Article downloaded…..
read the following article from the South University Online Library on the impact of disease on family members:
Golics, C. J., Basra, M. K. A., Finlay, A. Y., & Salek, S. (2013). The impact of disease on family members: A critical aspect of medical care. Journal of the Royal Society of Medicine, 106(10), 399–407.
After reviewing the article, respond to the following questions.
- Which factor do you feel has the most impact on family members?
- Support your response with examples from readings.
- What are some of the reasons it is important to include the support persons in the plan of care?
Review
The impact of disease on family members: a critica
l
aspect of medical ca
r
e
Catherine Jane Golic
s
1,
2
, Mohammad Khurshid Azam Basr
a
2
, Andrew Yule Finlay
2
and Sam Salek
1
1
Centre for Socioeconomic Research, School of Pharmacy and Pharmaceutical Sciences, Cardiff University, King Edward VI
I
Avenue, Cardiff, CF10 3NB, UK
2
Department of Dermatology and Wound Healing, School of Medicine, Cardiff University, Cardiff, CF14 4XW, UK
Corresponding author: Catherine Jane Golic
s.
Email: catherinegolics@hotmail.co
m
Summary
Most existing health-related quality of life research con
–
cerns the impact of disease on patients. However, in several
medical specialties including dermatology, oncology, an
d
physical and mental disability, studies have been carried
out investigating the impact of disease on the lives of
families of patients. The aim of this paper is to review the
literature which relates to the impact of disease on family
members of patients. The OVIDSP Medline was selected as
the primary database, Searches were limited to sources
published in English. 158 papers were identified fo
r
review. The definition of ‘‘family’’ varied across the litera-
ture, and a broad definition was accepted in this review
.
This review shows that a wide variety of aspects of family
members’ lives can be affected, including emotional, finan-
cial, family relationships, education and work, leisure time
,
and social activities. Many of these themes are linked to
one another, with themes including financial impact and
social impact being linked to emotional impact. Some pos
i-
tive aspects were also identified from the literature,
including family relationships growing stronger. Several
instruments exist to measure the impact of illness
on the family, and most are disease or specialty-
specific. The impact of disease on families of patients is
often unrecognised and underestimated. Taking into
account the quality of life of families as well as patients
can offer the clinician a unique insight into issues suc
h
as family relationships and the effect of treatment
decisions on the patient’s close social group of partner
and family.
Introduction
Quality of life (QoL) of individuals is closely related
to the QoL of those around them, includingpartners
or parents
1
. Therefore, any chronic illness carries the
potential to impact on the life of the family
Compared to parents of healthy children, parents of
children with chronic diseasereport lower self-
development, restrictions on their well-being and
emotional stability and lower levels of daily
functioning.
2
Most studies on quality of life focus
on assessing the quality of life of patients. Family
quality of life has been explored in dermatology,
3–9
oncology,
10–21
and in the field of physical and mental
disability,
22–28
but little is known about the impact
of disease on families of patients in many other
specialties. Several key review articles have been writ-
ten concerning the impact of illness on the quality
of life of the partner,
1
the impact of cancer on
the family,
14,19
the carer burden in mental health
illnes
s,
22
the impact of chronic childhood illness
on siblings,
29
and the impact of chronic disease
in the elderly on the patient’s family.
30
Family
members of patients are sometimes also carers,
but those who do not act as carers are often
still impacted. The aim of this paper is to review
the literature relating to the impact of disease on
all family members of patients, not just carers, and
identify common themes. Instruments used to assess
the quality of life of family members are also
reviewed.
Methods
The OVIDSP Medline was selected as the primary
database. This included the following resources:
Cardiff University Books and Journals,
PsycArticles, AMED (Allied and Complementary
Medicine), British Nursing Index 1985-present,
Embase 1947-present, HMIC (Health Management
Information Consortium), ICONDA 1976 to June
2011, Medline In Process, Medline 1947-present,
and PsycINFO 1806 to July Week 1 2011. A search
of the Compendium of Quality of Life Instruments
was also carried out.
31,32
Searches were limited to
sources published in English.
The main search term ‘‘family quality of life’’ was
also substituted with ‘‘impact/effect on family’’, and
‘‘secondary impact’’, and these were combined with
‘‘disease’’ (Table 1). The term ‘‘partner’’ was also
! The Royal Society of Medicine 201
3
Reprints and permissions: sagepub.co.uk/journalsPermissions.nav
Journal of the Royal Society of Medicine; 106(10) 399–407
DOI: 10.1177/0141076812472616
used. ‘‘Impact on family’’ was combined with several
common medical specialties. Each abstract identified
was read to determine the type of study and its rele-
vance. Where appropriate, the full paper was read
in
detail. To be included, a source had to be an original
paper concerned with the impact of any illness or
disability on the family of patients. Two measures
of possible relevance to the impact of disease on
family members of patients were identified.
Results
Search results
In total, 1517 abstracts were screened, and 158 were
identified for review of the full paper. Of these, 63
articles highlighted at least one aspect which was
not covered in other articles. Articles were rejected
if, after fully reading them, their content was already
covered by other articles. No sources were identified
when combining the search term ‘‘impact on family
’’
with several major medical specialties and only 13
sources were identified using the term ‘‘impact of dis-
ease on family’’ (Table 1). Several sources were
rejected for use of the term ‘‘family’’ in an irrelevant
context, for example articles about genetics.
The majority of articles reviewed concerned family
members of patients of one medical specialty or spe-
cific disease, and were often limited to one particular
family member, for example partners. No informa-
tion was found regarding the more general impact
of disease on families of patients over more than
one specialty. However, many of the studies revealed
similar ways that family members of patients were
impacted by disease. In this review, only original art-
icles were included.Table 2 summarises the studies
which included a control group.
Definition of Family
The term ‘‘family’’ is difficult to define. The mid 20th
century concept of family, with heterosexual parents
and offspring living under the same roof is now
seldom used, and many authors now consciously
use a wider definition of family. The dynamics
between family members are constantly evolvin
g
and there is evidence of many diverse family types
in modern western European society
33
. Poston
et al.
3
4
define family as ‘‘people who think of them-
selves as part of the family, whether by blood or ma
r-
riage or not, and who support and care for each other
on a regular basis’’, and this definition is thought to
acknowledge the diverse social arrangements that
may constitute a family.
35
In other studies, the
terms ‘‘family’’, ‘‘informal carer’’, and ‘‘carer’’ are
used interchangeably.
20,36
For this review, we have
taken a broad view of the term family and accepted
each authors interpretation as valid. Where studies
refer to carers, it was ensured that this related to
family carers.
Key impact areas
Most chronic diseases have similar effects on family
members including psychological and emotional
functioning, disruption of leisure activities, effect on
Table 1. Results of key search terms.
Key search term(s) used
Number of
references
retrieved
Family quality of life 193
Impact on family 2493
Impact of disease on family 13
Effect on family 1349
Effect of disease on family 3
Familyþdisease 388
Family scale 491
Family measurement 113
Impact on familyþsurgery 0
Impact on familyþmedicine 12
Impact on familyþdermatology 0
Impact on familyþpsychiatry 0
Impact on familyþrespiratory 0
Impact on familyþcardiology 0
Impact on familyþrenal 0
Impact on familyþgynaecology 0
Impact on familyþpaediatrics 0
Impact on familyþurology 0
Impact on familyþgastroenterology 0
Impact on familyþdisability 0
Greater patient 29
46
Secondary impact 165
Impact on partner 113
Chronic diseaseþ family 38
400 Journal of the Royal Society of Medicine 106(10)
interpersonal relationships, and financial resources
(Figure 1). However there may be some aspects
which attain dominance in one particular disease as
compared to other diseases. Several common themes
were identified from the studies reviewed. Leisure and
social impact were reported separately in much of the
literature, and hence are reported as separate themes.
Further examples of less common themes mentioned
are summarised in Table 3.
Emotional impact
Family members suffer greatly from the emotional
effects of living with, and caring for, a relative with
a disease, with the impact of some diseases being felt
by every member of the family.
37
Emotional impact
was the most common topic discussed in the litera-
ture. The psychological distress felt by family mem-
bers often results from their feelings of helplessness
and lack of control.
3,38
Many different emotions are
mentioned by family members; guilt, anger, worry,
upset, frustration, embarrassment, despair, loss,
relief. Each emotion affects family members in differ-
ent ways and to different extents, often depending on
the disease severity of the patient,
39,40
and the period
of time that has passed since the diagnosis.
13
Female partners of cancer patients had higher psy-
chological distress than male partners.
12
However, no
significant difference was seen between genders when
measuring overall quality of life of relatives.
There may be gender differences in responses to care-
giving,
16,19,41,42
although there was no difference in
the well-being of partners of rheumatoid arthritis
patients, based on the gender of the patient.
43
It is
not just the parents and partners who are affected
emotionally by a relative’s disease.
29
For example,
siblings of children with pervasive developmental dis-
order suffered from ‘‘significant adjustment prob-
lems’’ compared to a control group.
24
Financial impact
One of the greatest burdens on family members of
patients is the financial cost to the family.
44
This
can include treatment costs, transport to appoint-
ments, the cost of hiring a carer, and adapting their
home environment. In a Canadian study,
45
families
spent on average C$624 per month on care or support
for the patient with an intellectual disability; many
described not having any money left at the end of
the month. In a similar USA study, the financial
impact on families caring for patients with dementia
varied from US$3630 to US$17700 depending on the
severity of the patient’s dementia.
46
The financial strains felt by family members of
patients often lead to stress and worry. Family mem-
bers of dermatology patients increase their working
hours in order to support their family financially, and
many need state benefits to cover the extra costs
which may lead to compromises for other family
Table 2. Summary of studies that included a control group.
Reference number Family member group Control Summary
2 Parents of children diag-
nosed with cancer, dia-
betes or epilepsy.
Parents of healthy
children.
Parents of children diagnosed with cancer, dia-
betes or epilepsy reported significantly lower
quality of life compared with healthy
controls.
However they were also more satisfied with
their family situation compared with healthy
controls.
9 Families of children with
atopic dermatitis.
Families of healthy
children.
Families of children with atopic dermatitis have a
lower family function level than families of
healthy controls.
12 Male and female partners
of cancer
patients.
Healthy couples. Female cancer patients and female partners of
patients perceived more psychological distress
and a lower quality of life than women in
healthy couples. Psychological distress and
quality of life did not differ between ma
le
partners of patients and their healthy controls.
51 Family members of over-
active bladder (OAB)
patients.
Family members of
healthy individuals.
The OAB-FIM discriminated between OAB and
control family members. OAB family members
demonstrated significant impact on quality of
life.
Golics et al. 401
members.
3
When caring for a child with cerebral
palsy, providing even the basic necessities put finan-
cial pressure on the parents,
47
and accessing funding
was also challenging, which again increased stress
and emotional effects. The difficulties involved in
accessing funding are greater in low income families,
who often receive minimal support and face greater
problems with social functioning and relationships.
48
Impact on family relationships
Family members of patients experience a negative
effect on their family relationships, both between
the relative and the patient, and between other mem-
bers of the family as a result of the patient’s illness.
Poor family relationships do not bode well for
chronic disease management regardless of the disease
and often family members find relationships difficult
as they do not know how to emotionally support each
other.
49
Family members of patients with multiple
sclerosis reported negative effects on their relation-
ships with each other, resulting in arguments, tension,
and a lack of understanding of each other’s feelings.
37
In particular, relatives struggle to deal with patients
whose beliefs, outlook, and behaviour have altered as
a consequence of their disease. There was little time
for relationships between other members of the
family. For example, Golics et al.
50
found that 38%
of adolescents with dermatological conditions felt
that their family relationships had been affected as
a result of their condition.
Table 3. Examples of other ways disease impacts on the lives
of family members.
Affecting sleep
2,4,6,9,21,48,58,62,67
Concerns about medical treatment
2,4,62,68
Altered food choices
2,6,69
Using religion, spiritual and cultural beliefs to
cope
2,11,13,46,59
Feeling obliged to give care
41
Concerns about receiving information about the disease
and understanding
13,21,37,62
Needing support from others
15,46,70
Limited freedom
48
Worrying about death of the patient
17,21,62
Figure 1. A man whose chronic disease is affecting the lives of his family.
402 Journal of the Royal Society of Medicine 106(10)
Partners of patients experience a negative effect on
their sex lives as a result of the patient’s disease,often
as a result of the patient’s symptoms
51
or not having
time to spend together as a couple due to another
family member’s illness.
3
It can lead to friction
between couples, and in some cases can lead to the
breakdown of relationships, or partners seeking
sexual encounters outside the relationship.
3,6
However, in some families relationships can grow
stronger,
52
as the family members work together to
help each other and become more closely knit. In
families with a child with an intellectual disability,
the majority were taking the initiative to maintain
good family relations, and engaging in family activ-
ities to encourage this.
45
An increase in family close-
ness was also found in families of cancer survivors;
one husband of a survivor said ‘‘I look at life differ-
ently after that. I feel much closer to her.’’
15
Education and work
Living with, or caring for, a relative with a disease
can have a large impact on the education and careers
of family members. This could include disruption of
school work in siblings or children of the patients, or
the employment of adults being affected and the
burden of care placed upon them. Some families of
children with disabilities
45
felt that some of their
family members would not be able to attend work
or school in the near future. One family member is
quoted: ‘‘The unpredictable natures of our children’s
health and lives does not often fit with a typical, pro-
gressive work profile’’.
45
In eight of the 34 families
studied, one or both parents had given up an educa-
tion or career to care for their child with a disability.
40% of family members of dermatology patients felt
that their employment was affected by their family
member’s skin condition.
3
Reasons included needing
to look after the patient, attendinghospital appoint-
ments, and emotional effects affecting work. Looking
after a patient with cancer can also have a huge
impact on a family member’s work on a day-to-day
basis.
20
Family member carers were reporting late for
work, missing work, spending time at work talking
on the telephone to their relative and some left work
due to their carer responsibilities.
Leisure time
An important part of family QoL is family members
being able to participate in the hobbies they enjoy.
34
The barriers that prevent families from taking advan-
tage of leisure opportunities
45
link into other domains
of family quality of life, including lack of time due to
the responsibilities of care, limited finance, and lack
of support available. However, encouragingly, it has
been shown that when family members do take the
initiative to plan leisure activities, they usually work
out positively, despite the restrictions due to the rela-
tive’s illness, and families show high satisfaction with
this achievement.
45
Family members also find difficulty in taking
family holidays, often depending on the disease
state of their relative. Problems with finding suitable
accommodation can make holiday planning ‘‘awk-
ward’’.
47
Relatives of patients with skin diseases
described limitations of holiday planning, for exam-
ple not wanting to swim together at the beach or their
relative having to wear certain types of clothes.
4
Social impact
The burden on family members caring for a person
with a disease has a drastic effect on their social
lives.
3,4,34,47
Mothers caring for disabled children
felt that their lives were so different from their friends
and felt that they could only contribute to depressing
conversations, and therefore lost friends as a result.
47
Other family members described friends ‘‘drifting
away’’, as they do not understand the family
situation.
37
A large number of individuals with a relative suf-
fering from a skin disease complained of social dis-
ruption.
4
Conditions which result in visible signs of
disease (for example basal cell carcinoma on the face
or chronic obstructive pulmonary disease requiring
oxygen therapy) may have a greater effect on the
social lives of patients and their relatives, for fear of
strangers’ reactions to their visible condition.
Mothers of adolescent patients suffering from severe
chronic pain reported more restrictions in their social
life than mothers of children with less severe chronic
pain and the authors suggest that this could be dir-
ectly related to the illness.
53
Instruments to measure family quality of life
Several studies have lead to the development of
instruments designed to measure the impact of dis-
ease on families of patients.
3,26,54,55
However, these
instruments are mostly disease or specialty specific,
and can therefore only be used to assess the quality
of life of the family of a particular group of patients.
The Family Dermatology Life Quality
Index(FDLQI) is a ten-item questionnaire designed
to measure the quality of life of family members of
dermatology patients.
56
This validated instrument
contains items such as ‘‘Over the last month how
much emotional distress have you experienced due
to your relative/partner’s skin disease (e.g. worry,
Golics et al. 403
T
a
b
le
4
.
A
su
m
m
a
ry
o
f
th
e
c
h
a
ra
c
te
ri
st
ic
s
o
f
f
a
m
il
y
q
u
a
li
ty
o
f
li
fe
m
e
a
su
re
s.
N
a
m
e
o
f
m
e
a
su
re
P
o
p
u
la
ti
o
n
N
u
m
b
e
r
o
f
it
e
m
s
C
o
v
e
ra
g
e
C
o
m
p
le
ti
o
n
ti
m
e
O
ri
g
in
M
o
d
e
o
f
a
d
m
i
n
is
tr
a
ti
o
n
F
ra
m
e
o
f
re
fe
r
e
n
c
e
L
a
n
g
u
a
g
e
s
S
c
a
le
O
th
e
r
Im
p
a
c
t-
o
n
-F
a
m
il
y
S
c
a
le
2
6
P
a
re
n
ts
o
f
c
h
il
–
d
re
n
w
it
h
c
h
ro
n
ic
il
ln
e
ss
2
4
F
o
u
r
d
im
e
n
si
o
n
s
(f
a
c
–
to
rs
):
F
in
a
n
c
ia
l,
S
o
c
ia
l,
P
e
rs
o
n
a
l
st
ra
in
a
n
d
M
a
st
e
ry
1
0
m
in
u
te
s
F
a
m
il
y
m
e
m
b
e
r
in
te
r
v
ie
w
s
S
e
lf
-a
d
m
in
is
te
re
d
o
r
in
te
r-
v
ie
w
e
r-
a
d
m
i-
n
is
te
re
d
if
lo
w
re
a
d
in
g
le
ve
l
‘‘
a
t
th
e
p
re
s
e
n
t
ti
m
e
’’
E
n
g
li
sh
a
n
d
S
p
a
n
is
h
L
ik
e
rt
A
re
v
is
e
d
1
5
-i
te
m
v
e
rs
io
n
w
a
s
c
re
at
e
d
in
2
0
0
3
w
h
ic
h
sh
o
u
ld
b
e
u
se
d
a
s
re
p
la
c
e
–
m
e
n
t
o
f
th
e
e
a
rl
ie
r
in
st
ru
m
e
n
t.
B
e
a
c
h
C
e
n
te
r
F
a
m
il
y
Q
u
a
li
ty
o
f
L
if
e
S
c
a
le
5
4
F
a
m
il
y
m
e
m
–
b
e
rs
o
f
c
h
il
–
d
re
n
w
it
h
a
d
is
a
b
il
it
y
2
5
F
iv
e
d
o
m
a
in
s:
F
a
m
il
y
in
te
r
a
c
ti
o
n
,
P
a
re
n
ti
n
g
,
E
m
o
ti
o
n
a
l
w
e
ll
–
b
e
in
g
,
P
h
y
si
c
a
l/
m
a
te
ri
a
l
w
e
ll
-b
e
in
g
a
n
d
D
is
a
b
il
it
y
–
re
la
te
d
su
p
p
o
rt
s
1
5
m
in
u
te
s
F
a
m
il
y
m
e
m
b
e
r
in
te
rv
ie
w
s
a
n
d
fo
c
u
s
g
ro
u
p
s
S
e
lf
– a
d
m
in
is
tr
a
ti
o
n
C
u
rr
e
n
t
e
.g
.
‘‘
h
o
w
sa
ti
s-
fi
e
d
a
m
I
th
a
t.
.
.?
’’
E
n
g
li
sh
,
S
p
a
n
is
h
a
n
d
C
h
in
e
se
L
ik
e
rt
T
h
e
sc
a
le
w
a
s
la
te
r
te
st
e
d
in
fa
m
il
ie
s
o
f
n
o
n
–
d
is
a
b
le
d
c
h
il
–
d
re
n
a
n
d
p
ro
v
e
d
to
h
av
e
p
sy
c
h
o
–
m
e
tr
ic
v
a
li
d
it
y.
F
a
m
il
y
Q
u
a
li
ty
o
f
L
if
e
S
u
rv
e
y
2
8
M
a
in
c
a
re
g
iv
e
rs
o
f
p
e
o
p
le
w
it
h
in
te
l-
le
c
tu
a
l
o
r
d
e
v
e
lo
p
–
m
e
n
ta
l
d
is
a
b
il
it
ie
s
9
p
a
rt
s,
to
ta
l
o
f
4
9
it
e
m
s,
m
a
n
y
in
c
lu
d
e
m
u
lt
ip
le
p
a
rt
s
C
o
v
e
rs
9
a
re
a
s
o
f
fa
m
il
y
li
fe
:
h
e
a
lt
h
,
fi
n
a
n
c
ia
l
w
e
ll
-b
e
in
g
,
fa
m
il
y
re
la
ti
o
n
sh
ip
s,
su
p
p
o
rt
fr
o
m
o
th
e
rs
,
su
p
p
o
rt
fr
o
m
se
rv
ic
e
s,
in
fl
u
–
e
n
c
e
o
f
v
a
lu
e
s,
c
a
r-
e
e
rs
,
le
is
u
re
a
n
d
re
c
re
a
ti
o
n
,
a
n
d
c
o
m
m
u
n
it
y
in
te
g
ra
ti
o
n
6
0
m
in
u
te
s
P
re
v
io
u
s
re
se
a
rc
h
,
e
x
p
e
rt
o
p
in
io
n
S
e
lf
-a
d
m
in
is
tr
a
–
ti
o
n
o
r
a
d
m
in
is
tr
a
ti
o
n
b
y
a
re
se
a
rc
h
e
r
Q
u
e
st
io
n
s
re
la
te
to
th
e
p
re
se
n
t
a
n
d
th
e
fu
tu
re
H
a
s
b
e
e
n
tr
a
n
sl
a
te
d
i
n
to
1
6
la
n
–
g
u
a
g
e
s
in
c
lu
d
in
g
E
n
g
li
sh
,
F
re
n
c
h
a
n
d
G
e
rm
a
n
5
-p
o
in
t
sc
a
le
s
a
n
d
a
v
a
ri
e
ty
o
f
re
sp
o
n
se
c
a
te
g
o
ri
e
s
T
h
e
m
e
a
su
re
w
a
s
u
p
d
a
te
d
in
2
0
0
6
a
n
d
a
ve
rs
io
n
to
in
c
lu
d
e
fa
m
il
ie
s
w
it
h
o
u
t
d
is
a
b
il
–
it
y
h
a
s
a
ls
o
b
e
e
n
p
ro
d
u
c
e
d
F
a
m
il
y
S
tr
a
in
Q
u
e
st
io
n
n
a
ir
e
5
5
C
a
re
g
iv
e
rs
o
f
p
a
ti
e
n
ts
w
it
h
a
n
y
d
is
e
a
se
4
4
F
iv
e
fa
c
to
rs
:
e
m
o
ti
o
n
a
l
b
u
rd
e
n
,
p
ro
b
le
m
s
in
so
c
ia
l
in
vo
lv
e
m
e
n
t,
n
e
e
d
fo
r
k
n
o
w
le
d
g
e
a
b
o
u
t
th
e
d
is
e
a
se
,
sa
ti
sf
a
c
ti
o
n
w
it
h
fa
m
il
y
re
la
ti
o
n
sh
ip
s,
a
n
d
th
o
u
g
h
ts
a
b
o
u
t
d
e
a
th
2
0
m
in
u
te
s
D
e
v
e
lo
p
e
d
fr
o
m
a
st
re
ss
–
a
p
p
ra
is
a
l-
c
o
p
in
g
m
o
d
e
l
S
e
m
i-
st
ru
c
tu
re
d
in
te
rv
ie
w
b
y
c
li
n
ic
a
l
p
sy
c
h
–
o
lo
g
is
t
o
r
h
e
a
lt
h
c
a
re
p
ro
fe
ss
io
n
a
l
a
n
d
se
lf
-a
d
m
i-
n
is
te
re
d
q
u
e
st
io
n
n
a
ir
e
P
re
se
n
t.
P
h
ra
se
s
su
c
h
a
s
‘‘
d
u
ri
n
g
th
is
p
e
ri
o
d
’’
a
n
d
‘‘
a
t
th
is
m
o
m
e
n
t’
’
a
re
u
se
d
E
n
g
li
sh
D
ic
h
o
to
m
o
u
s
In
2
0
1
0
,
th
e
F
a
m
il
y
S
tr
a
in
Q
u
e
st
io
n
n
a
ir
e
–
S
h
o
rt
F
o
rm
w
a
s
d
e
v
e
lo
p
e
d
,
w
h
ic
h
c
o
n
ta
in
s
3
0
it
e
m
s
a
n
d
c
a
n
b
e
c
o
m
–
p
le
te
d
in
5
m
in
u
te
s.
depression, embarrassment, frustration)?’’. The
Impact of Pediatric Epilepsy Scale,
57
is designed to
measure the impact of childhood epilepsy on the
patient and their family. Using this measure, the
severity of seizures correlated directly with the quality
of life of the patient and their family.
57
This correl-
ation with disease severity was also found in atopic
dermatitis
58
using the Dermatitis Family Impact
Questionnaire.
9
Further examples of disease-specific
measures include the Psoriasis Family Index,
59
the
Overactive Bladder Family Impact Measure,
51
and
the Quality of Life in Life Threatening Illness –
Family Carer Version,
11
which is designed to be
used with carers of palliative oncology patients to
assist the development and delivery of the most effect-
ive services to these carers. Many of the existing
instruments to measure family quality of life have
been designed for use in families of patients with
cancer,
21,60
and mental health illness.
22
The Impact-on-Family Scale measures the impact
of childhood chronic illness on the family.
26
Similarly, the extensively tested Beach Centre
Family Quality of Life scale,
54
was evaluated in
families of children with disabilities. The questions
in this measure fall under five main categories:
family interaction, parenting, emotional well-being,
physical/emotional well-being, and disability-related
support. The Family Quality of Life Survey is
another example of a measure designed for use in
family members of patients with or without an intel-
lectual disability.
28
This survey is designed to assess
the aspects of family quality of life that are important
to a family and whether these aspects are being
adhered to.
The Caregiver Quality of Life Index,
61
is a four-
item visual analogue scaled measure assessing the
quality of life of primary carers of hospice patients,
but not specifically family members. The Family
Strain Questionnaire,
55
is designed for use by ‘‘prin-
cipal caregivers’’ and not family members.
Furthermore, the measure assesses the burdens or
problems and needs of carers of patients and not
the overall quality of life. Most of these generic meas-
ures demonstrated good evidence of validity and reli-
ability testing. The properties of these generic
measures are summarised in Table 4. No measure
was found which can be used to assess and compare
the impact of any disease on family members of
patients.
Discussion
There is a wide range of information about the
impact of disease on family members of patients. It
is unknown whether the results of disease-specific
studies are applicable to a more general population,
or whether family members are affected in similar
ways across every medical specialty. For example,
the family quality of life domains suggested by
Poston et al.
34
result from a study with family mem-
bers of disabled children. Kazak,
62
discusses the lack
of ‘‘reliable and valid family outcome measures’’ and
the negative effects of family outcome studies of one
disease or clinical area, including the lack of commu-
nication between medical specialties and obscuring
commonalities across different disease areas.
Although many studies conclude that a more
family-centred approach to care,
13,37,63,64
and further
education of professionals is needed,
35
no generic
measure exists to assess the impact of a variety of
diseases on family members of patients.
The impact of disease on families of patients is
often unrecognised and underestimated. Comparing
contrasting information from families of patients
with a variety of diseases could uncover new domains
of quality of life unique to family members, which,
with appropriate support in place, could result in a
higher standard of patient and family care. Taking
into account the quality of life of families as well as
patients can offer the clinician a unique insight into
issues such as family relationships and the effect of
treatment decisions on the patients’ close social group
of partner and family.
3
There are some limitations of this review. The
review was not a systematic review. Carrying out a
systematic review would have lead to a substantial
reduction in the number of articles to be reviewed,
therefore influencing the intended comprehensive
nature of the review. Many of the articles reviewed
were written several decades ago, as there is not a
large volume of modern literature looking specifically
at impact on the family. The use of restricted search
databases was also identified as a limitation.
In conclusion, in order to understand the needs of
family members of patients and be able to offer
appropriate support, we first need to understand the
ways in which their lives are affected. This review has
highlighted the need for a multi-specialty study inves-
tigating the issues faced by families of patients, how
these differ between diseases, and exploring the
common themes and ideas.
Declarations
Competing interests: AYF and MKAB are joint copyright
owners of the Family Dermatology Life Quality Index. AYF is a
joint copyright owner of the Psoriasis Family Impact questionnaire
and the Dermatitis Family Impact questionnaire. SS is copyright
owner of the Compendium of Quality of Life Instruments. CJG
has no competing interests.
Golics et al. 405
Funding: The PhD funding of CJG comes from departmental
funds within Cardiff University School of Medicine and School
of Pharmacy and Pharmaceutical Sciences, Cardiff University.
Ethical approval: Not applicable
Guarantor: CJG
Contributorship: CJG carried out the literature review and
wrote the first draft of the manuscript. The other authors contrib-
uted equally to extensive revision of the manuscript.
Acknowledgements: None
Provenance: Submitted; peer-reviewed by David Seamark
References
1. Rees J, O’Boyle C and MacDonagh R. Quality of life:
impact of chronic disease on the partner. J Roy Soc
Med 2001; 94: 563–6.
2. Goldbeck L. The impact of newly diagnosed chronic
paediatric conditions on parental quality of life. Qual
Life Res 2006; 15: 1121–31.
3. Basra MKA and Finlay AY. The family impact of skin
diseases: the Greater Patient concept. Brit J Dermatol
2007; 156: 929–37.
4. Eghlileb AM, Davies EEG and Finlay AY. Psoriasis
has a major secondary impact on the lives of family
members and partners. Brit J Dermatol 2007; 156:
1245–50.
5. Balkrishnan R, Manuel J, Clarke J, Carroll CL,
Housman TS and Fleischer AB. Effects of an episode
of specialist care on the impact of childhood atopic
dermatitis on the child’s family. J Pediat Healthcar
2003; 17: 184–9.
6. Elliott B and Luker K. The experiences of mothers
caring for a child with severe atopic eczema. J Clin
Nurs 1997; 6: 241–7.
7. Jowett S and Ryan T. Skin disease and handicap: An
analysis of the impact of skin conditions. Soc Sci Med
1985; 20: 425–9.
8. Kondo-Endo K, Ohashi Y, Nakagawa H, et al.
Development and validation of a questionnaire mea-
suring quality of life in primary caregivers of children
with atopic dermatitis (QPCAD). Brit J Dermatol 2009;
161: 617–25.
9. Lawson V, Lewis-Jones MS, Finlay AY, Reid P and
Owens RG. The family impact of childhood atopic
dermatitis: the Dermatitis Family Impact
Questionnaire. Brit J Dermatol 1998; 138: 107–13.
10. Baider L. Psychological intervention with couples after
mastectomy. Support Care Cancer 1995; 3: 239–43.
11. Cohen R, Leis AM, Kuhl D, Charbonneau C, Ritvo P
and Ashbury FD. QOLLTI-F: measuring family carer
quality of life. Palliative Med 2006; 20: 755–67.
12. Hagedoorn M, Buunk BP, Kuijer RG, Wobbes T and
Sanderman R. Couples dealing with cancer: role and
gender differences regarding psychological distress and
QOL. Psycho-Oncol 2000; 9:
232–42.
13. Koldjeski D, Kirkpatrick MK, Everett L, Brown S and
Swanson M. The Ovarian Cancer Journey of Families
the First Postdiagnostic Year. Cancer Nurs 2007; 30:
232–42.
14. Lewis FM. The impact of cancer on the family: a crit-
ical analysis of the research literature. Patient Educ
Couns 1986; 8: 269–89.
15. Mellon S. Comparisons Between Cancer Survivors and
Family Members on Meaning of the Illness and Family
Quality of Life. Oncol Nurs Forum 2002; 29: 1117–25.
16. Northouse LL, Mood D, Templin T, Mellon S and
George T. Couples’ patterns of adjustment to colon
cancer. Soc Sci Med 2000; 50: 271–84.
17. Osse BHP, Vernooij-Dassen MJFJ, Schade E and Grol
RPTM. Problems Experienced by the Informal
Caregivers of Cancer Patients and Their Needs for
Support. Cancer Nurs 2006; 29: 378–88.
18. Papadopoulos A, Vrettos I, Kamposioras K, et al.
Impact of cancer patients’ disease awareness on their
family members’ health-related quality of life: a cross-
sectional survey. Psycho-Oncol 2010.
19. Pitceathly C and Maguire P. The psychological impact
of cancer on patients’ partners and other key relatives:
a review. Eur J Cancer 2003; 39: 1517–24.
20. Swanberg JE. Making It Work: Informal Caregiving,
Cancer, and Employment. J Psychosoc Oncol 2006; 24:
1–18.
21. Weitzner MA, Jacobsen PB, Wagner H, Friedland JJ and
Cox C. The Caregiver Quality of Life Index–Cancer
(CQOLC) scale: development and validation of an instru-
ment to measure quality of life of the family caregiver of
patients with cancer. Qual Life Res 1999; 8: 55–63.
22. Baronet A-M. Factors associated with caregiver burden
in mental health illness: A critical review of the research
literature. Clin Psychol Rev 1999; 19: 819–41.
23. Barrowclough C, Lobban F, Hatton C and Quinn J.
An investigation of models of illness in carers of schizo-
phrenia patients using the Illness Perception
Questionnaire. Brit J Clin Psychol 2001; 40: 371–85.
24. Fisman S, Wolf L, Ellison D and Freeman T. A longi-
tudinal study of siblings of children with chronic dis-
abilities. Can J Psychiatry 2000; 45: 369–75.
25. Opperman S and Alant E. The coping responses of the
adolescent siblings of children with severe disabilities.
Disabil Rehabil 2003; 25: 441–54.
26. Stein REK and Riessman CK. The Development of an
Impact-on-Family Scale: Preliminary Findings. Med
Care 1980; 18: 465–72.
27. Turnbull A, Turnbull R, Poston D, et al. In: Families
and People with Mental Retardation and Quality of Life:
International Perspectives. Turnbull AP, Brown I,
Turnbull HR, Eds. (American Association on
Mental Retardation, Washington DC, 2004), Chapter
4, pp. 51–100.
28. Issacs BJ, Brown I, Brown RI, et al. The International
Family Quality of Life Project: Goals and Description
of a Survery Tool. JPPID 2007; 4: 177–85.
29. O’Brien I, Duffy A and Nicholl H. Impact of childhood
chronic illnesses on siblings: a literature review. Br J
Nurse 2009; 18: 1358–65.
30. Kriegsman D, Penninx B and Eijk Jv. Chronic Disease
in the Elderly and Its Impact on the Family: A Review
of the Literature. Fam Syst Med 1994; 12: 249–67.
406 Journal of the Royal Society of Medicine 106(10)
31. Salek MS. Compendium of Quality of Life Instruments.
Volumes 1-5.(John Wiley & Sons, Chichester, 1998).
32. Salek MS. Compendium of Quality of Life Instruments.
Volumes 6–7.(Euromed Communications, Haslemere,
2007).
33. Scott J. Family and Gender Roles: How Attitudes Are
Changing. International Conference on Family
Relations. Valencia, Spain 2006, http://www.genet.
ac.uk/workpapers/GeNet2006p21 .
34. Poston D, Turnbull A, Park J, Mannan H, Marquis J
and Wang M. Family Quality of Life: A Qualitative
Inquiry. Ment Retard 2003; 41: 313–28.
35. Jokinen NS. Family Quality of Life and Older
Families. JPPID 2006; 3: 246–52.
36. Pochard F, Azoulay E, Chevret S, et al. Symptoms of
anxiety and depression in family members of intensive
care unit patients: Ethical hypothesis regarding deci-
sion-making capacity. Crit Care Med 2001; 29: 1893–7.
37. Bowen C, Maclehose A, Beaumont JG. Advanced mul-
tiple sclerosis and the psychosocial impact on families.
Psychol Health 2010; 26: 1–15.
38. Sallfors C and Hallberg LR-M. A Parental Perspective
on Living with a Chronically Ill Child: A Qualitative
Study. Fam Syst Health 2003; 21: 193–204.
39. Balkrishnan R, Housman TS and Carroll C. Disease
severity and associated family impact in childhood
atopic dermatitis. Arch Dis Child 2003; 88: 423–7.
40. Berge JM, Patterson JM and Rueter M. Marital
Satisfaction and Mental Health of Couples With
Children With Chronic Health Conditions. Fam Syst
Health 2006; 24: 267–85.
41. Boeije HR and Doorne-Huiskes AV. Fulfilling a sense
of duty: how men and women giving care to spouses
with multiple sclerosis interpret this role. Communtiy
Work Fam 2003; 6: 223–44.
42. Bristol MM, Gallagher JJ and Schopler E. Mothers
and Fathers of Young Developmentally Disabled and
Nondisabled Boys: Adaptation and Spousal Support.
Dev Psychol 1988; 24: 441–51.
43. Walsh JD, Blanchard EB, Kremer JM and Blanchard
CG. The psychosocial effects of rheumatoid arthritis
on the patient and the well partner. Behav Res Ther
1999; 37: 259–71.
44. Clarke SA, Skinner R, Guest J, et al. Health-related
quality of life and financial impact of caring for a
child with Thalassaemia Major in the UK. Child Care
Hlth Dev 2009; 36: 118–22.
45. Brown I, Anand S, Fung WLA, Isaacs B and Baum N.
Family Quality of Life: Canadian Results From an
International Study. J Dev Phys Disabil 2003; 15:
207–30.
46. Langa KM, Chernew ME, Kabeto MU, et al. National
Estimates of the Quantity and Cost of Informal
Caregiving for the Elderly with Dementia. J Gen
Intern Med 2001; 16: 770–8.
47. Davis E, Shelly A, Waters E, Boyd R, Cook K and
Davern M. The impact of caring for a child with cere-
bral palsy: quality of life for mothers and fathers. Child
Care Hlth Dev 2009; 36: 63–71.
48. Lapidus CS and Kerr PE. Social impact of atopic
dermatitis. Med Health R I 2001; 84: 294–5.
49. Lewis FM. Strengthening Family Supports: Cancer
and the Family. Cancer 1990; 65: 752–9.
50. Golics CJ, Basra MKA, Finlay AY and Salek MS.
Adolescents with Skin Disease Have Specific Quality
of Life Issues. Dermatology 2009; 218: 357–66.
51. Coyne KS, Matza LS, Brewster-Jordan J, Thompson C
and Bavendam T. The Psychometric Validation of the
OAB Family Impact Measure (OAB-FIM). Neurourol
Urodyn 2010; 29: 359–69.
52. Kim Y, Schulz R and Carver CS. Benefit Finding in the
Cancer Caregiving Experience. Psychosom Med 2007;
69: 283–91.
53. Hunfeld JAM, Perquin CW, Dulvenvoorden HJ, et al.
Chronic Pain and Its Impact on Quality of Life in
Adolescents and Their Families. J Pediatr Psychol
2001; 26: 145–53.
54. Hoffman L, Marquis JG, Poston DJ, Summers JAS
and Turnbull AP. Assessing Family Outcomes:
Psychometric Evaluation of the Beach Center Family
Quality of Life Scale. J Marriage Fam 2006; 68:
1069–83.
55. Ferrario SR, Baiardi P and Zotti AM. Update on the
Family Strain Questionnaire: A tool for the general
screening of caregiving-related problems. Qual Life
Res 2004; 13: 1425–34.
56. Basra MKA, Sue-Ho R and Finlay AY. The Family
Dermatology Life Quality Index: measuring the sec-
ondary impact of skin disease. Brit J Dermatol 2007;
156: 528–38.
57. Breau GM, Camfield CS, Camfield PR and Breau LM.
Evaluation of the responsiveness of the Impact of
Pediatric Epilepsy Scale. Epilepsy Behav 2008; 13:
454–7.
58. Ben-Gashir MA, Seed PT and Hay RJ. Are quality of
family life and disease severity related in childhood
atopic dermatitis? J Eur Acad Dermatol 2002; 16:
455–62.
59. Eghlileb AM, Basra MKA and Finlay AY. The
Psoriasis Family Index: Preliminary Results of
Validation of a Quality of Life Instrument for Family
Members of Patients with Psoriasis. Dermatology 2009;
219: 63–70.
60. McMillan SC and Mahon M. Measuring QOL in hos-
pice patients using a newly developed Hospice QOL
Index. Qual Life Res 1994; 3: 437–47.
61. McMillan SC. Quality of life of primary caregivers of
hospice patients with cancer. Cancer Pract 1996; 4:
191–8.
62. Kazak AE. Challenges in Family Health Intervention
Research. Fam Syst Health 2002; 20: 51–9.
63. Fisher L. Research on the Family and Chronic Disease
Among Adults: Major Trends and Directions. Fam
Syst Health 2006; 24: 373–80.
64. Brown I, Galambos D, Poston DJ, Turnbull AP. In: A
Comprehensive Guide to Intellectual & Developmental
Disabilities. Brown I, Percy M, Eds. (Paul H.
Brookes Publishing Co., Baltimore, 2007), Chapter
22, pp. 351–61.
Golics et al. 407
Order an Essay Now & Get These Features For Free:
Turnitin Report
Formatting
Title Page
Citation
Outline
