
service of job security.
Teams that function well develop effective
communication and mutual trust (Blacker &
Deveau, 2010; Maddocks, 2006). Coordinated
function is important for minimizing the confl ict-
ing and confusing transmission of information
to patients and families, especially in the sen-
sitive context of palliative and end-of-life care.
Teams benefi t when members engage in inten-
tional team-building efforts, such as becoming
more familiar with each other, acknowledging
differences and similarities in perspectives, ad-
dressing confl ict respectfully and openly, and
developing nonhierarchical patterns of com-
munication (Otis-Green & Fineberg, 2010).
The latter activity is especially challenging in
the health-care setting in which the biomedical
model imposes a hierarchical perspective.
Self-Care
Practitioners working in the arena of palliative
care and pain management often witness the
anger, sadness, and suffering of those for whom
they care, especially in situations in which pa-
tients are facing chronic pain or the end of life
(Speck, 2006). In addition to clinical work with
patients and families, institutional and setting-
specifi c practices and perceptions and complex
ethical dilemmas can be a source of stress, job
dissatisfaction, and burnout (O’Donnell et al.,
2008; Ulrich et al., 2007).
Social workers who remain with patients
and their families throughout the course of
treatment to the end of life can experience
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Pain Management and Palliative Care 619
heavy emotional burdens, sometimes when
disease-modifying treatments are continued
and deemed to cause unnecessary suffer-
ing and at other times when the goal of care
changes exclusively to intensive and com-
passionate comfort care. The emotional, ex-
istential, and spiritual depth of social work
practice is characterized by the profession’s
use of self and the capacity to witness and
“sit with” people’s pain and suffering (Arnd-
Caddigan & Pozzuto, 2009; Renzenbrink,
2004). This intensely personal and deep in-
volvement on the part of clinicians demands
conscious and candid attention to how they
are preventing compassion fatigue, espe-
cially in the long term. Challenges for all
practitioners include maintaining delicate
professional boundaries in which investment
and attachment to patients and family mem-
bers is genuine, but not overly consuming.
This balance of closeness and distance al-
lows clinicians to provide sincere, meaning-
ful, skilled care that is not so depleting that
it causes practitioner burnout or compassion
fatigue (Renzenbrink, 2004). Social workers
who experience burnout and compassion fa-
tigue typically report frustration with chal-
lenges within their environments of care and
experiencing an unbalanced practice in the
long term that has worn away their internal
emotional resources to the point of apathy
and inability to provide empathetic, dedi-
cated care (Otis-Green, 2011).
Self-care requires maintaining balance
between the personal and professional in the
larger context of a social worker’s life. Cli-
nicians must develop and preserve boundar-
ies between their professional and personal
selves. This does not suggest an artifi cial
separation, but rather a concerted effort to
develop a rich personal life of relationships,
interests, hobbies, and activities that are not
related to work and an ability to enjoy one’s
personal time without having frequent intrud-
ing thoughts about work. Engagement in such
a personal life, subtly full of life-affi rming
activities, becomes important for the rejuve-
nation of the self and the ability to continue
practice over time.
CONCLUSION
The inclusion of palliative care and pain man-
agement in this book validates the emerging
presence and potential infl uence of social
work in these specialties. Palliative care has
been a professional focus in England since the
1960s, as evidenced by the writings of Monroe
(2004), Saunders (2001), and Sheldon (1999,
2000). In the United States, we see a burgeon-
ing presence of social work in palliative care
following in the footsteps of physicians and
nurses. Social work presence in the specialty
of pain management is limited and has yet to
fully emerge.
The research of Sieppert (1996) and the
work of Christ and Sormanti (1999) and Ray-
mer and Csikai (2005) demonstrate the need
for education, research, and leadership in both
chronic pain and palliative care. The Social
Work Summit on End-of-Life and Palliative
Care, held in 2002 and 2005 (Altilio, Gardia,
& Otis-Green, 2008), addresses the need for
collaboration among practitioners, educators,
and researchers.
The formalized curricula represented by
Education of Physicians in End-of-Life Care
and End-of-Life Nursing Education Consor-
tium recently have been joined by the Social
Work End-of-Life Curriculum Project (Raymer
& Csikai, 2005), the ACE Project (Advocat-
ing for Clinical Excellence: Transdisciplinary
Palliative Care Education), and the Promoting
Excellence in Pain Management and Palliative
Care for Social Workers courses (Otis-Green &
Ferrell, 2010). In addition to the postgraduate
certifi cate programs offered at the New York
University Silver School of Social Work and
Smith College School of Social Work, organi-
zations such as Cancer Care, the National Asso-
ciation of Social Workers, and the Association
of Oncology Social Workers have created ad-
ditional comprehensive continuing education
courses, many of which are available online.
Since the 1970s, social work authors (Altilio,
2005, 2008; Glajchen, Blum, & Calder, 1995;
Hudgens, 1977; Loscalzo & Amendola, 1990;
Mendenhall, 2003; Roy, 1981; Subramanian &
Rose, 1988) and advocates, including Yvette
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620 Health Social Work: Selected Areas of Practice
Colón and Kristina Thomson, have champi-
oned and encouraged social work expertise in
pain management. The Leadership Develop-
ment Award, offered to social workers by the
Soros Foundation Project on Death in Amer-
ica, focuses on end-of-life and palliative care
and includes pain and symptom management
as core skills for social work clinicians. The
inclusion of these specialties in this Handbook
further validates the role, responsibility, and
opportunity for social work clinicians in these
areas of practice.
Since its inception, social work has champi-
oned important values, including justice, com-
mitment to the underserved and the vulnerable,
and respect for the integrity and worth of all
human beings. The fi elds of pain management
and palliative care are like a tapestry in which
these values are woven into every aspect of the
work. People who are living with life-limiting
illness and/or chronic pain interface with a
health-care system that is struggling to repair
fractures and bridge deep crevices. They are
potentially vulnerable and often underserved.
We hope that this chapter helps to alert social
workers to the myriad of possibilities and op-
portunities to make a difference in the lives of
these populations.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 22.1
Provide an example of how the skills and
code of ethics every social worker learns can
be translated to pain and palliative care social
work practice.
Learning Exercise 22.2
Select a partner and conduct a role-play. One
person takes the role of a patient in the hos-
pital and the other of a hospital social worker
called to assess why the patient is “so upset.”
The patient informs the social worker that she
has just learned that the treatment seems to be
no longer effective and that she is not going
to live more than three months. Using infor-
mation from this chapter and your social work
classes, conduct a social work assessment of
this patient and create a social work treatment
plan for intervention.
Learning Exercise 22.3
Identify a community social worker working
in pain management or palliative care, and
interview this person about his or her work.
Questions might include:
• How did you select this line of work? How
long have you worked in this area of health
social work practice?
• What are some examples of ethical dilem-
mas that you have encountered working in
this area of practice? How did you resolve
them?
• How do you manage self-care and cope
with challenging situations?
• What motivates you to do the work that you
do?
• How do you work with other disciplinary
professionals in your work setting or in the
community?
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627
23
End-of-Life Care
YVETTE COLÓN
The purpose of this chapter is to provide basic
knowledge about end-of-life social work prac-
tice. Social workers can have a profound im-
pact on the experiences of individuals at the
end of their lives and on their families, loved
ones, and other health providers. Increasingly,
however, social workers are challenged to pro-
vide services to the growing number of indi-
viduals who need end-of-life care—children
and adults who are chronically ill or have life-
threatening conditions—as well as those who
care for them. Often they are not prepared for
the myriad complex issues involved in end-of-
life practice. Despite their increasing involve-
ment in providing important psychosocial
services to dying individuals, social workers
do not receive relevant training in their under-
graduate and graduate programs.
Chapter Objectives
• Defi ne end-of-life care.
• Defi ne palliative care at the end of life.
• Describe the roles that social workers can
play in end-of-life care.
• Describe the importance of effective com-
munication so that patient and family needs
are expressed and appropriate end-of-life
care is facilitated.
• Understand the process of end-of-life plan-
ning, including advance directives, to pro-
mote informed choices and help patients
and families to clarify and communicate
their preferences.
• Demonstrate an understanding of factors
that infl uence the death and dying experi-
ence of cultural groups and disadvantaged
persons at the end of life.
• Describe contemporary grief and loss
theories.
The course of death and dying has changed
tremendously in the past few decades be-
cause of social and technological advances.
Increases in average life expectancy due to
advances in medical science and technology
(National Center for Health Statistics, 2010)
have infl uenced our beliefs and attitudes
about life and death. The course of illness and
dying has changed; at one time, the onset of
illness and subsequent death from certain ill-
nesses was sudden and rapid, but now the typi-
cal death may be more prolonged. The place
where death occurs has moved from the home
or community to the hospital, nursing home, or
institutional setting. These changes have posed
enormous challenges in end-of-life and pallia-
tive care.
PALLIATIVE CARE
Palliative care is an interdisciplinary care
model that focuses on the comprehensive man-
agement of physical, psychological, and exis-
tential distress. It is defi ned as “the active total
care of patients whose disease is not respon-
sive to curative treatment.” Control of pain and
other symptoms and psychological, social, and
spiritual problems is paramount. “The goal of
palliative care is the achievement of the best
possible quality of life for patients and their
families” (World Health Organization [WHO],
1990, p. 7). Palliative care aims to improve the
patient’s quality of life by identifying physical,
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628 Health Social Work: Selected Areas of Practice
psychosocial, and spiritual issues while man-
aging pain and other distressing symptoms.
Palliative care “affi rms life and regards dying
as a normal process; is applicable early in
the course of illness, in conjunction with
other therapies that are intended to prolong
life, such as chemotherapy or radiation ther-
apy, and uses a team approach to address the
needs of patients and their families, including
bereavement counselling, if indicated” (WHO,
2004, p. 3).
The palliative care model applies through-
out the entire course of illness and attempts to
address the physical, psychosocial, and spiri-
tual concerns that affect both the quality of life
and the quality of dying for patients with life-
limiting illnesses at any phase of the disease.
It includes interventions that are intended to
maintain the quality of life of the patient and
family. Although the focus intensifi es at the
end of life, the priority to provide comfort and
attend to the patient’s and family’s psychoso-
cial concerns remains important throughout
the course of the illness. In the model’s ideal
implementation, patient and family values and
decisions are respected, practical needs are ad-
dressed, psychosocial and spiritual distress are
managed, and comfort care is provided as the
individual nears the end of life.
Palliative medicine is the medical specialty
dedicated to excellence in palliative care. Pal-
liative care specialists, including social work-
ers, typically work on teams and are involved
when patients’ disease is advanced, their life
expectancy is limited, and medical and psy-
chosocial concerns become complex and more
urgent. In practice, these problems often are
related to uncontrolled symptoms, confl icted
or unclear goals of care, distress related to the
process of dying, and increasing family bur-
den. The social worker can educate the family
about expected symptoms and their manage-
ment, clarify information about medications
and medical procedures, facilitate commu-
nications with the health-care team, help the
family make decisions about practical and
fi nancial changes in the family structure, nor-
malize their emotional experiences, and teach
them effective coping skills.
HOSPICE
The emphasis of hospice care is on comfort
at the end of life through control of pain and
other symptoms. Rather than relying on cura-
tive interventions and technology, it returns
the focus to natural approaches in the care of
dying individuals. Hospice focuses on caring,
not curing, and in many cases is provided in
the patient’s home. Hospice care also is pro-
vided in freestanding hospice centers, hospi-
tals, and nursing homes and other long-term
care facilities. Hospice services are available
to patients of all ages, religions, races, and ill-
nesses. Hospice care is covered under Medi-
care, Medicaid, most private insurance plans,
health maintenance organizations, and other
managed care organizations (National Hospice
and Palliative Care Organization, 2010).
The hospice movement in the United States
began in the 1960s when Dame Cicely Saun-
ders, a British physician, introduced the con-
cept of hospice at Yale University. She came
to the United States to introduce the approach
to symptom relief for dying individuals and
discussed how St. Christopher’s inpatient hos-
pice, the fi rst modern hospice, was established
in London. Saunders presented the concepts
of hospice to medical and nursing faculty and
students at Yale. Florence Wald, dean of the
Yale School of Nursing, created a multidis-
ciplinary group at Yale-New Haven Hospital
to look into changing the way that institu-
tion cared for dying patients, modeling their
care after St. Christopher’s approach. In 1975,
the fi rst hospice in the United States opened
in Connecticut due to the work of this small
group of individuals (Saunders, 1999).
Signifi cant barriers to effective end-of-
life care exist and include patients’ and
families’ attitudes about death and dying,
inconsistent communication between pa-
tients and the health-care team, insuffi cient
training of health-care providers, physicians’
inexperience with providing care, lack of ac-
cess to care, and inconsistent reimbursement.
The National Academies of Science, through
its Institute of Medicine (IOM), produced an
important report, “Approaching Death: Care
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End-of-Life Care 629
at the End of Life” (Field & Cassell, 2002).
Among its recommendations were these:
• Reliable and skillful supportive care should
be provided to patients and families facing
the end of life.
• Health-care professionals should know and
use effective interventions to prevent and
relieve pain and other symptoms.
• Palliative care should be recognized as a
defi ned area of expertise, education, and
research.
• The public should be educated about end-
of-life care and advance care planning.
• Tools should be developed for improving
patients’ quality of life, and health-care
organizations should be required to use
them.
• Medical education should be modifi ed to
ensure that relevant attitudes, knowledge,
and skills regarding end-of-life care are
represented and included in teaching.
• Research should be undertaken to strengthen
the knowledge base of end-of-life care.
Although efforts have been made to implement
these recommendations to improve existing
care at the end of life, progress has been slow.
ANTICIPATING THE END
OF LIFE
Individuals at the end of life may experience
many symptoms that can be distressing to
them and their caregivers. Although the dying
process is not consistent across individuals and
families, some physical, physiological, and
emotional changes can be predicted during
the end of life. Advanced stage of illness can
result in symptoms such as diffi culty breath-
ing, insomnia, loss of appetite, pain, nausea,
and constipation. Patients also may experi-
ence heightened anxiety, depression, anger,
or emotional withdrawal. Understanding the
nature of the symptoms most frequently expe-
rienced by dying people and knowing how to
help patients and their signifi cant others cope
are critical to effective end-of-life social work
practice. The social worker can take the oppor-
tunity to educate patients and families about
the management of these physical symptoms
and psychological responses.
During this important period of care, the
social worker can act as a guide to help the
patient and family prepare for the end of life.
Knowing what to expect is important for social
workers so they can help manage patient and
family needs before, during, and after death.
Social workers provide anticipatory guidance
and expert psychosocial care to promote phys-
ical and psychological comfort for the dying
person and for family members.
INTERDISCIPLINARY
TEAMWORK
Individuals at the end of life often move be-
tween different health-care settings—from
home to acute or long-term care facilities, out-
patient or inpatient treatment (either curative or
palliative), home health care, and hospice set-
tings—as their disease progresses. They may
receive care from several different physicians,
nurses, and other health-care professionals
during the course of their illness. Coordinat-
ing all necessary care during moves from one
setting to another presents considerable chal-
lenges to patients, families, and health-care
providers. Several different organizations and
payment sources may be involved that may
present barriers to optimal end-of-life care.
The involvement of an interdisciplinary
palliative or hospice care team is an excellent
solution to care coordination problems. These
typically include:
• Patient
• Patient’s family or caregiver
• Palliative care or hospice physician
• Patient’s personal physician
• Nurses
• Social workers
• Clergy/pastoral counselors
• Pharmacists
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630 Health Social Work: Selected Areas of Practice
• Home health aides
• Trained volunteers
• Physical, occupational, and speech thera-
pists, if needed
Interdisciplinary teams are common in both
hospice and inpatient palliative care settings.
The team meets on a regular basis to discuss
the patients in their care and to develop individ-
ualized care plans that focus on each patient’s
well-being and need for pain management and
symptom control. To varying degrees, private
and public insurance companies pay for end-
of-life care services for patients who need
them, such as medication and treatments, med-
ical equipment and miscellaneous procedures,
and tests necessary to provide comprehensive
comfort care. Comprehensive care can include
nursing, physician, and social work services
along with homemaker (e.g., light housekeep-
ing and meal preparation) and personal care
(e.g., bathing and dressing) services.
COMMUNICATION: TALKING
ABOUT DEATH AND DYING
Patients, families, and social workers may be
infl uenced by misconceptions about death and
dying. They may believe that it is depressing
to talk about death or that dying patients and
families want to talk only about positive things.
They may think that talking about dying will
make patients and families upset and angry,
that individuals do not always know that they
are dying, or that dying children do not know
how to communicate their concerns and fears,
for example. These myths and misconceptions
often impede the ability to communicate effec-
tively with patients and their signifi cant others.
To communicate clearly at the patient’s end of
life, social workers must focus on providing
clinical care that supports the patient and un-
derlying family values and meanings. Effec-
tive communication is critically important to
understanding the experiences of others.
Social work traditionally has empha-
sized therapeutic communication with active
listening. For effective communication with
patients and caregivers facing the end of life,
the fi rst and most important skill that all social
workers must develop is listening. Being fully
“present” with another person is essential to
effective communication. Asking questions or
soliciting comments requires truly listening to
responses. Listening involves paying attention
not just to the words spoken but to all other
verbal and nonverbal cues that are communi-
cated simultaneously, no matter how subtle.
Much information can be gained by listen-
ing to language content and style, choice of
words, pauses, silences, body posture, mood,
and facial expressions.
Open-ended questions are useful in gath-
ering information from the patient and fam-
ily. In contrast to closed-ended questions
(which only allow yes, no, or another fi xed
response), asking open-ended questions pro-
vides an opening or invitation for patients and
families to share information that is important
to them. Gaining an understanding of the pa-
tient’s concerns and style of communication
enables social workers to provide the informa-
tion the patient and family desire in a man-
ner that they can understand (Byock, 1998).
Rather than asking closed-ended questions,
the social worker can ask questions that will
elicit more information, such as “Can you tell
me what you understand about the changes in
your loved one’s condition?” Refl ective state-
ments also help to clarify the social worker’s
and the patient’s understanding. An example
of a refl ective statement is “What I heard you
just say is _____________. Is this correct? Is
that what you intended?”
The ability to make empathic statements,
demonstrating an awareness of and sensitiv-
ity to another’s feelings, thoughts, and ex-
periences (without having the same feelings,
thoughts, and experiences of another), is easy
for some and diffi cult for others, but it is a
simple skill that can be learned and practiced.
Listening to the patient and family, sharing re-
fl ective comments about the diffi culty of the
situation with them, acknowledging their fears
and apprehensions, showing concern and look-
ing into their eyes if appropriate are all simple
JWBT514_ch23.indd 630JWBT514_ch23.indd 630 9/21/11 7:46 PM9/21/11 7:46 PM
End-of-Life Care 631
actions that communicate understanding of the
patient’s experience. Additional techniques for
gathering information can be found in Chapter
10 in this book.
Communicating with a child who is dying
is a special challenge for families and health-
care professionals. The death of a child is a
unique tragedy, and adults, including social
workers, may feel a profound need to protect
and nurture the child and themselves against
the loss, pain, and suffering inherent in the
dying process. For these and many other rea-
sons, communicating with dying children is
diffi cult, and the resulting discomfort may
prevent a social worker from exploring the
important needs and concerns of children and
their parents.
END-OF-LIFE CARE
CONCERNS RELATED TO A
DYING CHILD
Social workers are well equipped to help pre-
pare parents and families to meet the emo-
tional needs of a dying child. Parents and
family members are faced with many issues,
including concern that they may not be pro-
viding care as well as the health-care team in
the hospital. They need to know that they are
doing all that they can to care for the dying
child.
It is important that the personal and pro-
fessional challenges of the individual social
worker are addressed in caring for terminally
ill children and their families. When this is
done, social workers are better able to offer
support to other members of the health-care
team. Health-care professionals, especially
physicians, often fi nd it extremely diffi cult to
tell parents that there is no longer any effective
cure-oriented treatment for their child. How-
ever, if parents are supported in discussing
treatment focused on the end of cure with pro-
viders and the need to move to comfort (pallia-
tive) care, most end-of-life care providers may
be better able to communicate more directly
and effectively. The key for the social worker
is to recognize the critical role of encouraging
and supporting parents in expressing their true
feelings, concerns, and goals.
Children are never too young to be told
that they or someone close to them is dying
(Silverman, 1999). Dying children often know
they are dying. Failing to acknowledge death
creates a barrier between the child and the
adults who are caring for her. Sick children
have a common fantasy that they are respon-
sible for their own illnesses; being sick can be
interpreted as punishment. Many children who
choose not to discuss painful feelings may
be trying to protect their parents and siblings
from further emotional pain. In the absence of
honest discussion, silence only reinforces this
and other misconceptions that the child and
his or her siblings create. It isolates the child
and limits the sharing needed for coping with
overwhelmingly diffi cult experiences. Dying
children experience feelings similar to dying
adults: anxiety, fear, loneliness, and depres-
sion as well as hope and love. Children need
to know that they are not responsible for their
illnesses. Sharing information in a way that is
cognitively and developmentally appropriate
is essential.
Dying children of any age, as well as their
siblings, have the capacity to communicate
their concerns clearly. The ways children com-
municate depend on their age and develop-
mental stage. Verbal language must be adapted
to a conceptual level and vocabulary that the
children can understand. Children may express
their fears, worries, or concerns directly, indi-
rectly, or symbolically. They can communicate
in many ways other than direct conversation.
Music, art/drawing, drama/storytelling, and
play are some expressive therapies that can be
used to foster effective communication with
children.
SPIRITUALITY
Facing death often forces individuals to con-
sider spiritual or existential issues that can be
central to end-of-life care. Spirituality can be
a profound resource for coping with the chal-
lenges of all aspects of life and death. Social
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632 Health Social Work: Selected Areas of Practice
workers in end-of-life practice must be sensitive
to these concerns in their patients and be will-
ing to assist with their spiritual explorations.
As defi ned by the Merriam-Webster Dic-
tionary (2004), religion is “the service and
worship of God or the supernatural,” “a com-
mitment or devotion to religious faith or obser-
vance” or a “personal set or institutionalized
system of religious attitudes, beliefs, and prac-
tices.” In contrast, spirituality is defi ned as a
sensitivity or attachment to religious values,
the quality or state of being spiritual. Spiritu-
ality is related to the human spirit as opposed
to material or physical things. Defi nitions of
religion and spirituality can be found in the
literature discussing the integration of spiri-
tuality and mental health practices. Mauritzen
(1988) defi nes spirituality as
the human dimension that transcends the
biological, psychological and social aspects
of living. It is the “agent” for the integra-
tion a person’s identity and integrity. In very
general terms the spiritual dimension is the
“agent” for an individual’s existence as a
person. (pp. 116–117)
Constructing a universal defi nition of spiri-
tuality, however, is diffi cult. It is important to
be aware of the patient’s and family’s spiritual
belief system; awareness and appreciation of
a patient’s spiritual orientation is essential to
end-of-life care. Impending loss and the reality
of death may shake people’s spiritual beliefs
and may leave them feeling angry or hopeless.
For believers and nonbelievers, atheists or ag-
nostics, the need to make sense of impending
death is central to a person’s struggles regard-
ing meaning at the end of life.
Working in end-of-life care also may raise
spiritual issues for the social worker. Witness-
ing the suffering of others or coping with
the stress of working with dying individuals
and their families may challenge the social
worker’s basic religious or spiritual beliefs.
It may require the professional to deal with
countertransference issues related to suffer-
ing and death (Katz & Johnson, 2006). Before
social workers can help with these existential
concerns, they must understand their own
spirituality and religious beliefs and the infl u-
ence of these beliefs on their professional and
personal lives. When patients and caregivers
express religious and spiritual concerns, the
social worker’s role is to listen so that she can
help them fi nd ways to address their needs.
DIVERSITY AND HEALTH
DISPARITIES IN END-OF-LIFE
CARE
All individuals’ life experiences contribute
greatly to the complexity and uniqueness of
the end-of-life issues that we all face. These
experiences, as much as anything, shape our
desires and beliefs about health, illness, death,
and dying. The Diversity Committee of the Last
Acts Coalition (2001) advocates recognition,
acceptance, and support of its recommendations
concerning individuals’ experiences with race;
historical oppression; war and its aftermath;
cultural, religious, and spiritual practices; af-
fectional orientation; discrimination; and pov-
erty. The true meaning of diversity (especially
as it affects the end of life) is as much about
these unique, view-shaping experiences as
about the narrower yet more common concept
that focuses on ethnicity or religion (Last Acts
Coalition, 2001, p. 3). Death and dying among
members of different racial or ethnic groups and
disadvantaged persons can pose tremendous
challenges to social workers. Cultural and eco-
nomic factors play a signifi cant part in health
care, health-care decision making, and end-of-
life experiences. Health care is less accessible
to disadvantaged individuals, including people
of color, immigrants, older individuals, chil-
dren, women, the poor and uninsured, and those
who are in institutions (i.e., nursing homes and
prisons) (Smedley, Stith, & Nelson, 2002).
Because of group differences in health,
the U.S. Congress requested a report from
the IOM. Disparities consistently were found
across disease areas, clinical services, and
clinical settings (Smedley et al., 2002). The
focus of the IOM report was on conscious
and unconscious discrimination or bias and
its effect on health-care delivery. The IOM’s
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End-of-Life Care 633
general recommendation was to increase
awareness of disparities among the general pub-
lic, key stakeholders, and health-care providers.
The report provided specifi c recommendations
for critical areas, including patient education
and empowerment, cross-cultural education in
health professions, legal, regulatory, and policy
interventions, and health system interventions.
Communication between health-care pro-
vider and patient is vitally important to effec-
tive end-of-life care. A patient’s understanding
of his life-limiting illness will affect the course
of his palliative care. Health-care professionals
must be aware of subtle cultural variations in
language, verbal and nonverbal communica-
tion, and expressions of distress (van Ryn &
Burke, 2000). They must be able to compre-
hend the effects of ethnicity and spiritual be-
liefs on the daily lives of patients and families.
Culture infl uences what is considered a health
problem, how symptoms are expressed and dis-
cussed, how health-care information is received,
what type of care should be given, and how
rights and protections are exercised (see Chapter
10 this book). In addition, health-care decision
making is infl uenced by demographic factors,
such as level of education, other socioeconomic
status (SES) factors, geographic region (urban,
rural), and time spent in the United States.
Kleinman (1988) proposed obtaining a pa-
tient’s or caregiver’s explanatory model of ill-
ness at any stage of the disease continuum by
asking a series of questions designed to elicit
their understanding of the situation (p. 42):
• What do you call the problem?
• What do you think caused the problem?
• Why do you think it started when it did?
• What do you think the sickness does? How
does it work? How does it affect your body?
• How severe is the sickness? Will it have a
long or short course?
• What care do you desire? What are the most
important results you hope to get from your
care?
• What are the chief problems the sickness
has caused?
• What do you fear most about the sickness?
The need to provide culturally competent care
has been emphasized in many arenas, that is, to
respect and maintain sensitivity to issues related
to an individual’s culture, race, gender, sexual
orientation, and SES while providing optimal
end-of-life care. In 2001, the National Associa-
tion of Social Workers (NASW) developed Stan-
dards for Cultural Competence in Social Work
Practice. NASW defi nes cultural competence as
the process by which individuals and systems
respond respectfully and effectively to peo-
ple of all cultures, languages, classes, races,
ethnic backgrounds, religions, and other di-
versity factors in a manner that recognizes,
affi rms, and values the worth of individuals,
families, and communities and protects and
preserves the dignity of each. (p. 11)
The standards address these areas: ethics
and values, self-awareness, cross-cultural
knowledge, cross-cultural skills, service de-
livery, empowerment and advocacy, diverse
workforce, professional education, language
diversity, and cross-cultural leadership.
ADVANCE DIRECTIVES
Advance directives are written documents
completed by an individual that specify treat-
ment preferences for health-care decision
making, particularly about end-of-life care and
whether to use life-sustaining treatment. They
provide an avenue for individuals to make
known their wishes about end-of-life treat-
ment. The most common advance directives
are the health-care proxy (durable power of at-
torney for health care) and living will.
The Patient Self-Determination Act has
done much to increase the use and aware-
ness of advance directives. It was signed into
law in November 1990 and became effective
in December 1991 (Federal Register, 1991).
The act is applicable in all 50 states. The law
requires that all facilities receiving Medicare
or Medicaid reimbursements ask newly ad-
mitted patients if they have health-care direc-
tives in place, provide a written explanation of
the state’s law on health-care directives, and
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634 Health Social Work: Selected Areas of Practice
provide an explanation of the hospital’s poli-
cies in enforcing them. Health-care facilities
also are required to record patients’ health-
care directives as part of their medical records.
In addition, those facilities must educate staff
and the community they serve about advance
directives and ensure that patients are not
discriminated against, whether they have an
advance directive or not. Social workers can
initiate direction and leadership in implement-
ing this education.
A durable power of attorney for health
care involves the legal appointment of an in-
dividual to speak for a person should that
person become decisionally incapacitated.
Multiple types of durable power of attorney
are available, covering business, fi nancial, or
health-care decisions. The purpose of legally
appointing a person as a health-care proxy is
to ensure that an individual’s wishes are fol-
lowed in the event she is not able to make her
own decisions. The person appointed as proxy
acts to ensure that health-care providers know
of those wishes and can advocate for their
enforcement. The person named as an indi-
vidual’s health-care proxy should be someone
the individual trusts and someone with whom
she feels comfortable in discussing her wishes.
The person appointed to oversee an individu-
al’s health-care wishes could be a spouse or
partner, relative, or close friend. An individual
serving as a proxy should be aware of state
regulations or variations regarding advance di-
rectives. In addition, that person must be aware
that he or she may have to fi ght to assert the
patient’s wishes in the event of a disagreement
with the health-care team or with other family
members.
A living will is a directive to a physician and
health-care team that states a person’s wishes
about what life-prolonging treatment should
be provided or withheld should he or she lose
the ability to communicate those wishes. Life-
prolonging therapies include mechanical venti-
lation, blood transfusions, dialysis, antibiotics,
and artifi cially provided nutrition and hydra-
tion. A living will should be viewed as a way to
guide a physician to provide medically appro-
priate care in keeping with the patient’s wishes.
Any adult with decision-making capacity
can complete an advance directive. Directives
must be completed by the individual to whom
the directive applies (i.e., a relative cannot
complete an advance directive for the patient
even though he or she may be the health-care
proxy). Advance directives can be rescinded
at any time for any reason. They should be
properly signed and witnessed, but a lawyer
is not required to complete or rescind a valid
advance directive. The patient should retain
copies of the directive and also provide cop-
ies to the designated proxy and to appropri-
ate health-care providers. Advance directives
are used more frequently by White, middle
to upper SES individuals than by individuals
from lower SES or ethnic or racial minori-
ties. Social workers may need to be proactive
in educating disadvantaged persons about the
value of advance directives and help them
with end-of-life care planning. Research
suggests that many ethnic or racial minority
groups in the United States fear being denied
benefi cial treatment at the end of life more
than they fear receiving excessive therapy
and therefore are less likely to complete an
advance directive (Crawley, Marshall, Lo, &
Koenig, 2002).
Social workers should discuss advance di-
rectives with each of their patients. They can
help educate patients and families on the uses
and benefi ts of advance directives and advocate
for their choices. They can help patients com-
plete an appointment of a health-care agent
and a living will; ensure that this information
is recorded in the patient’s medical record; en-
courage the patient to inform the designated
proxy of his wishes; and, if requested, help
the patient discuss his wishes for end-of-life
care with the designated proxy. A Consumer’s
Tool Kit for Health Care Advance Planning
is available for downloading at the American
Bar Association Web site (www.americanbar
.org/groups/law_aging/resources/consumer_s
_toolkit_for_health_care_advance_planning
.html). Advance directives for each state and
information about advance care planning also
are available from the National Hospice and
Palliative Care’s Caring Connections Web
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End-of-Life Care 635
site (www.caringinfo.org/i4a/pages/index.cfm
?pageid=1).
UNDERSTANDING LOSS
Individuals and families facing end-of-life is-
sues experience many kinds of loss besides
impending death, including multiple losses
(outlined next) as the person becomes more ill
and withdrawn from prior life and activities.
Understanding the common, natural responses
to loss can facilitate a social worker’s ability to
prepare patients and families with anticipatory
guidance and help them normalize the possible
and often uncomfortable expressions of grief.
Loss often is thought of in relation to the
death of a signifi cant loved or valued person.
This can include one’s self, spouse or partner,
siblings, children (including through abortion,
miscarriage, or stillbirth), and other relatives.
However, loss also can occur through:
• Separation or divorce
• Temporary or permanent placement in a
nursing home, hospital, hospice facility,
adoptive or foster home, or prison
• Geographic moves due to job relocation or
assignment in the military
• Death of a pet
• Death of a close friend, coworker, business
associate, colleague, or acquaintance
• Deaths of well-known personalities or ce-
lebrities (e.g., President John Kennedy,
Princess Diana)
For the person who is dying, the end of life
also brings the loss of part of the self, which
includes physical, psychological, and social
losses. Physical loss is the loss of body parts
(e.g., amputations) and loss of functioning (e.g.,
lack of mobility, impaired bladder or bowel con-
trol, reduced sexual functioning). Psychological
loss is also relevant for patients at the end of
life and can include the loss of independence,
dignity, self-esteem or self-concept, memory
or mental acuity, and opportunity, goals, hopes,
and dreams. Social loss includes loss of work
or income and loss of social roles (i.e., role of
partner/spouse or parent).
Each loss in a person’s life is experienced
uniquely because it is infl uenced by multiple
factors, that is, characteristics of the indi-
vidual, the nature of the relationship with the
deceased person, how the loss occurred, and
infl uences from the past.
Controversy has surrounded the concept
of “stages” of loss, in part because it implies
a linear movement through a grief process.
More recent thinking discounts the notion that
there is a homogeneous course through which
everyone moves due to grief. Grief is a natural
response to loss. It is not merely sadness or
crying in response to a loss.
Different conceptual frameworks exist to
explain the experience of grief. Rando (1984)
conceptualized grief within three broad cate-
gories: avoidance, confrontation, and reestab-
lishment. Avoidance includes “shock, denial,
disbelief, emotional anesthesia, confusion,
numbness, disorganization, and the intellectu-
alized acceptance of the death.” Confrontation
is a “highly emotional state wherein the grief
is most intense and the psychological reactions
to loss are felt most acutely.” Reestablishment
is the “gradual decline of the grief and marks
the beginning of an emotional and social reen-
try back into the everyday world” (pp. 28–29).
The tasks of the griever are then to:
• Acknowledge, accept, and understand the
reality of the loss.
• Experience the pain of the grief and react
to the separation from that which was lost.
• Adapt to a new way of life.
• Reinvest in a new way of life.
There may be ambivalence about the appro-
priateness of expressing so many emotions and
resistance to revealing those emotions to oth-
ers. Grievers may feel overwhelmed by the in-
tensity of their emotions and exhausted by the
process. They may avoid or repress thoughts,
feelings, or memories associated with the de-
ceased person. They may protest or feel denial
about the death or have feelings of unreality or
depersonalization.
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636 Health Social Work: Selected Areas of Practice
Factors that infl uence how individuals cope
with loss include childhood, adolescence, and
adult experiences of loss and how recently
those losses occurred; successful or unsuccess-
ful resolution of losses; previous mental health
problems (i.e., depression); and any physical
health problems, life crises, or life changes
prior to the current loss. The relationship with
the deceased person also plays a role in coping
with the loss: the relationship (partner/spouse,
child, parent), length of the relationship, role
the deceased person occupied, strength of the
attachment, and degree of dependency.
In addition, it is important to consider how
the loss occurred. The circumstances sur-
rounding the loss, preparation for bereavement
(anticipatory grief), the griever’s perception of
preventability, perception of the deceased per-
son’s fulfi llment in life, and any unfi nished
business that was present in the relationship
with the deceased person all play a role in the
grief process. These factors make grief a very
personal and individual experience.
Grief counseling involves normalizing the
grieving person’s feelings and behavior and
helping the griever identify and express her
feelings, actualize the loss, facilitate her ability
to live without the deceased person and to re-
engage with life, and provide continuing sup-
port throughout the process. Social workers
should be alert to symptoms of complicated or
troubled grief while providing counseling to
help patients and families normalize their of-
ten-diffi cult responses to grief. Uncomplicated
grief is a grief reaction that, although painful,
moves the survivor closer to acceptance of the
loss and enhances the ability to carry on with
life. In contrast, complicated grief is a grief re-
action that includes diffi culty acknowledging
the death, intrusive thoughts about and yearn-
ing for the deceased person, and feelings of
futility and purposelessness about the future.
ANTICIPATORY MOURNING
Grieving that begins before a death occurs is
known as anticipatory mourning; the physi-
cal and emotional reactions involved are often
the same as those experienced in normal
grieving. Rando (2000) defi ned anticipatory
mourning as
The phenomenon encompassing seven ge-
neric operations grief and mourning, cop-
ing, interaction, psychosocial reorganization,
planning, balancing confl icting demands,
and facilitating an appropriate death that,
within a context of adaptational demands
caused by the experiences of loss and trauma,
is stimulated in response to the awareness of
life-threatening or terminal illness in oneself
or a signifi cant other and the recognition of
associated losses in the past, present, and
future. (p. 51)
Involving the whole family, as defi ned by the
patient, in his care and treatment can decrease
anxiety and allow for a sense of control, par-
ticipation, and support. Meeting with the entire
family as a group and establishing a personal
relationship with each family member (if pos-
sible) is crucial. Within their ability, social
workers can help families to express their antic-
ipatory grief appropriately and develop or main-
tain open communication. Equally important is
advising the family about the practical realities
of illness and the death. Dying patients may be
very concerned about these practical matters
and do not want to burden their loved ones. So-
cial workers can help patients and families plan
for future care needs as well as preferences for
burial and associated fi nancial arrangements.
These advance directives help people who are
at the end of life feel some control and ensure
that their wishes are honored.
COMPLICATED GRIEF
It is sometimes diffi cult to differentiate un-
complicated from complicated grief. Worden
(2008) outlined four complicated grief reac-
tions:
1. Chronic grief is grief that is prolonged,
is excessive in duration, and never comes
to a satisfactory conclusion.
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End-of-Life Care 637
2. Delayed grief is emotion that has been
“inhibited, suppressed, or postponed.” A
subsequent loss may elicit an exaggerated
reaction because the bereaved is grieving
for two losses.
3. Exaggerated grief occurs when feelings
of fear, hopelessness, depression, or other
symptoms become so excessive that they
interfere with the daily existence of the be-
reaved.
4. Masked grief includes symptoms and be-
haviors experienced by a person who does
not recognize the fact that these are related
to a loss.
One social work task is to recognize symp-
toms or responses that may indicate compli-
cated grief, including an excessive degree of
guilt, remorse, self-blame, a delay of up to
six months in beginning the grief process, a
prolonged grief process, hostility against the
deceased person’s caregivers, avoidance of the
loss through overactivity, avoidance of emo-
tional expression, severe depression or insom-
nia, or self-destructive behaviors (Worden,
2008).
DISENFRANCHISED GRIEF
Doka (2002) defi ned disenfranchised grief as
the grief experienced in connection with a loss
that is not socially acknowledged, publicly
shared, or supported through usual rituals. Ei-
ther the signifi cance of the loss is not recog-
nized or the relationship between the deceased
person and the bereaved survivor is not socially
sanctioned—the person suffering the loss is
given little or no opportunity to mourn pub-
licly. It is experienced when the relationship is
not recognized (lovers, ex-spouses, same-sex
partners, close friends), when the loss itself is
not recognized (stillbirth, miscarriage, abor-
tion, adoption, pet loss), or when the griever is
not recognized (very young, very old, with de-
velopmental disabilities). The manner of death
itself can be disenfranchising (murder, suicide,
acquired immunodefi ciency syndrome). When
such deaths are treated as less than signifi cant
losses, the process of grieving becomes more
diffi cult. Social workers who become close to
patients who die also can be disenfranchised
mourners. Their own grief experiences should
be acknowledged and dealt with. Often social
workers in the same area form support groups
or hold brief ceremonies to recognize all of
their patients who have died in a period of
time.
SOCIAL WORK IN END-OF-
LIFE CARE
Reese and Raymer (2004) provided evidence
that social work involvement in hospice opera-
tions correlates signifi cantly with reduced pa-
tient care costs. Their survey about social work
involvement impacting hospice outcomes in-
cluded social workers and hospice directors
in 66 randomly selected hospices across the
United States who completed questionnaires
and reviewed 330 patient charts. The survey
clearly indicated consistent benefi ts of social
work involvement in all aspects of hospice
care, to the patients and families as well as to
the hospice administration itself. The quali-
fi cations of the social work staff and hospice
staffi ng and budget policies were also impor-
tant variables. Better outcomes were correlated
with more experienced social workers, higher
social work salaries, and higher social work
staffi ng ratios. The authors recommended that
social work participation take place from in-
take and assessment through continuing care
to prevent crises, reduce the severity of an-
ticipated problems, promote effective pain
and symptom management, provide expert
psychosocial interventions, and maximize the
opportunities for patients and families to main-
tain a good quality of life at the end of life.
The Open Society Institute’s Project on
Death in America (PDIA) began the Social
Work Leadership Development Awards Pro-
gram to identify and support outstanding so-
cial work faculty and clinicians committed
to improving the care of dying and bereaved
people. The program promoted innovative
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638 Health Social Work: Selected Areas of Practice
research and training projects that refl ected
collaborations between schools of social work
and practice sites that would advance the on-
going development of social work practice, ed-
ucation, and training in the care of the dying.
These awards promoted the visibility and pres-
tige of social workers committed to end-of-life
care and enhanced their effectiveness as aca-
demic leaders, role models, and mentors for
future generations of social workers. Between
2000 and 2004, 42 social workers were given
the award. (For a list of PDIA social workers,
please visit www.soros.org/resources/articles
_publications/publications/pdia_20040101
/pdia_20040101 .)
The fi rst Social Work Summit on End-of-
Life and Palliative Care took place in March
2002. Social work and end-of-life care experts
met for a three-day summit to design a social
work agenda to improve care for the dying and
their families. The agenda called for organized
professional leadership, standards of practice,
and increased preparation at all levels of social
work education. Leaders from national social
work organizations, social work schools, hos-
pices, hospitals, government agencies, and
end-of-life care advocacy groups attended the
meeting, representing more than 30 organiza-
tions. The summit was cosponsored by Last
Acts, the Duke Institute on Care at the End of
Life, and the Soros Foundation’s Project on
Death in America. The second Social Work
Summit on End-of-Life and Palliative Care
was held in June 2005; participants to this day
continue their work through various projects
and through many organizations.
As an outgrowth of the Social Work
Summits, the National Association of So-
cial Workers (NASW) began an initiative in
2003 to increase social workers’ awareness of
end-of-life issues; to create and advocate for
more education and training opportunities in
the fi eld; and to promote the value of social
work in palliative care, hospice care, and other
end-of-life practice areas. NASW received a
grant from the Project on Death in America to
develop practice standards on palliative care,
end-of-life care, and grief work to provide
social workers with guidance for ethical and
effective practice (NASW, 2004) and to develop
both a comprehensive policy statement on and
a Web-based course on the standards with pre-
and posttesting to document knowledge gains.
This initiative complements other NASW pol-
icy statements on client self-determination in
end-of-life decisions, health care, hospice care,
long-term care, and managed care.
Recent signifi cant efforts have been initi-
ated to provide more formal transdisciplinary
palliative care education to social workers and
other professionals. The most notable of these
was the Advocating for Clinical Excellence
(ACE) project, a fi ve-year National Cancer In-
stitute–funded project held at the City of Hope
National Medical Center, Duarte, California,
and directed by principal investigator Shirley
Otis-Green and coinvestigators Betty Ferrell
and Marcia Grant. The objective of the ACE
project was to improve the delivery of pal-
liative care through an intensive advocacy and
leadership training program for 300 competi-
tively selected psycho-oncology professionals
(i.e., social workers, psychologists, spiritual
care professionals). The program sought to
address the defi cits in the delivery of quality
palliative care and to provide the participants
with strategies to empower them to become
more effective role models and advocates for
enhanced palliative, end-of-life, and bereave-
ment care in their institutions and disciplines.
More information about the program is avail-
able at www.cityofhope.org/education/health
-professional-education/nursing-education
/ace-project/Pages/default.aspx
COMPASSION FATIGUE
Social workers and other health-care profes-
sionals who work in end-of-life care experi-
ence a great deal of trauma of illness and
death. Those who work in end-of-life care can
experience short- and long-term effects that
can be profoundly disruptive, both profession-
ally and personally. Social workers develop
and nurture a therapeutic alliance with patients
and families; in that process, they can be seri-
ously affected as a result of listening to stories
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http://www.cityofhope.org/education/health-professional-education/nursing-education/ace-project/Pages/default.aspx
http://www.soros.org/resources/articles_publications/publications/pdia_20040101/pdia_20040101
http://www.soros.org/resources/articles_publications/publications/pdia_20040101/pdia_20040101
http://www.cityofhope.org/education/health-professional-education/nursing-education/ace-project/Pages/default.aspx
http://www.cityofhope.org/education/health-professional-education/nursing-education/ace-project/Pages/default.aspx
End-of-Life Care 639
of suffering and pain. Compassion fatigue,
also referred to as secondary trauma, is the
natural, predictable, treatable, and preventable
stress resulting from helping a traumatized or
suffering person (Figley, 1994).
Some professionals may be more vulnerable
than others to compassion fatigue due to, for
example, multiple losses, unresolved personal
trauma, or insuffi cient recovery time. Social
workers also grieve and need support. Each
social worker has her own professional style
and ways of coping that may mask symptoms
and interfere with coping. All social workers
need effective self-care strategies and stress
management techniques to treat the symptoms
of compassion fatigue. Strategies to prevent or
cope with compassion fatigue include super-
vision, personal psychotherapy, grief support
for staff, stress management, and maintaining
a balance between personal and professional
responsibilities (Katz & Johnson, 2006).
CONCLUSION
Many issues in end-of-life care are beyond
the scope of this chapter: for example, pain
management in palliative care and ethical is-
sues, such as medical futility, withholding or
withdrawing medical therapy, assisted suicide,
euthanasia, and terminal sedation (for more
details, see Chapters 3 and 22). It is diffi cult
for social workers and health-care profession-
als to use their considerable skills in situations
that ultimately will not change the fi nal out-
come of a life-limiting illness. Experience tells
us that as patients and families approach the
end of life, social workers often feel they no
longer have a role to play. They may want to
withdraw from the patient and family. One of
the hardest tasks is to be emotionally present
during moments when further curative medi-
cal treatment is not possible. Often all patients
and families need is to have a social worker
be a physical and emotional witness to their
suffering. Accepting the limits of what we are
able to do and sitting with a patient and family
who are trying to cope with the end of life can
be an important and meaningful experience,
for the patient and family as well as the social
worker. Cultivating the ability to be present in
the moment with patients and families and be
a witness to their personal struggles at the end
of life is one of the most diffi cult but important
and rewarding skills a social worker can pos-
sess. Providing psychosocial support, teaching
coping and communication skills, providing
information and advocacy, collaborating with
colleagues, and taking a leadership role within
the transdisciplinary health-care team can
equip a social worker to make a signifi cant
difference in the experiences of the end of life
for patients and families.
SUGGESTED LEARNING
EXERCISES
Learning Exercise 23.1
Maria is a Puerto Rican woman who was diag-
nosed with breast cancer at age 35. During the
three and a half years that she lived after diag-
nosis, she received a variety of services from a
cancer support organization, including weekly
individual supportive counseling with a social
worker and group therapy. At the time of her
diagnosis, Maria had been married to Joseph
for 13 years. They experienced fertility prob-
lems because of her cancer treatment. Maria
reported to her social worker that this was a
major source of confl ict in the relationship and
that she did not feel emotionally supported by
Joseph.
Maria began working in a bank at age 17
and by age 30 had attained a middle manage-
ment position. For two years after diagnosis,
she worked full time while receiving chemo-
therapy every three weeks, refusing to take
time off for her cancer treatments. She reported
signifi cant depression, anger, and apprehen-
sion about recurrence. Within six months of
diagnosis, she had begun to reexperience pre-
vious losses, most signifi cantly the loss of her
mother to breast cancer when Maria was 10
years of age. She reported consistent faith that
the chemotherapy would cure her mother and
hopeless betrayal by God when her mother
JWBT514_ch23.indd 639JWBT514_ch23.indd 639 9/21/11 7:46 PM9/21/11 7:46 PM
640 Health Social Work: Selected Areas of Practice
died. Her oncology social worker suggested a
referral to a psychiatrist for Maria’s worsening
depression, which Maria declined, saying that
she did not wish to take antidepressant medi-
cation.
Ultimately, Maria agreed to a stem cell
transplant and left her job after a year of dis-
ability leave. She agreed to see a psychiatrist
for a one-time consultation yet continued to
decline antidepressant medication. The social
worker reported that she became increasingly
fatigued, depressed, and agoraphobic (e.g., she
stopped going out alone secondary to panic at-
tacks). Her cancer recurred after one year and
she died 18 months later.
Answer these questions based on your in-
terpretation of Maria’s case:
1. How do you think that Maria defi ned good
quality of life?
2. What do you see as the social worker’s role
in providing support to clients like Maria
who would help them to achieve good
quality of life as well as good quality of
death?
3. Arthur Kleinman (1988) offers an
explanatory model of illness that fosters a
sensitive approach to helping clients like
Maria. How might you have used his ap-
proach to elicit information from Maria to
maximize your ability to help her? Recall
that Kleinman suggested using these
questions:
• What do you call the problem?
• What do you think caused the problem?
• Why do you think it started when it did?
• What do you think the sickness does?
How does it work? How does it affect
your body?
• How severe is the sickness? Will it have
a long or short course?
• What care do you desire? What are the
most important results you hope to get
from your care?
• What are the chief problems the sickness
has caused?
• What do you fear most about the sickness?
4. What do you consider to be the most press-
ing medical, psychosocial, and spiritual
concerns that Maria faced? How would you
prioritize these concerns in devising your
approach to treatment?
5. How would you go about developing a plan
of care for Maria that takes into account
her cultural and spiritual perspectives and
emphasizes her defi nition of good quality
of life?
SUGGESTED RESOURCES
Web Sites
Aging with Dignity (Five Wishes)—www
.agingwithdignity.org
The Aging with Dignity Web site con-
tains the Five Wishes, a document that is
an advance directive addressing the dy-
ing patient’s holistic needs. It has been
translated into a number of languages.
American Pain Foundation—www
.painfoundation.org
The APF is a nonprofi t information,
advocacy, and support organization serv-
ing all people affected by pain. Its mis-
sion is to improve the quality of life of
those affected by pain by providing prac-
tical information, raising public aware-
ness and understanding of pain, and
advocating against barriers to effective
treatment.
Association for Death Education and Coun-
seling—www.adec.org
ADEC is dedicated to improving the
quality of death education; promoting
the development and interchange of re-
lated theory and research; and providing
support, stimulation, and encouragement
to its members and those studying and
working in death-related fi elds.
Cancer Care, Inc.—www.cancercare.org
Cancer Care is the largest national so-
cial service agency providing free emo-
tional support, information, and practical
assistance to people with cancer, their
loved ones, and caregivers. Its Web site
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http://www.adec.org
http://www.cancercare.org
http://www.painfoundation.org
http://www.painfoundation.org
End-of-Life Care 641
features a special section on end-of-life
and bereavement concerns and includes
educational information and resources
for patients, caregivers, and profession-
als.
Center to Advance Palliative Care—www
.capc.org
CAPC is a resource to hospitals and
other health-care settings interested in
developing palliative care programs.
End-of-Life/Palliative Education Resource
Center—www.eperc.mcw.edu
This center shares educational re-
source material among the community of
health professional educators involved in
palliative care education.
Finding Our Way: Living with Dying in
America— http://webpages.scu.edu/ftp
/fow/
The Finding Our Way national public
education initiative focuses on bringing
practical information to the American
public regarding end of life and its sur-
rounding issues.
Growth House—www.growthhouse.org
Growth House is an international
gateway to resources for life-threatening
illness and end-of-life care. Its primary
mission is to improve the quality of end-
of-life care through public education and
professional collaboration.
Hospice Foundation of America—www
.hospicefoundation.org
HFA provides leadership in the de-
velopment and application of hospice
and its philosophy of care with the goal
of enhancing the U.S. health-care sys-
tem and the role of hospice within it. It
provides end-of-life information for pa-
tients, families, and professionals.
National Hospice and Palliative Care Orga-
nization—www.nhpco.org
This is the largest nonprofi t mem-
bership organization representing hos-
pice and palliative care programs and
professionals in the United States. The
organization is committed to improving
end-of-life care and expanding access to
hospice care with the goal of profoundly
enhancing quality of life for people dy-
ing in America and their loved ones.
Social Work Network in Palliative and End-
of-Life Care Listserv—www.stoppain.org
/for_professionals/content/information
/listserv.asp
Hosted by the Beth Israel Department
of Pain and Palliative Care, this listserv
provides an opportunity for social work-
ers in such fi elds as oncology, geriatrics,
human immunodefi ciency virus (HIV),
hospice, nephrology, and pediatrics to
network and discuss multidimensional
aspects of palliative and end-of-life care.
Suggested Books
Berzoff, J., & Silverman, P. R. (2004). Liv-
ing with dying: A handbook for end-of-
life healthcare practitioners. New York,
NY: Columbia University Press.
Bowlby, J. (1980). Attachment and loss:
Loss, sadness and depression. New
York, NY: Basic Books.
Doka, K. J. (Ed.). (2006). Pain manage-
ment at the end of life: Bridging the gap
between knowledge & practice. Wash-
ington, DC: Hospice Foundation of
America.
Doka, K. J., & Davidson, J. (Eds.). (1998).
Living with grief: Who we are, how we
grieve. Philadelphia, PA: Taylor & Francis.
Fadiman, A. (1997). The spirit catches you
and you fall down: A Hmong child, her
American doctors, and the collision of
two cultures. New York, NY: Farrar,
Straus, and Giroux.
Field, M. J., & Behrman, R. (2003). When
children die: Improving palliative and
end-of-life care for children and their
families. Washington, DC: National
Academies Press.
Hilden, J. M., Tobin, D. R., & Lindsey, K.
(2002). Shelter from the storm: Caring
for a child with a life-threatening condi-
tion. Philadelphia, PA: Perseus.
Rando, T. A. (1991). How to go on living
when someone you love dies. New York,
NY: Bantam Books.
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http://www.eperc.mcw.edu
http://webpages.scu.edu/ftp/fow/
http://www.growthhouse.org
http://www.stoppain.org/for_professionals/content/information/listserv.asp
http://www.capc.org
http://www.capc.org
http://webpages.scu.edu/ftp/fow/
http://www.hospicefoundation.org
http://www.hospicefoundation.org
http://www.stoppain.org/for_professionals/content/information/listserv.asp
http://www.stoppain.org/for_professionals/content/information/listserv.asp
642 Health Social Work: Selected Areas of Practice
REFERENCES
Byock, I. (1998). Dying well: Peace and possibilities at
the end of life. New York, NY: Riverhead Books.
Crawley, L. M., Marshall, P. A., Lo, B., & Koenig, B. A.
(2002). Strategies for culturally effective end-of-life
care. Annals of Internal Medicine, 136(9), 673–679.
Doka, K. J. (2002). Disenfranchised grief: New directions,
challenges, and strategies for practice. Champaign,
IL: Research Press.
Federal Register. (1991). Federal patient self-determination
act 1990. Retrieved from http://euthanasia.procon.org
/sourcefi les/patient_selfdetermination_act
Field, M. J., & Cassel, C. K. (1997). Approaching Death:
Improving Care at the End of Life. Washington, D.C.:
National Academy Press.
Figley, C. (1994). Compassion fatigue: Coping with
secondary traumatic stress disorder in those who treat
the traumatized. New York, NY: Brunner/Mazel.
Katz, R. S., & Johnson, T. A. (2006). When professionals
weep: Emotional and countertransference responses in
end-of-life care. New York, NY: Routledge.
Kleinman, A. (1988). The illness narratives: Suffering,
healing and the human condition. New York, NY:
Basic Books.
Last Acts Coalition. (2001). Statement on diversity and
end-of-life care. Washington, DC: Author.
Mauritzen, J. (1988). Pastoral care for the dying and
bereaved. Death Studies, 12(2), 111–122.
Merriam-Webster. (2004). The Merriam-Webster English
dictionary. Springfi eld, MA: Author.
National Association of Social Workers. (2001). Standards
for cultural competence in social work practice.
Retrieved from www.socialworkers.org/practice
/standards/NASWCulturalStandards
National Association of Social Workers. (2004). Standards
for social work practice in palliative and end-of-life
care. Retrieved from www.socialworkers.org/practice
/bereavement/standards/default.asp
National Center for Health Statistics. (2010). Deaths:
Final data for 2007. National Vital Statistics Reports,
58(19). Retrieved from www.cdc.gov/NCHS/data/nvsr
/nvsr58/nvsr58_19
National Hospice and Palliative Care Organization. (2010).
What is hospice and palliative care? Retrieved from
www.nhpco.org/i4a/pages/index.cfm?pageid4648
Project on Death in America. (2001). Report of activities:
January 1998–December 2000. New York, NY: Open
Society Institute.
Rando, T. A. (1984). Grief, dying, and death: Clinical
interventions for caregivers. Champaign, IL: Research
Press.
Rando, T. A. (Ed.). (2000). Clinical dimensions of
anticipatory mourning. Champaign, IL: Research
Press.
Reese, D. J., & Raymer, M. (2004). Relationship between
social work involvement and hospice outcomes:
Results of the national hospice social work survey.
Social Work, 49(3), 415–422.
Saunders, C. (1999). Origins: International perspectives,
then and now. Hospice Journal, 14(3/4), 1–7.
Silverman, P. R. (1999). Never too young to know: Death in
children’s lives. New York, NY: Oxford University Press.
Smedley, B. D., Stith, A. Y., & Nelson, A. R. (Eds.).
(2002). Unequal treatment: Confronting racial and
ethnic disparities in health care. Washington, DC:
Institute of Medicine.
van Ryn, M., & Burke, J. (2000). The effect of patient race
and socio-economic status on physicians’ perceptions of
patients. Social Science and Medicine, 50(6), 813–828.
Worden, J. W. (2008). Grief counseling and grief therapy:
A handbook for the mental health practitioner
(4th ed.). New York, NY: Springer.
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palliative care: Report of a WHO expert committee
(WHO Technical Report Series, No 804). Geneva,
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Palliative care. Geneva, Switzerland: Author.
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http://euthanasia.procon.org
http://www.socialworkers.org/practice/standards/NASWCulturalStandards
http://www.socialworkers.org/practice/bereavement/standards/default.asp
http://www.cdc.gov/NCHS/data/nvsr/nvsr58/nvsr58_19
http://www.nhpco.org/i4a/pages/index.cfm?pageid4648
http://www.socialworkers.org/practice/standards/NASWCulturalStandards
http://www.socialworkers.org/practice/bereavement/standards/default.asp
http://www.cdc.gov/NCHS/data/nvsr/nvsr58/nvsr58_19
643
Afterword
CANDYCE S. BERGER
Much has been written about the changes af-
fecting the health-care arena. We are living
in times that have been described as chaotic,
tumultuous, and unstable (Berger, Robbins,
Lewis, Mizrahi, & Fleit, 2003; Dombovy,
2002; Fairfi eld, Hunter, Mechanic, & Flem-
ming, 1997; Ross, 1993). Many factors have
contributed to this situation. The growing em-
phasis on fi scal restraint in health care, the
technological explosion, ethical challenges,
spiritual concerns, and consumer expectations
all have had a signifi cant effect on health-care
service delivery. Although social work practice
has been infl uenced by these changes, there is
no evidence that we are being differentially
impacted, experiencing a greater proportion of
the negative consequences, such as downsiz-
ing and decentralization (Berger et al., 2003).
Chapter 1 traces the 100-year history of social
work involvement in health, and Chapter 2 ex-
plores the factors that have shaped the evolv-
ing roles of social workers. These chapters
provide a context in which we can examine
the environment for health social work today.
We struggle more than ever with the challenge
of defi ning social work roles in a health-care
environment that responds to fi scal priorities,
demands by payers for accountability, and
consumerism. Today many health social work
programs are harnessing their creativity and
skills to expand social work roles and secure
social work’s position both in the present and
for the future (Mizrahi & Berger, 2005).
Much of our unease is in response to a
health-care system that is facing runaway costs
without commensurate improvement in health
outcomes. The United States has ranked poorly
in international comparisons for all measures
of health outcomes in spite of our constant
ranking of number one for health-care costs.
Health care currently consumes almost 16% of
the U.S. gross domestic product, while health
care in other industrialized countries accounts
for 9% to 10% of their GDP. To explain this
difference, some may argue that the tax burden
of countries with universal health care, such as
Sweden, Norway, and Denmark, accounts for
their lower spending on health care. However,
these countries consistently rank high in posi-
tive health outcomes while reporting the per-
centage of their GDP associated with health as
ranging between 8% and 9% (http://csis.org).
In addition, 50 million Americans are without
health insurance, and many more struggle with
intermittent or poor health-care coverage. The
recession of 2009–2010 exacerbated this prob-
lem as many individuals fell into the ranks of
the unemployed and lost their employer-based
health coverage. According to the Centers for
Disease Control and Prevention (CDC), 58.5
million Americans were uninsured at some
point during 2009, and 38.5 million had been
uninsured for more than one year prior to that
date. The CDC estimated that about 25 mil-
lion Americans are underinsured and fi nd it
diffi cult to afford the out-of-pocket medical
expenses created by the gap in what their in-
surance will cover. Chapter 5 critically exam-
ines the fi nancial, regulatory, and governance
issues that shape health-care policy and the
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http://csis.org
644 Afterword
delivery of health-care services. Without radi-
cal changes to the nation’s health-care policy
and systems of care, we will continue to see
health-care systems struggle to maintain fi scal
viability through a variety of cost-containment
strategies, including hospital closures, merg-
ers, restructuring, and resizing initiatives and
the push to community-based practice. All of
these strategies will infl uence the staffi ng ratios
in medical centers, service delivery, and social
work roles (Berger et al., 2003; Globerman,
Davies, & Walsh, 1996; Ross, 1993). Conse-
quently, social workers in health care will con-
tinue to rely on clinical practice skills, but they
also will need to expand their practice reper-
toires to incorporate community-based clinical
interventions, macro-level practice skills that
are essential to autonomous practice, and re-
search techniques that enable them to use data
to support their practices. A primary function
of social workers will be to assist clients to
overcome the barriers that inhibit access to
high-quality health care services (Burg et al.,
2010). Skills in advocacy will become even
more critical to challenge policies and regula-
tions that are driven by fi scal priorities that can
compromise the quality of patient care.
MOVE TO THE COMMUNITY
While these changes promote feelings of fear
and insecurity, new opportunities have been
and will continue to emerge for social work. In
the 20th century, acute care dominated health-
care practice, moving the hospital to the cen-
tral position within the health-care system. As
we look to the 21st century, our emphasis is
shifting to a new priority—the management
of chronicity. This will promote expansion of
community-based systems of care, where pre-
vention strategies will assume a higher level
of importance. Many scholars in the fi eld of
health social work believe, as in the past, that
the future of the profession lies in our abil-
ity to work within the community, develop-
ing successful linkages across systems of
care (Berkman, 1996; Davidson, 1990; Rehr,
Rosenberg, & Blumenfi eld, 1998).
This book traces the changing roles for
health-care social workers, balancing acute
care with the movement to community-based
models of practice. This shift to the commu-
nity will require a greater understanding of
interventions aimed at health promotion and
disease prevention (Berkman, 1996; David-
son, 1990) with a greater awareness of the
critical role of individual, family, and commu-
nity behavior in shaping health status. Chapter
7 provides the theoretical foundations needed
to understand health behavior so that effective,
community-based strategies can be designed
and implemented. Chapters devoted to com-
munity-based practice and public health aug-
ment this learning by examining the spectrum
of issues shaping social work practice at the
community level. These chapters are rich with
theory, skills, and practical applications that
will promote the development and expansion
of social work community-based practice.
EXPANDED CLINICAL BASE
As we move from managing acute episodes
of care to the management of chronicity, our
focus will shift to the identifi cation of at-risk
populations whose health status is compro-
mised by poor health behaviors, environmen-
tal challenges, and genetic predispositions.
Systems of care for older individuals will be
of paramount importance (Berkman, Gardner,
Zodikoff, & Harootyan, 2006; Oliver &
DeCoster, 2006). Another signifi cant popula-
tion at risk that will require more attention by
health-care professionals is the growing num-
ber of immigrants who are entering our coun-
try through both legal and clandestine means.
As the United States moves to tighten access
along its borders, immigrants are being forced
to turn to illegal means of gaining entry, often
referred to as smuggling or traffi cking. Victims
of human traffi cking face a variety of health
risks associated with their pretraffi cking con-
dition (e.g., preexisting health condition as-
sociated with violence, poor access to health
care, etc.), health risks associated with their
journey (e.g., poor and dangerous traveling
JWBT514_Afterword.indd 644JWBT514_Afterword.indd 644 9/21/11 7:41 PM9/21/11 7:41 PM
Afterword 645
conditions, physical and sexual violence), and
risks associated with their arrival in the United
States (e.g., exploitation, poor working condi-
tions, exposure to unfamiliar infectious dis-
eases). Health-care providers, particularly at
acute care access points, are likely to be immi-
grants’ fi rst point of contact. Effectively caring
for this population will require assessment and
intervention skills that take into account the
dynamics of smuggling and traffi cking as well
as promote cultural sensitivity, an awareness of
alternative methods of health care indigenous
to the client’s country of origin, and resources
to assist clients who may be fl eeing exploita-
tion (Berger, 2010; Gushulak & MacPherson,
2000; Lusk & Lucas, 2009; Zimmerman, Hos-
sain et al., 2006). The importance of taking pa-
tients’ culture into account is reviewed in each
chapter of this book and is examined in detail
in Chapter 10.
Effective and effi cient clinical interven-
tions at the acute level will continue to be a
priority for social work practitioners, but they
will need to incorporate expanded clinical
skills in such areas as brief assessments, short-
term treatment, population-oriented care, case
management, health promotion, and disease
prevention. This expertise requires increased
understanding of theories of health behavior
and the infl uence of risk factors, such as so-
cioeconomic status, the environment, mental
health, substance abuse, ethnicity, culture,
spirituality, family systems, and sexuality, all
of which are effectively addressed in this book.
Social work practice will be shaped by a grow-
ing emphasis on managing larger numbers of
patients as their roles span the continuum of
health care. This will call for social work prac-
titioners who draw from a large repertoire of
knowledge and skills and are able to broadly
traverse larger systems devoted to service de-
livery. Parts II and III capture many of these
issues, demonstrating the critical impact of
biopsychosocial factors on health behavior and
health outcomes. What kind of practitioner
will be needed to face the challenges ahead?
There is little debate about the need for clin-
ical skills in the future, but debate still rages
as to the most effective approach: generalist
versus specialist. A generalist approach uti-
lizes fundamental skills of social work that are
transferable across settings and populations
served. Generalist approaches may be more
effective with community-based models of
care or in acute, general medical, surgical, or
pediatric settings, where a broader understand-
ing of illnesses, psychosocial implications of
illness, and systems of care may be required.
A generalist approach is particularly relevant
to community-based practice, where a variety
of skill sets are needed to effectively navigate
a complex system of providers, payers, and
clients (Ross, 1993). This does not mean that
specialists will not also be needed.
Specialist models emerged in large, spe-
cialty hospitals where social workers were
recognized and advanced professionally based
on their expertise in a defi ned area of practice
(e.g., disease or population expertise). To be
successful, social workers needed to under-
stand the details of specifi c diagnoses and their
biopsychosocial ramifi cations for patients and
families; they needed specifi c knowledge re-
garding the populations most likely to be af-
fected and the resources and systems of care
to be mobilized to address issues and problems
related to the illness (Ross, 1993).
An interview with recognized health-care
leaders (“How Are Hospitals Financing the
Future?,” 2004) discusses the importance of
health-care systems delineating and promot-
ing their unique competencies—they need to
carve out their market niche. It was suggested
that health-care systems should identify three
to four service lines (e.g., cancer, cardiology,
trauma) that will be priorities (i.e., Centers of
Excellence) for the health-care system rather
than equally distributing limited resources
across all services. For social workers to be
members of the health-care teams in these
specialty centers, they will require specialized
knowledge and skills to effectively and effi –
ciently provide psychosocial services so that
they can become an essential member of the
team. Specialty content often is handled indi-
vidually through scholarly articles or books
that address a specifi c disease or population.
Although a comprehensive analysis of all
JWBT514_Afterword.indd 645JWBT514_Afterword.indd 645 9/21/11 7:41 PM9/21/11 7:41 PM
646 Afterword
potential areas of specialization is not realis-
tic within an overview book, the authors have
done an outstanding job weaving in specialty
content on key areas where a social worker is
likely to be involved (see Part III).
AUTONOMOUS
PRACTITIONER
As social workers broaden their knowledge
and skills, they will need to be as adept
at macro-level interventions as they are at
clinical practice (Berger & Ai, 2000). Many
health-care systems are moving away from
silo organizational structures (i.e., centralized
departments) to programmatic structures. So-
cial workers may fi nd themselves practicing in
more autonomous, multidisciplinary settings
where the leader may not be a social worker.
Furthermore, as more seamless, comprehen-
sive systems of care emerge, practitioners will
need to rely on skills that span both micro and
macro practice in order to navigate system
complexity effectively.
These changes will require social workers to
have greater knowledge of fi scal arrangements
and processes and increased ability to assess or-
ganizational environments, as addressed in Part
I. This knowledge needs to be combined with
increased skills in decision making, confl ict
management, planning, community organizing,
marketing, and program management. Political
acumen will be essential to survival in an envi-
ronment that is politically volatile due to con-
stant change and limited access to health-care
resources (e.g., money, staff, technology).
EMBRACING RESEARCH AS
A PRACTICE NECESSITY
As health care expands over the continuum of
care, practitioners will need to draw on skills
in research techniques (Zlotnik & Galambos,
2004). Four factors shape the need to embrace
research as an essential element of practice.
First, population interventions are dependent
on population-based research: epidemiology
(Berger & Ai, 2000; Berkman, 1996). This
type of research will be essential to identify-
ing populations at risk and to understanding
the health-care needs of diverse populations
by maintaining a cross-cultural perspective
in all research endeavors. Second, the ability
to assess and intervene effectively in health-
care organizations and community systems
will be dependent on accurate and timely data.
Third, social work practitioners and educators
in health cannot continue to ignore the man-
dates for evidence-based practice. Many of the
health disciplines have already embraced this
philosophy, and social work will need to move
quickly in this direction to maintain or expand
its role. Social work historically has relied on
documenting the process of its interventions
rather than the outcome. Social work will not
survive as a provider unless it can harness
available empirical information to design and
support practice models and teach students
the skills of evidence-based decision mak-
ing. Doing this will require the introduction
of reliable and valid tools to do assessments
and to measure outcomes (Berger & Ai, 2000;
Berkman, 1996). Finally, empirical research is
an essential ingredient to effective advocacy.
Although no single chapter in this book is de-
voted to research approaches, this content is
woven throughout the book, emphasizing its
importance in relation to specifi c settings, ill-
nesses, and populations.
ROLE OF ADVOCACY
Advocacy is another theme that permeates
throughout this book, acknowledging its im-
portance as a priority for social workers in
health care. Social workers must act to effect
changes in policies and regulations as fi scal
priorities threaten to compromise quality of
care. We must embrace social work values,
priorities, and ethics, recognizing when fi scal
priorities compromise these professional te-
nets of practice. As health-care professionals,
we must join forces with those most affected
by the changes—patients and families—and
develop coalitions with other health-care
JWBT514_Afterword.indd 646JWBT514_Afterword.indd 646 9/21/11 7:41 PM9/21/11 7:41 PM
Afterword 647
disciplines and advocacy groups to mobilize
changes in health-related policies.
In conclusion, health care can be described
as a tumultuous and often chaotic setting
where change is the constant. Preparing so-
cial workers for this new environment borrows
from the old as well as the new. To be suc-
cessful in the future of health care, our practice
must be grounded in theory and data. We need
to be strategic, placing increased emphasis
on documenting the results of our interven-
tions. We need to free our creative energy to
critically examine what we do and design and
implement innovative strategies that span the
continuum of health care. We need to be will-
ing and able to take calculated risks, ventur-
ing into new arenas of care and incorporating
new roles. According to Cowles and Lefcow-
itz (1995), “If we don’t actively work to create
the future, then we leave the future solely to
chance” (p. 14). We must build a reputation
as creative and innovative practitioners and
assume responsibility for shaping our profes-
sional destiny as health-care practitioners.
The authors of this Handbook have put to-
gether an excellent resource to prepare social
workers for the contemporary and future chal-
lenges of social work practice in health care.
We need to be aware of our history, drawing
strength from our longevity as practitioners in
health care. Our historical emphasis on com-
munity-based interventions combined with our
strengths perspective and sensitivity to cultural
competency positions us to succeed in this
changing health-care environment. We draw on
a strong base of values and ethics that will sup-
port our professional goals and directions as we
face new challenges and ethical dilemmas.
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649
About the Editors
Sarah Gehlert, PhD, is the E. Desmond Lee
Professor in the George Warren Brown School
of Social Work at Washington University, where
she serves on the Faculty Advisory Council of
the Institute for Public Health and the Execu-
tive Committee of the Institute of Clinical and
Translational Sciences. Dr. Gehlert is the core
leader of the Education and Training Core
of the NCI-funded Program for the Elimi-
nation of Cancer Disparities at Washington
University, and co-principal investigator of
the NCI-funded Transdisciplinary Research
in Energetics and Cancer Center. Dr. Gehlert
directed the University of Chicago’s Mater-
nal and Child Health Training Program from
1992 to 1998 and was principal investigator
on a NIMH-funded community-based study
of rural and urban women’s health and mental
health from 1997 to 2001. She was the princi-
pal investigator and director of the University
of Chicago’s NIH-funded Center for Inter-
disciplinary Health Disparities Research and
project leader of one of its four interdependent
research projects from 2003 to 2010. She is
a member of the Board of Scientifi c Counsel-
ors of the National Human Genome Research
Institute at the National Institutes of Health.
Dr. Gehlert is past president of the Society
of Social Work and Research. She is a con-
sulting editor of Social Work Research and is
on the editorial boards of Research on Social
Work Practice, Health & Social Work, and
Social Service Research. In 2010, Dr. Gehlert
was named a fellow of the American Acad-
emy of Social Work and Social Welfare.
Dr. Gehlert worked for eight years as a health
social worker.
Teri Browne, PhD, is the Health Social Work
Services Research Assistant Professor at the
University of South Carolina College of Social
Work. Dr. Browne is a member of the National
Institute of Diabetes and Digestive and Kidney
Diseases’ Dialysis Center Working Group of
the National Institutes of Health, the National
Kidney Foundation of South Carolina Medical
Advisory Board, and the Southeastern Kidney
Council Medical Review Board. She is the past
national chairperson of the Executive Com-
mittee of the Council of Nephrology Social
Workers of the National Kidney Foundation.
Dr. Browne serves on the editorial boards for
the American Society of Nephrology Kidney
News, Chronic Kidney Disease Update, Ameri-
can Society of Nephrology Kidney News, and
Journal of Nephrology Social Work. She is also
a reviewer for several journals including So-
cial Work in Health Care, American Journal
of Kidney Diseases, and American Journal of
Public Health. From 1998 to 2008, Dr. Browne
was a nephrology social worker, working with
hemodialysis patients and their families regard-
ing assessment, counseling, crisis intervention,
and case management.
About the Editors.indd 649About the Editors.indd 649 9/21/11 8:07 PM9/21/11 8:07 PM
About the Editors.indd 650About the Editors.indd 650 9/21/11 8:07 PM9/21/11 8:07 PM
651
Author Index
Aabo, K., 308
Aaron, B., 180
Aaron, S., 435, 436
Aaronson, N. K., 226
Aasland, O. G., 454,
455
Aass, N., 356
Abbott, A. A., 426, 450
Abelson, J. M., 172
Aben, I., 179
Abetz, L., 474
Abraham, H. D., 437
Abrams, D. B., 244
Abramson, J., 243, 245
Abramson, L. Y., 127
Abreu, M., 255
Acheson, D., 158
Ackerman, S., 189
Adair, M., 205
Adam, O., 308
Adamek, M. E., 399,
415
Adams, H., 508, 510
Adams, J., 506
Adams, P., 509
Adams, W. L., 453
Aday, L. A., 133–134
Adelsward, V., 580
Ademuyiwa, F., 571
Adler, A., 412
Adler, C., 306
Adler, M., 130
Adler, N. E., 174
Adrie, C., 608
Adzize, T., 472
Affl eck, G., 615
Agolino, M., 412
Agostini, J. V., 394
Agrawal, A., 566
Aguilera, D., 227
Ahlner, J., 198
Ahmed, K., 450, 456
Ahn, D. K., 172
Ai, A., 646
Aizer, A., 109
Ajzen, I., 128–130
Akçiçek, F., 361
Aker, J., 307
Akinbami, L. J., 374
Albarracín, D., 130
Albrecht, G., 222
Albrecht, S., 546
Albuquerque, K., 200
Alderfer, M., 377
Aldridge, A. M., 437
Alexander, G. R., 153
Alexopoulos, G. S., 204,
399
Algina, J., 177
Ali, S., 544
Alin, T., 361
Alinsky, S., 484
Allan, J. D., 570
Allard, S. L., 573
Allen, A. J., III, 252
Allen, C., 300
Allen, J. O., 275
Allen, J. P., 455
Alleyne, S., 472, 473
Allgšwer, A., 175
Allison, D. B., 546
Allison, M. A., 529
Altekruse, S., 498, 500,
503, 517
Alter, J., 449
Alter, M. R., 193
Alterman, A. I., 441,
442
Altica, F. L., 534
Altilio, T., 514, 597,
602, 604, 608, 619
Alveo, G., 32
Alvin, B. L., 128
Amaro, H., 434, 449
Amason, P., 248
Amato, D., 473
Amato, M. P., 613
Amberg, S., 305
Ambuel, B., 608
Amendola, J., 619
Aminou, R., 500, 503,
517, 598
Amir, S., 540
Ammar, R., 21
Ammassari, A., 536,
547
Amundsen, A., 454
Anandarajah, G., 279
Ancker, J. S., 572
Andersen, A. U., 194
Andersen, M., 194
Andersen, R., 131, 133,
134, 533
Andersen, R. M., 101,
133, 134, 291, 294
Anderson, A., 150
Anderson, B. J., 534–
535, 538, 539, 541
Anderson, B. L., 356
Anderson, C. M., 153
Anderson, J., 83–84
Anderson, J. W., 292,
301, 302, 304, 305,
307, 309
Anderson, K. O., 616
Anderson, L. A., 250
Anderson, R., 544
Anderson, R. J., 536,
544
Anderson, R. N., 500,
533
Anderson, S. L., 153
Anderson, T., 222
Andes, S., 152
Anding, J. D., 536
Andrade, J., 506, 512
Andresen, E., 72
Andrews, J. E., 573
Andrews, W. C., 348
Andrulis, D. P., 406–408
Andrus, M. R., 150
Andrykowski, M. A.,
203
Aneshensel, C. S., 154
Angeles, P., 43, 44, 46
Angell, B., 164
Angen, M., 505
Angold, A., 174
Angst, F., 187, 197, 198
Angst, J., 187, 197, 198
Anionwu, E., 226
Annes, J. P., 571
Anton, R. F., 429
Antoni, M. H., 350, 534
Antoniou, A., 507
Antonovsky, A., 331
Antonucci, T. C., 402
Aoki, Y., 248
Aoun, S., 608
Apodaca, T. R., 445
Appel, S., 292–294,
297, 300
Author Index.indd 651Author Index.indd 651 9/21/11 7:56 PM9/21/11 7:56 PM
652 Author Index
Appleby, L., 197
Apter, A., 197
Aragaki, A., 508
Aragon, C., 403
Aranda, S., 506, 511,
598, 608
Arango, P., 65
Ardern-Jones, A., 571
Arias, E., 533
Arko, C., 474
Armenian, H. K., 545
Armitage, C. J., 130
Armstrong, K., 571
Arnd-Caddigan, M., 619
Arndt, L. A., 187
Arnold, R., 599
Arnold, V., 193, 194,
196–198, 205
Arnsten, J. H., 536, 547
Arora, N. K., 242
Aroskar, M. A., 405
Arthur, T., 483
Asch, A., 223, 228
Ashbaugh, C., 476
Ashley, P., 474
Assaf, A. R., 529
Astin, J. A., 291, 294,
298, 299, 311
Atabay, G., 361
Atalah, E., 152
Atchison, K. A., 402, 405
Atchley, R., 509
Atkins, D. C., 448
Atkins, J. N., 297
Atkinson, J. H., R., 608
Atkinson, P. A., 577
Aubuchon, M., 354
Auer, C., 506
Aupont, O., 548
Ausems, M. G., 575
Auslander, G., 472
Auslander, G. K., 472,
473, 480, 481
Auslander, W., 535, 541
Auslander, W. F., 21,
534, 535, 538, 539,
541
Austin, J. L., 449
Austin, L., 159
Avard, D., 580
Avula, D., 448, 450,
456, 457
Azari, R., 542
Azari, R. S., 615
Azoulay, E., 608
Azzarello, G., 307
Baandrup, U., 308
Babcock, E. N., 605
Babor, T. F., 450, 455,
456
Babyak, M. A., 306,
543–545
Bach, J. R., 226
Bagner, D. M., 175, 176
Bailey, D., 83, 84
Baim, M., 306
Baird, M., 175, 203,
318, 337
Baird, P., 598
Baker, D. I., 394
Baker, D. W., 408
Baker, R., 48, 531
Baker, R. W., 183–186
Baker, S. A., 130
Baker, S. P., 438
Bakos, A. D., 578
Baldessarini, R. J., 198
Baldwin, L., 298, 299
Ballenger, J. C., 203–
205
Ballesteros, M. F., 438
Balrow-Stewart, K., 571
Bambauer, K. Z., 548
Bamberger, J., 448
Banaschweski, T., 565
Banks, S., 449
Banner, R. O., xvii
Barakat, L., 377
Barbaccia, J. C., 23, 245
Barbanell, L. D., 427
Barbato, F., 307
Barbui, C., 173, 547
Bard, R. S., 444, 448
Barefoot, J. C., 155
Barker, A. T., 308
Barker, D., 153
Barkwell, D. P., 598
Barlow, D. H., 353
Barnes, L., 277
Barnes, P. M., 292, 294
Barnhart, L., 509
Barr, M. S., 253
Barrett-Connor, E., 529
Barrington, K., 479
Barrow, S. M., 190
Barry, K. L., 453
Barth, J., 544, 546
Barth, K., 472
Bartlett, H. M., 10, 12, 15
Bartlett, M. K., 249
Barton, P. L., 547
Barzansky, B., 295
Baser, R. S., 192
Baskin, M., 276
Basnett, I., 219
Bass, E., 479
Bass, E. B., 473, 474
Bassett, C. A., 308
Basson, R., 354
Bateman, A., 197
Bateman, N., 22
Batsis, J. A., 151
Battaglia, F., 431
Battit, G. E., 249
Bauchner, H., 434
Bauer, A., 609
Bauer, C. R., 306
Bauer, L., 292
Baugher, M., 198
Baum, A., 180, 599
Baumeister, R. F., 268–
270, 273
Bawdon, R. E., 166
Beach, M. C., 247
Beach, S. R., 598
Beasley, D., 200
Beauchamp, T., 609
Beautrais, A., 197
Beautrais, A. L., 192
Becerra, R. M., 294,
295, 302–304
Beck, A. T., 197
Beck, K., 130
Beck, S. L., 203
Becker, A. B., 159, 252
Becker, B. N., 471
Becker, E., 337
Becker, F., 410
Becker, K., 565
Becker, M., 129
Becker, M. H., 128, 249,
535, 536
Becker, N., 410
Becker, Y. T., 471
Beckman, H. B., 108,
246
Beckmann, M. W., 507
Becvar, D. S., 304, 308
Beder, J., 480, 481, 504
Beecroft, E., 144, 147
Beekman, A. T., 546, 605
Beer, J., 473
Beer, M. C., 68
Beers, M. H., 500, 502
Behrman, R. E., 433,
434
Beilby, J., 546
Beinfi eld, H., 300, 310
Beiske, A. G., 613
Beitchman, J., 193, 194,
196–198
Belden, M., 434
Bell, C., 405
Bell, J., 331
Bellinger, D. C., 153
Belmont, M. F., 348
Belmonte, P. L., 558
Benador, D., 573
Bencivengo, M., 449
Benedict, R., 374
Benjamins, M. R., 273
Benne, K. D., 245
Benner, L., 190
Bennett, C., 537
Bennett, H. L., 307
Bennett, P., 200
Bennett, P. H., 151, 531
Bennett, R., 577
Bensing, J., 535
Benson, H., 306, 548,
605
Benson, J., 112
Benson, J. A., 434
Benson, R. S., 193, 194,
196–198
Benson, S., 205
Ben-Zur, H., 21
Berbaum, M., 68
Beresford, T. P., 456
Berg, A. O., 570
Berg, K., 70, 90
Berger, C., 643
Berger, C. S., 643–645
Bergman, J., 128
Berkman, B., 25, 409,
410, 416, 509, 510,
516, 644, 646
Berkman, C. S., 348
Berkman, L., 275, 401,
509
Berkman, L. F., 64, 548
Author Index.indd 652Author Index.indd 652 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 653
Berkwits, M., 500, 502
Berlin, J. A., 247, 530
Berlin, S., 199
Berlin, S. B., 602
Berman, H., 355
Bernabei, R., 615
Bernard, A., 128
Bernard, S. M., 153
Bernet, W., 193, 194,
196–198, 205
Bernhard, J. D., 307
Bernstein, D. A., 549
Berry, H., 84
Bertakis, K. D., 542
Bertell, B. L., 307
Bertenthal, D., 180
Bertolote, J., 197
Berube, M., 226
Berzoff, J., 482
Besley, D. R., 532
Bettes, B. A., 127
Bettleheim, B., 223
Beutler, E., 571
Bhaskaran, K., 532
Bianchi, T. L., 357
Biank, N., 508, 511
Bichenbach, J., 221
Bickley, H., 197
Bien, T. H., 457
Biener, L., 151
Bierer, M. F., 190
Biesecker, B. B., 507, 575
Bigelow, G., 438, 616
Bikson, K., 24
Billings, J. H., 308
Bimbi, D. S., 358
Bing, E., 177
Bingham, S. A., 545
Birchall, A., 305
Birmaher, B., 198
Bishop, K. K., 65
Bishop, M., 506, 534
Bisits, A., 152
Bjelajac, P., 449
Black, P. K., 353
Black, P. N., 576, 582
Black, R. B., 557
Black, S. A., 531
Blacker, S., 517, 618
Blackhall, L. J., 599
Blakeney, N., 276
Blampied, N. M., 444,
448, 457
Bland, S. D., 529
Blaneaves, J. L., 576
Blarney, C., 305
Blazer, D. G., 547
Blendon, R. J., 112
Bloch, S., 598
Block, K. I., 308
Blom, K., 205
Bloom, B., 292
Bloom, B. S., 291, 294,
295, 311
Blount, A., 318
Blow, F. C., 456
Blue-Howells, J., 24
Blum, D., 504, 619
Blum, R., 599, 610, 615,
616
Blumberg, S. L., 359
Blume, A. W., 446
Blumenfi eld, S., 644
Blumenthal, C., 571
Blumenthal, J., 548
Blumenthal, J. A., 306,
543–546
Blumenthal, M., 309,
311
Blythe, B. J., 15, 125
Bodenheimer, B., 297,
299
Bodenheimer, C., 357
Bodenheimer, T., 110,
111
Bodin, M. B., 305
Boehm, S., 398
Boelk, A., 506
Bogardus, S. T., 394
Bogatz, S., 483, 488
Boggs, S. R., 177
Bohlmeijer, E., 200
Bohnert, A. S. B., 435
Boland, R. J., 166, 167,
187
Boland-Prom, K., 54
Boldt, A. M., 382
Bolen, J. C., 529
Boles, M., 250
Boley-Cruz, T., 150
Boling, P. A., 410
Bolmsjo, I., 509
Bolte, S., 350, 351
Bommer, J., 473, 477
Bonander, E., 409, 410
Bonar, L. K., 544
Bonder, B., 514
Bone, L. R., 253
Bonelli, R. M., 361
Bonger, B., 398
Bonham, V. L., 565,
610, 615, 616
Bonner, T., 49
Bono, G., 275
Bonsall, R., 153
Boogaerts, A., 507, 575
Boone, T., 353
Borasio, G. D., 280
Borden, W., 440
Borduin, C. M., 448
Borgbjerg, F. M., 613
Borgen, D. N., 353
Borges, G., 193
Borins, M., 299
Borkovec, T. D., 549
Borman, P. D., 180
Bors, P., 150
Bortz, W. M., 402
Boss, P., 227, 321, 323,
512
Boszormenyi-Nagy, I.,
327
Bottorff, L. G., 577
Boufassa, F., 532
Bouley, T. A., 579
Boult, C., 411
Bourjolly, J. N., 76
Bourque, L. B., 252
Bovbjerg, D. H., 307,
575, 605
Bowen, K., 84
Bowen, M., 327
Bowman, B. A., 531
Bowman, P. J., 173,
190
Boyle, M., 348
Bozzette, S., 533
Brach, C., 406–408
Bracht, N., 14
Bracken, M. B., 434
Brackett, J., 535
Braddock, D., 220
Bradley, L. A., 603
Brady, D., 474
Brady, K. T., 438
Bragg-Gresham, J. L.,
470, 473, 476, 477
Braithwaite, D., 572
Brand, R. J., 308
Brangman, S. A., 407,
408
Brashler, R., 229
Braun, M., 506
Bray, J., 450, 456
Brazy, P. C., 471
Breakey, W. R., 190
Breen, N., xv, 244
Breitbart, W., 615
Breitbart, W. S., 594
Brekke, J. S., 90
Brekke, L., 151
Brendstrup, E., 305
Brenna, R. T., 152
Brennan, T. A., 190
Brent, D. A., 198
Brent, E. E., 405
Brent, R. S., 405
Bresnahan, M. J., 264
Brestan, E. V., 177
Brewster, K., 571
Brichetto, G., 613
Bridge, J. A., 192
Bridle, C., 446
Briggs, J., 190
Briggs, X. S., 154
Brignoli, O., 546
Brinckmann, J., 309,
311
Brintzenhofeszoc,
K., 505, 514, 517
Britt, E., 444, 448,
457
Brocato, J., 447
Broder, D. S., 112
Brodie, M., 112
Brodsky, M., 616
Brody, S., 361
Brogen, M. S., 11
Bromet, E., 179, 180
Bromet, E. J., 193
Bronfenbrenner, U., 70,
167
Bronstein, L., 34
Brookmeyer, R., 545
Brooks, P., 307
Brooks-Gunn, J., 154
Broome, M. E., 604
Brower, K. J., 456
Brown, C., 273
Brown, E. R., 291, 294
Brown, G. K., 197
Brown, H., 293, 296
Author Index.indd 653Author Index.indd 653 9/21/11 7:56 PM9/21/11 7:56 PM
654 Author Index
Brown, J. B., 239, 249,
250
Brown, L. D., 112
Brown, L. M., 201
Brown, L. S., 175
Brown, M., 500
Brown, R. L., 454, 455
Brown, R. T., 375
Brown, S. A., 201
Brown, S. E., 308
Brown, T. N., 128
Brown, V., 449
Browne, T., 472, 474,
481, 488
Browne, W., 305
Brownell, C., 444, 448
Bruce, M. L., 198, 399,
401
Bruder, K., 488
Brundage, J. F., 545
Brunner, E., 71
Brunner, R., 508
Bruss, K., 607
Brymer, M., 204
Bubb, J., 535, 541, 543
Buchanan, D., 146, 158
Buchanan, R. G., 453, 454
Buchanan, R. W., 546
Buchs, A., 480
Buchsbaum, D. G., 453,
454
Buckle, S., 472, 473
Buckley, K. A., 77
Buka, S. L., 152
Bukovy, G., 355
Bull, J., 598
Bullard, R. D., 87
Bultz, B. D., 505
Burack, J., 507, 575
Burchell, C. M., 181
Burchett, B., 547
Burg, M., 548
Burg, M. A., 514, 644
Burger, H., 354
Burgess, D. J., 17, 247,
248
Burgess, E. D., 472, 473
Burke, B. L., 444, 448
Burke, J., 262, 546, 633
Burke, J. G., 72
Burke, W., 579
Burkitt, D. P., 308
Burleson, J. A., 474
Burlingham, B., 448
Burnam, A., 177
Burney, R., 307
Burns, C., 150
Burns, E., 305
Burns, J., 197
Burrows-Hudson, S., 472
Burt, K., 361
Bussey-Jones, J., 571
Büssing, A., 279
Butler, C. C., 201
Butow, P. N., 187, 201
Buttar, A. B., 396
Buxton, J. A., 435
Byng-Hall, J., 327
Byock, I., 630
Byrd-Holt, D., 528
Byrnes, M. E., 613
Bzdek, V. M., 305
Cabness, J., 480
Cabot, E. D., 7
Cabot, J. E., 7
Cabot, R. C., 8, 9
Cadiz, S., 449
Cagle, J. G., 350, 351
Cagney, K. A., 473, 474
Cait, C. A., 482
Calder, K., 619
Caldwell, C. H., 192
Caldwell, D. S., 615
Calhan, J., 415
Calkins, D. R., 291–295,
298
Callahan, C. M., 396
Callahan, E. J., 542
Callahan, M. B., 477,
481, 482, 485, 488
Callis, J. R. G., 152
Calvin, R., 172
Camacho, T., 154
Camarota, S. A., 16, 239
Cameron, C., 506
Cameron, R. P., 183
Campbell, A. L., 196
Campbell, A. N. C., 449
Campbell, B., 275
Campbell, C. I., 441
Campbell, D. G., 176
Campbell, M. J., 250
Campbell, M. K., 276
Campbell, S., 405
Campbell, T., 318, 337
Campbell, T. L., 175, 203
Campion, E. W., 297,
311
Campo, J. V., 192
Camsari, T., 361
Canaday, D. J., 308
Canda, E. R., 277,
281–283
Cannon, I. M., 3, 5–7, 9,
11, 12, 14, 15, 17
Cantor, N., 572
Cao, D., 449
Caplan, A., 405
Cappelleri, J. C., 546
Capps, R., 109
Capstick, C., 449
Carbine, N. E., 507
Cardinal, G., 580
Carlier, I. V. E., 205
Carlson, C. R., 203
Carlson, L., 505
Carlton, T. O., 33
Carlton-LaNey, I., 171
Carney, R. M., 174, 536,
544, 548
Carr, D., 318, 337
Carr, J., 529
Carr, J. E., 603, 604
Carroll, K. M., 442, 444
Carroll, M., 73, 74
Carroll, M. D., 374
Carse, A., 48
Carter, B., 327
Carter, J., 504, 505, 512,
513, 516
Carver, C. S., 350
Casale, A. J., 344
Casciato, C. J., 444,
448
Case, D. O., 573
Casey, D. E., Jr., 278
Cash, S. J., 192
Cashin, S., 158
Casillas, J., 508, 510
Caspi, A., 585
Cassel, C. K., 629
Cassell, E. J., 598
Cassileth, B. R., 293,
296, 297, 299, 307
Cassiman, J. J., 507, 575
Castellon, S. A., 454
Castelton, D., 54
Castro, C. A., 180
Catellier, D., 548
Cathers, T., 355
Cavdar, C., 361
Caye, J., 83–84
Cecil-Karb, R., 74
Cedereke, M., 197
Centor, R. M., 453, 454
Cervoni, N., 563
Cha, C. B., 193
Champagne, F. A., 563
Chan, D., 176
Chan, K., 167, 545
Chan, S. K. K., 68
Chan, S. S. C., 68
Chandler, L. P., 546
Chandler, P. J., 150
Chandra, R. K., 308
Chaney, E. F., 176
Chang, C. F., 481
Chang, G., 443
Chang, M., 172, 449
Chao, M. T., 293
Chapin, C., 145
Chapman, C. C., 297
Chappel, J., 441
Chappell, L. T., 309
Charles, W., 516
Charlton, J., 231
Charnow, J. A., 470
Chasco, E. E., 68
Chassin, M. R., 101
Chauncey, S., 409, 410
Cheah, P., 318
Chedid, A., 431
Chee, E., 612
Chee, W., 599
Chen, J. T., 72, 77
Chen, S., 474
Chen, T., 431
Chen, W. Y., 354, 362
Chen, Y. S., 471, 474,
480
Cherpitel, C. J., 455
Chertow, G. M., 472
Chesler, M., 507–509,
517
Chesney, M., 534, 537
Cheung, F., 170
Chevret, S., 608
Chi, F. W., 441
Chi, I., 68
Chiasson, R. E., 432
Childress, J., 609
Author Index.indd 654Author Index.indd 654 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 655
Chin, M. H., 68, 264
Chin, S.-Y., 407
Ching, A. Y., 354
Chiu, Y. W., 472
Choi, M., 414
Chopra, D., 301
Chou, S. P., 432
Chow, J., 153
Christ, G., 503–505,
515, 518, 619
Christ, G. H., 348
Christakis, N. A., 91,
240
Christophersen, E. R.,
176
Chroniak, C., 200
Chrousos, G. P., 152
Chu, K., 500
Ciarcia, J., 472
Ciccarone, D., 448
Cicirelli, V., 508
Ciechanowski, P., 546,
547
Ciechanowski, P. S.,
544, 546, 547
Cipriani, A., 547
Cipriano-Steffens, T.
M., 90
Claiborne, N., 15, 16
Clark, D. O., 396
Clark, E., 509, 517
Clark, E. J., 504
Clark, H. W., 448, 450,
456, 457
Clark, P., 92
Clarke, A., 571, 572
Clarke-Steffen, L., 375
Claro, E., 435
Classen, C., 510, 511
Clatts, M., 435, 436
Clawson, C. L., 345
Clay, D. L., 375
Clayton, P. J., 187, 198
Clearman, R., 226
Cleeland, C. S., 599,
610, 615–616
Clegg, L. X., 69
Clement, S., 266
Clements-Nolle, K.,
193
Cleveland, M. A., 405
Clifford, P., 604
Cloninger, C. R., 277
Cloostermans, T., 507,
575
Clouse, R. E., 536, 544
Coates, A. S., 187, 201
Cobb, S., 165
Cocco, E., 613
Cochrane, G., 508
Cohen, E., 509
Cohen, G., 362
Cohen, J. A., 205
Cohen, K., 304
Cohen, L. M., 474, 482
Cohen, L. R., 449
Cohen, M. H., 546
Cohen, S., 166
Cohen, S. M., 534
Cohn, J., 247
Cokkindes, V., 500
Colagiovanni, J., 548
Colasanto, R., 488
Colditz, G. A., 354, 362
Cole, C., 539
Cole, G. P., 65
Coleman, E., 413
Coleman, E. A., 411–
412
Coleman, R. E., 306
Collett, D., 305
Collier, J. D., 616
Collins, B. H., 471
Collins, C., 172, 431,
506
Collins, F., 565
Collins, J. J., 613
Collins, J. W., 73, 152
Collins, P., 546
Colman, L. K., 297
Colombo, B., 613
Combrinck-Graham,
L, 329
Compton, P., 438, 616
Compton, S. N., 174
Compton, W. M., 438,
448, 450, 456, 457
Condron, M. C., 353
Conijm, B., 134
Conn, V. S., 201
Conner, M., 130
Connolly, J. N., 345
Connor, D., 504
Connor, S. R., 618
Conrad, A., 44
Conrad, A. P., 618
Conteh, L., 249
Conway, B., 533
Conway, K., 408
Conwell, Y., 399
Conzen, S., 90, 244
Conzen, S. D., 563
Cook, A., 115
Cook, J. A., 546
Cook, J. M., 449
Cook, S. C., 68
Cooke, R., 130
Cooley, W. C., 117
Cooney, N. L., 450
Cooper, H., 72
Cooper, L., 412
Cooper, L. A., 17, 246,
247, 253
Cooper, M., 23
Copeland, L. J., 356
Copeland, V. C., 64, 76,
125
Corbet, B., 233
Corbie-Smith, G., 571
Cordes, J. A., 187, 188,
190, 191, 194, 199
Cordova, M. J., 203
Cordova, P., 190
Corley, M. C., 305
Cornelius, D. S., 14, 15
Cornelius, L. J., 429
Cornish, P., 608
Corr, C. A., 381
Correll, C. U., 566
Cosper, W., 150
Costello, E. J., 174
Cotch, M. F., 433, 434
Cote, J. K., 534
Cotter, L., 148
Cotti, M., 410
Cotting, D. I., 180
Cottrell, R., 128
Coughlin, J. F., 401
Coulehan, J. L., 252
Coulton, C., 15
Coulton, C. J., 153
Coulton, C. K., 154
Counsell, S. R., 396
Cowan, C. B., 578
Cowan, M. J., 548
Coward, R. T., 240
Cowie, C. C., 528
Cowles, L. A., 33, 409–
411, 415, 647
Cox, S. A., 548
Cox, W. M., 444
Cox-Hayley, D., 615
Coyle, C. T., 275
Crabbe, J. C., 566
Craft-Morgan, J., 547
Craig, A. R., 226
Craig, I. W., 585
Craig, J., 54
Craigie, F. C., 608
Crane, R., 337
Cranston-Cuebas, M.
A., 353
Crawley, L. M., 634
Crawley, L. V., 599
Creed, F. H., 148
Creten, D. A., 542
Crew, J. E., 414
Crist, J. D., 414
Croft-Jeffreys, C., 247
Croghan, T. W., 546,
547
Cronkite, R. C., 68
Crook, T., 405
Croom, E. M., 311
Cropley, T. G., 307
Cross, J. T., Jr., 278
Crothers, D., 301
Crouse, R. E., 536, 544
Crum, R. M., 545
Crusan, C., 505
Cruz, I., 472, 473
Crystal, S., 533
Csikai, E., 45, 517, 619
Cuffe, M. S., 473
Cuijpers, P., 200
Culliton, P. D., 294
Cullum, J., 505
Culpeper, L., 181, 188,
199
Cummings, C., 307
Cummings, S., 571
Cummings, S. R., 399,
409, 410
Cunningham, K., 305
Cunningham, L. L. C.,
203
Cunningham, M., 385
Cunningham, P. B., 448
Cunningham, W., 533
Curbow, B., 505, 514
Curhan, G. C., 480
Curlin, F. A., 264
Author Index.indd 655Author Index.indd 655 9/21/11 7:56 PM9/21/11 7:56 PM
656 Author Index
Currier, D., 197
Curry, M., 546
Curry, S. J., 68
Curt, G., 292
Curtin, L. R., 374
Curtis, J. R., 608
Curtiss, E. K., 548
Cusack, K. J., 449
Cutler, L. J., 402
Cutting, G. R., 575
Cyprien, S., 109
Dacouris, N., 478
Dahlin, C., 598
Dahlin, C. M., 597, 608
Dahme, B., 605
Dai, D., 70
Dakof, G. A., 448
Dale, D., 509
Daleo, G., 613
D’Allessio, A. C., 563
Dalmida, S. G., 267
Dalton, J., 305
Daly, B. P., 375
D’Ambrosio, L. A., 401
Damcott, C. M., 564
Danaei, G., 151
Dancy, B., 150
Dancyger, C., 580
Danda, C. E., 535
Daneman, D., 536, 544
Daniels, A., 409, 410
Danis, F. S., 24
Danis, M., 618
Dannenberg, A. L., 545
Danoff-Burg, S., 506
Danziger, S., 173, 190
Dar, K. J., 437
Darmon, M., 608
Darnell, J., 109
Darnell, J. S., 118
Darrow, W. W., 361
Darwin, C., 8, 564
Datta, P., 411
D’Augelli, A. R., 355
Daum, G., 454
D’Aunno, T., 449
Davey, S. G., 200
David, A., 247
David, D., 307, 406, 605
David, R. J., 152
Davidhizar, R., 514
Davidoff, A. J., 115
Davidson, A. J., 547
Davidson, J. R., 204,
205
Davidson, K., 644
Davidson, K. W., 547
Davidson, P., 133
Davidson, P. L., 101
Davidson, R. T., 203,
204
Davies, J., 152
Davies, J. M., 34, 644
Davies, M., 176, 433
Davies, M. J., 544
Davies, S., 351
Davis, D., 535, 543
Davis, D. E., 284
Davis, D. R., 426
Davis, J., 405
Davis, K., 110, 111
Davis, L. A., 248
Davis, M. W., 603, 604
Davis, P., 198
Davis, R., 502
Davis, R. B., 292–294,
297, 300
Davison, B. J., 251
Dawson, D. A., 429, 432
Deakins, S. A., 175
deBeurs, E., 615
Debusk, R. F., 360, 361
DeCambra, H., xvii
Decker, M. R., 68
Deckro, J. P., 306
DeCock, K. M., 533
DeCoster, V. A., 644
Decruyenaere, M., 507,
575
Dedert, E. A., 200
Deeg, D. J., 615
Deeks, S. G., 534
Degenholtz, H. D., 405
Degner, L. F., 251, 599
DeGood, D., 305
DeGraw, C., 109
de Groot, M., 536, 544
de Groot, M. K., 536,
544
De Guire, M. J., 539
de Haes, H. C., 248
DeJong, G., 219
De Jonge, K. E., 410
de la Chapelle, A., 577
De La Fuente, J. R., 455
Delaney, E. A., 306
Delbanco, T., 21, 34
Delbanco, T. L., 291–
295, 298
de Leon, E. M., 472
de Leon, M. J., 405
Dell Clark, C., 375
DeLoney, E. H., 275
De Longis, P., 536, 547
Del Rio, N., 515
Demas, P., 617
Demas, P. A., 536, 547
DeMoss, C., 599
Demyttenaere, K., 507,
575
DeNavas-Walt, C., 103
Denayer, L., 507
Dennerstein, L., 354
Denning, P., 446, 447
Dent, C., 150
Dent, C. W., 444, 448
DeOreo, P. B., 473, 477,
480
de Ridder, D., 535
de Rijke, J. M., 613
Derogatis, L., 505, 514
Deroo, L., 444
De Simone, L. L., 615
De Smet, P. A., 310
Desnick, R. J., 575
Desonier, M., 504, 505
Deveau, C., 618
Devenyi, R. G., 544
Devilee, P., 580
Devine, E. C., 602
Devins, G. M., 472,
473
Devlin, J., 608
DeVries, H., 134
Dewar, A., 130
Dewey, M., 474
Dhooper, S., 25, 27
Diaz, V. A., 531
Dibble, S. L., 300
Dick, D. M., 565
Dickens, C. M., 148
Dickens, J. D., 151
Dickersin, K., 507
Dickey, P., 68
Dickman, G., 361, 362
Dickson, H. G., 226
Dickson-Fuhrman, E.,
454
DiClemente, C. C., 134,
201, 442, 444–446
Diderot, D., 42
Diez Roux, A., 72, 150
Dignam, J., 501
Dijkstra, A., 134
Dilorio, C., 267
DiMatteo, M. R., 175,
187, 200, 534, 537,
546, 547
Dimeff, L. A., 443, 448
DiNitto, D. M., 430,
431, 436, 440, 449
Disbrow, E. A., 307
Diwan, S., 404, 407,
515
Dixon, J., 158
Dixon, R. A., 308
Dobrof, J., 15, 472, 474,
476
Doctor, M., 356, 357
Dodds, T. A., 7, 8
Doescher, M. P., 95
Doherty, W., 318, 319,
337, 338
Dohrenwend, B. P., 173
Doka, K. J., 637
Dolgoff, R., 42, 43,
49, 53
Dolinko, A., 474, 476
Dombovy, M. L., 643
Domcheck, S., 571
Domcheck, S. M., 507
Donaghy, M., 549
Donaldson, G. W., 307,
603, 604
Donaldson, M. S., 409
Dong, A., 128
Donner, A., 249
D’Onofrio, B. M., 318
Donovan, D. M., 159,
442, 444, 450
Doody, R. S., 308
Doong, H., 308
Dormuth, C., 198
Douglas, J., 148
Douglas, K, C., 408
Dow, W. H., 174
Dozier-Hall, D., 503–
505
Drach, L., 502
Drachman, R. H., 128
Drash, A., 544
Author Index.indd 656Author Index.indd 656 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 657
Draucker, C. B., 352
Dreitzer, D., 534
Driscoll, D. A., 575
D’Souza, R., 267
Dubay, L., 109, 115
Duder, S., 35
Dudley, E., 354
Dudokde Wit, A. C.,
580
DuHamel, K. N., 307
Dulcan, M. K., 176
Dundon, J., 571
Dunkel, I., 613
Dunlop, R., 615
Dunmore, E., 127
Dunn, C., 305, 444
Dunn, J. R., 71
Dunn, S. M., 187, 201
Dunne, J. E., 205
DuPre, A., 252
Dupre, J., 565
Duran, R. E., 534
Durazo-Arvizu, R., 200
Durell, J., 449
Durna, E. M., 354
Durrant, R., 436
Duru, O. K., 276
Dushay, R., 175
Dusseldorp, E., 187,
201
Dy, S., 506
Dyer, S., 305
Dyeson, T. B., 413
Dzewaltowski, D. A., 68
Dziegielewski, S., 414,
415
Dziegielewski, S. F.,
32, 411
Eagan, M., 348
Earls, F., 152
Easton, D. F., 507
Eaton, W. W., 545, 546
Eaves, L., 565
Eberhardt, M. S., 528
Ebrahim, S., 200
Eck, D., 266, 285
Eckersley, R. M., 267
Eden, J. A., 354
Edlin, B. R., 448
Edlund, L., 150
Edmonds, F., 599
Edmonds, M., 407
Edmonson, J. H., 599,
610, 615, 616
Edwards, A., 571, 572
Edwards, B., 500, 503,
517, 598
Edwards, B. K., 69, 172
Edwards, H. E., 130
Eeeles, R., 571
Eftkhari, A., 205
Egan, K. A., 618
Egan, M., 414
Egbert, L. D., 249
Egede, L., 546
Egener, B., 252
Egert, J. R., 615
Eheman, C., 500
Ehlebracht, K., 472,
481, 487, 488
Ehlert, U., 153
Ehrenberg, M., 345
Ehrenberg, O., 345
Eiseman, E., 59
Eisenberg, D, 292
Eisenberg, D. M.,
291–295, 297, 298,
300, 502
Eisenberg, L., 171, 237,
238, 241
Eisenstadt, T., 177
Eisenstadt, T. H., 177
Elashoff, R., 187, 201,
306
El-Bassel, N., 176,
439–441, 449
Elbert-Avila, K. I., 406
Elford, J., 533
Eliadis, E. E., 74
Elias, R., 108
Ell, K., 90, 506
Eller, L. S., 605
Ellingson, S., 148, 150
Elliot, T. R., 227
Elliott, D. E., 449
Elliott, M., 70
Elliott, S., 402
Ellis, A. R., 449
Ellision, C. G., 273, 274
Ellor, J. W., 406–408
Elwyn, G., 571, 572
Elzein, H., 478
Emanuel, E. J., 119, 611
Emanuel, L. L., 611
Emery, J., 572
Emery, S., 68
Emo-Dananberg, L. M.,
456
Enders, S., 593
Enders, S. R., 593
Engel, C. C., 182
Engel, G., 223
Engel, G. L., 20, 21,
318
Engelberg, R. A., 608
Engelgau, M. M., 531
Engelhardt, R. F., 252
Engelke, P., 74
Engstrom, M., 176, 190,
446, 449
Ennis, M., 511, 514
Enos, R., xvii
Enqvist, B., 307
Enright, R., 355
Enright, R. D., 275
Epstein, I., 472, 474,
476
Epstein, L., 15
Epstein, R. M., 242,
543
Erasmus, C. J., 239
Erblich, J., 575
Erdahl, J. C., 15, 125
Erickson, C. K., 428
Erickson, D. B., 177
Erickson, E. H., 344
Erikson, E., 605
Ernst, E., 297, 311
Erstling, S. S., 608
Escarce, J. J., 247, 530
Escudero, P., 205
Eshlerman, S., 190
Eskinazi, D. P., 292, 296
Esmail, S., 346, 350
Esposito, E., 547
Esposito-Smythers, C.,
196
Ettner, S. L., 292–294,
300
Etzel, S. I., 295
Eunpu, D. L., 577
Evans, S., 361
Evenson, K. R., 150
Everall, I., 545
Everett, C. J., 531
Evers, K. E., 134
Evers-Kiebooms, G.,
507, 575
Evison, I. S., 7, 8, 10,
134
Ewalt, C. K., 131, 132
Ewing, J. A., 405, 453
Extermann, M., 514
Eyberg, S., 177
Eyberg, S. M., 175–177
Eyer, J., 165
Eyfjord, J., 507
Eyre, H., 499–502, 505,
515
Ezzati, M., 151
Ezzo, J., 300, 507
Fabrega, A. J., 470
Fabsitz, R. R., 531
Fackenthal, J. D., 571
Fadiman, A., 242
Fahey, J. L., 166, 187,
201, 306
Fahs, M. C., 348
Fairbairn, W. R. D., 344
Fairfi eld, G., 643
Fajardo, M., 544
Falk, R. J., 276
Fallot, R., 449
Fallot, R. D., 449
Fals-Stewart, W., 449
Farber, N. J., 194
Farber, S., 608
Farrar, A., 618
Farzadegan, H., 536,
547
Fasching, P. A., 507
Fauerbach, J. A., 356,
357
Fawzy, F. I., 187, 201,
306
Fawzy, N. W., 187, 201,
306
Featherstone, K., 577
Fedder, D. O., 546
Feetham, S., 318, 324,
338
Feetham, S. K., 577
Fegg, M., 280
Feighery, E., 69
Feins, J. D., 144, 147
Feldt, K., 508
Felker, B. L., 176
Fello, M., 599
Felson, D. T., 374
Fentiman, B. J., 130
Author Index.indd 657Author Index.indd 657 9/21/11 7:56 PM9/21/11 7:56 PM
658 Author Index
Fergusson, D. M., 192
Ferketich, A. K., 543
Ferketich, S. L., 177
Fernandez, M. A., 175,
176
Fernandez, M. I., 534
Fernhoff, P. M., 570
Ferrando, S., 361
Ferrell, B., 598
Ferrell, B. A., 615
Ferrell, B. R., 619
Ferrin, M. J., 534
Ferris, S. H., 405
Ferriter, J., 305
Feuer, E. J., 374
Field, M., 580
Field, M. J., 629
Field, T. M., 306
Fielding, D., 474
Fielding, K., 545
Fields, G., 448
Fife, B., 512
Fife, D. K., 190
Figley, C., 639
Fillenbaum, G. G., 405
Fillingim, R. B., 615
Fincannon, J., 607
Finch, M., 405
Finch-Guthrie, P., 408
Findlay, S., 307
Fineberg, I. C., 608,
609, 618
Fink, N., 479
Fink, N. E., 473, 474
Finkelhor, D., 352
Finkelstein, F. O., 472
Finkelstein, N., 449
Finkelstein, S. H., 472
Finn, J. J., 382
Finn, W., 506
Finnegan, M., 434
Finucane, M. L., 572
Fiorenza, J., 472
First, M., 189
Fiscella, K., 95
Fischer, P. F., 190
Fischman, M. W., 447
Fishbein, M., 129, 130
Fisher, L., 175, 203,
318, 337
Fisher, N. L., 237
Fisher, P., 176
Fishman, B., 361
Fitzgerald, S. T., 132
Fitzpatrick, V., 509
Fix, M. E., 109
Flay, B. R., 68
Flegal, K. M., 374
Fleishman, J. A., 177, 403
Fleit, S., 643, 644
Fleming, M. F., 450,
453
Fleming, P. L., 533
Flemming, R., 643
Flexner, A., 7, 49
Fliege, H., 21
Flora, J. A., 69
Flores, G., 77, 255
Flower, L., 243
Floyd, A. R., 200
Floyd, M. F., 72
Flynn, N. M., 448
Foa, E. B., 203–204
Fobair, P., 203, 503–
505, 510
Fogg, L., 604
Foley, K., 438, 616
Folkman, S., 165, 173,
201–203, 398
Folstein, M. F., 405
Folstein, S. E., 405
Fonagy, P., 197
Fong, G. T., 130
Fong, R., 170
Fontanarosa, P. B., 311
Fontdevila, J., 449
Foote, R. C., 177
Ford, A. B., 405
Ford, B., 613
Ford, D. E., 545
Ford, E. S., 531, 544
Forman, W. B., 594
Forrest, D. D., 108
Forstein, M., 545
Fortner, B., 508
Fortune, T., 535
Fossa, S. D., 356
Fost, N., 581
Foster, C., 291–295, 298
Foster, D., 502
Foster, G. M., 239
Foster, R., 545
Foster, S., 309
Foulks, E. F., 241
Fowler, F. J., 151
Fowler, J. H., 91, 240
Fox, P. L., 615
Fox, R. C., 471, 479
Fraenkel, L., 537
Frain, J., 534
Frain, M. P., 534
Frame, P. S., 177
Framo, J., 327
Frank, A., 472, 473, 481
Frank, A. O., 305
Frank, D., 434
Frank, J., 413
Frank, J. C., 395
Frank, L., 74
Frankel, R., 252
Frankel, R. M., 246, 250
Frankl, V., 232
Frankl, V. E., 598
Franklin, C., 167
Franklin, M., 204
Frankowski, B. L., 192
Franks, H. M., 331
Franks, P., 95
Fraser, F. C., 572
Frasure-Smith, N., 166,
187, 548
Frayne, S., 180
Frayne, S. M., 68
Freedenthal, S., 193
Freedland, K. E., 536,
544
Freedman, M. A., 527
Freedman, T. G., 579
Freedman, V. A., 72
Freeman, E. M., 170
Freeman, I., 405
Freeth, D., 246
Freinkel, N., 151
Frenandez-Ortega, P.,
299
French, D. P., 130
French, S. W., 431
Frets, P. G., 580
Freud, S., 344
Frich, L. M., 613
Frick, E., 280
Frick, K., 506
Frid, D. J., 306, 543
Friebel, T. M., 507
Friebert, S., 381
Friedland, G. H., 534
Friedman, A., 471
Friedman, A. B., 151
Friedman, P. D., 432
Friend, R., 476
Frohlick, P. F., 345
Frost-Pineda, K., 433
Fu, S. S., 17, 238,
247–248
Fuchs, B. C., 112
Fuentes, P., 348, 356
Fugh-Berman, A., 306
Fuhrer, M. J., 226
Fujii, M. M., 579
Fujiura, G., 220
Fukuhara, S., 473, 477
Fukunishi, I., 474
Fullerton, S. M., 579
Funderburk, B., 177
Furgerg, C. D., 310
Furgiuele, C., 109
Furman, L. D., 277,
281–283
Furstenberg, A. L., 348
Furth, S., 472
Futterman, R., 446
Gaber, A. O., 481
Gabriel, M. A., 577
Gabriel, S., 374
Gaby, A. R., 308
Gaff, C., 571
Gaff, C. L., 572
Gagnon, J. H., 345, 354,
355
Gaither, G. A., 352
Galambos, C., 646
Galatzer, A., 540
Gale, J. L., 301
Galea, S., 435
Galindo, P., 170
Gallagher-Thompson,
D., 398
Gallant, L., 441
Gallo, J. J., 545
Gallo-Silver, L., 346,
348, 351–353, 362,
363, 605
Gambassi, G., 615
Gamble, S. J., 385
Gambrill, E., 169, 199
Gambrill, E. D., 24
Gamma, A., 198
Gandhi, R., 300
Gans, J., 222
Ganz, P., 133
Ganz, P. A., 509, 514
Author Index.indd 658Author Index.indd 658 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 659
Garbe, P. L., 374
Garber, J. E., 507
Garber, S. L., 357
Garcia, D., 158
Garcia, P. R., 534
Garcia, R., 306
Garcia-Preto, N., 327,
332, 336
Gardia, G., 619
Gardner, D., 506, 508,
510, 512, 516, 608,
644
Gardner, D. S., 577
Garfi nkel, R., 198
Garfi nkel, R. S., 153
Garner, M. D., 448
Garrard, J., 150
Garrett, B., 115
Garrett, J., 571
Garron, D. C., 613
Gartner, A. L., 284
Gartside, P., 431
Garvey, K. A., 196
Garwick, A., 506
Gates-Williams, J., 599
Gatsonis, C., 615
Gatz, M., 449
Gaugler, J. E., 403
Gaustad, E. S., 267
Gawinski, A., 318, 336
Gaynes, B. N., 181
Gearing, R. E., 276
Gee, G. C., 74, 172
Gee, L., 448
Geerlings, S. W., 615
Gehlert, S., xv, 70, 90,
127, 128, 149, 159,
244, 501, 518, 563
Gehlert, S. D., 563
Gehlert, S. J., 16
Geiss, L. S., 528
Gelberg, L., 133, 134
Gelfand, D., 415
Gelfand, M. M., 353
George, L. K., 273, 274
Georgiadis, J. R., 353
Gerber, R., 300
Gerber-Werder, R., 197
Gerdner, L. A., 406
Gerhart, K., 226
Germain, C., 64
Germain, C. B., 64, 167,
512
Germain, M., 474
Germain, M. J., 474
German, M., 482
Gersh, B. J., 247, 530
Gershwin, M. E., 307
Gerson, A., 434, 472
Gerson, R., 281, 327,
340, 519, 577
Gersons, B. P. R., 205
Geyer, A. C., 273
Ghadirian, P., 507
Ghafoor, A., 500
Giambarresi, T. R., 575
Gianaros, P. J., 165,
166, 200
Gibson, D. R., 448
Giermek, D., 483
Gifford, C., 305
Gige, J., 514
Gilbar, R., 580
Gilbert, J., 401
Gilbert, L., 176, 449
Gilbertson, D., 474
Gill, C. J., 228
Gillies, L. J., 297
Gilligan, C., 47
Gilmore, S., 544
Gilpin, M., 355
Ginandes, C., 307
Giovanni, M. A., 571
Girard, M., 150
Girffi n, S., 250
Girvin, H., 201, 446
Gitterman, A., 64, 167,
512
Giusti, R. M., 578
Given, B., 516
Given, C., 516
Gizlice, Z., 150
Glajchen, M., 506, 511,
516, 598, 599, 619
Glanz, K., 126
Glasgow, R. E., 68, 534,
535, 538
Glass, K. C., 580
Glastris, P., 225
Gliatto, M. F., 193, 194
Glimelius, B., 503
Globerman, J., 32, 34,
35, 644
Gloyd, S. S., 301
Glunt, E. K., 532
Go, H., 176, 449
Go, O., 531
Godried, M. H., 248
Goetz, C. G., 613
Goffman, E., 221
Goggin, K., 361
Gogia, P., 437
Gold, M. S., 433
Gold, P. W., 152
Goldberg, A., 309, 311
Goldberg, A. B., 68
Goldberg, B., 292, 301,
302, 304, 305, 307,
309
Goldberg, D. G., 118
Golden, S. H., 546
Goldenson, S. M., 117
Golder, S., 449
Goldfarb, A., 307
Goldmeier, J., 52
Goldstein, M., 478
Goldstein, M. S., 291,
294
Goldston, D., 544
Goleman, D., 246
Golub, S. A., 444, 448
Gomez, S., 509
Gonin, R., 599, 610,
615, 616
González, H., 172
Gonzalez, J. S., 534
Gonzalez, S., 326
Good, B., 171, 237, 238,
241
Goodey, E., 505
Gooding, H. C., 507,
575
Goodkin, D. A., 476
Goodman, L., 190
Goodman, R., 376, 380
Goodwin, F. K., 181,
190, 198
Goodwin, J. S., 166
Goodwin, P., 511, 514
Gorder, A. C., 406–408
Gordon, J., 509
Gordon, J. R., 439, 535,
538–540
Gordon, L., 65, 66
Gore, S. A., 241
Gorin, S. H., 16
Gorman, J. M., 548
Gorsuch, R. L., 268–270
Gotay, C. C., xvii, 513
Gotterer, R., 172
Gotthardt, S., 449
Gotto, A. M., Jr., 308
Gould, D., 231
Gould, F., 449
Gould, K. L., 308
Gourevitch, M. N., 536,
547
Grady, C., 618
Graffam, S., 605
Grafova, I. B., 72
Graham, C. L., 413
Graham, Y. P., 153
Gram, L. F., 194
Grann, J. D., 398
Grant, B. F., 172, 429,
432
Grant, M., 454, 455
Grant, R. W., 536, 547
Grason, H., 77
Grauer, D., 534
Gray, A., 571
Gray, S., 508
Gray, S. W., 571
Grealy, L., 232
Grech, P., 545
Greco, P., 535
Greeen, J. S., 200
Green, A., 531
Green, C., 616
Green, L. W., 68
Green, S. E., 353
Greenbaum, P. E., 448
Green C., 54
Greene, M. H., 578
Greene, P. G., 241
Greene, R. R., 415
Greenfi eld, S., 249, 251
Greenhouse, J. B., 192
Greer, S., 201–203
Greeson, J. M., 200
Gregg, E. W., 528
Greisinger, A., 293, 502
Grella, C. E., 449
Grey, D., 546
Greydanus, D. E., 355
Greyner, B., 474
Griffi th, D. M., 275
Griffi th, J., 332
Griffi th, L. S., 544
Griffi th, M., 332
Grigsby, A. B., 536, 544
Grimaldi, P. L., 450, 456
Author Index.indd 659Author Index.indd 659 9/21/11 7:56 PM9/21/11 7:56 PM
660 Author Index
Grimm, P., 362
Grinker, R., 13
Groce, N., 224
Grody, W. W., 575
Groeger, E., 580
Groerer, J., 616
Grogan-Kaylor, A., 74
Grossman, A. H., 355
Grossman, S. A., 599
Grov, C., 358
Groves, A., 34
Grower-Dowling, K.
A., 548
Grumbach, K., 110, 111
Gruskin, S., 72
Guba, E., 46
Gudes, C. M., 474
Guevara, E., 599
Gulcur, L., 448
Gunderson, E. P., 72
Gunn, A., 190
Gunn, W., 318, 336
Gunnars, B., 503
Gunther, M., 222, 227
Guntzviller, L. M., 248
Guo, A., 473
Gupta, J., 68
Gurtman, A. C., 546
Gushulak, B. D., 645
Gutheil, I. A., 414
Guther, H., 511, 514
Guthrie, D., 187, 201,
306
Guyer, B., 527
Guzman, J. R., 252
Haan, M., 154
Haas, A., 197
Haas, D. C., 547
Haas, F., 360, 361
Haas, J. S., 190
Haas, S. S., 360, 361
Haberle, B., 441
Hachey, M., 374
Hackbarth, D. P., 150
Hackman, R. M., 307
Hadler, A., 152
Haefner, D. P., 128
Hafdahl, A. R., 201
Hafner, R. J., 307
Haga, S., 59
Hagan, T. A., 449
Hahn, R. A., 172
Haiqing, S., 564
Halbert, C. H., 571
Hall, C. D., 545
Hall, D. E., 270, 272
Hall, J. A., 248, 537,
541, 542
Hall, P., 238, 244, 618
Halliday, J. L., 507, 571
Hallowell, N., 572
Halm, E. A., 547
Halpern, J., 222
Halshaw, D., 481
Hamblen, J. L., 205
Hamburg, B. A., 527
Hamburger, M. E., 166,
167, 187
Hamilton, B. E., 72, 75
Hammond, O. W., xvii
Hamouda, O., 532
Hamovitch, M., 506
Hancock, K. M., 226
Handelman, L., 407
Handler, A., 77
Hankey, B. F., 69, 172
Hankin, C. S., 180
Hankinson, S. E., 354,
362
Hann, D. M., 603
Hansen, J. P., 608
Hansen, P., 34, 608
Hanson, C. L., 539
Hao, Y., 503
Harden, J., 361
Hardinia, D., 55
Hardt, E. J., 255
Hardy, A. M., 294
Harfi eld, A. K., 599,
610, 615, 616
Harland, K. K., 68
Harless, W., 247, 530
Harootyan, L., 410, 510,
515, 516, 644
Harper, D. M., 144, 158
Harper, P., 226
Harpham, W. S., 606
Harrington, H., 585
Harris, D., 355
Harris, G., 277
Harris, J. J., 177
Harris, J. K., 92
Harris, M., 449
Harris, M. A., 535
Harris, R. J., 443
Harrison, L., 305
Hart, K. A., 226
Hart, P. D., 612
Hart, R., 380
Hartig, T., 72
Hartman, A., 282
Hartwell, L., 473, 477
Hartwell, N., 545
Harvey, L. M., 535
Harvey, M., 190
Harward, D. H., 276
Hasenbring, M., 605
Hasin, D. S., 432
Haskard, K. B., 534
Hasnain-Wynia, R., 408
Hatch, E. E., 434
Hatchett, L., 476
Hatfi eld, A. K., 599
Hathaway, D. K., 481
Hatsukami, D. K., 447
Hauf, S., 280
Haukka, J., 198
Hauser, J., 506
Hauser, S. T., 534, 539
Hauser, W. A., 127
Haviland, L., 69
Hawkley, L. C., 152
Hayes, I., 479
Hays, R. D., 70
Hazan, C., 343
Hazlett, R., 68
Hazlett-Stevens, H., 549
Headen, I., 107
Headrick, L. A., 33
Heaney, C. A., 538
Heath, G. W., 172
Heather, N., 444
Heckman, J., 449
Heckman, J. J., 153
Heclo, H., 112
Hedayati, S. S., 473
Heerdink, R., 535
Hefl in, C. M., 173, 190
Heggar, A., 383
Heider, F., 127
Heidrich, F., 128
Heikkinen, R., 509
Heim, C., 153
Heinberg, L., 356, 357
Heine, R. J., 546
Heiney, S., 607
Heisler, M., 537
Heit, S., 153
Helgeson, V., 333
Heller, G. Z., 354
Hellhammer, D. H., 153
Helman, C. G., 241
Helmick, C. G., 374
Helms, L. J., 542
Hembree, E. A., 204
Hemila, H., 308
Henderson, C. E., 448
Henderson, F. C., 172
Henderson, G., 571
Hendin, H., 197
Hendricks, C. B., 177
Hendrix, L., 407
Henggeler, S. W., 448
Hennen, J., 198
Henningfi eld, J. E., 189
Hennrikus, D., 249
Henriques, G. R., 197
Heo, M., 546
Hepworth, D. H., 125,
185, 190, 199, 252,
440
Hepworth, J., 318, 319,
337, 338
Herbert, T., 166
Herbert, T. B., 166
Herek, G. M., 532
Herman, D. B., 180, 190
Hermann, J., 504, 505,
512, 513, 516, 607
Hermann, J. F., 508
Hernandez-Avila, M.,
150
Herndon, K. C., 150
Heron, M., 145, 146,
148, 192
Herpertz, S., 548
Herrell, R., 565
Herrmann-Lingen, C.,
544, 546
Hershberger, S. L., 355
Herskowitz, D. R., 539
Herskowitz, R. D., 534
Hesdorffer, D. C., 127
Hessol, N. A., 546
Hester, R. K., 439–443,
448
Hettema, J., 444, 448
Hiatt, R. A., 244
Hibbs, J. R., 190
Hicks, C., 305
Hien, D., 189
Author Index.indd 660Author Index.indd 660 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 661
Hien, D. A., 449
Higginson, I., 599
Hight, E., 279
Hightower, P., 68
Hikoyeda, N., 407
Hildebrandt, M., 21
Hilden, J. M., 382
Hill, I., 109
Hill, M., 54
Hill, P. C., 268–272,
274, 279
Hillhouse, J., 306
Hillier, A. E., 90
Himelstein, B. P., 382
Hines, P. M., 130
Hingson, R., 434
Hinkin, C. H., 454
Hinton, W. L., 407, 408
Hipp, J. A., 84
Hipp, J. R., 69, 92
Hippisley-Cox, J., 545
Hirsch, C. S., 545
Hirsch, G. B., 91
Hirsch, R., 374
Hirsch, S. H., 395
Hirschfeld, R. M. A.,
193–198
Hirth, V., 394, 395
Hitchcock, P., 187, 188,
190, 191, 194, 199
Ho, J., 535
Hobbie, W., 507
Hobbins, D., 352
Hochbaum, G. M., 128
Hockenberg-Eaton, M.,
344
Hodge, D., 43
Hodge, D. R., 278,
280–282, 284
Hoffman, D. E., 610, 615
Hofmann, P., 3661
Hogan, S. L., 276
Hoge, C. W., 180
Hogenelst, M. H., 548
Hogg, R. S., 167, 545
Hogue, A., 448
Hoh, J., 565
Hokenstad, M. S., 85
Holahan, J., 107, 115
Holden, G., 355
Holder, C., 444, 448
Holder, D., 198
Holkup, P., 196
Holland, J. C., 503–505,
516, 594
Hollander, J. E., 197
Holley, J. L., 473, 479
Holliman, D., 32
Holliman, D. C., 411
Hollis, F., 167
Hollon, S. D., 203, 204
Holmes, M. D., 354, 362
Holmes, T. H., 68
Holmes, W., 409, 410,
509
Holmgren, A., 198
Holodniy, M., 534
Holstad, M. M., 267
Holstege, G., 353
Holtzman, D., 529
Holtzman, N. A., 579
Homer, C. J., 570
Homer, J. 2007, 91
Homer, J. B. 2006, 91
Honda, M., 474
Honig, A., 179
Hons, R. B., 472, 473
Hood, K. K., 177
Hood, R. W., 268–272,
279
Hood, R. W., Jr., 274
Hook, J. N., 284
Hook, J. P., 284
Hooker, C., 505, 514
Hopper, J., 507
Horejsi, C., 125
Horenstein, R. B., 564
Horgan, O., 356, 357
Horner, G., 344
Hornik, R. C., 571
Horowitz, I., 59
Horvath, A., 167
Horwood, L. J., 192
Hosier, S. G., 444
Hoskins, L. M., 578
Hossain, M., 645
House, A., 179
House, J. S., 149, 160,
165
Housenbold Seiger, B.,
446
Howard, A. A., 536, 547
Howard, A. F., 576
Howard, B. V., 531
Howe, C., 431
Howe, H. L., 172
Hoy, J., 545
Hoyert, D. L., 145, 146,
148
Hsia, J., 529
Hsiao, A. F., 291, 294
Hu, G., 438
Hu, M.-C., 449
Huang, E. S., 68, 108
Huang, L., 616
Huang, Y., 482
Hudgens, A., 619
Hudson, C., 301
Hudson, M. A., 276
Hudson, M. M., 509
Hudson, P., 506, 511,
608
Hudson, S., 402
Hudson, S. M., 444,
448, 457
Huegel, K., 375, 376
Huff, S., 381
Hufford, D. J., 269, 291,
294, 295, 311
Hugelshofer, D. S., 183
Hughes, D., 544
Hughes, M., 179, 180,
190
Hughes, M. K., 361
Hultman, T., 598
Humphreys, K., 441
Humphreys, L., 57
Hunt, I. M., 197
Hunt, L. M., 565
Hunt, N., 447, 448
Hunt, R. A., 270–272
Hunter, D. J., 643
Hunter, J., 511, 514
Hurdle, D. E., 302
Hurlbert, D. F., 353
Hurley, J., 616
Hurley, K., 331, 572
Hurria, A., 514
Husserl, F. E., 478
Huston, S. L., 150
Hutchins, E., 77
Hutson, S. P., 578
Hwang, S. W., 190
Hwang, W., 472
Hyun, C. S., 187, 201,
306
Iacono, S. A., 473
Icard, L. D., 76
Ickovics, J. R., 166,
167, 187
Ide, M., 353, 356
Iecovich, E., 415
Iglehart, A. P., 294, 295,
302–304
Iguchi, M., 438, 616
Im, E., 599
Imber-Black, E., 333
Imhof, J. E., 451
Inada, T., 473
Infante, M. C., 546
Ingledue, K., 128
Inoff, G. E., 527
Inouye, S., 508
Insel, T. R., 178
Inui, T. S., 250
Iqbal, M. I., 545
Iredale, R., 572
Irle, J., 571
Isacsson, G., 198
Ismail, K., 548
Israel, B. A., 159, 252,
538
Issell, B., 300
Ivanoff, A. J., 193–197
Ivey, S. L., 413
Iyengar, S., 544
Izzo, C., 536, 547
Jaakko, K., 565
Jackson, B. A., 405
Jackson, D., 478
Jackson, D. A., 300
Jackson, D. L., 399,
409, 410
Jackson, J. S., 172, 192
Jackson, V., 125
Jacob, R., 144, 147
Jacobs, A., 204
Jacobs, J., 301
Jacobs, W. S., 433
Jacobsen, P., 505, 514,
594, 602, 603, 605
Jacobsen, P. B., 200, 594
Jacobson, A., 535, 543
Jacobson, A. M., 534,
539
Jacobson, L. P., 532
Jadad, A. R., 615
Jaeger, U., 204
Jaehee, Y., 509, 514
Jaffe, A. J., 443
Author Index.indd 661Author Index.indd 661 9/21/11 7:56 PM9/21/11 7:56 PM
662 Author Index
Jaffe, J., 454
Jaffe, M. W., 405
Jaffee, S. R., 565
Jakubiak, C., 415
Jannasch, K., 535, 543
Janoff, S., 54
Janssen, R. S., 533
Janus, I. L., 246
Janz, N., 129
Jarman-Rohde, L., 125
Jarrett, M. C., 13
Jarvik, G. P., 579
Jarvik, L., 454
Jarvis, K. B., 305
Jasser, S. A., 200
Jaw, B. S., 471, 474, 480
Jeffrey, R. W., 165
Jehu, D., 352
Jemal, A., 500, 503
Jemmott, J. B., III, 130
Jemmott, L. S., 130
Jenckes, M., 479
Jencks, C., 154
Jenkins, L., 534
Jennette, C., 276
Jennings, D. J., II, 284
Jenny, N. S., 72
Jensen, J. B., 348, 353,
360
Jensen, J. D., 247
Jensenius, K., 16, 239
Jerant, A. F., 615
Jesdale, B. M., 193
Jiang, H., 449
Jiang, W., 306, 473
Jimenez, L. M., 301
Jimenez, M. A., 112
Joe, S., 192
Johansen, K. L., 482
Johansson, B. B., 300
Johansson, K., 300
Johnsen, S. P., 21
Johnson, A., 199, 200,
605
Johnson, A. M., 532,
576, 582, 583
Johnson, B. A., 198
Johnson, B. H., 511
Johnson, B. T., 130
Johnson, C. A., 150
Johnson, C. F., 352
Johnson, H. B., 112
Johnson, J., 449
Johnson, J. C., 291, 294,
295, 311
Johnson, J. D., 573
Johnson, J. L., 134
Johnson, K., 109, 406
Johnson, K. C., 529
Johnson, M., 224
Johnson, M. S., 570
Johnson, R., 509
Johnson, R. L., 17, 246,
247
Johnson, S. B., 536
Johnson, T. A., 632, 639
Johnson, V. E., 353,
354, 363
Johnson, W. R., 439
Johnson, Y., 190
Johnson-Mallard, V.,
200
Johnston, J. M., 68
Johnstone, S., 480, 481,
485
Joiner, T. E., 196
Joly, L. M., 608
Jonas, W. B., 296, 299,
310
Jones, C., 307
Jones, D. A., 548
Jones, E. M., 197
Jones, J., 51, 58
Jones, J. C., 353
Jones, J. M., 536
Jones, M. K., 348, 356
Jones, T. V., 500, 502
Jones, V., 412
Jones, V. Y., 407, 408
Jonsen, A., 50, 51, 53,
471
Jonsson, T., 308
Jordan, C., 167
Jordan, J., 249
Joseph, M., 44
Joy, J. E., 434
Joyner, K., 193
Judd, F., 545
Judis, J. B., 112
Jung, K. G., 534, 535,
538, 539, 541
Jungeblut, A., 534
Justice, B., 306
Kabat-Zinn, J., 200, 307
Kabcenell, A., 694
Kächele, H., 204
Kadden, R. M., 442, 444
Kadushin, G., 414
Kagawa-Singer, M., 599
Kagle, J., 46
Kahlback, D., 232
Kahn, J. O., 534
Kahn, R., 165
Kahn, R. L., 244
Kaiser, S., 350
Kaitelidou, D., 471, 474
Kalkwarf, H., 75
Kanaan, B. K., 411
Kandel, D. B., 433
Kane, J., 566
Kane, R., 508
Kane, R., 508
Kane, R. A., 396, 403,
405, 406
Kane, R. L., 396, 398,
404, 412
Kane, V., 449
Kapfhammer, H. P., 361
Kaplan, D., 327
Kaplan, G., 77
Kaplan, G. A., 149, 154,
157, 160
Kaplan, H. B., 456
Kaplan, H. S., 344, 346,
353, 361, 363
Kaplan, J., 546
Kaplan, J. L., 500, 502
Kaplan, M. S., 399
Kaplan, S., 251
Kaplan, S. H., 249, 251
Kappes, N., 232
Kaprio, J., 558
Kaptchuk, T. J., 293,
295, 297
Kapur, N., 197
Karma, S., 353
Karon, J. M., 533
Karp, L., 571
Karris, S. D., 350
Karus, D., 433
Kase, R. G., 575
Kashner, T. M., 180
Kaskel, F., 472
Kaskutas, L. A., 441
Kaspar, V., 172, 173,
201
Kasper, J., 108, 506
Kass, L., 609
Kassebaum, P. A., 450,
456
Kataoka, S. H., 205
Katcher, M. L., 374
Katon, W., 166, 197,
547
Katon, W. J., 544, 546,
547
Katz, A., 353, 356
Katz, I. R., 399
Katz, L. F., 144, 147
Katz, M., 193
Katz, N. R., 541, 542
Katz, R. S., 632, 639
Katz, S., 405
Katzin, L., 346
Kauff, N. D., 507
Kaufman, D., 572
Kaufman, J. S., 64, 76,
77
Kaufman, S. R., 47
Kava, B. R., 350
Kawachi, I., 64, 174,
275
Kawashima, T., 509
Kayne, H., 434
Kayser, K., 34, 175,
506, 512, 608
Kazak, A., 377
Kazak, A. E., 337
Keane, C. R., 72
Keating, S. A., 411, 412
Kee, R., 158
Kee, R. A., 146, 158
Keefe, F. J., 615
Keefe, R. H., 70
Keefl er, J., 35
Keegan, J., 434
Keen, M. L., 476
Keene, N., 377, 507
Kelleher, K. J., 192
Keller, E., 305
Keller, G., 174
Keller, R. B., 151
Kelley, H. H., 127
Kelley, K. W., 150
Kellogg, S. H., 446
Kelly, D. C., 344
Kelly, G. R., 128
Kelly, P., 604
Kelly, R., 353
Kelly, R. E., 204
Kemeny, M. E., 166
Author Index.indd 662Author Index.indd 662 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 663
Kendler, K., 429
Kendler, K. S., 190
Kenen, R., 571, 577
Kennard, B. D., 166
Kennedy, B. J., 299
Kenney, G., 109
Kenney, K. A., 109
Kent, A., 558
Keppel, K. G., 172
Kerlinger, F. N., 126
Kerner, J. F., 247, 530
Kerr, K., 603
Kerrigan, A. J., 357
Kerson, T. S., 164, 170,
171, 178
Kessels, A. G., 613
Kessler, D., 181
Kessler, L., 500, 571
Kessler, R., 502
Kessler, R. C., 179, 180,
190, 193, 203, 204,
291–295, 297, 298,
300
Kesten, D., 308
Kettner, P., 53
Khaleel, N. I., 33
Khaw, K., 545
Khoury, J., 75
Khunti, K., 544
Kiefe, C. I., 72
Kiely, M., 179
Kieswetter, H., 309
Kilburn-Watt, E., 348,
356
Killaspy, H., 193
Kim, C., 530
Kim, G. H., 472
Kim, S. G., 472
Kim, S. S., 350
Kim, Y., 415
Kimerling, R., 68, 183
Kimmel, P., 473
Kimmel, P. L., 472, 473
Kim-Sing, C., 577
Kindig, D. A., 534, 572
King, A. J., 248
King, H., 531
King, M., 152, 193, 356
King, M. B., 270–272
King, M. C., 507
Kingsberg, S. A., 353
Kinmonth, A. L., 250
Kinney, J., 440, 441
Kinsey, A. C., 345, 354
Kip, K. E., 200
Kippes, M. E., 603, 604
Kirby, A. J., 532
Kirchner, J. E., 176
Kiresuk, T. J., 294
Kirk, J., 580
Kirk, S., 506
Kirk, S. A., 178
Kirmeyer, S., 72, 75
Kirsch, I., 534, 605
Kirschner, K., 225
Kirschner, K. L., 229
Kirscht, J. P., 128
Kirsh, K. L., 438, 439
Kissane, D., 598
Kivimaki, M., 71
Kivnick, H. Q., 405
Kjellstrom, T., 84
Klap, R., 203, 204
Klapp, B. F., 21
Klassen, J., 472, 473
Klaukka, T., 198
Klebanoff, M. A., 433,
434
Kleespies, P., 544
Kleijnen, J., 301
Klein, A., 13
Klein, E. L., 346, 360
Klein, J. D., 570
Klein, T. W., 200
Kleinman, A., 171, 237,
238, 241, 242, 331,
398, 633, 640
Kleinman, L., 301
Klesges, L. M., 68
Kliger, A. S., 472
Klijn, J. G. M., 580
Kling, J. R., 144, 147
Klingbell, F., 353
Klinger, K., 575
Klipstein, S., 574
Klugman, L., 190
Klussendorf, D., 309
Knapp, C., 382
Kneebone, I. I., 127
Knickerman, J. R., 500
Knickman, J. R., 75, 143,
149, 165, 173, 175,
244, 246, 256
Knight, E. L., 480
Knipschild, P., 301
Knol, M. J., 546
Knopp, R. H., 530
Knoppers, B. M., 580
Knowler, W. C., 151,
531
Ko, C. M., 128
Kobayashi, J. S., 547
Kochanek, K. D., 71,
72, 75, 145, 146, 148,
192, 533
Koenig, B., 599
Koenig, B. A., 599, 634
Koenig, H. G., 171,
269–279, 284, 406
Koffman, J., 599
Koffman, R. L., 180
Kohler, B., 500
Kohn, J., 479
Kohrman, J., 13
Koken, J. A., 358
Kolko, D., 198
Kolstad, L., 534
Kolterman, O. G., 539
Komiti, A., 545
Kon, A. A., 90
Kondrat, M. E., 64, 92,
167, 169
Koo, J. R., 472
Koocher, G. P., 548
Koontz, A. M., 77
Koopman, R. J., 531
Koopmans, J., 505, 511,
514
Kopels, S., 46
Kopke, J. E., 470
Koppelman, K., 594
Kopstein, A. N., 616
Korbin, J. E., 153
Korn, E., 150
Kornbluth, A. B., 509
Korngold, E., 300, 310
Koro, C. E., 546
Korthuis, P. T., 247
Kosary, C., 500, 503,
517, 598
Koscielny, J., 309
Kosten, T. R., 434, 436,
438
Kotch, J. B., 65
Kout, J. A., 240
Kouvelis, A., 144, 158
Kovacs, M., 544
Kozachik, S., 516
Koziol-McLain, J., 226
Kraaij, V., 187, 201
Kraemer, H., 172
Krajewski-Jaime, E. R.,
295
Kral, A. H., 448
Kramer, A., 413
Kramer, B. J., 506, 508
Kramer, H., 411, 412
Kramer, J., 535, 543
Kramer, N. A., 305
Kramer, R., 309
Krantz, D. S., 174, 306
Kranzler, H. R., 429
Krapcho, M., 500, 503,
517, 598
Kratt, P. P., 241
Krause, N., 274, 275,
285, 401, 509
Krause, N. M., 272, 274
Kreische, R., 204
Krementz, J., 376
Krentzman, A., 441
Kressin, N., 180
Kreuter, M., 159
Kreyenbuhl, J., 546
Krieger, N., 72, 73, 77,
145, 172, 173
Krippner, S., 303, 304
Krishnan, K. R., 473
Kristal, A. R., 241
Kristjanson, L., 506,
511
Kristjanson, L. J., 608
Kroenke, K., 166
Kroll, K., 346, 360
Kronenberg, F., 293
Kronenfeld, J. J., 110,
111, 122
Kronenfeld, M. R., 122
Kronish, I. M., 547
Kruse, J., 544
Kruzich, J. M., 415
Ku, L., 109, 154
Kubena, K. S., 536
Kübler-Ross, E., 226,
594
Kuboki, T., 473
Kubzansky, L., 275
Kuchel, A., 508
Kuchibhatla, M., 473
Kuhn, C. M., 306
Kumano, H., 200
Kumar, P., 533
Author Index.indd 663Author Index.indd 663 9/21/11 7:56 PM9/21/11 7:56 PM
664 Author Index
Kung, H., 533
Kunz, C., 444, 448
Kupst, M., 507
Kurella, M., 472
Kurtin, P. S., 474
Kurtz, E., 441
Kurylo, M., 227
Kushel, M. B., 190
Kushner, K., 608
Kutchins, H., 178
Kutner, N. G., 471, 482
Kuzel, A. J., 118
Kuzma, M. A., 194
Kwilosz, D. M., 618
Kwoh, C. K., 374
Kyle, D., 331, 333
Lacey, H., 48, 57
LaCroix, A., 508
Laderman, G., 267
Lafffel, L. M., 535
Lahey, B. B., 318
Lakon, C. M., 69, 92
Lam, T. H., 68
Lamb, C., 483
Lamb, M. M., 374
Lambert, P. C., 532
Lamont, L., 505
Lamptey, P. R., 532
Landau, R., 52
Landen, M. G., 435
Landesman, L. Y., 83, 84
Landgraf, J. M., 474
Landi, F., 615
Landon, B. E., 108
Landsman, M. K., 472,
473
Lange, D. P., 499–502,
505, 515
Langer, R. D., 529
Langley, A., 205
Langlois, J., 403
Lanphear, B., 75
Lantos, J. D., 264
Lapane, K., 615
Lapin, J., 613
Larimer, M. E., 442,
443, 448
Larsen, J., 252
Larsen, J. A., 125, 185,
190, 199, 440
Larson, D. B., 171,
269–274, 276, 284
Larson, D. G., 618
Larson, E., 228
Larson, E. B., 128
Larson, S. M., 253
Lasser, N. L., 529
Lathrop, S. L., 435
Latza, R., 309
Laucht, M., 565
Laumann, E. O., 20,
148, 150, 345, 354,
355
Launso, L., 305
Laurenceau, J. P., 350
Lautrette, A., 608
LaVeist, T. A., 152
Lavori, P., 534
Law, D., 337
Lawlor, E. F., 101, 106
Lawrence, D. J., 304
Lawrence, J. W., 356,
357
Lawrence, R. C., 374
Lawrence, R. E., 264
Lawrence, S., 68
Lawry, K., 474
Laws, M. B., 255
Lawson, K., 644
Lawson, L. D., 309
Lawson, M. L., 536
Lawson, R., 127
Lawton, M., 508
Lawton, M. J., 453, 454
Layne, C., 204
Lazarus, A., 54
Lazarus, R. S., 165, 173,
202
Lazcano-Ponce, E., 150
Lazrus, J. M., 480
Leader, L. R., 354
Leake, B. D., 133, 134
Leaton, G., 440, 441
Leavell, J., 172, 431
LeBas, J., 503
Lebow, J. M., 190
Lechman, C., 35
LeClere, F. B., 155
Lecours, A. R., 353
Lecrubier, Y., 181, 183,
203–205
Lederberg, M. S., 594
Ledesma, D., 200
Lee, E. T., 531
Lee, H., 150, 446
Lee, J., 507
Lee, J. S., 34, 414
Lee, R. C., 308
Lee, S., 193
Lee, Y. K., 472
Lefcourt, H. M., 333
Lefcowitz, M. J., 411,
647
Lefebvre, J. C., 615
Legius, E., 507
Lehert, P., 354
Lehner, T., 565
Leibing, E., 204
Leichsenring, F., 204
Leigh, E., 198
Leipzig, M., 306
Leischow, S., 92
Lemieux, L., 350
Lemon, S. C., 432
Lenahan, P., 408
Lencz, T., 566
Leng, M., 276
Lengacher, C. A., 200
Lenox, R., 180
Leo, R. J., 480
Leob, J. M., 101
Leon, A. C., 545
Leonard, R. C., 249
Leonard, T., 454, 455
Lepper, H. S., 546, 547
Lerman, C., 575
Lerner, I. J., 299
Leroux, J. M., 353
LeSage, L., 480, 481
Leshner, A. I., 441, 442
Leslie, D. L., 546
Lesperance, F., 166, 187
Leszcz, M., 511, 514
Lethborg, C., 598
Lett, H. S., 543–545
Leung, G. M., 68
Levay, I., 173
Levenson, S., 434
Leventhal, H., 239
Levethal, T., 154
Levin, B., 177
Levin, J. S., 269, 274,
401, 406
Levin, T., 292
Levine, B. J., 477
Levine, C., 617
Levine, D. M., 253
Levine, F. M., 615
Levine, M., 449
Levine, R., 91
Levinson, D. J., 329
Levinson, W., 20, 182,
250
Levitan, A. A., 307
Levy, J. A., 240
Levy, M., 613
Lew, N. L., 477
Leweke, F., 204
Lewin, J., 356
Lewis, C. P., 166
Lewis, E. Y., 275
Lewis, G., 181, 247
Lewis, I. D., 406
Lewis, J. P., 293, 296
Lewis, M., 643, 644
Lewis, S., 108, 503,
505, 515
Ley, P., 542
Li, C., 544
Li, W., 249
Liang, K., 565
Liao, S., 615
Liaropouls, L., 471, 474
Lichtiger, E., 474, 476
Lickiss, J. N., 618
Liddle, H. A., 448
Liebman, A., 608
Lieu, T. A., 570
Lifton, R., 221
Light, T., 307
Lim, H., 599
Lim, J., 318, 514
Lin, C.-T., 252
Lin, E., 166, 197, 547
Lin, E. H. B., 546
Lin, J.-W., 644
Lin, K., 170
Lin, K.-M., 406
Lin, N., 509
Lin, Y. D., 69
Lincoln, J. D., 89
Lind, L., 180
Lindau, S. T., 20
Lindauer, R. J. L., 205
Lindberg, J. S., 478
Linder, J. F., 593
Lindgren, I., 300
Linehan, M. M., 198
Liner, K. J., 545
Link, B., 175, 500
Link, B. G., 173
Author Index.indd 664Author Index.indd 664 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 665
Linsk, N. L., 402
Lip, G. Y., 354
Lipkin, C., 412
Lippman-Hand, A., 572
Liptak, G. S., 249
Lipton, R., 612
Lipworth, L., 307
Lish, J. D., 194
Lister, L., 16, 245
L’Italien, G. J., 546
Litt, L. C., 449
Littell, J. H., 201, 446
Little, J., 447
Liu, C., 176
Liu, K., 403
Liu, Y., 599
Livneh, H., 21, 227, 512
Lizardi, D., 276
Llorens, L., 406
Lloyd, J. H., 545
Lloyd, K., 181
Lo, B., 599, 609, 634
Lobb, E., 571
Lobchuk, M. M., 599
LoCicero, A., 84
Locke, B. Z., 181, 190
Locke, S. E., 548
Lodder, J., 179
Loewy, J. V., 380
Logan, D. E., 447
Loge, J. H., 613
Logsdon, R., 405
Lohr, K. N., 181, 409
Lollock, L., 16, 239–240
Lonczak, H. S., 448
London, A. S., 177
Long, J. M., 307
Long, S. K., 115
Longabaugh, R., 439,
443–445
Longknife, K., 481
Longmore, P., 226
Longshore, D., 177
Lönnqvist, J., 198
Lopez-Jimenez, F., 151
Lorente, M., 446
Lorenz, A., 318, 327,
336, 337
Lorenz, R. A., 535, 543
Loscalzo, M., 603, 605,
619
Loscalzo, M. J., 594,
618
Lostumbo, L. N., 507
Lott, C., 42
Loud, J., 578
Loud, J. T., 578
Lousberg, R., 179
Loveland-Cook, C. S.,
304, 308
Lovett, J., 379, 3385
Low, S. M., 242
Low-Beer, S., 167, 545
Lowe, D., 509
Loweenstien, S., 226
Lowenberg, F., 42, 43,
49, 53
Lown, B., 252
Lowrie, E. G., 477
Lowry, P., 152
Lu, D. P., 301
Lu, G. P., 301
Lubben, J. E., 402, 405
Luben, R. N., 545
Lucas, F., 645
Lucas, J. W., 145, 146
Luck, E., 297, 299
Luckman, J., 253, 254
Ludman, E. J., 197, 579
Luebbert, K., 605
Lukas, S., 183–186,
194, 195
Luke, D. A., 92
Lukens, E., 175
Lukens, E. P., 200
Lukianowicz, N., 353,
363
Lundahl, B., 444, 448
Lundahl, B. W., 444,
448
Lundberg, G. D., 311
Lundin, A. P., 478
Luoma, J. B., 194
Lupton, D. L., 572
Lurie, N., xv
Lush, D. T., 194
Lusk, M., 645
Lustman, P. J., 536, 544,
546
Lux, M. P., 507
Lynch, D., 307
Lynch, H. T., 507, 577
Lynch, J., 77
Lynch, V., 115
Lynn, J., 335, 694
Lynskey, M. T., 566
Lyon, D. E., 545, 546
Lyons, B., 108
Lyyra, T., 509
Macchia, I., 190
MacDonald, H., 474
MacDonald, J. E., 598
MacDorman, M. F.,
72, 75
Maceda, M., 488
MacGregor, D. G., 572
MacGregor, H., 13
Machiran, N. M., 307
Macias, J., 435
MacIntosh, A., 295,
296, 304
MacIntyre, S., 150, 156
MacIver, S., 156
MacKenzie, E. R., 291,
294, 295, 311
MacLachlan, M., 356,
357
MacMaster, S. A., 447
MacPherson, D. W., 645
Madden, D. J., 398
Madden, T. J., 128, 130
Madden, V., 382
Maddocks, I., 618
Madras, B. K., 448, 450,
456, 457
Maes, S., 187, 201
Magder, L. S., 546
Maguire, P., 248
Mahay, J., 148, 150
Maher, J. E., 444, 448
Mahler, K., 264
Mahoney, M., 150
Mailick, M. D., 15
Maiman, L. A., 128,
249, 535, 536
Mainous, A. G., 531
Majeed, A., 531
Mak, S., 435
Makoul, G., 242
Malcolm, R., 438
Malhotra, A., 566
Malone, D. K., 448
Malott, J. M., 604
Maloy, K. A., 109
Maltby, L. E., 279
Maltz, W., 352, 363
Maly, R. C., 252, 395
Mamalakis, P., 54
Mamon, J. A., 128
Manderscheid, R. W.,
181, 190
Mandin, H., 472, 473
Mandle, C. L., 306
Mandrusiak, M., 196
Mangione, C. M., 276
Maniadakis, N., 471, 474
Mann, J. J., 197
Manne, S., 506
Mannucci, E., 544
Manolio, T. A., 558
Manson, J. E., 529
Mantell, J., 506
Mantell, J. E., 348
Manthei, D., 535
Manton, K. G., 403
Manuel, J., 449
Mapes, D., 473, 477
Maramaldi, P., 514, 644
Maravi, M., 547
March, J., 198
Marchioro, G., 307
Marconi, K. M., 130
Marcus, E. N., 253
Marcus, S., 92
Marcus, S. C., 198
Marcusen, C., 509
Marcusen, C. P., 504
Margolis, L. H., 65
Marin, D. B., 398
Mariotto, A. B., 374
Markham, H., 359
Markides, K. S., 269
Markoff, L. S., 449
Markowitz, J. C., 203,
204
Marks, J. S., 531
Marks, R., 348, 356
Markus, A., 109
Marlatt, G. A., 159,
439–443, 446–448,
535, 538–540
Marmar, C., 180
Marrone, C. M., 310
Marsh, J., 199
Marsh, J. C., 449
Marshall, G., 70
Marshall, P. A., 599, 634
Marshall, R. D., 204,
205
Marteau, T., 226
Martell, C., 400, 401
Author Index.indd 665Author Index.indd 665 9/21/11 7:56 PM9/21/11 7:56 PM
666 Author Index
Martin, C. E., 194, 345,
354
Martin, E. A., 219
Martin, J. A., 72, 75
Martin, L., 514
Marton, K. I., 23, 245
Marx, R., 193
Marzuk, P. M., 545
Masand, P. S., 415
Maselko, J., 275
Masi, C., 563
Masi, C. M., 73, 149,
152, 159
Mason, R. A., 299
Mason, S., 481
Masterman, D., 407, 408
Masterov, D. V., 153
Masters, W. H., 353,
354, 363
Mather, L., 446
Mathews, T. J., 72, 75
Mathias, S., 405
Mathy, R. M., 193
Matsunaga, D. S., xvii
Matsuyama, N., 473
Matthews, H. L., 200
Matthews, J. R., 176
Matthias, R. E., 402, 405
Mattison, M., 52, 53
Mauksch, L., 318, 336
Mauriello, L. M., 134
Mauritzen, J., 632
Mayer, S., 154
Mayes, S., 263
Maynard, G., 410
Mayo, S. J., 255
Mazza, N., 415
Mazzaglia, G., 546
McAllister, J. W., 117
McAndrew-Cooper, M.,
150, 155, 156
McAvay, G., 401
McBride, M., 407
McBride, M. R., 406
McBrien, M. E., 437
McCabe, M. P., 343,
346, 349, 353, 356,
357
McCaffery, M., 601
McCahill, M. E., 180
McCain, L. A., 385
McCallin, A., 618
McCann, S., 251
McCarthy, M., 414
McCarty, D., 441
McCaul, K. D., 534, 604
McCauley, H. L., 68
McClelland, M., 245,
246
McClintock, M., 90,
244, 501, 518, 563
McClintock, M. K., 563
McConkie-Rosell, A.,
581
McCorkle, R., 594
McCoyd, J., 571–573,
579
McCreath, H., 72
McCree, D. H., 131
McCulloch, C. E., 579
McCullough, M. E.,
268–275, 284
McDaniel, J. S., 545
McDaniel, S., 318, 319,
324, 337, 338
McDaniel, S. H., 577
McDavid, N. L., 158
McDermott, R., 151
McDonald, G., 32
McDonald, M. V., 615
McDonnell, J., 232
McEwen, B. S., 165,
166, 200
McFann, K., 292, 294
McFarlane, P., 478
McFarlane, W. F., 337
McFarlane, W. R., 175
McGeehin, M. A., 153
McGill, J. B., 536, 544
McGinnis, J. M., 75,
143, 149, 165, 173,
175, 244, 246, 256,
500
McGinnis, R. A., 548
McGoldrick, M., 169,
170, 172, 281, 324,
327, 332, 336, 340,
519, 577
McGonagle, K. A., 190
McGowan, J., 68
McGowan, L., 148
McGrady, A., 548
McGrady, B. S., 450,
451
McGraw, S., 537
McGuire, J., 24
McGurk, D., 180
McHugh, P. R., 405
McInnes, R. A., 346,
353
McInnis-Dittrich, K.,
396, 398, 404, 411,
414
McIntosh, W. A., 536
McKain, B., 198
McKay, J. R., 441, 442
McKendrick, T., 474
McKenna, K., 353
McKevitt, P., 473, 477
McKinley, M., 477, 482
McKusick, V. A., 564
McLanahan, S. M., 308
McLaughlin, J. K., 21
McLaughlin, T. J., 548
McLean, M., 152
McLellan, A. T., 441,
442, 447, 449
McMahon, E., 355
McMahon, J. M., 435,
436
McMillen, J. C., 227
McMurty, S., 53
McMyler, C., 196
McNeece, C. A., 427,
430, 431, 436, 440,
449
McNeil, C., 177
McNeil, C. B., 177
McNeil, J. G., 545
McPhelimy, L., 605
McPherson-Baker, S.,
534
McQuaid, J. R., 180
McRee, B. G., 450, 456
McVeigh, K. H., 544,
547
McWhinney, I. R., 249
McWilliam, W., 21
Meade, C. S., 546
Meade, T. W., 305
Meador, K. G., 270, 272
Meadows, A. T., 509
Meadows, L. M., 350
Mealey, L., 345
Meaney, M. J., 563
Mechanic, D., 178, 643
Mediansky, L., 506
Medich, C., 306
Medina, L., 255
Meehan, J., 197
Meeker, W. C., 304
Megarane, B., 608
Megyesi, M. S., 565
Mehrota, R., 470, 472
Mehta, J., 198
Meichenbaum, D., 533,
535, 538, 540, 541
Meier, K. S., 134
Meijers-Heijboer, E. J.,
580
Meiser, B., 507, 571
Mellinger, A., 190
Menacker, F., 72, 75
Mendenhall, C. L., 431
Mendenhall, T., 614,
619
Mendoza, T. R., 616
Mennuti, M., 575
Mentore, J. L., 546
Merighi, J. R., 470, 472,
474, 481, 487–488
Merikangas, K. R., 565
Merlis, M., 112
Mermelstein, R., 68
Merritt, T. A., 308
Mertens, A., 509
Mertens, A. C., 509
Messer, S. C., 180
Messick, J., 227
Meston, C. M., 345
Metalsky, G. I., 127
Metcalfe, K., 507
Meulman, J., 187, 201
Meyer, C., 512
Meyer, C. H., 167
Meyer, D., 608
Meyer, D. L., 608
Meyer, E. C., 383
Meyer, K., 479
Meyer, K. B., 473, 474
Meyer, R. E., 443
Meyers, F. J., 615
Meyers, K., 449
Meyers, R. J., 449
Mezuk, B., 546
Michael, R. T., 345,
354, 355
Michaels, S., 345, 354,
355
Michie, S., 571, 580
Miele, G. M., 449
Mijch, A., 545
Author Index.indd 666Author Index.indd 666 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 667
Mikulincer, M., 506
Milano, D., 435, 436
Milch, R., 506
Milinair, J., 481
Miller, A., 58
Miller, A. L., 198
Miller, B., 318
Miller, B. A., 69, 456
Miller, D., 72
Miller, D. R., 180
Miller, E., 68
Miller, E. R., III, 253
Miller, G. E., 165, 166
Miller, J. P., 72, 534,
535, 538, 539
Miller, M., 198
Miller, M. E., 357
Miller, M. S., 26
Miller, P. G., 447
Miller, R., 91
Miller, S., 318, 324,
338, 535, 572
Miller, S. M., 331, 577
Miller, W., 54, 201
Miller, W. R., 201,
439–445, 447, 448,
450, 457
Milley, J. E., 534
Millman, J., 196
Mills, R. J., 103
Milstein, B., 91
Min, J. W., 408
Miner, C., 180
Miniger, C., 501, 518
Mininger, C., 70, 90, 563
Mira, J. A., 435
Miracle, A., 514
Mirot, A., 474
Misra, M., 472
Misra, S., 84
Mitchell, R., 71
Mizrahi, T., 243, 245,
643, 644
Moak, D. H., 429
Moeschberger, M. L.,
543
Moffi tt, T. E., 585
Mohammed, S. A., 172,
431
Mohyde, M., 401
Mojtabal, R., 396
Mokdad, A. H., 531,
544
Molassiotis, A., 299
Mollaoglu, M., 473, 474
Moloney, M., 571
Moncrief, M., 488
Monga, T. N., 357
Monga, U., 357
Monroe, B., 619
Monster, T. B., 21
Montaner, J. S., 545
Montaner, J. S. G., 167
Montgomery, C., 503, 504
Montgomery, G., 605
Montgomery, G. H.,
307, 605
Montgomery, R. A., 470
Monti, K., 197
Moody, H. R., 416
Moody-Ayers, S., 547
Mooney, C., 150
Moore, B., 474
Moore, K., 301
Moore, L., 72
Moore, T. J., 310
Moorman, J. E., 374
Moos, R., 322
Mor, V., 615
Morales, L. S., 70
Moreau, D., 198
Moreira-Almeida, A.,
265
Moren-Cross, J., 509
Moretti, S., 544
Morgan, H. G., 197
Morgan, J. P., 617
Morgan, M., 599
Morganstein, D., 612
Morgenstern, J., 439
Mori, D. L., 480
Morioka-Douglas, N.,
406
Morison, L., 645
Morland, K., 150
Morley, J. E., 544
Morokoff, P. J., 134
Morris, E. K., 305
Morris, J. J., 306
Morris, L. B., 499–502,
505, 515
Morrison, R. S., 306, 616
Morrison, T., 127
Morrissey, J. P., 449
Morrow, G. R., 297
Morrow-Howell, N., 42
Mortensen, S. A., 308
Morton, D. L, 187, 201,
306
Morton, K. R., 299
Morton, S., 533
Moscicki, E. K., 192–
194
Moscoso, M. S., 200
Mosher, D., 353
Mosher, D. L., 353
Moskowitz, J. T., 398
Moskowitz, R. W., 405
Moss, A., 474
Moss, A. H., 473
Mostashari, F., 534, 544,
547
Moulopoulos, S. D., 249
Moynihan, R. T., 348
Mucenski, J., 599
Mueller, K. J., 111
Mueller, N. B., 92
Muellerleile, P. A., 130
Mufson, L., 198
Mujais, S., 473
Mukerji, P., 544
Mukherjee, D., 229
Mukherjee, S., 502, 503
Mullan, M. G., 548
Mullings, D., 34
Mullooly, J. P., 250
Mulrow, C. D., 181
Mulsant, B. H., 399
Mulvey, B., 52
Mundy, E., 180
Munro, B., 346, 350
Munson, R., 48
Murabito, J., 240
Murdach, A., 53
Murphey, L. M., 150
Murphy, D. A., 535
Murphy, E. J., 571
Murphy, G. E., 194, 198
Murphy, M., 449
Murphy, S. L., 71, 72,
75, 145, 146, 148,
192, 533
Murray, A., 90, 244, 474
Murray, C. J., 151
Murray, M. F., 571
Murray, M. T., 308
Murray, T., 503
Murri, R., 536, 547
Musick, M. A., 171
Mussolino, M. E., 75
Mustian, K. M., 297
Mustillo, S., 72
Myrick, H., 438
Nabi, H., 71
Nacman, M., 11, 14
Nadeem, E., 205
Nadel, T., 613
Nadine, T., 507
Nahin, R. L., 292, 294
Najavits, L. M., 449
Najman, J. M., 130
Nakae, M., 448
Nakashima, M., 282,
283
Naliboff, B. D., 544
Nanda, R., 571
Nangaku, M., 473
Nanin, J. E., 358
Nanni, C., 251
Napoleone, S., 348
Narod, S., 507
Narrow, W. E., 181, 190
Nash, R. E., 130
Nason, F., 21, 34
Natale, D. K., 616
Natelson, B. H., 174
Nathan, P. E., 548
Nathanson, I., 415
Navalta, C. P., 153
Naveh, G., 173
Naylor, M. D., 411, 412
Nazareth, I., 193, 356
Nazarian, L. F., 249
Nazmi, A., 72
Neff, N., 302
Neglia, J. P., 509
Neighbors, H. W., 172,
192
Neimeyer, R., 508
Nelson, A. R., 70, 116,
632
Nelson, C. B., 179, 180,
190
Nelson, D. E., 531
Nelson, R. G., 151, 531
Nelson-Becker, H., 282,
283, 509
Nemeroff, C. B., 153,
204, 205
Nesbit, M. E., Jr., 509
Nesbitt, T. S., 615
Author Index.indd 667Author Index.indd 667 9/21/11 7:56 PM9/21/11 7:56 PM
668 Author Index
Ness, J., 306
Nesse, R., 172
Netting, E. F., 410, 416
Netting, F., 53
Neufi eld, J. A., 353
Neugarten, B., 331
Neuhauser, L., 413
Neuman, K., 56, 355
Newacheck, P. W., 375
Newcomb, K., 177
Newhouse, J. P., 104
Newhouse, P. A., 355
Newman, A., 508
Newman, B., 152
Newman, M. F., 543–
545
Newman, N. W.,
503–505
Newmark, M., 175
Newport, D. J., 153
Newton, K. M., 530
Newton, P., 306
Neyman, N., 500, 503,
517, 598
Ng, D. M., 165
Ngo, D., 408
Ngo, V. M., 205
Ni, H., 294
Niederwieser, G., 361
Nielsen-Bohlman, L.,
534
Nielson-Bohlman, L.,
572
Niemeijer, M. F., 580
Nishi, T., 473
Nishimoto, R., 506
Nixon, R. D. V., 177
Nnorom, I. C., 89
Nock, M. K., 193
Noh, S., 172, 173, 201
Nohr, L., 508, 510
Noonan, D., 292
Norcross, J. C., 201,
445, 446
Norem, J. K., 572
Norlock, F. E., 291–295,
298
Norman, S. A., 130
Northouse, L. L., 245
Northouse, P. G., 245
Norwitz, E. R., 152
Nowicki, J., 170
Nugent, R. P., 433, 434
Nunes, E. V., 449
Nussbam, J., 478
Nutt, D. J., 203–205
Nutter, D. E., 353
Nygren, P., 503
Oakes, J. M., 64, 76, 77
Oates, J., 249
Oberlander, J., 112
O’Brien, B., 536
O’Brien, C. P., 428, 429,
438, 441, 442, 447
O’Brien, K., 444, 448
O’Brien, L., 7
Obrosky, D. S., 544
O’Connell, J. J., 190
O’Connell, T. S., 355
O’Connor, C. M., 473
Oddy, J., 546
Odgen, C. L., 374
O’Donnell, C., 618
O’Donnell, P., 618
Oeffi nger, K., 509
O’Farrell, T. J., 449
Offi t, K., 580
Ofsthun, N., 480
Oftedahl, E., 374
Ogden, C. L., 73, 74
O’Grady, C., 571
Ogunseitan, O. A., 89
Oh, A., xv
Oh, K. H., 472
O’Hailin, A., 166
Öjehagen, A., 197
Oken, S. L., 54
Oktay, J., 576, 582
Oktay, J. S., 409
Olajide, D., 545
Oldridge, N. B., 131
Olff, M., 205
Olfson, M., 198, 396
Oliver, D. P., 644
Olivet, L., 305
Olivo, A., 157
Olkin, R., 227, 321
Olmsted, M. P., 536,
544
Olopade, F., 563
Olopade, O., 90, 244,
501, 518, 563
Olopade, O. I., 571
Olsen, M. L., 21
Olshansky, S., 227
Olson, D. M., 406
Olson, L., 77
Olson, M. M., 348
Olvera, R., 166
O’Malley, S. S., 443
Oman, D., 273–275
O’Neill, G., 515
Ooort, F. J., 248
Operskalki, B., 198
Opjordsmoen, S., 356
Orav, E. J., 190
Orbell, S., 130
Orelans, C. T., 181
Orfi eld, G., 144
Organista, K., 507, 575
Organista, K. C., 407
Ormond, B. A., 117
Ornish, D., 308
Orr, L., 144, 147
Orszag, P. R., 119
Orth, J. E., 249
Osborn, D., 193
Ösby, U., 198
Osgood, N., 398
O’Shaughnessy, M. V.,
167, 545
Osibanjo, O., 89
Ostermann, H. J., 357
Ostir, G. V., 166
Otis-Green, S., 595,
597–598, 605, 606,
608, 617–619
Ott, S. H., 564
Ouimette, P., 183
Owen, J. H., 197
Owens, D., 278
Owings, J. T., 307
Oza, S., 151
Ozden, G., 299
Ozkahya, M., 361
Ozminkowski, R. J., 109
Paans, A. M. J., 353
Pachter, L, 295, 303
Pachter, L. M., 238
Padgett, D. K., 567
Padmanaban, D., 297
Padula, J. A., 134
Paik, A., 148, 150
Painter, J., 402
Painter, N. S., 308
Palacio-Mejia, L. S.,
150
Palacios, R. B., 435
Palinkas, L. A., 90
Palmer, J. L., 293, 502
Palmer, R. S., 442, 443,
448
Pan, C. X., 306, 407,
408
Pandey, S., 154
Pandya, K. J., 599, 610,
615, 616
Paniagua, R., 473
Panteli, V., 299
Panzer, A., 534
Panzer, A. M., 572
Papasouliotis, O., 454,
455
Pargament, K. I., 268–
270, 274
Parish, K. L., 361
Park, C. L., 273–276
Parker, E. A., 159, 252
Parker, F. L., 153
Parker, R. M., 572
Parker-Oliver, D., 614
Parks, G. A., 446
Parks, S., 292
Parmley, W. W., 172
Parrinello, G., 546
Parry, C., 411–413
Parsonnet, L., 346, 348,
362, 363
Parsons, E., 577
Parsons, J. T., 358, 444,
448
Parton, N., 46
Parva, M., 434
Pasero, C., 601
Pasnau, R. O., 187
Passel, J. S., 109
Passik, S. D., 438, 439,
615
Patenaude, A., 507, 577,
580
Patijn, J., 613
Patiraki, E., 299
Patmios, G., xv
Patrick, A. R., 198
Patrick, D. L., 177, 608
Pattenden, J., 446
Patterson, J., 506
Patterson, M. E., 410
Patterson, R. E., 241
Patton, K. E., 548
Author Index.indd 668Author Index.indd 668 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 669
Paulozzi, L. J., 438
Pavanetto, M., 307
Pavao, J., 68
Paxton, A., 276
Payne, R., 616
Payne, R. A., 549
Peake, M., 509
Pearce, J. K., 332, 336
Pearcy, J. N., 172
Pearl, M., 147
Pearlman, L., 385
Pearson, J. L., 194
Pearson, M., 509
Pearson, V. I., 400, 403
Pedrelli, P., 180
Peek-Asa, C., 68
Peelle, A., 535
Pekow, P., 482
Pelleier, R. P., 470
Pelletier, K. R., 311
Pelletier-Hibbert, M.,
474
Pelligrino, E., 609
Pence, G., 54
Penedo, F. J., 534
Penn, J. V., 196
Penn, P., 324
Perales, D., 448
Percival, C., 148
Percival, T., 48
Perez, M., 598
Pérez Foster, R. M., 515
Perez-Lopez, D., 109
Periera, J., 350
Perlman, H. H., 167
Perwien, A. R., 536
Pescosolido, B. A., 240
Peters, E., 572
Peters, J. A., 577–578
Peters, J. L., 544
Peters, K., 155
Petersen, L., 509, 514
Petersen, S., 190, 446
Peterson, C., 127
Peterson, R., 472
Peterson, R. A., 472,
473
Petrak, F., 548
Petry, S., 327, 340
Pettitt, D. J., 151, 531
Petty, F., 180
Peyrot, M., 547, 548
Pezzin, L. E., 403
Pfeffer, C. R., 193, 194,
196–198
Pfeiffer, D., 220
Phadera, L., 115
Phair, J. P., 532
Pharoah, P., 507
Phelan, J., 500
Phelan, K. J., 75
Philipson, T. J., 151
Phillips, R. B., 305
Piacentini, J., 176
Piantadosi, S., 505,
514, 599
Pickett, K., 147
Pickett, K. E., 73, 152
Pietroni, P. C., 296, 297
Pignone, M., 187, 188,
190, 191, 194, 199
Pignone, M. P., 181
Pinderhughes, E., 170,
171
Pineda, J. A., 435
Pinkerton, P., 474
Pinquart, M., 403
Pintar, T., 471
Piotrowski, Z. H., 152
Pirsch, J. D., 471
Pitceathly, C., 248
Pizzo, P. A., 509
Pizzorno, J., 308
Placidi, G. F., 544
Platt, F. W., 252
Pleck, J. H., 154
Pleis, J. R., 145, 146
Plescia, G., 194
Plissner, M., 111
Podolsky, D., 307
Pokorny, A. D., 456
Polcari, A., 153
Polen, M., 54
Poling, K., 198
Politi, M., 506
Polk, S., 532
Pollack, B., 605
Pollack, H., 149, 160
Pollin, I., 548
Pollin, I. S., 548
Pollin, T. I., 564
Pollock, M. L., 618
Pomeroy, W. B., 345,
354
Pompili, M., 198
Pond, A., 266
Ponder, P., 92
Poniatowski, B. C., 362
Pontious, S. L., 304, 308
Poon, L. W., 398
Popelyuk, D., 193
Popham, F., 71
Poppel, D., 482
Port, F. K., 476
Portenoy, R., 615
Portenoy, R. K., 613
Porter, D., 48
Porter, K., 532
Porter, N., 145
Porter, R., 48
Porter, R. S., 500, 502
Portera, L., 545
Posner, R. A., 151
Postlethwaite, R. J., 361
Post-White, J., 200
Potter, J. D., 509
Poulton, R., 585
Pouwer, F., 546
Powe, N. R., 17, 246,
247, 473, 474, 479
Powell, L. H., 273, 275,
276
Powell, W. E., 415
Powell-Griner, E., 292,
294
Powell-Griner, E. E., 529
Pozzuto, R., 619
Prager, D. J., 244
Pratt, L. A., 545
Pratt, N., 546
Prenger, R., 200
Prescott, C., 429
Prescott, M. R., 435
Presler, E., 117
Prevost, A. T., 572
Price, T. S., 565
Prince, R., 548
Pringle, M., 545
Prins, A., 183
Prochaska, J. M., 134,
445, 446
Prochaska, J. O., 134,
201, 445–446
Proctor, B. D., 103
Proctor, E., 42
Pruet, R., 361
Pryjmachuk, S., 196
Psaty, B. M., 310
Puchalski, C., 280, 598
Puchalski, C. M., 280
Pud, D., 299
Pulley, L., 241
Pynoos, R., 204
Pynor, R., 348, 356
Qaseem, A., 278
Quigley, R., 76
Quill, T., 229
Quinn, J. F., 305
Quinn, K., 511, 608
Rabe-Hesketh, S., 548
Rabin, C., 540
Rabin, L., 431
Rabins, P., 195
Rabkin, J., 361
Rabow, M., 506
Rabung, S., 204
Radomsky, N. A., 353
Rae, D. S., 181, 190
Rai, A. K., 193, 194
Raina, P., 615
Raiz, L. R., 482
Raj, A., 68
Raiz, L. R., 482
Raleigh, E. H., 398
Rambo Chroniak, K., 200
Ramesh, S., 318
Ramgopal, R., 543
Ramirez, G., 187, 188,
190, 191, 194, 199
Ranchand, R., 109
Rando, T. A., 635, 636
Randolph, J., 23, 245
Rangel-Gomez, G., 150
Ranjit, N., 872
Rao, J. K., 250
Rapp, R., 579
Rappaport, B., 21
Rathus, J. H., 198
Rattenbury, J., 304, 305
Ratzen, S. C., 572
Raube, K., 101
Rauber, C., 311
Rauch, S., 204
Raudenbush, S. W., 152
Raue, P. J., 399
Rauh, V. A., 153
Raveis, V., 510, 516
Raveis, V. H., 348
Raymer, M., 619, 637
Rayner, H. C., 476
Author Index.indd 669Author Index.indd 669 9/21/11 7:56 PM9/21/11 7:56 PM
670 Author Index
Reamer, F., 42–44, 49,
50, 53–56
Reamer, F. G., 15
Rebbeck, T., xv
Rebbeck, T. R., 507
Rebolledo, A., 152
Redd, W. H., 307
Redding, C. A., 134
Reddy, S. S., 473
Reder, E. R., 598
Redinbaugh, E. M., 599
Redwood, Y., 159
Reed, B. G., 449
Reed, G., 333
Rees, K., 200
Rees, M. A., 470
Reese, D. J., 618, 637
Reese-Weber, M., 345
Regier, D., 176
Regier, D. A., 181, 190
Rehkopf, D. H., 72, 77
Rehr, H., 22, 26, 644
Rehwaldt, M., 604
Reibel, D. K., 200
Reichard, R. R., 435
Reichman, M. E., 69
Reid, W. J., 15
Reidpath, D. D., 150
Reinert, D. F., 455
Reisberg, B., 405
Reischl, T., 275
Reiss, D., 326, 331
Remafedi, G., 193
Renner, J. H., 293, 296
Renzenbrink, I., 619
Resnicow, K., 276
Resnik, D. B., 570
Reuben, D. B., 395
Reynolds, C. F., 399
Reynolds, J. M., 361
Rhoades, J., 414
Rhoades, J. A., 399
Rhodes, J., 352
Rhodes, L., 529
Ricca, V., 544
Ricci, J. A., 612
Richards, M. P. M., 572
Richardson, J. L., 507,
516, 546
Richardson, M. A., 293,
300, 502
Rich-Edwards, J. W.,
152
Richman, S. P., 616
Richmond, M., 167
Rickel, A. U., 375
Ricketts, G. D., 396
Rieckmann, N., 547
Riedner, C., 280
Riensma, R. P., 446
Ries, L., 374
Ries, L. A. G., 172, 500
Riet, G., 301
Rietschel, M., 565
Riggs, D., 204
Rihmer, Z., 544
Rimer, B. K., 126
Rimsza, M. E., 355
Rintala, D. H., 226
Risch, H., 507
Risch, N., 565
Rivara, F., 444
Rivera, P., 227
Rivera-Mizzoni, R., 477
Roak, R. A., 361
Robbins, C., 643, 644
Robbins, D. C., 531
Robbins, J. A., 542
Robert, S. A., 155
Roberts, C. S., 35, 243,
245, 248
Roberts, D., 105
Roberts, J., 333
Robertson, K. R., 545
Robertson, M. M., 127
Robins, C., 543–545
Robinson, B., 405
Robinson, J., 197
Robinson, J. N., 152
Robinson, K., 275
Robinson, M., 409, 410
Robison, L. L., 509
Robson, M. E., 507
Rocha, D., 479
Roche, B., 645
Rock, B. D., 23
Röcklinsberg, H., 264
Rodehaver, C. B., 306
Rodin, G., 506, 536
Rodin, G. M., 544
Rodriguez, G., 576, 582
Roesch, S., 334
Roesch, S. C., 331
Roff, S., 592
Roger, V. L., 151
Rogers, C., 54
Rogers, G., 546
Rogers, R. G., 155
Rogge, M., 535, 541
Roglic, G., 531
Rogowski, J., 72
Rohan, E., 509
Rokeach, M., 43
Rolland, J., 220, 318,
324, 329, 336, 338
Rolland, J. S., 33, 164,
170, 199, 200, 203,
318–325, 329, 331,
333, 338, 506, 515, 577
Rollins, D. E., 433, 434
Rollins, J., 380
Rollnick, S., 54, 201,
443, 444, 457
Romano, M., 35, 482
Romanofsky, P., 5
Romer, A. L., 280
Ronan, A. M., 299
Ronningen, A., 613
Rooney, G. D., 125
Rooney, R. H., 125, 185,
190, 199, 252, 440
Root, L, 480
Root, L. M., 275
Rose, G. S., 444, 445,
448
Rose, M., 21
Rose, R. J., 558, 565
Rose, S. D., 619
Roseman, J. M., 531
Rosen, A. J., 125
Rosen, N., 196
Rosen, W., 188, 189,
435
Rosenbaum, S., 109
Rosenberg, A., 205
Rosenberg, C. E., 4
Rosenberg, G., 644
Rosenberg, J., 348, 356
Rosenfeld, B. D., 615
Rosenheck, R. A., 546
Rosenquist, J. N., 240
Rosenstock, I. M., 128
Rosenthal, E., 238
Rosenthal, M. B., 108
Rosenthal, M. J., 544
Rosenzweig, S., 200
Rosetti, F., 307
Rosholm, J. U., 194
Rosich, R. M., 407
Rosman, S., 505
Rosner, B. A., 354, 362
Rosner, M. H., 469
Rosof, E., 444, 448
Ross, J. L., 478
Ross, J. W., 411,
643–645
Ross, L. F., 581
Rossi, J. S., 134
Rossi, P., 414
Rossouw, J. E., 529
Ross-Sheriff, T., 83, 84
Rotella, C. M., 544
Rotella, F., 544
Roter, D., 17, 246, 247
Roter, D. L., 248,
250, 253, 537, 539,
541–542
Rotgers, F., 447
Roth, C., 198
Rothman, J., 484
Rounds, K., 83, 84
Rounds, K. A., 64, 76,
249
Rounsaville, B., 443
Rounsaville, B. J., 442,
444
Rowan, E. L., 353, 363
Rowe, C. L., 448
Rowland, D. L., 362
Rowland, J. H., 374
Rowland, M. D., 448
Roy, K., 578
Roy, R., 592, 619
Rozanski, A., 546
Rubel, A. J., 241
Rubenfeld, G. D., 608
Rubenstein, B., 508, 511
Rubin, H., 479
Rubin, H. R., 473, 474
Rubin, L., 331, 572
Rubin, R. R., 546–548
Ruccione, K., 507, 509
Rudd, M. D., 196
Ruderman, M., 77
Runnerstrum, M. G., 84
Rushton, J. L., 181
Russ, A. J., 474
Russell, C., 616
Russell, C. L., 476
Russell, D., 352
Russell, J. M., 193–198
Russell, S. T., 193
Author Index.indd 670Author Index.indd 670 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 671
Russo, J., 547
Russo, J. E., 544, 546,
547
Russo, R., 485
Rust, K. F., 528
Ruth, B. J., 90
Rutkowski-Kmitta, V.,
220
Rutland, C., 605, 617
Rutter, C., 197
Rutter, M. E., 470
Ruzek, J., 204
Ruzek, J. I., 449
Ryan, G., 344
Ryan, K., 385
Ryan, M. C. M., 546
Rydall, A., 506
Rydall, A. C., 544
Ryujin, L., 128
Saad, M. F., 151, 531
Saah, A. J., 532
Sabia, S., 71
Sacchetti, E., 546
Sachs, G. A., 615
Sachs, L., 580
Sacks, T., 90, 501, 518,
563
Sadler, G. R., 128
Sadowski, L. S., 146,
158
Saftlas, A. F., 68
Sagi, M., 573
Saha, S., 247
Salazar, W. H., 252
Saleebey, D., 178
Salett, E., 85
Salmon, P., 200
Salzer, S., 204
Samant, R., 537
Sampson, S., 409, 410
Samuel, J. C., 348
Sanbonmatsu, L., 144,
147
Sanchez, H. G., 193
Sanchez, K., 507, 516
Sanchez, V. C., 457
Sanders, G., 449
Sanders, T., 293, 502
Sandford, J., 199, 200
Sando, W., 307
Sands, R. G., 245, 246
Sankar, P., 565
Sannerud, C., 438, 616
Sannes, M., 532
Sansone, L. A., 352
Sansone, P., 352
Sansone, R. A., 352
Santiago, J. V., 534,
535, 538, 539, 541
Santoro, N., 354
Saperstein, G., 605
Saphores, J.-D. M., 89
Saraceno, B., 173
Saran, R., 476
Sarason, I. G., 405
Sarkisian, C. A., 276
Satel, S., 565
Satin, D. G., 246
Satz, D., 150
Saunders, C., 594, 619,
628
Saunders, J. B., 454, 455
Saunders, L. A., 454, 455
Savage, A., 449
Savage, D., 32
Savage, P. J., 531
Savage, S. R., 438, 439
Savage, T. A., 229
Savarino, J., 198
Saver, B. G., 95
Sax, P. E., 533
Saxe, L., 190
Saxena, S., 531
Saydah, S., 528
Scafi di, F., 306
Scarlata, D., 478
Schacter, C. L., 353
Schanberg, S. M., 306
Scharf, M. J., 307
Schatell, D. R., 470
Schechter, C. F., 130
Scherwitz, L., 249
Scherwitz, L. W., 308
Schezel, G. W., 130
Schild, S., 557
Schilling, R. F., 439–441
Schimmelmann, B. G.,
565
Schinkel, A. M., 539
Schirop, T., 21
Schlich-Bakker, K. J., 575
Schlundt, D., 535, 543
Schmais, L., 301
Schmaltz, S. P., 101
Schmid, T., 74
Schmidt, E., 196
Schmidt, E. Z., 361
Schmitt, R., 309
Schmitz, M., 449
Schmitz, N., 544
Schneeweiss, R., 128
Schneeweiss, S., 198
Schneid, J. A., 608
Schneider, B., 309
Schneider, J., 249
Schneider, M.-J., 64, 78
Schneider, M. S., 476
Schneider, S., 166
Schneiderman, N., 155
Schnitt, S. J., 354, 362
Schnoll, S. H., 435, 438,
453, 454
Schnur, J. B., 307
Schnurr, P. P., 205
Schoenbaum, E. E., 166,
167, 187, 536, 547
Schoener, G., 55
Schoeni, R. F., 149, 160
Schoenwald, S. K., 448
Schoevers, R. S., 615
Scholten, R., 295
Schondel, C., 509
Schooler, C., 69
Schootman, M., 72
Schottenfeld, R. S., 443
Schouten, H. C., 613
Schover, L. R., 343,
348, 353, 360, 362,
363
Schrager, L. K., 532
Schuckit, M. A., 430
Schuhmann, E. M., 177
Schulenberg, J. E., 456
Schulman, K. A., 247,
530
Schultz, A., 557
Schultz, A. J., 159, 252
Schulz, A. J., 159
Schulz, R., 598
Schumacher, M., 544,
546
Schuman, P., 166, 167,
187
Schumm, L. P., 571
Schuster, J. L., 335, 694
Schwab-Stone, M. E.,
176
Schwankovsky, L., 251
Schwartz, J. S., 571
Schwartz, L. R., 572
Schwartz, S., 173
Schwartzbaum, J. A., 543
Schweitzer, S. O., 402,
405
Schwerwitz, L. W., 308
Scoppa, S., 374
Scott, A. B., 267, 268
Scott, J. A., 299
Scott, J. E., 128
Seaburn, D., 318, 327,
336
Seal, K. H., 180, 448
Seamon, V. J., 481
Seaward, B. L., 306
Seckl, J. R., 563
Seeff, L. B., 188
Seeman, T., 275, 401
Seeman, T. E., 72
Seerman, D., 232
Segal, S. P., 34
Segerstrom, S. C., 165
Segey, D. L., 470
Sehrawat, S., 614
Seigler, M., 53
Sejwacz, D., 130
Selan, K., 13
Selby, P., 179
Seligman, M. E. P., 127
Selzer, M. L., 456
Sember, R., 69
Semlyen, J., 193
Semmel, A., 127
Sen, S., 180
Senzel, R. S., 616
Sephton, S. E., 187,
200, 201
Sewell, G., 548, 549
Sewell, M., 361
Shaffer, D., 176, 193,
194, 196–198
Shah, N. G., 435
Shah, P. N., 395
Shahabi, L., 273, 275,
276
Shakespeare, T., 224
Shalev, A. Y., 203, 204
Shanley, S., 580
Shannon, S. E., 608
Shapiro, A. A., 89
Shapiro, J., 220, 221
Shapiro, M., 177, 533
Author Index.indd 671Author Index.indd 671 9/21/11 7:56 PM9/21/11 7:56 PM
672 Author Index
Sharma, S., 563
Sharp, V., 247
Sharrard, W. J., 308
Shaver, P., 343
Shavers, V., 500
Shaw, C., 572
Shaw, J., 193, 194,
196–198
Shaw-Hegwer, J., 183
Shea, S. C., 184
Sheafor, B. W., 125
Sheeran, P., 130
Sheets, P., 245
Shega, J. W., 615
Sheidler, V. R., 599
Sheikh, A. A., 605
Sheikh, J. I., 183
Shekelle, P., 278
Shelby, J., 383
Sheldon, F. M., 619
Shell, J. A., 357
Shellenberger, S., 577
Shellengerger, S., 281
Shelton, J., 564
Shenkman, E., 382
Shepherd, L., 230
Sheps, D. S., 174
Sherbourne, C. D., 177,
203, 204, 405
Sherman, A. M., 402
Sherman, R., 598
Sherwood, A., 543–545
Shibusawa, T., 22, 176,
449
Shih, R. A., 558
Shilds, G., 509
Shim, J. K., 474
Shimbo, D., 547
Shimoyama, H., 473
Shin, H., 599
Shine, D., 617
Shiono, P. H., 433, 434
Shipley, M., 71
Shochet, T., 68
Shontz, F., 223
Shrout, P. E., 173
Shuldiner, A. R., 564
Shulman, L. C., 348
Sicree, R., 531
Siddiqui, N., 76
Sidell, N., 509
Sideris, D. A., 249
Sidney, S., 72
Siefert, K., 173, 190
Siegal, B., 478
Siegel, G., 309
Siegel, K., 348
Siegel, R., 503
Siegfried, N., 241
Siegler, I. C., 398
Sieppert, J. D., 619
Sigo, R. L. W., 159
Sikkema, K. J., 546
Sikon, G. M., 481
Silbergleit, I.-L., 608
Silberman, J., 543
Silberner, J., 307
Silva, S., 198
Silverman, B., 353
Silverman, J. G., 68
Silverman, P. R., 631
Silverman, S., 446
Silverstein, J., 307
Silverstein, J. H., 536,
605
Silvestri, B., 150
Simile, C., 294
Simm, M., 435, 436
Simmens, S., 318
Simmens, S. J., 472, 473
Simmons, W. J., 34
Simon, G., 197, 547
Simon, G. E., 198
Simon, L. N., 335
Simon, R., 55
Sims, S., 305
Sinclair, S. J., 84
Singal, B., 545
Singer, L. T., 435
Singh, G. K., 69
Singh-Manoux, A., 71
Singletary, S. E., 293, 502
Sipski, M., 353
Sisco, S., 90
Siskou, O., 471, 474
Sistrunk, S., 247, 530
Sivak, S., 309
Sivell, S., 572
Sjoblom, P., 354
Skaife, K., 352
Skerman, H. M., 130
Skillings, A., 307
Skinner, H. A., 456
Skinner, K. M., 180180
Skipper, J. J., 249
Sklar, C., 509
Skloot, R., 59, 571, 579
Skocpol, T., 112
Skokan, L., 333
Skretny, J., 506
Skutezky, T., 435
Slade, J., 431–434
Slaghter, V., 345
Slater, T., 75
Sleath, B. L., 410
Sleep, J., 305
Sloan, L. E., 205
Sloman, R., 306
Slomski, A. J., 254
Slovic, P., 572
Sluijs, E., 535
Smedley, B. D., 70, 116,
632
Smetana, J., 130
Smets, E., 571
Smets, E. M., 248
Smit, J. J., 615
Smith, A., 179
Smith, B. A., 480
Smith, D., 571
Smith, E., 514, 517
Smith, E. D., 505
Smith, G., 109, 266
Smith, J., 413
Smith, J. A., 580
Smith, J. E., 449
Smith, M., 534
Smith, M. W., 68
Smith, R., 152, 500
Smith, T. W., 267
Smith, V., 105
Smith-Rogers, A., 535
Smolinski, K. M., 644
Smyer, M. A., 405
Smyth, N. J., 193–197
Snoek, F. J., 546, 548
Snow, L., 240
Snow, V., 278
Sobel, S., 578
Sofuoglu, M., 434
Sohi, P., 474
Sohmer, D., 70, 90, 244,
563
Solaro, C., 613
Solecki, R. S., 309
Solomon, D. H., 198
Soloway, C. T., 350
Soloway, M. S., 350
Somer, D., 501, 518
Somers, V. K., 151
Sommers, J. P., 414
Sommers, L. S., 23, 245
Son, B. K., 472
Sondik, E. J., 374, 527
Sonenstein, F. L., 154
Sonnega, A., 179, 180
Sonosky, C., 109
Sontag, S., 332, 503
Sonuga-Barke, E. J. S.,
565
Sooman, A., 150, 156
Sörensen, S., 403
Sorenson, H. T., 21
Sori, C., 508
Sormanti, M., 22, 175,
619
Soule, D. N., 151
Sourani, T., 331
Sowden, A. J., 446
Spadlin, D., 352
Spangler, L., 579
Sparber, A., 292
Speck, P., 599, 618
Spector, R., 239
Spector, W. D., 403
Spencer, R., 190
Spiegal, N., 250
Spiegel, D., 187, 201,
505, 510, 511
Spieth, L. E., 176
Spilka, B., 274
Spillman, B. C., 403
Spiridigliozzi, G. A.,
581
Spirito, A., 196
Spitzer, W. J., 355
Spivak, H. B., 348
Sporer, A. K., 68
Sprangers, M. A. G.,
226
Springer, K. W., 318,
337
Spritzer, K., 70
Spurlin, P., 46
Stacey, D., 537
Stafanini, G., 546
Stafford, J., 245, 246
Stalker, C. A., 353
Stanley, S., 359
Stanton, A., 506
Staplin, L., 400, 401
Starace, F., 536, 547
Author Index.indd 672Author Index.indd 672 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 673
Stark, D., 179
Stark, M. J., 444, 448
Starr, P., 110–112
Stassen, H. H., 187, 198
St. Clair, P., 533
Stearns, N., 518
Stearns, N. N., 503–505
Steele, J., 444, 448
Steele, R. G., 534
Stegbauer, T., 448, 450,
456, 457
Stein, B. D., 205
Stein, J., 410, 534
Stein, J. A., 449
Stein, J. B., 448, 450,
456, 457
Stein, M. B., 180
Stein, M. D., 432
Stein, W., 615
Steinberg, A., 204
Steinglass, P., 326
Steketee, R. W., 533
Stellar, E., 165
Stempel, R. R., 361
Stepanek, M. J. T., 385
Stephens, R. S., 433,
434, 437
Stephenson, L. N., 305
Steptoe, A., 175
Sterling, P., 165
Sterling, S., 441
Stern, J. S., 307
Sternbach, R. A., 605
Stevens, J. A., 438
Stevens, W., 249
Stewart, J., 174
Stewart, J. A., 599, 610,
615, 616
Stewart, K., 380
Stewart, M., 249
Stewart, N., 608
Stewart, S. M., 166
Stewart, W. F., 612
Stiles, W. B., 249
Stine, S. M., 436, 438
Stinson, F. S., 432
Stites, D. P., 187, 201
Stites, M. A., 11
Stith, A. Y., 70, 116, 632
Stoddard, J. L., 150
Stokols, D., 84
Stolley, P. D., 130
Stone, G., 125
Stone, J. H., 374
Stone, M. A., 544
Stone, P., 548
Stopfer, J., 571
Strader, D. B., 188
Stratton, K., 431
Strauman, T., 543–545
Street, A., 545
Street, A. E., 68
Street, R. L., 242
Strelkauskas, A. J., 305
Streuning, E., 190
Strik, J., 179
Strike, D. M., 196
Strine, T. W., 544
Stringhini, S., 71
Strobino, D. M., 527
Strom-Gottfried, K.,
54–56, 125
Strouse, T., 297, 299
Struewing, J. P., 575
Stuart, E., 306
Stuart, E. M., 306
Studenski, S., 508
Studts, J. L., 200
Stueve, A., 173
Stump, T. E., 396
Stussman, B. J., 292
Stutts, J., 400, 401
Su, M., 153
Subramanian, K., 619
Subramanian, S. V.,
72, 77
Sucoff, C. A., 154
Sugden, K., 585
Sullivan, L. M., 180
Sullivan, M. J., 293, 300,
301, 308, 309, 615
Sulman, J., 32
Sulmasy, D., 598
Sundquist, K., 349
Supiano, K. P., 68
Surís, A., 180
Surtees, P. G., 545
Susser, E. S., 180
Sussman, S., 150
Sutcliffe, M. L., 308
Sutton, P. D., 72, 75
Sutton, S., 572
Sveen, L., 571
Svennson, E., 613
Swazey, J. P., 471, 479
Swedeen, K., 599
Sweeney, L., 177, 488
Sweetman, J., 172
Switzer, J. V., 231
Swyers, J. P., 268–271
Symons, R., 152
Syrjala, K. L., 307, 603,
604
Szabo, C. I., 507
Szapocznik, J., 448
Szczech, L. A., 473
Taal, E., 200
Tai, S. S., 193
Tai, W., 362
Takaki, J., 473
Takeda, W., 300
Takeuchi, D., 172
Taleporos, G., 349, 353,
356, 357
Taler, G., 410
Talley, R. C., 414
Tan, G., 357
Tang, L., 166
Tanner, C. M., 613
Tanner-Smith, E. E., 128
Tanney, M., 535
Tanskanen, A., 198
Tanyi, R. A., 349
Tapert, S., 430
Tardiff, K., 545
Tardiff, K., J., 435
Tarone, R., 500
Tarzian, A. J., 610, 615
Taub, K., 472, 473
Taylor, A., 585
Taylor, B., 351
Taylor, C., 618
Taylor, E., 301
Taylor, L., 76, 291, 294,
295, 311, 375
Taylor, S., 333, 334
Taylor, S. E., 166
Taylor, W. C., 72
Taylor-Brown, S., 583
Teare, R., 32
Teasdale, J. D., 127
Teicher, M. H., 153
Teitelbaum, I., 472
Tejada-Vera, B., 71, 72,
75, 145, 146, 148,
192
Tejpar, S., 507
Teng, M., 480
Ten Have, T., 197, 399
ten Kroode, H. F. J., 575
Tentler, A., 543
Teram, E., 353
Teresi, J., 405
Teri, L., 405
Terr, A. I., 187, 201
Testerman, J. K., 299
Thakker, J., 436
Thakore, J. H., 546
Thaler, H., 615
Thaler, H. T., 613
Thampi, K., 190
Thase, M. E., 203, 204
Thawley, R., 448
Thayer, P., 384
Thefeld, W., 544
Theodorou, M., 471, 474
Thomas, A., 353
Thomas, C., 584
Thomas, D. L., 188
Thomas, L. A., 68
Thomas, L. R., 159
Thomas, S., 144, 158
Thomas, T., 511, 608
Thompson, L. A., 382
Thompson, S., 331, 333,
509, 534, 535
Thompson, S. C., 251
Thompson, S. J., 21
Thomson, R., 221
Thoreson, C. E., 273–
276
Thorning, H., 200
Thorpe, L. E., 544, 547
Thorson, A. I., 361
Thrope, M., 410
Thun, M., 500, 503
Thun, M. J., 172
Tibben, A., 580
Tiihonen, J., 198
Tilden, V., 502
Tilly, C., 131
Tilton, M. C., 226
Timberlake, D. S., 69,
92
Tinetti, M., 508
Ting, H. H., 151
Tirrito, T., 415
Tolle, S., 502
Tollefson, D., 444, 448
Tomany-Korman, S.
C., 77
Author Index.indd 673Author Index.indd 673 9/21/11 7:56 PM9/21/11 7:56 PM
674 Author Index
Tombrink, J., 361
Tomenson, B., 148
Tondo, L., 198
Tonigan, J. S., 443, 444,
448, 457
Toobert, D. J., 534, 535,
538
Toran, J., 175
Torpy, D. J., 152
Torres, L., 436
Tortu, S., 435, 436
Toumanidis, S. T., 249
Touyz, S. W., 177
Townsend, J., 305
Townsend, M., 150
Towsley, G. L., 203
Toyonaga, T., 356
Tran, T. V., 408
Traphagan, J. W., 171
Trattner, W., 220
Travis, G., 243
Treece, P. D., 608
Trent, J., 221
Trieschmann, R., 231
Trinidad, S. B., 579
Tripp. T. J., 180
Trivieri, L., 292, 301,
302, 304, 305, 307,
309
Troesch, L. M., 306
Tromp-Wever, A. M.,
548
Trotta, M. P., 536, 547
Truax, P., 405
Trzepacz, P. T., 183–186
Tsai, H., 599
Tsark, J., xvii
Tschopp, M. K., 534
Tsemberis, S., 448
Tsouna-Hadjis, P., 249
Tu, A. W., 435
Tu, W., 396
Tucker, M. A., 575
Tull, E. S., 531
Tulsky, J., 406
Turk, D. C., 533, 535,
538, 540, 541
Turnbull, P., 197
Turner, B., 224
Turner, F. J., 243–245,
248
Turner, K. S., 618
Turner, S., 580
Turrina, C., 546
Twillman, R., 506
Twisk, J. W., 546, 548
Tyndall, J., 199, 200
Ullrich, C. M., 618
Ulrey, K. L., 248
Ulrich, C., 618
Uncapher, H., 398
Underwood, L., 405
Unger, J. B., 401
Unruh, A., 615
Unutzer, J., 197
Uomoto, J., 405
Urdangarin, C. F., 394,
395
Uretzky, G., 21
Uribarri, J., 474, 476
Urv-Wong, E., 405
Uttley, L., 361
Vaillant, G. E., 127
Valdez, R., 473
Valdimarsdottir, H. B.,
575
Valero, V., 616
Vallbona, C., 249
Vanclay, L., 246
Van Craen, K., 395
Van Cutsem, E., 507
VandeMark, N., 449
Van den Berghe, H.,
507, 575
Van den Beulken-van
Everdingen, M. H.
J., 613
Vandenburgh, H., 15, 16
van der Ploeg, H. M.,
548
van der Riet, P., 503,
505
van der Ven, N. C., 548
VanderWeele, T. J., 146,
158
Vandewater, E. A., 402
van Dijk, L., 535
Van Dijk, P. C., 476
Van Dulmen, S., 535
vanElderen, T., 187, 201
Vaneselow, N. A., 409
van Kleef, M., 613
van Meijel, E. P. M.,
205
Van Rompay, M., 292–
295, 297, 300
Van Rompay, M. I., 502
van Rooijen, L., 456
van Ryn, M., 238, 262,
633
Van Soest, M., 196
van Tilburg, W., 615
van Wormer, K., 426
van Zwieten, M., 571
Varady, A. N., 172
Vardas, P. E., 249
Vargas, J., 435
Vasiliaki, E., 444
Vaughn, J., 83, 84
Veenhoven, R., 270
Vega-Lahr, N., 306
Veis, J. H., 472, 473
Velasquez, M. M., 445,
446
Velikova, G., 179
Ventura, S. J., 72, 75
Vergara, S., 435
Verhey, F., 179
Vernon, S. W., 177
Vickers, A., 300, 310
Vinante, O., 307
Vincent, L., 511, 514
Vinicor, F., 531
Vinokur, A., 456
Vinton, L., 415
Virani, R., 598
Visscher, B., 166
Viswanath, K., 126
Vitaliano, P. P., 405
Vitiello, B., 198
Vittinghoff, E., 190
Viviani, F., 307
Vlahov, D., 166, 167,
187, 435
Volkow, N., 428, 429,
438
Volkow, N. D., 438
Voltaire, F., 41
von Baeyer, C., 127
Vonesh, E., 473
Von Gunten, C. F., 618
Von Korff, M., 166, 197,
547
Von Roenn, J. H., 599
von Ryn, M., 17,
247–248
Vorberg, G., 309
Vorchheimer, D., 547
Vourlekis, B., 477
Vourlekis, B. S., 415
Vrijlandt, I., 205
Vuckovic, N., 54
Vukmir, R. B., 150
Vupputuri, S., 276
Waalen, J., 571
Wachter, R. M., 101
Wade, C., 293
Wade, K., 348
Wadhwa, N. K., 476
Wadsworth, B., 580
Waehre, H., 356
Wagener, D. K., 172
Wagner, E. F., 447
Waheed, B., 435
Wahlbeck, K., 198
Wainwright, N. W. J.,
545
Waite, L. J., 20
Wakefi eld, J., 178
Walbroehl, G. S., 360,
361
Waldron, W., 500, 503,
517, 598
Waldrop, D., 506
Walker, A., 446
Walker, A. R., 308
Walker, E. R., 172
Walker, J. R., 344
Walker, R. E., 72
Walker, S., 509
Wall, J. C., 405
Wall, S., 152
Wallace, A., 435
Wallace, J., 507
Wallace, M., 580
Wallenstein, S., 616
Waller, G., 127
Wallin, S., 117
Wallis, A. B., 68
Wallston, K. A., 333
Walser, R. D., 449
Walsh, A., 506
Walsh, F., 171, 203,
319, 324, 327, 333,
336, 506
Walsh, K., 514, 644
Walsh, S., 644
Walsh, T., 83, 84
Walsh-Burke, K., 505
Author Index.indd 674Author Index.indd 674 9/21/11 7:56 PM9/21/11 7:56 PM
Author Index 675
Walter, F., 572
Walters, A. E., 68
Walters, E. E., 193, 502
Wang, C., 159
Wang, P. S., 198
Wang, S. Y., 471, 474,
480
Ward, E., 500, 503
Wardle, J., 175
Ware, J. E., 251, 405
Wareham, N. J., 545
Warnecke, R. B., xv
Warshafsky, S., 309
Warshauer-Baker, E.,
565
Washington, K., 614
Washington, T. A., 16
Waskul, D., 503, 505
Watanabe, T., 356
Waterman, P. D., 72, 77
Watkins, E. L., 68
Watkins, J. F., 203
Watson, L., 506, 512
Watson, M. S., 575, 579
Watson, P., 204
Watson, S. J., Jr., 434
Watt, I. S., 446
Watt, S., 410
Watts, C., 645
Way, S., 32
Weathers, B., 571
Weaver, I. C. G., 563
Weaver, L., 618
Weaver, M. F., 435, 438
Webb, N. B., 376, 380,
385
Webb, R., 197
Webster, R. D., 361
Weech-Maldonado, R.,
70
Weerakoon, P., 348, 356
Weiden, P. J., 546
Weihs, K., 175, 203,
318,
337, 506
Weihs, K. L., 472, 473
Weil, A., 188, 189, 299,
435
Weinberg, D., 572
Weinberg, D. S., 331
Weinberg, R., 502
Weiner, B., 127, 334
Weiner, H., 166
Weiner, L. S., 348
Weiner, M., 352, 353
Weinman, J., 251
Weir, B. W., 444, 448
Weir, H. K., 172
Weiser, M. A., 580
Weisman, S., 189
Weisner, C., 441
Weiss, H. L., 241
Weiss, J., 576, 582
Weiss, L., 472
Weiss, R., 441
Weiss, R. D., 449
Weiss, S. S., 546
Weissbecker, I., 200
Weissgarten, J., 472,
473, 481
Weissman, D., 382
Weissman, M. M., 198,
571
Weissman, N., 576, 582
Welch, C. E., 249
Weldon, A. H., 192
Wells, A., 502
Wells, H., 68
Wells, K. B., 203, 204
Wells, N. E., 193
Wells-Federman, C. L.,
306
Welsh, K. A., 398
Welty, T. K., 531
Weltz, C. R., 307
Wenger, N. S., 291, 294
Wennberg, D. E., 151
Wennberg, J. E., 150,
155, 156
Wermter, A., 565
Werner-Lin, A., 325,
506–508, 511, 512,
571, 572, 577, 578
Werth, J., 509
Wertlieb, D., 539
Wessel, J., 300
West, D. S., 241
West, R., 200
West, R. R., 548
Westerberg, V. S., 443
Weston, W. W., 239, 249
Wetzel, S., 295
Wetzler, S., 198
Wharton, J. C., 301
Wheeler, E., 307
Whitaker, T., 22
White, E., 241
White, J., 32, 34
White, N., 534, 535
White, N. H., 21, 535
White, W. L., 426
White, Y., 474
Whitehead, T. L., 357
Whiteneck, G., 226
Whiting, R., 333
Whittaker, K. E., 353
Whittemore, V. H., 576,
582
Whitt-Glover, M., 72
Wickramarante, P., 571
Widlitz, M., 398
Widner, H., 300
Wieland, D., 394, 395
Wight, V. R., 190
Wiklund, I., 300
Wikstrom, B., 473, 477
Wilbur, J., 150
Wilcox, M., 153
Wilcox, R. E., 428
Wild, S., 531
Wiley, D., 402
Wileyto, E. P., 571
Wilfond, B., 581
Wilkey, S., 292–294,
300
Wilkey, S. A., 293, 297,
502
Wilkins, D. G., 433, 434
Wilkinson, A., 335
Wilkinson, D., 546
Wilkinson, D. S., 64, 76
Wilkinson, R. G., 73
Willett, J. B., 539
Williams, D., 500
Williams, D. R., 172,
173, 190, 431
Williams, J. B. W., 164,
178, 192
Williams, J. K., 324
Williams, J. W., 166,
187, 188, 190, 191,
194, 199
Williams, R. A., 448
Williams, R. B., 155
Williams, S. L., 534
Williams-Russo, P., 75,
143, 149, 165, 173,
175, 244, 246, 256,
500
Wilson, I. B., 247, 249
Wilson, R. S., 613
Wilson, W., 534
Wilson, W. J., 157
Wimberly, S. R., 350
Wind, L. H., 383
Wing, S., 150, 441
Wingo, P. A., 172
Winick, N., 166
Winkel, G., 605
Winkleby, M. A., 172
Winkley, K., 548
Winnicott, D. W., 604
Winsett, R. P., 481
Winslade, W., 53
Winters, K., 172
Wisdom, J., 54
Wiseman, V., 249
Wisneski, H., 193
Witek-Janusek, L., 200
Witkiewitz, K., 447, 448
Witten, B., 470, 478,
485
Wittenberg-Lyles, E.,
614
Witter, D., 503
Wittman, J., 488
Wolf, L. E., 579
Wolff, J., 506
Wolfsdorf, J. I., 534,
539
Wolinsky, F., 72
Wong, M. D., 291, 294
Woo, P. P. S., 68
Woo, S. H., 414
Wood, B. L., 318
Wood, E., 167, 545
Wood, J. D., 361
Wood, K. M., 450
Woodcock, A., 250
Woods, A., 482
Woods, A. L., 474
Woods, N., 508
Woods, R., 152
Woods, X. A., 356
Woody, G., 449
Wootton, J., 292
Worden, J., 227
Worden, J. W., 636, 637
Worthington, E. L., Jr.,
284
Wortley, P. M., 533
Wren, B. G., 354
Author Index.indd 675Author Index.indd 675 9/21/11 7:56 PM9/21/11 7:56 PM
676 Author Index
Wright, B. A., 232
Wright, L., 506
Wright, L. M., 331
Wright, T., 188
Wu, A., 479
Wu, A. W., 473, 474
Wu, E., 449
Wu, S. C., 471, 474, 480
Wuerth, D., 472
Wulsin, L., 545
Wyatt, S. B., 172
Wysocki, T., 535
Xakellies, G., 407, 408
Xie, S. X., 197
Xiong, X., 406
Xu, J., 145, 146, 148,
503
Xu, J. Q., 71, 72, 75,
192
Yabroff, K. R., 374
Yahne, C. E., 444, 448
Yalom, I. D., 245
Yamaguchi, K., 433
Yan, Y., 72
Yanes, B., 306
Yang, D., 406
Yaniv, I., 573
Yano, E. M., 176
Yashima, E., 346, 350
Yassa, T., 478
Yasui, Y., 509
Yates, J. S., 297
Yates, P. M., 130
Yee, L., 349
Yehuda, R., 204, 205
Yellow Bird, M., 170
Yemane, A., 115
Yemez, B., 361
Yemini, T., 193
Yen, I. H., 157
Yeo, G., 406–408
Yip, B., 167, 545
Yoo, H. C., 172
Yoon, J. W., 472
Yordy, K. D., 409
Yoshihama, M., 159
Youm, Y., 148, 150
Young, A., 243
Young, A. S., 203, 204
Young, B., 547
Young, B. S., 472
Young, J. P., 456
Young, M. E., 226
Yu, H. J., 291, 294
Yun, K., 645
Yun, L. W., 547
Yusack, C. M., 482
Zabora, J., 503–505,
514, 517
Zachny, J., 616
Zacny, J., 438
Zalemski, S., 483
Zametkin, A. J., 193
Zandbelt, L. C., 248
Zandi, P., 558
Zapata, B. C., 152
Zarit, S., 405
Zauber, A. G., 500
Zebrack, B., 502, 507–
510, 514, 517, 644
Zeh, J., 305
Zeltzer, L., 508, 510
Zerhouni, E., 244
Zhang, D. D., 166
Zhang, G., 300
Zhang, R., 482
Zhao, S., 190
Zierler, S., 193
Zimberg, S., 189
Zimmerman, C., 645
Zimmerman, M., 194
Zimmerman, W., 109
Zinberg, G., 348
Ziroyanis, P., 471, 474
Zlotnick, C., 449
Zlotnik, J. L., 646
Zodikoff, B., 644
Zola, I., 222
Zoldbrod, A., 344, 345
Zoldbrod, A. P., 344,
345
Zuckerman, B., 255,
434
Zunkel, G., 350
Zweben, A., 450
Zweben, J., 439
Zwetsch, T., 318
Author Index.indd 676Author Index.indd 676 9/21/11 7:56 PM9/21/11 7:56 PM
677
Subject Index
Abortion, 48, 81, 121,
130, 264, 431, 574,
635, 637
Abstinence violation
effect, 442, 443
Abuse and neglect
children, 22, 31, 32
older adults, 22,
402–404, 410
Access to health care.
See also Barriers to
health care; Health-
care disparities
children, 87
and ethnicity, 145
health policy, 100–
102, 119
public health issues,
69–71, 75, 87
rural versus urban
areas, 150, 151
social determinants of
health, 149
and socioeconomic
status, 174
Accountability, 100–
102, 119
Act utilitarianism, 47,
55
Activities of daily living
(ADLs), 108, 242,
393, 394, 400, 404,
405, 412, 414, 472,
473, 612
Acupuncture, 292, 294,
296–297, 300–302,
309–311
Acute myocardial
infarction. See
Myocardial
infarction
Acute stress disorder,
191
Addams, Jane, 5, 7–9,
66
Addiction, 426–429,
616, 617. See also
Substance use/
abuse
Adenoma, 500
Adherence counseling,
200, 526, 535–541,
549
Adjustment to disability,
226–229
Administration of
Children Youth and
Families, 82
Administrative role of
social workers,
30, 31
Adolescents
alcohol use, 429, 430,
452
antidepressants, 198,
547
cancer, 378, 507–509
cocaine use, 434, 435
collaboration among
family, school, and
medical setting,
377, 378
community effects on,
152–154
depression, 181, 190,
203, 547
diabetes, 544, 548
(see also Diabetes)
end-of-life care, 383,
384
end-stage renal disease
(ESRD), 474
family member’s
chronic pain,
dealing with, 606,
607
fertility issues, 378
Healthy People 2020
objectives, 67
inhalant use, 437
inherited adult-onset
disease risk, 578
interventions for
youth with medical
conditions, 378,
379
lesbian, gay, bisexual,
and transgender
(LGBT) issues,
357, 358
marijuana use, 433
medical diagnosis,
adjustment and
response to,
375–377
obesity, 74
parentifi ed, 330
posttraumatic stress
disorder, 205
psychotherapeutics
use, 438
sexual health/
sexuality, 345, 353,
355, 357, 358
substance use
interventions, 441,
448, 449 (see also
Substance use/
abuse)
suicide risk
intervention, 196,
198
support groups, 511
and Theory of
Reasoned Action,
130
tobacco use, 432,
442
Adult-onset disorders,
genetic testing for,
575–578
Adulthood
community effects on,
154, 155
older adults (see
Older adults)
young adults, 192,
355–357
Advance directives, 45,
601, 633–636
Advocacy
disability, 230, 231
end-stage renal
disease (ESRD),
483–485
health policy issues,
114–119, 644 (see
also Health policy)
Subject Index.indd 677Subject Index.indd 677 9/21/11 7:56 PM9/21/11 7:56 PM
678 Subject Index
older adults, 394,
396, 397, 409, 411,
414, 416
oncology social work,
514
pain management,
601, 617
palliative care, 601,
617
patients, 29
public policy, 75, 646,
647
role of social workers,
356, 364, 483–485,
646, 647
sexual health/
sexuality, 356, 364
for social work
profession, 30, 31,
34, 35
student rights, 377,
378
Agency for Healthcare
Research and
Quality (AHRQ),
89, 116
Aging. See Older adults
Agoraphobia, 178, 182
Aid to Families with
Dependent
Children (AFDC),
107, 121, 484
AIDS. See HIV/AIDS
Alcohol and alcoholism.
See also Substance
use/abuse
brief intervention,
456, 457
and cancer, 431, 500
and depression, 188,
189
epidemiology, 429,
430
health effects, 430,
431
older adults, 396,
398, 430, 431, 439,
452, 454
overview, 430
screening for, 450–456
and social networks,
240
terminology, 428, 429
Alcoholics Anonymous
(AA), 429, 439–
441, 456, 459
Allostatic load, 165,
166, 275
Almshouses, 4
ALS (amyotrophic
lateral sclerosis),
25, 224, 562
Alternative medicine
and complementary
approaches
abdominal breathing,
306
acupuncture, 292,
294, 296, 297,
300–302, 309–311
alternative medicine
described, 295, 296
aromatherapy, 305
autogenic training,
306, 605
ayurvedic medicine
(ayurveda), 296,
301, 309
bioelectronic
therapies, 308
biofeedback, 292,
296, 306, 307
biological treatments,
308, 309
body therapies, 297
botanical medicine
(herbal remedies),
292–294, 296–298,
300–304, 308–311,
362, 594
cancer, 502
Chinese medicine,
traditional (TCM),
296, 300, 302, 310
chiropractic, 292,
294, 296, 304, 305,
310, 311
complementary
approaches, 295–
297
curanderismo, 303
curandero/curandera,
295, 303
ethnic groups, 291,
293–295, 302–304,
311
folk medicine, 292,
302–304, 309, 600
guided imagery, 292,
306
health-care systems,
alternative, 301–
309
herbal remedies
(botanical
medicine), 292–
294, 296–298,
300–304, 308–311,
362, 594
homeopathy, 292,
296, 297, 301, 302
hypnosis, 292, 306,
307, 549, 605
insurance coverage,
295, 311
integrative health
care, 295, 297, 298,
309–311
massage therapy,
292, 296, 300, 301,
303–306
meditation, 296, 300,
301, 306, 307, 309,
548, 549
mind/body
techniques, 295–
298, 332, 333
naprapathy, 305
naturapathic
medicine, 302
nondisclosure of
treatment, reasons
for, 293
nutrition and lifestyle
regimens, 308, 309
problems and
concerns, 309–311
reasons for seeking
alternative
treatment, 298, 299
refl exology, 305
research dilemma,
309
resources, 312, 313
terminology, 295–298
therapeutic touch
(TT), 305
U.S. practices, 292,
293
Alzheimer’s disease,
108, 185, 224, 227,
320, 321, 323, 399,
400, 415, 508, 577
Ambulatory surgery
centers, 22
American Association
of Hospital Social
Workers, 11, 12
American Association
of Medical Social
Workers, 12
American Cancer
Society (ACS),
118, 207, 365, 387,
504, 520
American Hospital
Association, 10,
12, 484
American Medical
Association
(AMA), 10, 49,
117, 301
American Recovery and
Reinvestment Act,
110
Americans with
Disabilities Act
(ADA), 121, 219,
220, 378, 581
Ammon, Kay, 25
Amniocentesis, 574, 582
Amputation, 70, 193,
356, 357, 530, 635
Amyotrophic lateral
sclerosis (ALS),
25, 224, 562
Angina. See Heart
disease
Anticipating end of life,
629
Anticipatory mourning,
636
Antidepressants, 197,
198, 203, 204, 310,
361, 362, 428, 439,
545, 547, 616
Anxiety
after major medical
procedures, 21
and cancer, 179, 502,
505, 507, 509, 510,
513, 515, 516
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Anxiety (cont.)
and end-stage renal
disease (ESRD),
472–474, 477, 480
management of in
children, 380, 381
Anxiety disorders.
See also specifi c
disorders
diagnostic criteria, 191
differential
assessment, 186–
190
interventions, 203–205
and medical
conditions, 188
not otherwise
specifi ed, 191
older adults, 178, 203,
204, 398, 400, 439
prevalence, 178
screening for in
health-care settings,
181–183
types of, 178
Appearance, attitude,
and activity (mental
status exam),
183–184
Applied ethics, 44
Aromatherapy, 305
Artifi cial hydration and
nutrition, 64, 65,
229, 404, 634
Asbestos, 69
Assessment
biopsychosocial-
spiritual model
and assessment,
441, 590–592, 594,
597–600
cancer patients,
ongoing
assessments, 514
CARESS model of
assessment, 351
community, 68,
75–77, 94
comprehensive
geriatric assessment.
See Comprehensive
geriatric assessment
(CGA)
end-stage renal
disease (ESRD),
patient assessment,
479, 480
EX-PLISSIT model
of assessment, 351
families, 319, 325–
334
function of public
health agencies, 64
Global Assessment
of Functioning
(GAF), 177
health impact
assessment (HIA),
76
kidney donors, 479,
480
mental status, 183,
185 (see also
Comprehensive
geriatric
assessment
[CGA])
palliative care, 600
psychosocial
conditions in
health-care settings,
167–198
screening versus
assessment, older
adults, 408, 409
sexuality and physical
intimacy, 348–351
spiritual assessment,
276–284, 597–599
tools, 24
Assisted suicide, 44,
45, 229, 263, 610,
611, 639. See also
Euthanasia
Association for Death
Education and
Counseling, 640
Association of State
and Territorial
Public Health
Social Workers
(ASTPHSW), 37,
81, 82
Assurance (public health
function), 64, 94,
101
Asthma, 89, 118, 153,
178, 300, 301, 321,
328, 373–376, 441
AT&T Language Line,
254, 599
Attention Restoration
Theory (ART), 88
Attribution theory, 127
Attributional Style
Questionnaire, 127
AUDIT (Alcohol
Use Disorders
Identifi cation Test),
454–455
Auditory sense, 306, 396,
400, 602, 605. See
also Hearing loss
Autogenic training, 306,
605
Autonomous practice/
practitioner, 32,
644, 646
Autonomy, 44–46, 221,
222, 331, 338, 404,
407, 415, 443, 446,
457, 504, 508, 517,
578, 580, 581, 599,
609–611, 617
Autosomal dominant
mode of
inheritance, 560
Autosomal recessive
mode of
inheritance, 560,
569, 575, 580
Ayurvedic medicine
(ayurveda), 296,
301, 309
Baker, Edith M., 11
Balanced Budget Act of
1997, 109
Barriers to health care.
See also Access to
health care
failure to enroll in
public programs, 115
lack of knowledge,
106, 108, 109
role of social workers,
26, 27
socioeconomic status,
21, 24
system and
institutional
barriers, 70
Bartlett, Harriett, 10, 12,
15, 16, 504
Behavioral Model
for Vulnerable
Populations, 133, 134
Behavioral Model of
Health Services
Use, 131–135
Benefi cence principle,
45, 57, 59, 609, 610
Benefi t model, 88
Benefi ts Checkup, 417
Benthan, Jeremy, 47
Bereavement
counseling, 23, 25,
26, 32, 517, 628,
636. See also Grief
Bioelectronic therapies,
300, 305, 308
Bioethics, 48–52, 61,
62, 578, 581, 599
Biofeedback, 292, 296,
306–307
Biological treatments,
308–309
Biopsies, 307, 500, 501
Biopsychosocial
approach to health
care, 20–24, 33–36,
223, 318, 396, 453,
489, 490, 504, 510,
513, 514, 517, 518,
645
Biopsychosocial-
spiritual model
and assessment,
441, 590–592, 594,
597–600
Bipartisan Commission
on Comprehensive
Health Care (Pepper
Commission), 111
Bipolar disorder, 178
Birth defects, 573, 574,
577
Bisexuality. See
Lesbian, gay,
bisexual, and
transgender
(LGBT) issues
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680 Subject Index
Blackwell, Elizabeth, 5
Blank check Medicare,
104
Blank check medicine,
105
Block grants, 65, 80,
94, 158
Body image, 345, 355,
356, 359, 472–474
Body Mass Index
(BMI), 73, 74
Body therapies (manual
therapies), 297,
304–308
Bond, Thomas, 5
Bone marrow transplants,
352, 363, 484, 485
Boretti, Ruth T., 10
Botanical medicine
(herbal remedies),
292–294, 296–298,
300–304, 308–311,
362, 594
Boundary violations,
54, 55
Bouvia, Elizabeth, 228
Brackett, Jeffrey, 6
BRCA gene, 507, 561,
574, 577, 582
Breast cancer. See also
Cancer
attitudes toward, 26
and BRCA gene, 507,
561, 574, 577, 582
family support, 21
social support, 21
studies on health
disparities, 26
Breathing exercises,
380, 381
Brief eclectic
psychotherapy
(BEP), 205
Brief interventions,
substance abuse,
450, 456, 457
Brief MAST
(B-MAST), 456
Bruxton, Peter, 51
Bulimia, 22, 544.
See also Eating
disorders
Bullard, Robert, 87
Cabot, Elizabeth, 7
Cabot, James, 7, 8
Cabot, Richard, 6–10,
12, 16–18, 134, 242
Cabot, Samuel, 7
CAGE-AID (CAGE
Adapted to Include
Drugs), 454
CAGE questionnaire,
398, 405, 453–454
Cancer
adenomas, 500
adolescents, 507–509
advocacy, 514
and alcohol use, 431,
500
alternative/
complementary
therapies, 502 (see
also Alternative
medicine and
complementary
approaches)
anxiety, 179, 502,
505, 507, 509, 510,
513, 515, 516
BRCA gene, 507, 561,
574, 577, 582
carcinoma, 500
case management, 516
causes of, 500, 503
challenges of oncology
social work, 518
chemotherapy, 297,
300, 306–308, 343,
361, 362, 377, 378,
434, 469, 501, 502,
505, 509, 591, 628
children, 373, 374,
376–378, 506–509
as chronic disease,
498, 503
clinical trials, 501,
502, 509
coping strategies, 506
counseling, 515–518
depression, 179, 501,
505, 507–509, 513,
516
diagnosis, 500, 502,
503
and disease
management, 15
end-of-life care, 517
(see also End-of-
life care)
and end-stage renal
disease, 469, 509,
591
epidemiology, 498–
500
etiology, 400
and families, 321–
325, 327, 331,
333–335, 338, 506
fertility issues, 378,
507–510, 517
genetic testing, 325,
507, 513
guided imagery
techniques, 306
and health beliefs,
241, 506
health-care
disparities, 26, 70,
500, 501, 512, 515,
517, 519
history of
psychosocial
oncology, 502–504
hormonal therapy,
361, 502
hospice care, 504 (see
also Hospice care)
insurance issues, 500,
501, 505, 508, 509,
513, 514
interventions, 510, 511
leukemias, 500
lung cancer, 69, 193,
431, 432
lymphomas, 500
Medicare, 508, 509
melanoma, 500
and men, 498–500
and mental illness, 505
mindfulness-based
stress reduction
(MBSR), 200
mortality, 500, 503
older adults, 393, 396,
398, 401, 411, 500,
508, 509
oncology social work,
498, 504, 505,
510–519
ongoing patient and
family assessments,
514
pain management,
504, 594, 602, 612,
613, 615
palliative care, 504,
517 (see also
Palliative care)
parents of school-age
children, 508
patient education,
516, 517
psychosocial effects
of, 505–510
radiation therapy,
129, 377, 378,
501–503, 505, 509,
516, 591, 628
research, 503, 504,
517, 518
resources, 519, 520
sarcomas, 500
screening, 22, 70, 79,
150–151, 241, 253,
273, 503, 512
and sexual health/
sexuality, 343, 347,
352, 354, 356, 359–
362, 500, 505–510
side effects of
treatment, 501–
503, 505, 509
skin cancer, 563
social support, 21,
504–506, 509, 510,
513, 514
staging, 500–502
and substance abuse,
431–434
support groups, 508,
510, 511
survivorship issues,
509, 510
treatment, 377, 499–
505, 507, 509 (see
also Chemotherapy
under this heading;
Radiation therapy
under this heading)
types, 500
and women, 175,
498–500
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Cancer Care, Inc., 388,
520, 619, 640, 641
Cannabis. See Marijuana
(cannabis)
Cannon, Ida, 3, 6, 7,
9–12, 14–18, 504,
592
Cannon, Mary
Antoinette, 10
Capital, social, 88, 157,
166
Capitation, 103, 105, 119
Carcinoma, 500. See
also Cancer
Cardiomyopathy. See
Heart disease
Cardiovascular
disease. See also
Heart disease;
Hypertension;
Stroke
adherence to
treatment regimen,
534
African Americans,
116, 172
alcohol as cause of,
430
in children, 382
and cocaine use, 435
depression, 21, 361,
362
and diabetes, 530
diet and nutrition, 308
and ecstasy use, 437
health-care
disparities, 72, 116
medical model, 149
medications, side
effects of, 361
motivational
interviewing, 444
nutritional
supplementation,
308
older adults, 396,
401, 508
and psychiatric
conditions, 187
religion/spirituality,
effect of, 273
and sexuality/sexual
health, 360, 361
societal factors,
infl uence of, 151
and stimulant use,
439
and stress, 165
types of, 529
Caregiver strain, 405,
423
CARESS model of
assessment, 351
Carriers
screening, 574, 575
testing, 569, 574, 575,
582
Carter, Jimmy, 111
Carter, Majora, 88
Case management
cancer, 516
end-stage renal
disease (ESRD),
482
role of social workers,
25, 28, 29, 31, 230
transplant patients, 26
Center for
Epidemiological
Studies Depression
Scale (CES-D), 405
Center for
Interdisciplinary
Health Disparities
Research, 26
Center for Medicare
and Medicaid
Innovation, 117
Center for Substance
Abuse Treatment
(CSAT), 176, 430,
441, 449, 460
Center to Advance
Palliative Care,
593, 641
Centers for Disease
Control and
Prevention (CDC),
23, 82, 103, 417
Change, stages of, 134
Chapin, Henry Dwight,
5
Charity care, 103
Chelation therapy, 309
Chemotherapy, 22, 297,
300, 306–308, 343,
361, 362, 377, 378,
434, 469, 501, 502,
505, 509, 591, 628
Chicago Housing
Authority, 157
Child abuse, 22, 31, 32
Child Behavior
Checklist, 179
Child Behavior
Inventory (Eyberg),
179
Child-directed
interaction (CDI),
177, 179
Children/childhood. See
also Infants
abuse, 22, 31, 32
access to health care,
87 (see also Access
to health care)
advocacy for student
rights, 377, 378
antidepressants, 198
anxiety disorders,
prevalance of, 178
anxiety management,
380, 381
asthma, 89, 153, 178,
374–376
breathing exercises,
380, 381
cancer, 373–374,
376–378, 506–509
collaboration among
family, school, and
medical setting,
377, 378, 386
community effects
on, 153
confi dentiality issues,
377
dealing with family
member’s chronic
pain, 606, 607
death, causes of, 382
depression, 181, 190
diabetes, 373, 374,
376, 548 (see also
Diabetes)
diagnosis, adjustment
to, 374–376
disruptive disorders,
178, 179
end-of-life care,
381–384, 631
end-stage renal
disease (ESRD),
474
fears, 378, 379
fertility issues, 378
genetic testing, 580,
581 (see also
Genetic testing)
global issues, 84, 85
health problems,
prevalence and
scope of, 373, 374
hospice care, 381, 382
inherited adult-onset
disease risk, 578
injuries, home as
source of, 75
interventions, 378–
381, 607, 608
juvenile rheumatoid
arthritis, 374
memorial services, 385
mood disorders, 178
obesity, 68, 74, 128,
151, 374
palliative care,
381–383
play and expressive
therapies, 379, 380,
383
posttraumatic growth,
377
posttraumatic stress
disorder, 205
resources, 387–390
responses to medical
condition, 376, 377
self-control exercises,
381
sexual abuse, 352, 353
social causation, 173,
174
social support, 22
social workers,
challenges for,
384–386
social workers, role
of, 376, 377, 379,
382, 386
and socioeconomic
status, 173, 174
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682 Subject Index
special needs, 80,
117, 331, 374, 570
spiritual needs of
dying child, 383,
384
suicide risk
intervention, 196,
198
support groups, 511
support groups for
specifi c medical
conditions, 376,
377
traumatic medical
experiences, 379
vicarious
traumatization,
385, 386
Children with Special
Health Care Needs
(Title V), 80
Children’s Bureau, 65
Children’s Health
Insurance Program
Reauthorization
Act of 2009
(CHIPRA), 109
Chinese medicine,
traditional (TCM),
296, 300, 302, 310,
406
Chiropractic, 292, 294,
296, 304–305,
310–311, 502
Chorionic villis
sampling (CVS),
574
Christ, Grace, 504
Christian Science, 8
Chromosomes, 52,
559–562, 569, 570,
573–574, 582, 584
Chronic disease
cancer as, 498, 503
(see also Cancer)
challenges of for
social workers, 527
chronic phase, 322–
325, 327
course of, 320, 321,
325
crisis phase, 322, 323,
325, 327
and depression, 534,
536, 543–549
diabetes (see Diabetes)
end-stage renal
disease (see End-
stage renal disease
[ESRD])
family approach to,
238, 318, 319 (see
also Families)
and genetic testing,
324, 325
health-care settings,
528
heart disease (see
Heart disease)
HIV/AIDS. See HIV/
AIDS
and homelessness, 146
incapacitation, 321,
322, 325
interventions to
improve mental
health, 547–549
and life expectancies,
527
and mental health,
534, 536, 543–549
onset phase, 320, 325
outcome, 321, 325
overview, 549
pain management,
612–614 (see also
Pain management)
patient-practitioner
communication
and adherence to
treatment, 541–543
quality of life, 21
religious coping, 274
(see also Religion
and spirituality)
terminal phase, 322,
324, 325, 327, 328
transition between
phases, 324
treatment regimens,
adherence to, 533–
541, 546–547
trends in patient care,
526, 527, 644
Chronic phase of illness,
322–324, 328
Civil War, 7
Climate change, 82, 84
Clinical and
translational
science (CTS), 90
Clinical base, expansion
of, 644–646
Clinical geneticists, 558,
566
Clinical social work and
public health social
work contrasted, 68
Clinical trials, 90, 374,
501, 502, 509
Clinton, Bill, 111
Clinton, Hillary
Rodham, 58
Cloning, 52, 59
Cocaine, 427, 431,
434–435, 442–443,
447–448, 547. See
also Substance use/
abuse
Codes of ethics, 42–44,
46, 49, 50, 57. See
also Ethics and
ethical issues
Cognition. See also
Comprehensive
geriatric
assessment (CGA)
assessment of, 183,
186, 394, 395, 405
older people, 393
and substance abuse,
427, 443
Cognitive-behavioral
and motivational
enhancement
therapy, 442
Cognitive-Behavioral
Intervention for
Trauma in Schools
(CBITS), 205
Cognitive-behavioral
interventions, 205,
602, 603
Cognitive-behavioral
therapy (CBT), 51,
197, 198, 203–205,
439, 442–444, 480,
481, 548, 602, 603,
614
Cognitive restructuring,
603
Coherence, 171, 274,
281, 331
Cole, Rebecca, 5
Coleman Transition
Care Intervention
(CTI), 411–413
Collaboration
family, school, and
medical setting,
377, 378, 386
health-care teams,
243–246
role of social workers,
32–35
Commission for the
Protection of
Human Subjects
of Biomedical
and Behavioral
Research, 51
Commission on Social
Determinants of
Health (CSDS), 72
Commitment-to-
treatment statement
(CTS), 196, 197
Communicable disease.
See Infectious
diseases
Communication in
health care
clinical encounters,
237–241, 246–248
cultural constructions
of reality, 238, 239
culture-specifi c
syndromes, 241, 242
end-of-life care, 628,
630, 631, 633
genetic testing
information, 579,
580
and health beliefs,
238–243
health-care teams, 25,
243–246
and health outcomes,
248, 249
illness versus disease,
communication
issues, 241–243
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Communication in
health care (cont.)
improving, methods
for, 249–255
language barriers,
70, 242, 253–255,
406–408 (see also
Interpreters)
medical terminology,
256–259
methods for
improving, 249–255
nonverbal, 406, 407
overview, 237, 255, 256
patterns of
communication,
246–248
racial, ethnic, and
socioeconomic
differences, 16, 17,
246–248
resources, 259
role of social workers,
242, 245
sexual health/sexuality,
346, 356, 359
Community and health
community
assessment, 68,
75–77, 94
community-based
models of practice,
644, 645
ESRD social work
intervention, 479,
483, 486, 487
infl uence of
community on
health, mechanisms
of, 148–151
life course,
community effects
on, 152–156
neighborhood
composition in
U.S., 143–148
neighborhood effects,
146–148
overview, 143
resources, 160
social work practice
implications,
156–159
Community assessment,
68, 75–78, 94
Community-based
participatory
research (CBPR),
89, 159, 252, 276
Community-based
services, 25, 64,
78–80, 114, 199,
393, 397, 400, 404,
406, 409, 416, 510,
549, 644, 645, 647
Community education, 27
Community-engaged
research (CEnR),
252
Community health
clinics, 22
Community health
programs, 22, 27
Community Living
Assistance Services
and Supports, 113,
114
Compassion fatigue,
619, 638–639
Complementary medicine
approaches,
295–297. See
also Alternative
medicine and
complementary
approaches
Comprehensive geriatric
assessment (CGA)
activities of daily
living (ADL),
ability to perform,
405
assessment tools, 405
and care management,
395
cognitive capacity,
398–400, 405
cultural background
(ethnogeriatrics),
406–408
economic resources,
404, 405
family and informal
support, 403–405
functional ability,
400, 401, 405
geriatric evaluation
and management
(GEM) approach,
395, 396
Geriatric Resources for
Assessment and Care
of Elders (GRACE),
395, 397, 409
Medicare, 395
overview, 394, 395
physical environment,
402, 403, 405
physiological well-
being and health,
396, 397, 405
Program of All
Inclusive Care for
the Elderly, 395
psychological well-
being and mental
health, 397, 398,
405
social functioning,
401, 402, 405
spiritual assessment,
404–406
standardized
assessment
instruments, use
of, 408
values and
preferences, 404,
405
Condition-specifi c
organizations, 207,
365
Confi dentiality. See also
Privacy issues
cultural issues, 407
ethics, 46, 47, 50, 53,
55–57
genetic testing and
information, 576,
578–581
medical information,
377, 378
student rights, 377, 378
Congenital heart defects.
See Heart disease
Congestive heart failure,
308, 528, 529, 544.
See also Heart
disease
Constructivism, 46–47
Constructs, defi ned, 126
Consumer’s Tool Kit
for Health Care
Advance Planning,
634
Content Analysis
of Verbatim
Explanations, 127
Continuing education.
See Education and
training for social
workers
Coordinated care, 64, 618
Coping, 201–203, 274,
506, 603, 604
Coronary artery disease,
153, 174, 181, 308,
528, 529, 544. See
also Heart disease
Correctional facilities.
See Prisons/
prisoners
Costs of health care
cost control, 14–16,
22–24, 34, 119 (see
also Health-care
reform)
end-of-life care, 628,
630
fi nance and payment
for health-care
services, 102–107,
119
health policy, 100–
102, 119
Council of Nephrology
Social Workers
(CNSW), 12, 37,
488–490
Counseling and
education
adherence counseling,
200, 526, 535–541,
549
cancer, 515–518
disabilities, 225, 226,
230
effect of on health,
146
end-stage renal
disease (ESRD),
479–481
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684 Subject Index
genetics, 507, 557,
566–573, 575, 579,
580, 582
grief/bereavement,
23, 25, 26, 32, 517,
628, 636
and health-care
disparities, 70
medical crisis, 548
older adults, 411, 414
pain management,
601, 602
palliative care, 601
psychoeducation, 167,
198–201, 203–205,
319, 324, 326, 511,
516, 517
role of social workers,
23–26, 166, 487, 488
sexual rehabilitation,
362, 363
Crisis intervention, 31,
32, 227, 409, 410,
479, 481, 515
Crisis phase of illness,
322, 324, 325,
331–334
Cruzan, Nancy, 45
Cultural competence,
64, 68, 101,
170–172, 203, 207,
208, 265, 277, 279,
406–408, 455, 458,
513–515, 593, 633,
647
Cultural issues
end-of-life care, 632,
633
physical and mental
health, 169–173
Culture brokers, 253
Culture-specifi c
syndromes, 241–
243, 254
Cummins, Anne, 6
Curandero/curandera/
curanderismo, 294,
295, 303
Cystic fi brosis (CF),
575, 578, 582
D’Alembert’s Dream
(Diderot), 42
Daniels, Annie, 5
Darwin, Charles, 8, 220,
564
Darwinism, 8, 220
Death. See also End-of-
life care
bereavement
counseling (see
Bereavement
counseling)
causes of in children,
382
death with dignity
legislation, 611
Decision making, ethics,
42, 44, 50–53
Dementia
Alzheimer’s disease
(see Alzheimer’s
disease)
HIV/AIDS related,
545
older adults, 185–186,
323, 397–400, 403,
405, 411, 415
substance-induced,
428
Deontological theory,
46, 47
Depression
African Americans,
172
and alcohol use, 188
antidepressants, 197,
198, 203, 204, 310,
361, 362, 428, 439,
545, 547, 616
and cancer, 179, 501,
505, 507–509, 513,
516
depressive disorder
not otherwise
specifi ed, 191
diagnostic criteria,
190, 191
differential
assessment, 187–
190
and end-stage renal
disease (ESRD),
472–474
and health problems,
21
and hip fractures, 75
interventions, 203–
205
and medical
conditions, 188
older adults, 166, 198,
203, 204, 396–400,
405, 408, 415
prevalence, 178, 179
screening for in
health-care settings,
181, 182
and substance use,
188, 189
women, 166, 167
Descartes, René, 594
Determinants of health,
67–70
Dewey, John, 8
Diabetes
as cause of end-stage
renal disease, 468,
472
children, 373, 374, 376
deaths from, 527
epidemiology, 528,
531
gestational, 530
health-care
disparities, 70, 116
health-care settings,
528
implications of, 527
and mental health,
543, 544, 546, 547
mental health
interventions,
547–549
and obesity, 151, 528,
531
overview, 530
patient-practitioner
communication,
541–543
racial and ethnic
disparities, 531
risk factors, 531
role of social workers,
25, 26
treatment regimen,
adherence to, 534–
541, 546, 547
types of, 530
Diagnosis of child,
adjustment to,
374–376
Diagnosis Related
Groups (DRGs),
102, 104, 105, 119
Diagnostic and
Statistical
Manual of Mental
Disorders, Fourth
Edition, Text
Revision (DSM-
IV-TR)
anxiety and mood
disorders, 187, 190,
191
decision trees, 187–
189
depression, 190, 191
diagnostic hierarchy,
191, 192
multiaxial assessment,
178, 179
posttraumatic stress
disorder (PTSD),
180, 181, 191
substance-induced
disorders, 128
substance-related
disorders, 427–429
substance use
disorders, 178,
427–429
Diagnostic-related
groups (DRGs), 15
Dialysis, 50, 468–483,
487–492. See also
End-stage renal
disease (ESRD)
Dialysis centers, 22,
30, 50
Diderot, D., 42
Diet and nutrition. See
also Obesity
alternative and
complementary
medicine
approaches, 300–
302, 308, 309
artifi cial hydration
and nutrition, 64,
65, 229, 404, 634
and cancer, 505, 508
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Diet and nutrition. See
also Obesity (cont.)
diabetes, 530, 539,
544, 546
dietary adherence,
128, 129
end-stage renal
disease, 472,
474–477
National Nutrition
and Health Survey
(NHANES), 73–75
older adults, 396,
397, 410
religious rules, 273
supplements, 310
Dietitians, 21, 28, 478,
541, 566
Differential assessment,
167, 178, 179,
187–199
Differential diagnosis,
167, 192
Disability
adjustment to, 226–
229
advocacy, 230, 231
biopsychosocial
model of treatment,
223
categorizing, 220
defi ning, 219, 220
discrimination, 220,
221, 224, 225, 231
ethical issues, 229, 230
fi nancial
consequences, 230,
231
free and appropriate
education, right to,
231
and health-care
disparities, 70
historical context,
220, 221
initial counseling,
225, 226
interventions,
considerations for,
228, 229
meaning, fi nding,
231–233
Medicaid expenses, 108
medical model of
treatment, 221–224
models for social
work practice,
221–225
rehabilitation model
of treatment, 222,
223
responses to, 226–229
role of social workers,
225–229
social model of, 223,
224
studies, 219
and suicide, 228
U.S. Census statistics,
220
Disaster preparedness
and response, 82–84
Discharge planning, 22,
105, 118, 393, 395,
404, 409–411, 413,
416
Discrimination. See
also Health-care
disparities
disability, 220, 221,
224, 225, 231, 581
employment, 144
and genetic testing,
581, 582
HIV/AIDS patients, 80
race and ethnicity, 74,
77, 143, 144, 172,
173, 336, 632
real estate and
lending practices,
74, 144
Disease management,
15–17, 505, 536,
541
Disease prevention,
66–69, 78–80, 94,
409
Disease-specifi c care
centers, 22, 23
Dispensaries, 5, 6
Disruptive disorders,
178, 179
Distraction techniques
for pain
management, 604
DNA, 52, 558–563, 569
Domains of care and
guidelines for
practice, palliative
care, 596, 597
Domestic violence, 68
Down syndrome, 225,
226, 562, 573, 574
Drug Abuse Screening
Test (DAST), 456
Dual eligibility
(Medicare and
Medicaid), 108
Dual relationships, 50,
53–55
Dumping in Dixie
(Bullard), 87
Duties of commission
(imperfect duties),
47
Duties of omission
(perfect duties), 47
Duty to protect, 47
Duty to warn, 47
Dysthymia, 178, 179,
191, 197, 563
Eating disorders, 22,
127, 284, 536, 544
Ecological systems
theory, 34, 70, 167,
169, 171, 172, 174,
175, 187–190
Economic justice, 64,
70, 75, 81, 87
Education
collaboration with
schools, 377
free and appropriate
education, right to,
231
Individual Education
Programs, 231
patient education (see
Counseling and
education)
school as health-care
setting, 22
social workers (see
Education and
training for social
workers)
student rights, 231,
377, 378
Education and training
for social workers
end-of-life care, 638
pain management,
593, 619, 620
public health social
work, 81, 82
social work
education, 244
Elder abuse and neglect,
22, 402–404, 410
Elderly. See Older adults
Electroconvulsive
therapy (ECT), 204
Electronic waste
(e-waste), 88, 89
Emergency room
end-of-life care, 383
homeless patients, 158
social workers in, 26,
409
uninsured patients, 116
Emerson, Ruth, 11
Employment
discrimination, 144
and end-stage renal
disease (ESRD),
474
and health-care
disparities, 70
health insurance
coverage, 103, 104
(see also Insurance
coverage)
Empowerment Zones
(EZs), 158
End-of-life care.
See also Pain
management;
Palliative care
advance directives,
633–636
anticipating end of
life, 629
anticipatory
mourning, 636
barriers to, 628
cancer, 517
children, 381–384,
631
communication
issues, 628, 630,
631, 633
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community effects on,
155–156
compassion fatigue,
638, 639
Consumer’s Tool Kit
for Health Care
Advance Planning,
634
costs, coverage of,
628, 630, 633
cultural issues, 632,
633
education and training
for social workers,
638
emergency room, 383
end-stage renal
disease (ESRD),
473, 474, 482
ethical issues, 44–46,
639 (See also Ethics
and ethical issues)
grief, disenfranchised,
637
grief, types of, 636,
637
health-care disparities,
632, 633
health-care settings,
627, 629
history of, 504, 594,
628
hospice, 628, 629
interdisciplinary
teamwork, 629,
630
listening skills, 630
loss, understanding,
635, 636
Medicare and
Medicaid, 628, 633
Patient Self-
Determination Act,
633, 634
pediatric intensive
care unit, 383
resources, 640, 641
role of social workers,
26, 627, 629, 637,
638
social workers,
recognition of, 637,
638
and spirituality,
631, 632 (see
also Religion and
spirituality)
standards for, 593,
633, 638
End-stage renal disease
(ESRD)
adolescents, 474
advocacy role of social
workers, 483–485
anxiety and
depression, 472–
474, 477, 480
and cancer, 469, 509,
591
case examples, 475,
491, 492
case management, 482
caseloads, 488
causes of, 468, 469
challenging patients,
486
children, 474
community-level
intervention, 483
costs of, 468, 469
Council of Nephrology
Social Workers
(CNSW), 488–490
counseling and
education, 479–481
crisis intervention, 481
demographics, 471
dialysis, 50, 468–483,
487–492
dialysis centers, 22,
30, 50
dietary restrictions,
474, 475, 477
disease-related
psychosocial
aspects, 472
effects of psychosocial
issues, 477
employment issues,
474
end-of-life care, 473,
474, 482
end-of-life issues,
473, 474, 482
ESRD Network, 486,
487
ethical issues, 50
ethnic groups
affected, 471
family issues, 474
health-care team, 478,
483
hemodialysis, 50,
468–474, 476, 477,
479–481, 483, 491,
492
home hemodialysis,
469, 470
kidney donors, 470,
471, 479, 480
kidney transplants,
468–473, 475–481,
483–485, 490, 491
lifestyle changes, 471
Medicaid coverage,
468, 477, 478, 484,
485, 487
Medicare coverage,
468, 469, 471,
477, 478, 480–484,
486–490
medications, 470, 472,
473, 475–477, 479,
481, 485, 487, 490
national ESRD
program (Public
Law 92-601), 471
overview, 468–471, 490
pain management,
473, 613, 614
palliative care, 473,
613, 614
patient assessment,
479, 480
peritoneal dialysis,
468–470, 475–477,
479, 481
professional
challenges, 485,
487, 488
professional
organizations,
488–490
psychosocial aspects
of, 471–477
Quality Assessment
and Performance
Improvement
(QAPI), 483
rehabilitation
assistance, 482,
483
resources, 492, 493
role of social workers,
472, 477–488
self-management
issues, 474–476
sexual functioning,
473
social work
intervention,
477–487
statistics on, 468
suicde risk, 472
Enterprise Communities,
158
Entitlement programs,
25. See also
Medicaid
Environmental factors
and genetics, 557–
559, 561–568, 582
Environmental justice,
64, 70, 81, 87, 88,
91
Epidemiology, 64, 94.
See also Social
epidemiology
Epigenetics, 563, 567
Epilepsy, 30, 38, 127,
128, 178, 181, 238,
242, 434
Erectile dysfunction,
354, 360–362. See
also Sexual health/
sexuality
ESRD. See End-stage
renal disease
(ESRD)
ESRD Network, 486,
487
Ethics and ethical issues
bioethics, 50–52
boundary violations,
54, 55
branches of ethics, 44
challenges, 60
cloning, 52
codes of ethics, 42–
44, 46, 49, 50, 57
confl icts, 44, 46, 47
constructivism, 46, 47
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Ethics and ethical issues
(cont.)
decision-making, 42,
44, 50–53
disability issues, 229,
230
dual relationships, 50,
53–55
end-of-life care,
44–46, 639
end-stage renal
disease (ESRD), 50
ethical dilemmas, 42
ethics of care, 47, 48
ethics of duty
(Kantian ethics), 47
ethics principles, 44,
609, 610
euthanasia (see
Euthanasia)
genetics and genetic
testing, 570, 574,
578–581
laws, 43, 44
and managed care,
50, 56, 57
medical ethics, 48, 49
metaethics, 44, 45
morals, 43
normative ethics,
44–49
oncology social work,
512
overview, 41, 42
pain management
and palliative care,
609–611
philosophy, 42–46
positivism, 46
and religious beliefs,
263, 264
research ethics, 47,
57–59
resources, 61, 62
and risk management,
50
social work, 41, 42,
49, 50, 61
standards, 44
terminology, 42–44
values, 43, 45
whistle-blowing
(reporting
violations), 42, 51,
56, 57
Ethics in Social Work
Statement of
Principles, 61
Ethnicity. See also Race
and alternative
medicine/
complementary
approaches, 291,
293–295, 302–304,
311
discrimination (see
Discrimination)
and end-stage renal
disease (ESRD), 471
health-care
disparities, 70, 72,
116, 144, 145 (see
also Health-care
disparities)
and obesity, 73
and pain
management, 615,
616
Ethnogeriatric
assessment, 406–
408
Eugenics, 51, 220, 221,
338
Euthanasia, 45, 221,
229, 263, 264, 610,
611, 639. See also
Assisted suicide
Evidence-based practice,
75, 89, 94
EX-PLISSIT model of
assessment, 351
Expressive arts, use of,
606, 631
Eyberg Child Behavior
Inventory, 179
Eye movement
desensitization
and reprocessing
(EMDR), 205
Families
assessment, 319,
325–334
and cancer, 321–325,
327, 331, 333–335,
338, 506
caregivers, 337, 396,
405, 416, 506, 511,
513–517, 598, 599
and chronic
disease, 238,
318–338
and chronic pain, 598,
599
diagnosis of child,
adjustment to,
374–376
and end-stage renal
disease (ESRD), 474
family-centered
practice method,
64, 318, 407, 504,
505, 511, 513, 516,
518, 592
family history and
mapping genetic
risk, 577, 578
family meetings,
608–609
family-oriented
substance abuse
intervention, 448,
449
Family Systems-
Illness Model (see
Family Systems-
Illness Model)
family violence, 22,
26
genograms, 327,
340 (see also
Genograms)
health/illness belief
system, 320,
331–337
overview, 318, 338
and palliative care,
335
parentifi cation issues,
358, 508
psychoeducation, 319,
324, 326
research challenges,
337
support, 203, 326
Family-centered practice
method, 64, 318,
407, 504, 505, 511,
513, 516, 518, 592
Family Systems-Illness
Model
clinical and research
implications of,
325, 326
developmental phases
of individual,
family, and illness,
320, 328–331
family system
variables (belief
systems, culture
and ethnicity), 320,
331–337
overview, 319, 320,
338
phases of illness, 320,
322–325, 327, 328
psychosocial types of
illness, 320–322
Fears
children, 378, 379
older adults, 400, 415
Federal agencies
and public health
social work, 14, 23,
68, 81, 82, 100
social workers in, 14
Federal legislation,
timeline, 120–122
Federal programs, health
policy, 105–110,
119
Federally Qualifi ed
Health Centers
(FQHCs), 103, 116
Fertility issues
and cancer, 378,
507–510, 517
children, 378
reproductive genetics
and infertility,
573–575
in vitro fertilization
(IVF), 574, 575
Fetal alcohol syndrome,
431
Fetal and Infant
Mortality Review
(FIMR), 77, 94
FICA questions
for spiritual
assessment, 280
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Finance and payment
for health care
services, 102–107,
119. See also
Insurance coverage;
Medicaid;
Medicare
Finding meaning, 231–
233, 598
Flexner, Abraham, 13,
14, 49
Folk medicine, 292,
302–304, 309, 600
Food stamps. See
Supplemental
Nutrition
Assistance Program
(SNAP)
FRAMES (Feedback,
Responsibility,
Advice, Menu,
Empathy, and Self-
effi cacy), 457
Frankl, Viktor, 232, 598
Franklin, Benjamin, 5
Free and appropriate
education, right to,
231
Funding. See Finance
and payment for
health-care services
Gay and lesbian issues.
See Lesbian,
gay, bisexual,
and transgender
(LGBT) issues
Gehlert, Sarah, 26
Gender issues
communication
biases, 247, 248
and health-care
disparities, 70, 73
and obesity, 73
pain management, 615
transgender (see
Lesbian, gay,
bisexual, and
transgender
[LGBT] issues)
Generalized anxiety
disorder, 178, 179,
182, 191
Genetic counseling, 557,
566–573, 575, 579,
580, 582
Genetic counselors, 566,
568, 570
Genetic Information
Non discrimination
Act (GINA), 581,
582
Genetics
autosomal dominant
mode of
inheritance, 560
autosomal recessive
mode of
inheritance, 560,
569, 575, 580
BRCA gene, 507, 561,
574, 577, 582
chromosomes, 52,
559–562, 569, 573,
574
clinical geneticists,
558, 566
counseling, 507, 557,
566–573, 575, 579,
580, 582
DNA, 52, 558–563,
569
environmental factors,
557–559, 561–568,
582
epigenetics, 563, 567
ethical issues, 570,
574, 578–581
genetic counselors,
566, 568, 570
Genetic Information
Non discrimination
Act (GINA), 581,
582
genetic services,
demand for, 570,
571
genetic variation,
558–562
genome, 52, 324, 507,
557, 559, 562, 565
genotypes, 566, 579
germline mutations,
561, 562
and health literacy
and numeracy, 572
Human Genome
Project (HGP), 52,
61, 557, 565, 585
and mental illness,
565, 566
multifactorial
inheritance, 561
mutations, 225, 226,
324, 325, 378, 500,
507, 557, 560–563,
565–569, 572, 574,
575, 577–578, 582
natural selection, 564
overview, 557, 558,
582, 583
pharmacogenomics,
565, 566
phenotypes, 558, 560,
564, 565, 579
policy considerations,
581, 582
polymorphisms, 562,
567, 569
preimplantation
genetic diagnosis
(PGD), 574
and race, 564, 565
referrals to genetic
services, 569–571
reproductive genetic
variation, 559, 560
reproductive genetics
and infertility,
573–575
research
opportunities, 567,
568
resources, 584, 585
risk, mapping in
family histories,
577, 578
risk information,
communicating
and interpreting,
571–573
screening, 563, 569,
573–575 (see also
Genetic testing)
social work, skills
required, 576
somatic mutations,
561, 562
structural genetic
variation, 559–562
and substance use/
abuse, 565, 566
testing. See Genetic
testing
transdisciplinary
teams, 566–569
in vitro fertilization,
574
X-linked inheritance,
560, 561, 569, 580
Genetic testing
access to, 570, 571
adult-onset disorders,
575–578
amniocentesis, 574
cancer, 325, 507, 513
carrier testing, 569,
574, 575
chorionic villis
sampling (CVS),
574
diagnostic testing,
569, 570
direct to consumer
(DTC) tests, 570,
571
ethical issues, 570,
578–581
family histories,
mapping genetic
risk in, 577, 578
informed consent,
570, 578–580
microarrays, 562
minors, 580, 581
newborns, 563, 569,
570
predictive testing,
569, 570
prenatal, 569, 570,
573, 574
susceptibility testing,
569
types of, 569
Genograms
genetic risk, 577, 578
illness, loss, and
crisis, 327–331,
340
spiritual, 281, 282
Genome, 52, 324, 507,
557, 559, 562, 565
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Genotypes, 566, 579
Gentrifi cation, 74, 75
Geographic information
system (GIS), 75,
77–78, 90, 91
Geriatric evaluation
and management
(GEM), 395
Geriatrics. See
Comprehensive
geriatric
assessment (CGA);
Older adults
Germline mutations,
561, 562
Gestation. See
Pregnancy
Gibson, Patricia Ann, 30
Give an Hour, 180
Glenn, John, 6, 11
Glenn, Mary Wilcox, 6
Global Assessment
of Functioning
(GAF), 177
Global public health
issues, 82–87
Gowan, John Q., 30
Grief
complicated, 636, 637
counseling, 23, 25, 26,
32, 517, 628, 636
disenfranchised, 637
loss, understanding,
635, 636
role of social workers,
29, 32, 637
Grief models of
adjustment to
disability, 227
Griffi ths, Martha, 111
Group theory, 245
Guided imagery, 292, 306
Hallucinogens, 436,
437. See also
Substance use/
abuse
Hamilton, Alice, 66
Harder, Jeff, 29
Harm reduction
approach,
substance use,
446–448
Harmful behaviors, 22
Hastings Center, The,
51, 61
Health behavior theories
Behavioral Model
for Vulnerable
Populations, 133,
134
Behavioral Model of
Health Services
Use, 131–135
Health Belief Model,
128, 129, 131, 132,
135
overview, 125, 126,
645
rational choice
approaches, 128–
130, 134, 135
Social Action Theory,
131, 132, 135
social network
approaches, 131, 132
stages of change, 134
Theory of Planned
Behavior, 128,
130–132, 135
Theory of Reasoned
Action, 128–132,
135
Transtheoretical
Model (TTM), 134
use of theory in social
work practice and
research, 126–128
Health Belief Model,
128, 129, 131, 132,
135
Health beliefs
and cancer, 241, 506
and communication
issues, 238–243
older adults with
diverse ethnic
and cultural
backgrounds, 406,
407
supernatural causes of
illness, 239
Health Care and
Education
Reconciliation Act
of 2010, 113
Health-care disparities.
See also Access to
health care
cancer, 26, 70, 500,
501, 512, 515, 517,
519
categories and
conditions for, 70
Center for
Interdisciplinary
Health Disparities
Research, 26
diabetes, 531
and disability, 70
end-of-life care, 632,
633
and health policy, 116
heart disease, 529,
530
HIV/AIDS, 533
income, 144, 145, 158
kidney transplants,
471
and public health
social work, 70–72,
89–90
race and ethnicity,
144, 145, 172, 247
research, 89, 90
Health-care
environment, social
work challenges
and issues, 393,
394, 416, 643
Health-care industry,
102
Health-care proxy
(durable power of
attorney for health
care), 633, 634
Health-care reform
cost control, 119, 643
health policy, 102,
107, 110–114, 119,
643, 644
history of, 110–113
key features of, 113,
114
Massachusetts, 112
Health-care safety
net, 16, 70, 114,
116–118
Health-care settings
end-of-life care, 627,
629
older adults, 409–416
and social work, 22, 23
transitions, 411, 412
types of, 22–24
Health-care systems
alternative, 301–309
structure of, 102
Health-care teams
and biopsychosocial
approach to health
care, 21. See also
Biopsychosocial
approach to health
care
collaboration, 243–
246
communication
issues, 243–246
end-stage renal
disease (ESRD),
478, 483
members of, 21
role of social workers,
24–28
types of, 244
Health departments, 14
Health impact
assessment (HIA),
76
Health insurance. See
Insurance coverage
Health Insurance
Portability and
Accountability Act
(HIPAA), 59, 377
Health literacy, 572
Health Maintenance
Organization
(HMO) Act, 14
Health maintenance
organizations
(HMOs), 14, 15, 22
Health numeracy, 572
Health outcomes and
communication,
248, 249
Health policy
access to health care,
100–102, 119
accountability, 100–
102, 119
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costs of health care,
100–102, 119
defi ned, 100
federal legislation,
timeline, 120–122
federal programs,
105–110, 119
fi nance and payment
process, 102–105,
119
and health care
industry, 102
health-care reform,
107, 110–114, 119
health-care safety net,
16, 114, 116–118
health-care system
structure, 102
health disparities, 116
and health insurance,
100–116, 119
Medicaid, 100, 102,
103, 105–122
Medicare, 100, 102–
109, 111, 113, 114,
117–122
overview, 100, 101,
119
patient-centered
medical home, 117,
118
policy issues for
social work,
114–119
quality of health care,
100–102, 119
resources, 120
role of social workers,
17, 100, 118, 119
State Children’s
Health Insurance
Program (SCHIP),
100, 101, 105, 107,
109, 110, 113, 118,
119, 121
uninsured, 114–116
Health Resources
Services
Administration
(HRSA), 82
Health Security Act
legislation, 111,
112
Healthy People 2010,
471
Healthy People 2020,
66, 67, 69, 82, 94,
471
Hearing loss, 21, 25,
186, 224, 313, 377,
393, 397, 400, 508,
570, 615. See also
Auditory sense
Heart attack. See
Myocardial
infarction
Heart disease
African Americans,
116, 172
congestive heart
failure, 308, 528,
529, 544
coronary artery
disease, 153, 174,
181, 308, 528, 529,
544
epidemiology, 528
and gender, 529
health care settings,
528
implications of, 527
and marital status,
155
and mental health,
543–545, 547–549
myocardial infarction,
21, 132, 148, 166,
179, 180, 187,
309, 359, 360, 435,
528–529, 544, 548
overview, 528, 529
patient-practitioner
communication,
541–543
racial and ethnic
disparities, 70, 116,
529, 530
and sexual health/
sexuality, 355,
359–360
as top cause of death
in U.S., 527
treatment regimen,
adherence to, 534–
541, 547
types of, 528, 529
Hemodialysis, 50,
468–474, 476, 477,
479–481, 483, 491,
492
Henry Street Settlement,
66
Herbal medicine,
292–294, 296–298,
300–304, 308–312,
362, 594
Hermann, Joan, 504
Heroin, 435, 436. See
also Substance use/
abuse
Hippocratic Oath, 48,
53, 54
Historical background
end-of-life care, 504,
594, 628
health-care reform, 5,
6, 65–67, 110–113
pain management,
593–595
palliative care, 504,
593–595
public health social
work, 65–67
social work in health
care. See History
of social work in
health care
History of social work
in health care
Civil War, impact of,
7, 8
Darwinism, impact
of, 8
dispensaries, 5
hospital almoners in
England, 6, 10, 18
hospital social work
departments,
growth of, 10, 11
hospitals, evolution
of, 4, 5
immigration waves
of 1800’s, impact
of, 3, 4
Massachusetts
General Hospital,
3, 5–13, 17, 592
medical social work,
evolution of, 12–14
origins, 3, 4
outpatient and non-
hospital settings,
14–16
professional
organizations and
training, 10–12
public health reform,
5, 6, 65–67,
110–113
technique and
approach, changes
in, 16, 17
History of the American
Association of
Medical Social
Workers (Stites), 11
HIV/AIDS
deaths from, 527
depression, 166, 167,
179
disease prevention,
79, 80
epidemiology, 528, 532
federal fi nancing, 103
and gender, 532, 533
global issues, 85, 148,
532
HAART (highly
active antiretroviral
therapy), 79, 532,
534
and Health Belief
Model, 128
health-care
disparities, 70, 116
health-care settings,
22, 23, 528
HIV and AIDS
distinguished, 531
and homelessness, 146
implications of, 527
and mental health,
543, 545–547
mental health
interventions,
547–549
overview, 531, 532
pain management,
612, 613, 615
patient-practitioner
communication,
541–543
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Subject Index 691
psychiatric disorders,
prevalence of, 179
public health issues,
533
racial and ethnic
disparities, 533
and sexual health/
sexuality, 361
and substance use/
abuse, 431–432,
434–436, 444, 448,
452–453
and suicide risk, 193
treatment regimen,
adherence to, 534–
541, 547
Home health-care
settings, 395, 409,
410, 412–414
Homelessness, 146, 158,
189, 190
Homeopathy, 292, 296,
297, 301, 302
Homophobia, 175
HOPE questions
for spiritual
assessment, 279
Hospice care
cancer, 504
children, 381, 382
end-of-life care, 628,
629
Hospital almoners, 6,
10, 18
Hospital Survey and
Construction Act
(Hill-Burton Act),
111
Hospitals
discharge planning,
393, 395, 404,
409–411, 413, 416
evolution of, 4, 5
health-care settings,
22
historical background,
594
inpatient settings,
394–396, 409–411,
416
nonprofi t and for-
profi t, 102
Hull House, 66
Human Genome Project
(HGP), 52, 61, 557,
565, 585
Human traffi cking,
85–87
Huntington’s disease,
193, 567, 569, 575,
577, 582
Hutchinson, Marvin R.,
29, 30
Hypertension, 145, 146,
152, 153, 172, 183,
360, 393, 396,
414, 468, 471, 472,
529, 545. See also
Cardiovascular
disease; Heart
disease
Hypnosis (hypnotherapy),
292, 306–307, 549,
605
Imagery techniques,
292, 306, 381, 593,
602, 603, 605
Immigration
and health-care
issues, 644, 645
and history of social
work in health care,
4, 16
and religions in the
U.S., 267
undocumented
immigrants, 16,
109, 114, 115
Immigration and
Nationality Act of
1965, 267
The Immortal Life of
Henrietta Lacks
(Skloot), 59
Immune system, 165,
166, 343, 431, 500,
502, 530–532
Immunization, 27, 65,
70, 78, 81, 128,
149, 150, 527
In vitro fertilization
(IVF), 574, 575
Income levels and
health, 144–146,
173, 174. See also
Socioeconomic
status (SES)
Indian Health Services,
103, 581
Individual Education
Programs, 231
Individuals with
Disabilities Act,
231
Infants. See also
Pregnancy
birth defects, 573,
574, 577
fetal alcohol
syndrome, 431
genetic testing of
newborns, 563,
569, 570
infant mortality (IM),
65, 71, 72, 77, 94,
116, 145, 152, 172
sudden infant death
syndrome (SIDS),
77, 78, 433, 436
Infectious diseases, 8,
80, 113, 148, 149,
156, 453, 527. See
also HIV/AIDS
Informed consent, 58,
570, 578–580
Inhalants, 433, 437. See
also Substance use/
abuse
Injuries, home as source
of, 75
Insight and judgment,
assessment of as
part of mental
status exam, 183,
186, 187
Institutional review
boards (IRBs),
57, 58
Instrumental activities
of daily living
(IADLs), 400, 404,
405, 411, 412
Insurance coverage
alternative and
complementary
medicine
approaches, 295,
311
cancer treatment, 500,
501, 505, 508, 509,
513, 514
end-of-life care, 628,
630
and health-care
disparities, 70
and health policy,
100–116, 119
Patient Protection and
Affordable Care
Act (PPACA), 16
(see also Patient
Protection and
Affordable Care Act
of 2010 [PPACA])
and socioeconomic
status, 174
uninsured, 114–116
Integrative health care,
295, 297, 298,
309–311
Interdisciplinary and
transdisciplinary
teams
end-of-life care, 629,
630
genetics, 566–569
pain management,
617, 618
public health social
work, 64, 65, 80,
85, 90
International Federation
of Social Workers,
50
Interpersonal therapy
(IPT), 203
Interpreters, 70, 185,
253–255, 408, 599
Interventions
cancer, 510, 511
children, 378–381
disability, 228, 229
end-stage renal
disease (ESRD),
477–487
evidence-based, 69
multilevel, 30
pain management,
592, 601–609
population-based, 89,
90, 94, 646
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692 Subject Index
psychiatric disorders,
187
psychological stress,
165
psycho pharmacology,
167
psychosocial, 165,
167, 175, 178,
179, 187, 188, 190,
195–205
psychotherapy, 167,
187, 197, 198, 204,
205, 399, 510, 547,
548
public health social
work, 64, 68, 69,
79, 80
role of social workers,
24–26, 30
substance use/abuse,
439–450, 456, 457
suicide risk, 195–198
Intimacy of health social
work, 347–351
Intoxication, 427, 428.
See also Substance
use/abuse
Jarrett, Mary, 13
Jehovah’s Witnesses,
239, 240
Jennette, Caroline, 27,
28
Johns Hopkins Hospital,
5, 10, 11, 59
Joint Commission on
Accreditation
of Health Care
Organizations, 30,
278
Jones, Polly, 30, 31
Jonsen, Albert, 51
Juvenile rheumatoid
arthritis, 374
Kaiser Permanente
Health Plan, 14
Kant, Immanuel, 47
Kennedy, Edward, 111,
113
Kidney failure. See End-
stage renal disease
(ESRD)
Kidney transplants,
468–473, 475–481,
483–485, 490, 491
Kirk, Douglas, 31
Koro, 241
Kübler-Ross, Elisabeth,
594
Lacks, Henrietta, 58, 59,
571, 579
Language barriers,
70, 174, 242,
253–255. See also
Interpreters
Learned helplessness,
127, 128
Legacy building,
383–384, 509, 600,
605–606
Lesbian, gay, bisexual,
and transgender
(LGBT) issues
access to health care,
73
adolescence, 357, 358
in assisted living
facilities and
nursing homes, 355
communication issues,
346, 347, 350
homophobia, 175
older adults, 355, 403
and physical and
mental health, 175
suicidal behavior,
192, 193
terminology, 346
Licensing, 23
Life expectancy, 145,
148, 149, 275, 392,
473, 591, 628
Life review, 382–384,
600, 604–606
Listening skills, 630
Liver disease
liver transplants, 484,
485
and substance use/
abuse, 426, 431,
436, 437
Living wills, 633, 634
Local health
departments and
public health social
work, 14, 80–82
Loch, Charles, 6, 18
Logotherapy, 232, 598
Long-term care
Community Living
Assistance Services
and Supports
program, 113, 114
Medicaid coverage
for, 107
Loss, understanding,
635, 636
Lou Gehrig’s disease
(ALS), 25, 224, 562
Low birth weight
(LBW), 31, 71, 72,
94, 116, 152, 153,
433–436
Lung cancer, 69, 193,
431, 432. See also
Cancer
Major depressive
disorder, 179, 190,
191
Major depressive
episode, 178
Malpractice insurance,
50
Mammograms, 70, 79,
150, 151, 241, 253,
273
Managed care, 14, 15,
50, 56, 57, 105,
106, 108, 119, 416
Marijuana (cannabis),
147, 174, 427,
433, 434, 443, 444,
448, 452. See also
Substance use/abuse
Marital status
heart disease risk, 155
and sexual behavior,
402
and suicide risk, 192
Mass, Sharon, 28, 29
Massachusetts General
Hospital, 3, 5–13,
17, 592
Massachusetts health-
care reform, 112,
115
Massage therapy, 292,
296, 300, 301,
303–306
Masturbation, 345, 346,
352–355, 357, 359,
363, 364
Maternal and Child
Health Bureau
(MCHB), 65, 80,
82, 94
Maternal and Child
Health Services
Block Grant (Title
V), 65
Maternal mortality, 71,
72
Maternity and Infancy
Protection Act
(Sheppard-Towner
Act of 1921), 65
Matrix model
intervention, 448
Meaning, fi nding, 231–
233, 598
Medicaid
cancer patients, 514
disability expenses,
230
end-of-life care, 628
end-stage renal
disease (ESRD),
468, 477, 478, 484,
485, 487
federal and state
fi nancing, 103, 111
and health-care
directives, 633, 634
and health-care
reform, 87, 112–117
and history of health
care social work, 14
home care services,
404, 412, 413
hospice care, 628
interpreters, cost of,
254
medical home model,
108, 117, 118
nursing homes, 415
older adults, 404, 412,
413, 415
overview, 105–112,
119
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Medicaid (cont.)
and public policy
advocacy, 75, 87,
118, 119
rural areas, 117
undocumented
immigrants, 16, 115
unenrolled eligible
individuals, 115
Medical approach to
health care, 20–22
Medical crisis
counseling, 548
Medical ethics, 48, 49.
See also Ethics and
ethical issues
Medical Ethics
(Percival), 48, 49
Medical home, 108,
117, 118
Medical insurance. See
Insurance coverage
Medical model of
treatment
and alternative and
complementary
medicine, 296, 297,
310
biopsychosocial
approach compared,
20, 21, 319
and cancer treatment,
518
disability, 221–224
and disease treatment
versus prevention,
149
Medical Savings
Accounts (MSAs),
104
Medical social work
approaches and
technique, changes
in, 16, 17
defi ned, 12, 13
evolution of, 12–14
Medical terminology,
256–259
Medicare
blank check
Medicare, 104
cancer, 508, 509
cost control, 14
Diagnosis Related
Groups (DRGs)
payment method,
102
disability coverage,
230
dual eligibles
(eligibility for
Medicaid), 108,
109
end-of-life care, 628,
633
end-stage renal
disease (ESRD),
468, 469, 471,
477, 478, 480–484,
486–490
and geriatric
assessment, 395
and health-care
directives, 633,
634
and health-care
reform, 87, 107,
111–113, 117
and history of health-
care social work,
14
home health care,
412–414
hospice care, 628
Medicare Advantage
Plans, 106, 107
nursing homes, 414,
415
overview, 105–107
payroll tax, 103
prescription drug
coverage, 106, 107,
119, 396, 397, 416
Prospective Payment
System (PPS), 104,
105, 118
regional variations in
spending, 150, 151
undocumented
immigrants, 109
Medicare Advantage
Plans, 106, 107
Medicare Prospective
Payment System
(PPS), 104, 105,
118
Medications
antidepressants, 197,
198, 203, 204, 310,
361, 362, 428, 439,
545, 547, 616
effects of on sexual
health/sexuality,
361, 362
end-stage renal
disease (ESRD),
470, 472, 473,
475–477, 479, 481,
485, 487, 490
HIV/AIDS, 532, 533,
545
Medicare prescription
drug coverage, 106,
107
nonadherence, 128,
166, 187, 197, 200,
534, 544
posttraumatic stress
disorder, 205
side effects, 188, 310,
361, 362, 396, 472,
473, 527, 533, 534,
546
substance use/abuse,
433, 437–439, 453
Meditation, 296, 300,
301, 306, 307, 309,
548, 549
Memorial services, 385
Mental health
case management, 31
health-care
disparities, 70, 89
and physical health
(see Physical and
mental health)
public health social
workers, role of, 89
Surgeon General’s
Report on Mental
Health, 89
Mental illness. See
also Psychiatric
disorders
and cancer, 505
and genetics, 565,
566
Mental status, formal
exam, 182–187,
408. See also
Comprehensive
geriatric
assessment (CGA)
Mesothelioma, 69
Metaethics, 44–45
Methadone treatment,
436, 442, 447, 448.
See also Substance
use/abuse
Methamphetamine, 438,
439, 443. See also
Substance use/abuse
Michigan Alcoholism
Screening Test
(MAST), 398, 456
Milestones in Sexual
Development
(Zoldbrod), 344, 345
Military issues
disability, 230
female service
members, 180
genetic testing, 581
geriatric assessments,
394, 395
posttraumatic stress
disorder (PTSD),
180 (see also
Posttraumatic stress
disorder [PTSD])
social work, 14, 22,
31
Millgram’s obedience
study, 58, 59
Mills, John Stuart, 47
MIMBRA questions
for spiritual
assessment, 283
Mind/body techniques,
295–298, 332, 333
Mindfulness-based
stress reduction
(MBSR), 200
Miscarriage, 152, 436,
562, 573, 574, 635,
637
Mobile care units, 22
Mood and affect
assessment of as
part of mental
status exam,
183–185
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694 Subject Index
Mood disorders. See
also specifi c
disorders
children, 178
older adults, 178,
398, 415
prevalence, 178, 179
types of, 178
Morals, 43. See also
Ethics and ethical
issues
Motivation and change
theory perspectives,
substance use/
abuse, 443–446
Motivational
enhancement
therapy (MET), 444
Motivational
interviewing, 443–
445, 449
Moving to Opportunity
(MTO) for
Fair Housing
Demonstration
Program, 147, 148
Multifactorial
inheritance, 561
Multiple sclerosis (MS),
38, 127, 193, 321,
360, 361, 434,
612–613
Mutations, 225, 226,
324, 325, 378, 500,
507, 557, 560–563,
565–569, 572, 574,
575, 577–578, 582
Myocardial infarction,
21, 132, 148, 166,
179, 180, 187, 309,
359, 360, 435,
528–529, 544, 548.
See also Heart
disease
Naprapathy, 305
National Association
of Social Workers
(NASW), 12, 30,
36, 38, 43, 49, 61,
75, 278, 279, 344,
387, 483, 520, 578,
619, 633, 638
National Cancer Act,
503
National Cancer
Institute (NCI),
118, 503, 504
National Consensus
Project for Quality
Palliative Care
(NCP), 595–597
National health
insurance
history of health-care
reform, 110–113
Patient Protection and
Affordable Care
Act of 2010 (see
Patient Protection
and Affordable
Care Act of 2010
[PPACA])
National Hospice and
Palliative Care
Organization, 29,
38, 382, 504, 593,
634, 641
National Institute of
Health (NIH), 17,
28, 82, 244, 245,
1118
National Nutrition and
Health Survey
(NHANES), 73–75
Natural selection, 564
Naturapathic medicine,
302
Nazi “research,” 47,
57, 58
Needs-based care, 29
Negative attributional
style, 127, 128
Neighborhood
composition in
U.S., 143–148
Nephrology social work.
See End-stage renal
disease (ESRD)
Newborns. See Infants
Nixon, Richard, 111
Nonmalfeasance, 45
Nonprofi t organizations,
68, 81, 102, 116,
118, 415
Normative ethics, 44–49
Nuremberg Code, 57, 58
Nurses and nurse
practitioners, 21,
23, 32, 108, 113,
188, 250, 377,
394–397, 410, 412,
414, 478
Nursing homes, 102,
107, 393, 394, 400,
402–405, 409–411,
413–416
Nutrition. See Diet and
nutrition
Nutritionists, 566, 596.
See also Dietitians
Oath of Hippocrates, 48,
53, 54
Obama, Barack, 52, 112
Obama, Michelle, 74
Obama Health Plan, 112
Obesity. See also Diet
and nutrition
and cancer, 500
childhood, 68, 74,
128, 151, 374
and chronic disease,
151, 528, 531, 545,
549
and diabetes, 151,
528, 531
and health-care
disparities, 116
and income level,
145, 150
and phenotypes, 564
race/ethnicity and
gender differences,
73, 145
and social networks,
91, 92, 240
as socially created
health condition,
73
“thrifty gene”
hypothesis, 151
Obsessive-compulsive
disorder, 178, 182,
191
Occupational therapy/
therapists, 106,
222, 358, 359, 566,
567, 596
Older adults
abuse and neglect, 22,
402–404, 410
activities of daily
living (ADLs), 393,
394, 400, 404, 405,
412, 414
advocacy issues, 394,
396, 397, 409, 411,
414, 416
aging population,
characteristics of,
392–394
alcohol use, 396, 398,
430, 431, 439, 452,
454
anxiety disorders,
178, 203, 204, 398,
400, 439
cancer, 393, 396, 398,
401, 411, 500, 508,
509
care transition
settings, 411, 412
comprehensive
geriatric
assessment (CGA),
394–406
dementia, 185, 186,
323, 397–400, 403,
405, 411, 415
demographics, 392,
393, 416
depression, 166, 198,
203, 204, 396–400,
405, 408, 415
discharge planning,
393, 395, 404,
409–411, 413, 416
end-stage renal
disease, 471 (see
also End-stage
renal disease
[ESRD])
ethnogeriatric
assessment, 406–
408
fears, 400, 415
gay and lesbian, 355,
403
geriatric evaluation
and management
(GEM), 395
Subject Index.indd 694Subject Index.indd 694 9/21/11 7:56 PM9/21/11 7:56 PM
Subject Index 695
Older adults (cont.)
health issues, 393
home health-care
settings, 395, 409,
410, 412–414
hospital inpatient
settings, 394–396,
409–411, 416
instrumental activities
of daily living
(IADLs), 400, 404,
405, 411, 412
and managed care,
416
Medicaid, 108, 404,
412, 413, 415
Medicare, 394–397,
412–416 (see also
Medicare)
mental status
assessment, 182–
187, 408 (see also
Comprehensive
geriatric
assessment [CGA])
Michigan Alcoholism
Screening Test, 398
mood disorders, 178,
398, 415
nursing home
settings, 393, 394,
400, 402–405,
409–411, 413–416
pain management,
438–439, 614–615
(see also Pain
management)
primary health-care
settings, 393–396,
399, 408–410, 416
resources, 417, 418
role of social workers,
26, 397, 410–412,
644
screening versus
assessment, 408,
409
sexual health/
sexuality, 353–355
social work
challenges and
issues, 393, 394,
416
spirituality and
religion, 273, 274,
276, 404–406 (see
also Religion and
spirituality)
substance use/abuse,
398, 404, 452, 454,
456
suicide, 192, 194,
198, 399, 410
Omnibus Budget
Reconciliation Act
of 1989, 75
Oncology social work,
498, 504, 505,
510–519. See also
Cancer
Opioids. See Psycho-
therapeutics
(nonmedical use of
prescription drugs)
Oppression, 84–87
Oregon Death with
Dignity Act
(ODDA), 611
Organ transplants
bone marrow, 352,
363, 484, 485
case management, 26
kidney, 468–473,
475–481, 483–485,
490, 491
liver, 484, 485
organ donation,
264, 470, 471, 479,
480
role of social workers,
26, 29
Society for Transplant
Social Workers, 12
The Origin of the
Species (Darwin),
7, 8
Orthodox Jews, 240
Pain management. See
also End-of-life
care
acute versus chronic
pain, 591, 592
addiction issues, 428,
616, 617
advocacy, 601, 617
AIDS (acquired
immuno defi ciency
syndrome), 612,
613, 615
barriers to, 614
biopsychosocial
and spiritual
assessment, 597–
600
cancer, 504, 594, 602,
612, 613, 615
challenges and
opportunities, 539,
592
children and
adolescents,
dealing with family
member’s chronic
pain, 606, 607
chronic incurable
illness, 612–614
chronic pain
conditions, 612
cognitive-behavioral
interventions, 602,
603
cognitive
restructuring, 603
compassion fatigue,
619
continuing education
for social workers,
593, 619, 620
coping statements,
603, 604
counseling, 601
depression and
anxiety, 598, 615
distraction, 604
education, 601, 602
end-stage renal
disease (ESRD),
473, 613, 614
ethical issues, 609–
611
expressive arts, use
of, 606
family meetings, 609
and fi nding meaning,
231–233, 598
gender issues, 615
geriatrics, 438, 439,
614, 615
historical perspective,
593–595
hypnosis, 605
imagery, 605
interdisciplinary and
transdisciplinary
teams, 617
interventions, 592,
601–609
minority populations,
615, 616
multiple sclerosis
(MS), 612, 613
and opioid medication
risks, 438, 439
overview, 591, 592,
611, 612, 619, 620
pain defi ned, 591
policy issues, 617
relaxation techniques,
604, 605
self-monitoring
techniques, 604
social workers, self-
care issues, 618, 619
and substance use/
abuse, 438, 439,
616, 617
suffering, 598
tolerance and
withdrawal issues,
428, 616
undertreatment of
pain, 614
vulnerable populations,
614–617
Palliative care. See also
Pain management
advocacy, 601, 617
assessment, 600
cancer, 504, 517
challenges and
opportunities, 592,
593
children, 381–383
chronic pain of family
member, dealing
with, 606, 607
cognitive
restructuring, 603
continuing education
for social workers,
593, 619, 620
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696 Subject Index
coping statements,
603, 604
counseling, 601, 628
domains of care and
guidelines for
practice, 596, 597
education and
anticipatory
guidance, 601
end-stage renal
disease (ESRD),
473, 613, 614
ethical issues, 609–611
expressive arts, use
of, 606
family meetings, 608,
609
historical perspective,
504, 593–595
interdisciplinary and
transdisciplinary
teams, 617, 618
life review and legacy
building, 605, 606
National Consensus
Project for Quality
Palliative Care
(NCP), 595–597
overview, 590, 591,
627, 628
standards for, 593
Panic disorder, 178, 179,
182, 191
Parent–child interaction
therapy (PCIT),
178, 179
Parentifi cation, 358, 508
Parkinson’s disease,
187, 320, 321, 613
Patient-centered medical
home, 117, 118
Patient education. See
Counseling and
education
Patient navigation, 118
Patient Protection
and Affordable
Care Act of 2010
(PPACA), ix, xv, 3,
16–18, 70, 87, 100,
106–107, 109–110,
113–114, 117, 119,
120
Patient Self-
Determination Act,
633, 634
Pay-or-play approach to
employer health-
care coverage, 111
Payment systems,
102–105
Pediatric intensive care
unit, end-of-life
care, 383
Peer Standards Review
Act, 14
Pelton, Garnet, 3, 6, 7,
9–11, 16–18
Pendleton, Helen B., 11
Pepper, Claude, 111
Pepper Commission, 111
Percival, Thomas, 48
Peritoneal dialysis,
468–470, 475–477,
479, 481
Perlman, Helen Harris,
14
Person-in-environment
perspective, 64, 70,
76, 92, 118, 167,
189, 244, 303, 504,
512, 557, 592
Personal Responsibiity
and Work
Opportunity
Reconciliation
Act of 1996
(PRWORA), 107,
109
Pharmaceutical industry,
102, 112
Pharmacogenomics,
565, 566
Pharmacotherapy, 197,
205, 442, 447, 451
Phenotypes, 558, 560,
564, 565, 579
Phenylketonuria (PKU),
563, 566
Philosophy and ethics,
42–46
Phobias, 182, 191
Physical and mental
health
adherence counseling,
200
adolescents, 166
adults, 166
case example, 174
cultural issues,
169–173
differential
assessment of
mental health, 167,
178, 179, 187–199
discrimination, 172,
173
ecological factors,
167, 169
exosystems, 173, 174
family support, 175
information and
psychoeducation,
199, 200
macrosystems,
169–173
mental health
symptoms, domains
related to, 168
mesosystems, 174, 175
microsystems, 175–
198
overview, 164, 205
physical illness, role
of mental health,
166, 167
psychosocial
conditions and
increased risk of
illness, 164–166
psychosocial
conditions in
health-care setting,
assessing, 167–198
psychosocial
interventions, 165,
167, 175, 178, 179,
187, 188, 190,
195–205
resources, 207, 208
role of social workers,
199
routine screenings,
199
and social
relationships, 165,
166
social support, 165,
166, 175
and socioeconomic
status, 77, 172–174
stress, 164, 165, 200,
201
women, 166
Physical environment,
148, 149
Physical therapy/
therapists, 108,
222, 238, 357, 394,
397, 414, 566, 567,
596
Physician-assisted
suicide. See
Euthanasia
Pibloktoq, 241
Play and expressive
therapies, 379, 380,
383
Policy issues. See also
Health policy
function of public
health agencies,
64
genetics, 581, 582
pain management,
617
policy development,
27
public health social
work, 64, 67, 69,
70, 72, 74–76,
78–81, 85, 87–89,
91, 95
for social work,
114–119
Polymorphisms, 562,
567, 569
Popovich, Rose, 23,
25, 27
Population-based
intervention, 89,
90, 94, 646
Positivism, 46
Posttraumatic growth,
377
Posttraumatic stress
disorder (PTSD),
178, 180, 183, 191,
204
Practice settings, public
health social work,
22, 23, 80, 81
Subject Index.indd 696Subject Index.indd 696 9/21/11 7:56 PM9/21/11 7:56 PM
Subject Index 697
Pregnancy. See also
Infants
fetal alcohol
syndrome, 431
gestation, community
effects on, 152, 153
gestational diabetes,
530
gestational
hypertension, 152
Maternal and Child
Health Bureau
(MCHB), 65, 80,
82, 94
Maternal and Child
Health Services
Block Grant (Title
V), 65
maternal mortality,
71, 72
Maternity and Infancy
Protection Act
(Sheppard-Towner
Act of 1921), 65
miscarriage, 152, 436,
562, 573, 574, 635,
637
prenatal genetic
testing, 569, 570,
573, 574
substance use/abuse
during, 431, 433–
436, 439, 452
Preimplantation genetic
diagnosis (PGD),
574
Prenatal genetic testing,
569, 570, 573, 574
Prepaid health care, 105
Prescott, Megan, 478
Prescription drug
benefi ts, Medicare
Part D, 106
Prescriptions. See
Medications
Presidential
Commission for the
Study of Bioethical
Issues, 51, 52, 62
President’s Council on
Bioethics, 52
President’s Emergency
Plan for AIDS
Relief (PEPFAR),
85
Preventive health
services, role of
social workers, 27
Primary care settings,
22–24, 26, 393–396,
399, 408–410, 416
Prisons/prisoners, 22,
51, 58, 80
Privacy issues. See also
Confi dentiality
ethics, 47, 49, 50,
53, 58
genetics and genetic
testing, 576, 579
and intimacy of
health-care settings,
347, 348
in long-term care
settings, 404, 415
and sexuality, 347,
348, 355, 363, 364,
402
student rights, 377, 378
and use of
interpreters, 254
Private agencies and
public health social
work, 81
Project Camelot, 59
Psychiatric disorders.
See also specifi c
disorders
detection, 181, 182
diagnostic criteria,
178, 179
DSM-IV-TR
diagnostic criteria,
178, 179
and homelessness,
189, 190
interventions, 167,
187
mental status exam,
formal, 183–187
not otherwise
specifi ed (NOS),
177, 191
prevalence, 179
screening instruments,
182, 183
and suicide risk, 193
Psychiatrists, 547, 567
Psychoeducation, 167,
198–201, 203–205,
319, 324, 326, 511,
516, 517
Psychological distress,
145, 146
Psychologists, 567
Psychopharmacology,
167, 187, 198, 199,
204, 513
Psychosocial effects of
cancer, 505–510
Psychotherapeutics
(nonmedical use of
prescription drugs),
433, 437–439, 453.
See also Substance
use/abuse
Psychotherapy, 167,
177, 187, 197, 198,
204, 205, 399, 510,
547–548, 639
Public health reform, 5,
6, 65–67, 110–113.
See also Health-
care reform
Public health social work
access to health care,
69–71, 75, 87
benefi t model, 88
climate change, 82, 84
clinical social work
contrasted, 68
community
assessment, 68,
76–78
components of
prevention, 78, 79
defi ned, 64, 65, 68
determinants of
health, 67–70
disaster preparedness
and response,
82–84
disease prevention,
78, 79, 94
emerging issues, 82,
83
federal agencies, 14,
23, 68, 81, 82, 100
functions of public
health agencies, 64
geographic
information system
(GIS), 75, 77, 78,
90, 91
global issues, 82–87
growth of, 80
health-care
disparities, 70–72,
89, 90
history of, 65–67
impact of, 92, 93
interventions, 64, 68,
69, 79, 80
levels of practice, 70,
78–80
local health
departments, 14,
80–82
mental health
services, 89
methodologies for
practice, 64, 65,
75–78
not-for-profi t
agencies, 68, 81
overview, 64, 65
policies, 64, 67, 69,
70, 72, 74–76,
78–81, 85, 87–89,
91, 95
practice settings, 80,
81
private agencies, 81
research, 89, 90
resources, 82
role of social workers,
27, 29, 30, 68
social, economic,
and environmental
justice, 64, 68, 70,
72–75, 81, 87–92
social epidemiology,
64, 68–70, 73,
75–77, 94
standards and
competencies, 94
state agencies, 68,
80–82
terrorism, 82, 84
training for, 81, 82
transdisciplinary
teams, 64, 65, 80,
85, 90
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698 Subject Index
Public Health Social
Work Standards
and Competencies,
94
Public policy. See
Health policy;
Public health
reform
Pulmonary disease, 181,
360, 361, 432
Quality Assessment
and Performance
Improvement
(QAPI), 483
Quality assurance, 27,
34, 483
Quality of health care,
100–102, 119
Quinlan, Karen, 45
Race. See also Ethnicity
discrimination, 172,
173
and genetics, 564,
565
health-care
disparities, 70–72,
116, 144, 145, 172
and obesity, 73
racial segregation,
144
and suicide risk, 192
Radiation therapy, 129,
377, 378, 501–503,
505, 509, 516, 591,
628
Rand Corporation, The,
62
RAND Health Insurance
Experiments, 104
Rational choice
approaches, health
behavior, 128–130,
134, 135
Raymer, Mary, 29
Redlining, 74
Reeve, Christopher, 224
Refl exology, 305
Regulatory standards for
social work, 23
Rehabilitation model of
treatment, 222, 223
Relapse, 441–443,
445–449, 451. See
also Substance use/
abuse
Relapse Prevention
model, 442, 445
Relaxation techniques,
548, 549, 604,
605
Religion and spirituality
children, spiritual
needs of, 383, 384
cultural competence,
170–172, 265
defi ning, 267–272
dimensions of,
269–272
ethical issues, 263,
264
and health, 171, 172,
203, 267, 272–276
intervention,
approaches to, 284,
285
older adults, 266, 273,
274, 276, 404–406
and organ donation,
264
overview, 263–265,
285
prayer and
meditation, 171
refusal of medical
care, 263
refusal to provide
services, 264
religion defi ned, 632
resources, 286, 287
spiritual assessment,
276–284, 597–599
spirituality defi ned,
632
and suicide, 276
U.S. population,
265–267
Renal disease. See End-
stage renal disease
(ESRD)
Reproductive genetic
variation, 559, 560
Reproductive genetics
and infertility,
573–575
Research
complementary
and alternative
medicine, 309
ethics, 47, 57–59
genetics, 567, 568
National Institute of
Health (NIH), 28
public health social
work, 89, 90
role of social workers,
27
use of theory in,
126–128
Reverby, Susan, 58
Rheumatoid arthritis,
15, 153, 242, 308,
374
Richmond, Mary, 6,
49
Risk management, 50
Role of social workers
administration, 30, 31
advocacy, 356, 364,
483–485, 646–647
case management, 25,
28, 29, 31, 230
child abuse, 31, 32
children, 376, 377,
379, 382, 386
collaboration, 32–35
communication in
health care, 25,
242–246
community-based
models of practice,
25, 644, 645
community
improvement,
156–159
counseling, 25
diabetes, 25, 26
disability, 225–229
economic reform, 159
end-of-life care, 26,
627, 629, 637–638
end-stage renal
disease (ESRD),
472, 477–488
entitlement programs,
25
grief counseling, 29,
32, 637
health care, 20–35,
41, 643
health-care teams,
24–28
health policy, 17, 100,
118–119, 644
homelessness, 158
interventions, 24–26,
30
mental health, 89
older adults, 26, 397,
410–412, 644
oncology social work,
498, 504, 505,
510–519
patient advocacy, 29
physical and mental
health, 199
preventive health
services, 27
public health social
work, 27, 29–30,
68
research, 27
sexual health/
sexuality, 347, 363,
364
Romano, Dawn, 31, 32
Roosevelt, Franklin, 110
Roosevelt, Theodore,
110
Royal Free Hospital, 6
Rule utilitarianism, 47
Saunders, Cicely, 594,
628
Schiavo, Terri, 44, 45,
229, 230
Schlinger, Jennifer, 28
Schools. See Education
Screening
versus assessment,
older adults, 408,
409
cancer, 22, 79, 150,
151, 253, 503,
512 (see also
Mammograms)
screening, brief
intervention,
and referral to
treatment (SBIRT),
450
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Screening (cont.)
substance use/abuse,
449–456 (see also
Substance use/
abuse)
Sebelius, Kathleen, 58
Secondary trauma. See
Compassion fatigue
Section 8 housing, 147
Segregation, 144
Self-control exercises,
381
Self-determination, 42,
44, 45, 264, 336,
404, 457, 512, 578,
599, 617, 638. See
also Patient Self-
Determination Act
Self-esteem and body
image, 345, 349,
355–357
Self-management issues,
end-stage renal
disease, 474–476
Self-monitoring
techniques, 538, 604
Settlement houses, 65,
66
Sexual abuse, 352, 353
Sexual assault, 22, 26,
68, 179, 180
Sexual health/sexuality
adolescents, 353, 355,
357, 358
advocacy role of social
workers, 356, 364
and cancer, 343, 347,
352, 354, 356,
359–362, 500,
505–510
childhood sexual
abuse, 352, 353
communication
issues, 346, 356,
359
couples, working
with, 358, 359
developmental
perspective, 354–
358
end-stage renal
disease (ESRD),
473
erectile dysfunction,
354, 360–362
and heart disease,
355, 359, 360
and HIV/AIDS, 361
illness and injury,
effect of, 346, 350,
353, 356, 359–364
and income level, 150
intimacy of health
social work,
347–351
lesbian, gay, bisexual,
and transgender
(LGBT) issues,
346, 347, 350, 355
masturbation, 345,
346, 352–355, 357,
359, 363, 364
medications, side
effects of, 361
Milestones in Sexual
Development
(Zoldbrod), 344, 345
older adults, 353–355
overview, 343, 364,
365
physical intimacy,
institutional
obstacles, 343
privacy issues, 347,
348, 355, 363, 364
pulmonary disease,
360, 361
and renal disease, 360
resources, 365, 366
role of social workers,
347, 363, 364
self-esteem and body
image, 345, 349,
355–357
sensuality, 343
sexual development,
344–347
sexual disen-
franchisement
by medical
establishment, 345,
346
sexual history,
obtaining, 348–351
sexual rehabilitation,
353, 354, 362, 363
sexual response, 353,
354
sexuality, 343
and spinal cord
injuries, 353, 358,
360–361
young adults, 355–
357
Sexual relationships,
ethical issues, 54,
55
Sickle cell disease, 561,
575, 582
Simple phobia, 178
Skilled nursing
facilities, 22, 106
Smallpox, 65
Smoking. See also
Tobacco use
cessation, 68, 134,
135, 201, 432
and income levels,
145, 150
and mental health
symptoms, 188, 189
public health
concerns, 68–70,
92
social network
analysis, 92
Social Action Theory,
131, 132, 135
Social capital, 88, 157,
166
Social causation,
173–174
Social determinants of
health, 67, 69, 72,
77, 149
Social, economic, and
environmental
justice, 64, 68, 70,
72–75, 81, 87–92
Social epidemiology, 64,
68–70, 73, 75–77,
94
Social illnesses and
problems, 22
Social justice, 43, 44,
49, 64, 68, 70, 72,
81, 82, 87, 88, 90,
101, 118, 447, 512,
590
Social model of
disability, 223,
224
Social network analysis
(SNA), 91, 92
Social networks, 91,
92, 131, 132, 165,
166
Social norm, 130
Social phobia, 178, 182
Social reform
movements, 65, 66
Social relationships
and community effect
on health, 148
and physical and
mental health, 165,
166, 175
and sexual practices,
150
Social Security Act of
1935
and social work, 14, 65
Title V, 65, 80, 94
Social selection, 173
Social support
cancer, 21, 504–506,
509, 510, 513, 514
and cancer survival,
187
and chronic pain, 598
and health status, 21,
22, 203
and physical and
mental health, 165,
166, 175, 189, 190,
203
religious groups, 267,
272–274
social work
assessment, 24
Social workers
autonomous
practitioners, 646
challenges for,
384–386
education and training.
See Education and
training for social
workers
generalists and
specialists, 645,
646
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700 Subject Index
profi les, 23, 25, 27
recognition of, end-
of-life care, 637,
638
research as part of
practice, 646
roles (see Role of
social workers)
self-care issues, 618,
619
skills required, 576,
645, 646
transdisciplinary
team in genetics,
566–569
Social work ethics, 41,
42, 49, 50. See also
Ethics and ethical
issues
Social Work Policy
Institute, 28
Socioeconomic status
(SES)
as barrier to health
care, 21, 24
community effects on
health, 153, 154
and diabetes, 531
and health care
disparities, 17, 70–
73, 169, 246–248,
471, 500, 616, 617
and insurance
coverage, 174
and lung cancer rates,
69
and obesity, 128, 150
and physical and
mental health, 77,
172–174
Somatic mutations, 561,
562
Somatization, 170
Speaker/Listener
Technique, 359
Special needs, 80, 117,
331, 374, 570
Speech and language
assessment of as part
of mental status
exam, 183, 185
language barriers,
70, 174, 242,
253–255 (see also
Interpreters)
Speech therapy/therapists,
21, 566, 567, 630
Speedwell Society, 5
Spinal cord injuries
medical model
approach, 223, 224
role of social workers,
225
and sexual health/
sexuality, 353, 358,
360, 361
suicide risk, 193
SPIR questions
for spiritual
assessment, 280
Spiritual assessment,
276–284, 597–599.
See also Religion
and spirituality
Spiritual ecogram, 282
Spiritual ecomaps, 282
Spiritual genograms,
281, 282
Spiritual life maps, 281
Spiritual needs of dying
child, 383, 384
Spirituality. See
Religion and
spirituality
Stage models of
adjustment to
disability, 226, 227
Stages of change, 134,
201, 445, 446
Staging, cancer, 500–502
Standards
cultural competence,
633
end-of-life care, 593,
633, 638
ethics, 44
palliative care, 593
public health social
work, 94
regulatory standards
for social work, 23
State agencies and
public health social
work, 68, 80–82
State Children’s Health
Insurance Program
(SCHIP), 75, 87,
100, 101, 105, 107,
109, 110, 113, 118,
119, 121
Stearns, Naomi, 504
Stewart, Mary, 6, 16, 18
Stites, M. A., 11
Stress
and increased risk for
illness, 164, 165
management, 200, 201
mindfulness-based
stress reduction
(MSBR), 200
and socioeconomic
status, 174
Stress inoculation, 15
Stroke, 145, 148, 153,
179, 185, 187, 309,
321, 529, 530. See
also Cardiovascular
disease
Structural genetic
variation, 559–562
Substance Abuse
and Mental
Health Services
Administration, 82
Substance dependence,
427–429. See also
Substance use/
abuse
Substance-induced
disorders, 428. See
also Substance use/
abuse
Substance use/abuse
abstinence violation
effect, 442, 443
addiction, 426–429,
616, 617
alcohol, 429–431,
450–456
Alcoholics
Anonymous (AA),
429, 439–441, 456
alcoholism, 428, 429
AUDIT (Alcohol
Use Disorders
Identifi cation Test),
454, 455
behavioral strategy
with use of
vouchers or
incentives, 448
brief interventions,
450, 456, 457
CAGE-AID (CAGE
Adapted to Include
Drugs), 454
CAGE questionnaire,
453, 454
and cancer, 431–434
cannabis (see
Marijuana
[cannabis] under
this heading)
as cause of end-stage
renal disease, 469
co-occurring
psychiatric
disorders, 168, 189,
197, 449
cocaine, 427, 434,
435, 442, 443, 447,
448, 547
cognitive-behavioral
and motivational
enhancement
therapy, 442
commonly used
substances, 429–439
conceptualizing/
addressing
problems,
approaches for,
439–449
craving, 427, 428
criminal sentencing,
447, 448
defi nitions, 426–428
dependence, 427–429,
616
Diagnostic and
Statistical
Manual of Mental
Disorders, Fourth
Edition, Text
Revision (DSM-
IV-TR) substance-
related disorders,
427–429
diagnostic categories,
428, 429
Substance use/abuse
(cont.)
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disease models,
440–442
Drug Abuse
Screening Test
(DAST), 456
family-oriented
intervention, 448,
449
FRAMES (Feedback,
Responsibility,
Advice, Menu,
Empathy, and Self-
effi cacy), 457
and genetics, 565–566
hallucinogens, 436, 437
harm reduction
approach, 446–448
heroin, 435, 436
and HIV/AIDS, 431,
432, 434–436, 444,
448, 452, 453
and homelessness, 146
inhalants, 433, 437
interventions, 439–
450, 456, 457
intoxication, 427, 428
and liver disease, 431,
437
marijuana (cannabis),
147, 174, 427, 433,
434, 443, 444, 448,
452
Matrix model
intervention, 448
and medical care, 22
and mental health
symptoms, 188,
189
methadone treatment,
436, 442, 447, 448
methamphetamine,
438, 439, 443
Michigan Alcoholism
Screening Test
(MAST), 456
moral and temperance
perspectives, 440
motivation and
change theory
perspectives,
443–446
motivational
enhancement
therapy (MET), 444
motivational
interviewing, 443–
445, 449
older adults, 398, 404,
452, 454, 456
opioids (see Psycho-
therapeutics under
this heading)
pain management and
palliative care, 438,
439
patient placement,
449
pharmacotherapies,
442
in pregnancy, 431,
433–436, 439, 452
pseudoaddiction, 617
psychological models,
442, 443
psychotherapeutics
(nonmedical use of
prescription drugs),
433, 437–439, 453
relapse, 441–443,
445–449, 451
Relapse Prevention
model, 442, 445
resources, 459, 460
risk factors, 453
screening, 449–456
screening, brief
intervention,
and referral to
treatment (SBIRT),
450
stereotypes, 429
substance abuse, 428
substance dependence
(see Dependence
under this heading)
substance-induced
disorders, 428
substance use
disorders, 173, 176,
177, 180, 182, 183,
188–190, 193, 197,
205, 428
substance use
problems, 427
substance versus
drug, 427
and suicide risk, 193
terminology, 426–428
TICS (Two-
Item Conjoint
Screening), 455
tobacco, 431–433
tolerance, 427, 428,
616
transtheoretical/stages
of change model,
445, 446
12-step programs,
439, 441, 443, 444
withdrawal, 427–428,
436
Sudden infant death
syndrome (SIDS),
77, 78, 433, 436
Suicide and suicidal
behavior. See also
Assisted suicide
assessment, 194, 195
and disability, 228
end-stage renal
disease patients,
472
ethical issues, 45
interventions, 195–
198
older adults, 194, 198,
399, 410
overview, 192–194
physician-assisted
suicide, 229
and religion, 276
social illness and
problems, 22
and substance use/
abuse, 193
Supernatural causes of
illness, 239
Supplemental Nutrition
Assistance Program
(SNAP), 82
Supplemental Security
Income (SSI), 107
Support groups, 26, 376,
377, 508, 510, 511
Survivorship issues,
509, 510
Susto, 241
Symptom management,
591. See also Pain
management
System dynamics (SD),
91
Tarasoff v. Board of
Regents of the
University of
California, 46,
47
Task-centered case
work, 15
Taxes, 103, 106, 107,
111, 119
Tay-Sachs disease, 575
Teenagers, 25. See also
Adolescents; Young
adults
Teleontological theory,
46, 47
Temporary Assistance
for Needy Families
(TANF), 107
Terrorism, 82, 84
Theory of Planned
Behavior, 128,
130–132, 135
Theory of Reasoned
Action, 128–132,
135
Therapeutic touch (TT),
305
Thought processes,
content, and
perception,
assessment of, 183,
185, 186
Thrifty gene hypothesis,
151
TICS (Two-Item
Conjoint
Screening), 455
Title V of the Social
Security Act of
1935
Children with Special
Health Care Needs,
80
Maternal and Child
Health Services
Block Grant, 65,
80
Maternal and Child
Health Services
Subject Index.indd 701Subject Index.indd 701 9/21/11 7:56 PM9/21/11 7:56 PM
702 Subject Index
Bureau (MCHB),
94
programs, 94
Tobacco use, 431–433.
See also Smoking;
Substance use/
abuse
Traditional Chinese
medicine (TCM),
296, 300, 302,
310
Transdisciplinary teams
genetics, 566–569
public health social
work, 64, 65, 80,
85, 90
Transgender issues.
See Lesbian,
gay, bisexual,
and transgender
(LGBT) issues
Translation. See
Interpreters
Transplants. See Organ
transplants
Transtheoretical Model
(TTM), 134
Transtheoretical/stages
of change model,
445, 446
Trauma, 179–181. See
also Posttraumatic
stress disorder
(PTSD)
Trauma-focused
cognitive
behavioral
treatment (TF-
CBT), 205
Traumatic medical
experiences,
379
Trisomy 13, 573
Trisomy 18, 573
Trisomy 21, 574
Truman, Harry, 110
Tuberculosis, 10
Turner syndrome
(monosomy X),
574
Tuskegee Study, 58,
571
Tuskegee University
National Center
for Bioethics in
Research & Health
Care, 58, 62
12-step programs, 439,
441, 443, 444. See
also Substance use/
abuse
Undocumented
immigrants, 16,
109, 114, 115
Uninsured, 114–116
Unipolar major
depression, 178
U.S. Department of
Agriculture, 82
U.S. Department of
Health and Human
Services (DHHS),
65, 66, 82
Utilitarianism, 47
Utility doctrine, 47
Vaccinations. See
Immunization
Values, 43, 45
Veterans Administration
(VA). See also
Military issues
genetic testing
policies, 581
geriatric evaluation
and management
(GEM) approach,
395, 396
and social work, 14
Vicarious
traumatization,
385, 386
Virtue ethics, 48
Voltaire, F., 41
Wagner-Murray-Dingell
bill, 110, 111
Wald, Florence, 628
Wald, Lillian, 66
Warren, Marjory, 394
Washburn, Frederic, 10
Whistle-blowing, 42, 51,
56, 57
Williamson, Mildred, 23
Wilson, Woodrow, 110
Winslow, Charles-
Edward Amory, 64
Withdrawal, 427–428,
436. See also
Substance use/
abuse
Women
and cancer, 175,
498–500
and depression, 166,
167
pregnancy (see
Pregnancy)
and suicide, 192
Women, Infants, and
Children (WIC),
82
World Health
Organization
(WHO), 72, 220,
242, 278, 454, 460,
591
World War I, 13
World War II, 14
X-linked inheritance,
560, 561, 569,
580
Young adults, 192,
355–357. See also
Adolescents
Zakrzewska, Marie, 5
Zoldbrod’s Milestones
in Sexual
Development, 344,
345
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HANDBOOK OF HEALTH SOCIAL WORK
Contents
Foreword
Acknowledgments
List of Contributors
Introduction
PART I FOUNDATIONS OF SOCIAL WORK IN HEALTH CARE
1 Conceptual Underpinnings of Social Work in Health Care����������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������
2 Social Work Roles and Health-Care Settings����������������������������������������������������������������������������������������������������������������������������������������������������
3 Ethics and Social Work in Health Care�������������������������������������������������������������������������������������������������������������������������������������
4 Public Health and Social Work�������������������������������������������������������������������������������������������������������������
5 Health Policy and Social Work�������������������������������������������������������������������������������������������������������������
6 Theories of Health Behavior�������������������������������������������������������������������������������������������������������
PART II HEALTH SOCIAL WORK PRACTICE: A SPECTRUM OF CRITICAL CONSIDERATIONS
7 Community and Health����������������������������������������������������������������������������������
8 Physical and Mental Health: Interactions, Assessment, and Interventions�������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������
9 Social Work Practice and Disability Issues����������������������������������������������������������������������������������������������������������������������������������������������������
10 Communication in Health Care�������������������������������������������������������������������������������������������������������������
11 Religion, Spirituality, Health, and Social Work����������������������������������������������������������������������������������������������������������������������������������������������������������������������
12 Developing a Shared Understanding: When Medical Patients Use Complementary and Alternative Approaches����������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������
13 Families, Health, and Illness����������������������������������������������������������������������������������������������������������������
14 Human Sexual Health����������������������������������������������������������������������������������
PART III HEALTH SOCIAL WORK: SELECTED AREAS OF PRACTICE
15 Social Work With Children and Adolescents With Medical Conditions����������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������
16 Social Work With Older Adults in Health-Care Settings����������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������
17 Substance Use Problems in Health Social Work Practice����������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������
18 Nephrology Social Work�������������������������������������������������������������������������������������������
19 Oncology Social Work�������������������������������������������������������������������������������������
20 Adherence and Mental Health Issues in Chronic Disease: Diabetes, Heart Disease, and HIV/AIDS�������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������
21 Social Work and Genetics�������������������������������������������������������������������������������������������������
22 Pain Management and Palliative Care����������������������������������������������������������������������������������������������������������������������������������
23 End-of-Life Care�������������������������������������������������������������������������
Afterword
About the Editors
Author Index
Subject Index