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open access to scientific and medical research
Open Access Full Text Article
http://dx.doi.org/10.2147/PRBM.S111593
Optimizing psychosocial interventions in
first‑episode psychosis: current perspectives
and future directions
Nicholas JK Breitborde1,2
Aubrey M Moe1
Arielle Ered3
Lauren M Ellman3
Emily K Bell4
1Department of Psychiatry and
Behavioral Health, 2Department of
Psychology, The Ohio State University,
Columbus, OH, 3Department of
Psychology, Temple University,
Philadelphia, PA, 4Department of
Psychiatry, University of Arizona,
Tucson, AZ, USA
Abstract: Psychotic-spectrum disorders such as schizophrenia, schizoaffective disorder, and
bipolar disorder with psychotic features are devastating illnesses accompanied by high levels of
morbidity and mortality. Growing evidence suggests that outcomes for individuals with psychotic-
spectrum disorders can be meaningfully improved by increasing the quality of mental health
care provided to these individuals and
reducing the delay between the first onset of psychotic
symptoms and the receipt of adequate psychiatric care. More specifically, multicomponent treat-
ment packages that 1) simultaneously target multiple symptomatic and functional needs and
2) are provided as soon as possible following the initial onset of psychotic symptoms appear
to have disproportionately positive effects on the course of psychotic-spectrum disorders. Yet,
despite the benefit of multicomponent care for first-episode psychosis, clinical and functional
outcomes among individuals with first-episode psychosis participating in such services are
still suboptimal. Thus, the goal of this review is to highlight putative strategies to improve care
for individuals with first-episode
psychosis with specific attention to optimizing psychosocial
interventions. To address this goal, we highlight four burgeoning areas of research with regard
to optimization of psychosocial interventions for first-episode psychosis: 1) reducing the delay
in receipt of evidence-based psychosocial treatments; 2) synergistic pairing of psychosocial
interventions; 3) personalized delivery of psychosocial interventions; and 4) technological
enhancement of psychosocial interventions. Future research on these topics has the potential to
optimize the treatment response to evidence-based psychosocial interventions and to enhance
the improved (but still suboptimal) treatment outcomes commonly experienced by individuals
with first-episode psychosis.
Keywords: first-episode psychosis; multicomponent care; psychosocial treatment; personal-
ized medicine
Introduction
Psychotic-spectrum disorders such as schizophrenia, schizoaffective disorder, and
bipolar disorder with psychotic features are devastating illnesses accompanied by
high levels of morbidity and mortality. Under usual systems of care, these disorders
are characterized by repeated symptomatic relapses,1–3 elevated rates of psychiatric
comorbidities such as anxiety, depressive, and substance use disorders,4,5 reduced rates
of participation in competitive occupational and educational activities,6–8 severe deficits
in cognitive abilities,9–11 rates of death by suicide up to 12 times greater than popula-
tion norms,12,13 and a life expectancy reduced by up to 25 years14,15 due primarily to
cardiovascular, infectious, and pulmonary diseases.13,16 The severity of these disorders
was recently highlighted within the Global Burden of Disease (GBD) Study.17–19 As part
Correspondence: Nicholas JK Breitborde
Department of Psychiatry and Behavioral
Health, The Ohio State University, 1670
Upham Dr., Columbus, OH 43210, USA
Tel +1 614 685 6052
Email nicholas.breitborde@osumc.edu
Journal name:
Psychology Research and Behavior Management
Article Designation: REVIEW
Year: 2017
Volume: 10
Running head verso:
Breitborde et al
Running head recto: Psychosocial interventions in first-episode psychosis
DOI: http://dx.doi.org/10.2147/PRBM.S111593
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Breitborde et al
of a larger effort to quantify the deleterious effects of various
health conditions worldwide, the GBD Study assigns a dis-
ability weight to over 300 illnesses and injuries – a numerical
value indicating where a particular health state exists on a
range from 0 (i.e., a state of perfect health) to 1 (i.e., a health
state equivalent to death). Within the two past iterations of
the GBD study, the acute presentation of schizophrenia – the
prototypical psychotic-spectrum disorder – where active hal-
lucinations and delusions are present was assigned the highest
disability weight among all illness and injuries.20,21 In fact,
while achieving remission of hallucinations and delusions is
often considered a “treatment success” for individuals with
schizophrenia,22,23 this health state (i.e., schizophrenia in its
residual state) was assigned the ninth highest disability weight
among all illnesses and injuries in the GBD study.20,21 When
a “successful” treatment outcome equates to the ninth worst
health state that humans can experience other than death, there
is significant room for improvement in existing treatments for
a given disorder.
Growing evidence suggests that outcomes for individu-
als with psychotic-spectrum disorders can be meaningfully
improved by increasing the quality of mental health care pro-
vided to these individuals and reducing the delay between the
first onset of psychotic symptoms and the receipt of adequate
psychiatric care.24,25 More specif ically, multicomponent
treatment packages that 1) simultaneously target multiple
symptomatic and functional needs and 2) are provided as
soon as possible following the initial onset of psychotic
symptoms, appear to have disproportionately positive effects
on the course of psychotic-spectrum disorders.26,27 To date,
numerous trials of multicomponent treatment packages for
individuals early in the course of a psychotic-spectrum disor-
der – a period frequently referred to as “first-episode psycho-
sis”28 – have been completed by independent research teams
across four continents. Although there is some variation in
the results, overall, these studies suggest that multicomponent
care for first-episode psychosis may produce improved out-
comes across numerous psychiatric (e.g., positive symptoms,
negative symptoms, and depressive symptomatology) and
functional domains (e.g., cognition, social functioning, and
participation in competitive work and school).29–40 In response
to these findings, multicomponent care provided as soon as
possible following the first onset of psychotic symptoms is
now recognized as the new “gold standard” in the treatment
of psychotic-spectrum disorders. Such treatment programs
are now available in every continent with the exception of
Antarctica,41,42 and several countries have launched federally-
supported efforts to disseminate multicomponent care for
first-episode psychosis nationwide.43–45 For example, between
fiscal year 2014 and 2016, the federal government of the USA
dedicated nearly $100 million to support the dissemination
of Coordinated Specialty Care for first-episode psychosis – a
multicomponent treatment program comprised of individual
psychotherapy, family psychoeducation, medication manage-
ment, and supported employment and education.46
A key contribution of the recent movement toward multi-
component treatment programs for first-episode psychosis is
increased recognition of the value of psychosocial interventions
for psychotic-spectrum disorders. Although existing treatment
guidelines typically identify pharmacological treatment as the
“cornerstone” or “first-line” treatment of psychotic-spectrum
disorders,47–49 there is growing recognition that medication
alone cannot fully ameliorate the morbidity and mortality
associated with these disorders.50–53 For example, while anti-
psychotic medications have clear efficacy with regard to the
treatment of psychotic symptomatology,54,55 available evidence
suggests that such symptoms may account for <1% of the illness-related disability experienced by individuals with first-
episode psychosis (Moe and Breitborde, unpublished data,
2017). Effects of antipsychotic medication on other meaningful
outcomes in psychotic-spectrum disorders (e.g., employment,
cognition, and social functioning) are small and may not be
clinically significant.11,51,56,57 Current multicomponent treatment
programs for first-episode psychosis emphasize a combination
of psychosocial and pharmacological interventions as first-line
treatment58,59 and available data have demonstrated that such
combined treatment produces improved outcomes among
individuals with psychotic-spectrum disorders – including first-
episode psychosis – when compared with medication alone.60–62
Yet, despite the benefit of multicomponent care for first-
episode psychosis, clinical and functional outcomes among
individuals participating in such services are still subop-
timal.26,63,64 Among such individuals, inpatient psychiatric
hospitalizations are common,31 substance use – especially
tobacco – is high,29 poor physical health outcomes are the
norm,65 and rates of participation in competitive employ-
ment remain lower than their age-matched peers without
psychotic-spectrum disorders.30 Consequently, there is still
significant room for improvement in the treatment of first-
episode psychosis.26,63
Thus, the goal of this review is to highlight putative
strategies to improve care for individuals with first-episode
psychosis with specific attention to optimizing psychosocial
interventions. To address this goal, we highlight several opti-
mization strategies with the potential to enhance the benefits
associated with these interventions. In particular, we focus
our review on burgeoning areas of research with regard to
optimization of psychosocial interventions for first-episode
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Psychosocial interventions in first‑episode psychosis
psychosis and avoid reviewing strategies that are already
clearly documented elsewhere (e.g., building a strong thera-
peutic alliance66 and addressing the comorbid psychiatric
symptoms, functional deficits, and cognitive decline that
accompany first-episode psychosis67–73).
Strategy 1: reduce the delay
in receipt of evidence-based
psychosocial treatments
Within the first-episode psychosis literature, there is a clear
association between the duration of untreated psychosis
(DUP; i.e., the time between the first onset of psychotic
symptoms and the receipt of adequate mental health care)
and the course of psychotic-spectrum disorders. More spe-
cifically, a longer DUP is associated with a worse course of
illness and poorer response to treatment.25,31,32,74 Many stud-
ies have defined the endpoint of the DUP (i.e., the receipt
of adequate mental health care) as participation in some
duration of antipsychotic medication.75,76 However, time
until the start of evidence-based psychosocial interventions
may also be an important endpoint following the first onset
of psychotic symptoms. For example, in a seminal paper, de
Haan et al76 examined the association between the duration of
time between the first onset of psychotic symptoms and the
first receipt of intensive psychosocial treatment (i.e., delay
in intensive psychosocial treatment [DIPT]) and the course
of schizophrenia. Given the limited availability of evidence-
based psychosocial treatments for psychosis in usual care
settings,77 it is not surprising that de Haan et al found that
the mean DIPT (19 months) was nearly twice as long as the
mean DUP (8.6 months). Among their sample, there were
positive univariate associations between negative symptoms
at 6-year follow-up and both DUP and DIPT (i.e., greater
negative symptoms associated with longer DUP and DIPT,
respectively). However, in multivariate analyses simultane-
ously examining DUP and DIPT, only DIPT was found to
be a statistically significant predictor of negative symptoms
at 6-year follow-up. These results raise the possibility that
reducing the delay between the first onset of psychotic
symptoms and the receipt of evidence-based psychosocial
care may be a modifiable risk factor through which providers
can improve the course of psychotic-spectrum disorders. This
hypothesis comports with data suggesting that individuals
earlier in the course of psychotic-spectrum disorders have a
greater response to psychosocial treatments when compared
with individuals with more longstanding illnesses.78–80
Despite the potential importance of DIPT to the course
of psychotic-spectrum disorders, we are unaware of any
subsequent studies that have investigated this concept in the
13 years since the paper by de Haan et al.76 Consequently,
there is a great utility for additional research to clarify the
association between delay in access to psychosocial treat-
ments and the course of psychotic-spectrum disorders. In
addition, psychiatric service research may benefit from
examining how evidence-based psychosocial services can be
incorporated within inpatient psychiatric settings. Although
the inpatient psychiatric unit is often the first care setting for
individuals with first-episode psychosis,81 evidence-based
psychosocial treatments for f irst-episode psychosis are
typically available in outpatient settings only. Thus, incor-
porating specialized psychosocial treatments in inpatient
settings may be an important strategy in reducing delay of
appropriate psychosocial care.
Strategy 2: synergistic pairing of
psychosocial interventions
Kern et al62 have highlighted that although numerous
evidence-based psychosocial interventions are available
for psychotic-spectrum disorders, no single psychosocial
intervention is sufficient to address numerous health and
functional consequences associated with these disorders.
Thus, there is growing interest in examining how best to pair
psychosocial interventions to improve outcomes among indi-
viduals with first-episode psychosis. Although research in this
area is still developing, promising results from the broader
literature on psychotic-spectrum disorders are already avail-
able with regard to effective pairing of psychosocial interven-
tions with cognitive remediation – an intervention defined
by the 2010 Cognitive Remediation Experts Workshop as “a
behavioral training based intervention that aims to improve
cognitive processes (attention, memory, executive function,
social cognition, or metacognition) with the goal of durabil-
ity and generalization.” To date, studies have examined the
benefits of pairing cognitive remediation with several addi-
tional psychosocial interventions, including work therapy
and supported employment programs,82–84 functional skills
training,85 and even an aerobic exercise program.86
Bell et al82 examined a combined cognitive remediation
and work therapy program, which involved individuals with
schizophrenia or schizoaffective disorder being randomly
assigned to receive cognitive remediation – characterized by
completion of computerized cognitive exercises and weekly
processing groups – plus work therapy or work therapy alone
for 6 months. Although both groups showed improvements,
individuals in the cognitive remediation and work therapy
group evidenced greater mean differences and larger effect-
size changes on cognitive performance, including working
memory, attention, and executive functioning. An additional
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Breitborde et al
study by the same group83 using the same methodology but
with an extended treatment period of 1 year similarly revealed
that individuals who received combined cognitive remedia-
tion and work therapy had significantly better performance
on measures of executive functioning and working memory
post-treatment compared with those who received work
therapy alone. In a sample of 44 individuals with schizo-
phrenia, McGurk et al84 compared the effects of 12 weeks
of supported employment and computerized cognitive
training against supported employment alone. Post-treatment
cognitive testing revealed that those in the combined cogni-
tive training plus supported employed group performed
significantly better on an overall composite cognition score
than those receiving supported employment alone, and that
these individuals in the combined condition also showed
significant reduction in depression and autistic preoccupa-
tion and better work outcomes compared with individuals in
the supported employment-alone condition. The functional
outcome improvements, particularly in work functioning,
can be directly attributed to the addition of cognitive reme-
diation in this case, as all other aspects of treatment were
matched. Although work training and supported employment
programs target work functioning directly, the addition of
cognitive training led to greater levels of employment, more
hours worked, and better functioning at work in individuals
with schizophrenia. In addition, those receiving cognitive
remediation also showed improvement in other domains (i.e.,
symptom levels and neurocognitive functioning).
In an additional study, Bowie et al85 randomly assigned
individuals with schizophrenia to receive cognitive remedia-
tion, functional adaptation skills training, or a combination
of both treatments. Although improvements in neurocogni-
tion were observed in both the cognitive training and com-
bined treatment groups and social competence significantly
improved in the functional skills and combined treatment
group, the combined treatment group showed significantly
greater improvements in functional competence and real-
world community activities than either the functional skills
training and cognitive remediation-only groups. Importantly,
the durability of these gains was greatest in the combined
treatment group. Taken together, these results suggest that
a combined treatment approach may produce better gains
across domains that are more likely to persist over time.
The utility of combining cognitive remediation and
physical activity has also been explored. In a recently
published pilot study,86 individuals early in the course of a
schizophrenia-spectrum disorder were randomly assigned
to 10 weeks of either cognitive training alone or cognitive
training combined with aerobic exercise sessions. Even with a
small sample and short training period, individuals receiving
combined cognitive training and exercise demonstrated larger
gains in overall cognitive abilities compared with participants
receiving cognitive training alone. These preliminary data
suggest that a combination approach including both exercise
and cognitive remediation allows for even larger gains in
cognition than cognitive remediation alone.
Thus, research on cognitive remediation has highlighted
strategies to increase the size, breadth, and durability of
treatment effects via the deliberate pairing of psychosocial
interventions. These findings are especially relevant to the
treatment of first-episode psychosis given the improved,
but still suboptimal benefits associated with current mul-
ticomponent treatment programs64 and questions about
the durability of these benefits after discharge from such
multicomponent treatment programs.87,88 Moreover, within
most multicomponent treatment for first-episode psychosis,
decisions with regard to psychosocial intervention uptake are
typically individual preferences of providers and individuals
with first-episode psychosis. Although such preferences are
valuable – especially those of individuals with first-episode
psychosis – future research exploring how specific psy-
chosocial interventions can be synergistically paired may
enhance clinical outcomes among individuals participating
in multicomponent care for first-episode psychosis.
Strategy 3: personalized delivery of
psychosocial interventions
Within the larger psychiatric literature, there is significant
interest in advancing personalized medicine89 – “the prescrip-
tion of specific treatments and therapeutics best suited for an
individual taking into consideration both genetic and environ-
mental factors that influence response to therapy”.90 The treat-
ment decisions resulting from these considerations fall under
the categories of “macrotreatment” and “microtreatment”
decisions.91 Macrotreatment decisions are those that guide
selection of specific interventions, whereas microtreatment
decisions guide the delivery of specific aspects of an inter-
vention. Given the heterogeneous presentation and course of
psychotic-spectrum disorder,92–94 personalized prescription of
psychosocial intervention may help to maximize treatment
outcomes among individuals with first-episode psychosis.
In recent years, there has been increasing focus on
research suggesting that genetic variants associated with
psychosis can be used to guide antipsychotic medication man-
agement decisions.95 Genetic variants could also potentially
be used to guide macrotreatment decisions concerning which
psychosocial interventions are prescribed to specific indi-
viduals with first-episode psychosis. For example, growing
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Psychosocial interventions in first‑episode psychosis
research has considered whether an individual’s response to
cognitive remediation may be moderated by genetic factors.
To date, several studies have examined whether response to
cognitive remediation may be predicted by the catechol-O-
methyltransferase (COMT) gene via its putative influence
on prefrontal dopamine functioning.96–98 However, results
from these studies are equivocal. There is some evidence that
response to cognitive remediation among individuals with
first-episode psychosis may be influenced by the expression
of genes involved in memory and synaptic plasticity (e.g.,
activity-regulated cytoskeleton-associated protein [ARC]).
In one recent study,99 individuals identified as carriers of
the ARC T allele showed significant improvement in overall
cognitive functioning after participating in metacognitive
remediation therapy, whereas non-T-carriers did not.
Another potential characteristic that could be used to
personalize psychosocial intervention prescription for indi-
viduals with first-episode psychosis is personality traits. It
has been demonstrated that non-pathological personality
traits are associated with course of illnesss and subjective
experiences of symptoms in individuals with psychosis,100
as well as other relevant correlates of psychotic-spectrum
disorders such as social cognitive abilities.101 A framework
for considering both research and theory of personality
in first-episode psychosis intervention decisions has been
proposed102 that would first involve formal assessment of
personality characteristics. These assessment data could
then be used to inform macrotreatment decisions, such as
choice of intervention formats (e.g., group interventions,
caregiver involvement) and microtreatment decisions, such
as how to tailor interventions for specific individuals to best
address their unique symptomatology, functional deficits,
and treatment goals.
Finally, the typical emergence of psychotic symptoms
in the late teens to early 20’s103 raises the possibility that
psychosocial interventions for first-episode psychosis may
be enhanced by tailoring them to the unique needs of indi-
viduals in this developmental stage. In his seminal writings,
Arnett has referred to this developmental stage as “emerging
adulthood” and has described it as “a period characterized by
change and exploration for most people, as they examine the
life possibilities open to them and gradually arrive at more
enduring choices in love, work, and worldviews.”104 Draw-
ing on this research, McGorry et al have advocated for the
development of youth-friendly mental health services that
promote shared decision-making in treatment and emphasize
social and vocational outcomes (as opposed to symptomatic
remission) as key treatment goals.105,106 Such characteristics
are not only consistent with the norms of this developmental
stage (e.g., movement toward greater autonomy and estab-
lishing the foundation for longstanding vocational and rela-
tionship roles) but may also play a role in whether emerging
adults access and remain engaged in specialized services for
first-episode psychosis.105 For example, early evidence from
existing youth-friendly mental health services suggests that
they may be successful in increasing rates of youth and young
adults from traditionally underserved populations who choose
to access mental health services.107,108
Strategy 4: technological
enhancement of psychosocial
interventions
Another promising avenue for optimization of psychosocial
treatment for first-episode psychosis involves integration
of technological advances. Although clinical research has
benef itted for several decades from emerging imaging
and psychophysiological measurement technologies, these
advancements are increasingly proliferated into people’s
typical, everyday activities (e.g., smartphones, digital
streaming technologies, and fitness trackers equipped with
heart-rate monitors). As these technologies continually
interface with normative human activities, they represent an
important avenue for advancement and expansion of health
care and treatment. Interventions delivered via technology
or technology-enhanced treatment may be a cost-effective
way to provide personalized, flexible, and evidence-based
interventions directly to individuals in their communities
or homes.109 The use of technology-enhanced treatment
has a myriad of potential clinical benefits for individuals
with first-episode psychosis, including the capability of
providing real-time cues to engage in particular behaviors
as a compensatory mechanism for memory deficits (e.g., to
encourage medication adherence110), as well as the ability
to alert individuals to physiological early warning signs of
symptomatic exacerbations in a personalized manner (e.g.,
changes in heart-rate variability111).
Although the use of technological advancements in
psychiatric treatment is in its relative infancy,112 the ready
availability and sophistication of these technologies is prom-
ising. This has been particularly true for smartphones and
apps, which represent one of the most rapidly expanding and
adopted forms of technology in human history.113 Available
research suggests that up to 90% of individuals with first-
episode psychosis have access to smartphones.114,115 Given the
wide availability of this technology, these devices are ideal
for assessment of in vivo experiences of individuals with
psychosis. Ecological momentary assessment (EMA) – a
method for collecting information on naturalistic behaviors
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Breitborde et al
and experiences that has previously been done with paper-
and-pencil methodology – has been enhanced by the use of
smartphones. Smartphones offer participants the opportunity
to record information about their symptoms, feelings, and
thoughts in an immediately accessible forum that can auto-
matically sync with an external database. This approach can
mitigate the impact of cognitive deficits on memory and
recall, and can also provide cues for individuals to engage
in reflecting on internal processes and recording information
that can minimize the impact of deficits in the initiation of
behaviors that accompany psychotic-spectrum disorders.
Further, research suggests that symptom ratings collected
from individuals with psychosis via smartphone technology
have greater concordance with clinician ratings compared
with self-ratings made with paper and pencil.116 In addition
to being used to enhance treatment via self-monitoring,
smartphone technology can also be used to deliver interven-
tions directly to individuals with psychosis. Ben-Zeev et al117
recently investigated the efficacy of a smartphone-based
treatment to people with schizophrenia. This intervention was
designed to provide automated real-time/real-place illness
management support to individuals and was found to produce
improvements in mood regulation, medication adherence,
social functioning, and sleep. The demonstrated feasibility,
acceptability, and preliminary efficacy of this smartphone
intervention for schizophrenia offer promise for extending
evidence-based treatment for first-episode psychosis beyond
physical clinics and into the literal pockets of individuals via
widely available smartphone technology. As the benefits of
specialized care for first-episode psychosis may disappear
when young adults return to usual care,87,88 the extension
of evidence-based psychosocial treatment via smartphone
technology could potentially be leveraged to increase the
durability of the benefits produced by such specialized, but
typically time-limited, care.
Of note, the possibilities for integration of technology into
psychosocial treatment for first-episode psychosis also extend
to social media more broadly. For example, Alvarez-Jimenez
et al118 developed HORYZONS, an online intervention specif-
ically for youth with first-episode psychosis. Individuals with
first-episode psychosis could engage in a variety of interac-
tive psychosocial interventions on this moderated forum and
were also able to engage in peer-to-peer social networking.
Results indicated that this approach was feasible, engaging,
and safe for participants. The use of online forums to enhance
other psychosocial treatments for first-episode psychosis is
especially attractive, given its cost-effective nature, as well
as its potential to provide ongoing support that may prevent
disengagement from clinical services.
Technological advances are an evolving and exciting area
for clinical service delivery. However, the importance of an
evidence-based approach to treatment should not be forgotten.
Thus, there is a great need for additional research of smart-
phone and other technology enhancements for first-episode
psychosis. In the interim, mental health providers should
strive to be both open-minded and prudent in the integra-
tion of technology into treatment for first-episode psychosis.
Although many mental health apps are currently available,
the vast majority have not been scientifically evaluated.112,119
However, the literature on the use of apps for clinical treatment
of psychotic-spectrum disorders – despite being limited – does
provide strong evidence for the feasibility of this approach as
well as high rates of patient engagement and interaction.120
Conclusion
Outside of the first-episode psychosis literature, Guralnick121
has highlighted the distinction between first-generation and
second-generation research – research designed to investigate
the efficacy/effectiveness of an intervention versus research
designed to investigate how to optimize outcomes associated
with a proven intervention. With the efficacy and effective-
ness of numerous psychosocial interventions for first-episode
psychosis clearly established, scholars have noted the growing
need for a shift toward second-generation research within the
field.122 The optimization strategies described above highlight
some of the increasing corpus of second-generation research
on the treatment of first-episode psychosis that is emerging
internationally. Ultimately, such research has the potential to
optimize the treatment response to evidence-based psycho-
social interventions and to enhance the improved (but still
suboptimal) treatment outcomes commonly experienced
by individuals with first-episode psychosis. Moreover, as
interest in intervention for psychosis before the first-episode
grows,123,124 continued research on the optimization of psy-
chosocial interventions may also highlight ways to improve
the prevention of psychotic disorders among those at clinical
high risk.
Disclosure
Drs Breitborde and Moe have both received salary support
from the Institute for Mental Health Research (IMHR)
to support the launch of IMHR’s new clinical service for
individuals with first-episode psychosis. They also received
salary support from the Ohio Department of Mental Health
and Addiction Services to support the launch of a new
clinical service for individuals with first-episode psychosis
in Fairfield County, Ohio. This project was supported by
funds provided by The Ohio State University Department of
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Psychosocial interventions in first‑episode psychosis
Psychiatry and Mental Health to Dr Breitborde. The authors
report no other conflicts of interest in this work.
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Online Assessment Measures
For further clinical evaluation and research, the APA is offering a number of “emerging measures” in Section III of DSM–5. These patient assessment measures were developed to be administered at the initial patient interview and to monitor treatment progress, thus serving to advance the use of initial symptomatic status and patient reported outcome (PRO) information, as well as the use of “anchored” severity assessment instruments. Instructions, scoring information, and interpretation guidelines are included. Clinicians and researchers may provide APA with
feedback
on the instruments’ usefulness in characterizing patient status and improving patient care.
Level 1 Cross-Cutting Symptom Measures
- DSM–5 Self-Rated Level 1 Cross-Cutting Symptom Measure, Adult (also available in print book)
- DSM–5 Parent/Guardian-Rated Level 1 Cross-Cutting Symptom Measure, Child Age 6, 17 (also available in print book)
- DSM–5 Self-Rated Level 1 Cross-Cutting Symptom Measure, Child Age 11 to 17
Level 2 Cross-Cutting Symptom Measures
For Adults
- LEVEL 2, Depression, Adult (PROMIS Emotional Distress, Depression, Short Form)
- LEVEL 2, Anger, Adult (PROMIS Emotional Distress, Anger, Short Form)
- LEVEL 2, Mania, Adult (Altman Self-Rating Mania Scale [ASRM])
- LEVEL 2, Anxiety, Adult(PROMIS Emotional Distress, Anxiety, Short Form)
- LEVEL 2, Somatic Symptom, Adult (Patient Health Questionnaire 15 Somatic Symptom Severity Scale [PHQ-15])
- LEVEL 2, Sleep Disturbance, Adult (PROMIS, Sleep Disturbance, Short Form)
- LEVEL 2, Repetitive Thoughts and Behaviors, Adult (Adapted from the Florida Obsessive-Compulsive Inventory [FOCI] Severity Scale [Part B])
- LEVEL 2, Substance Use, Adult (Adapted from the NIDA-Modified ASSIST)
For Parents of Children Ages 6, 17
- LEVEL 2, Somatic Symptom, Parent/Guardian of Child Age 6, 17 (Patient Health Questionnaire 15 Somatic Symptom Severity Scale [PHQ-15])
- LEVEL 2, Sleep Disturbance, Parent/Guardian of Child Age 6, 17 (PROMIS, Sleep Disturbance, Short Form)
- LEVEL 2, Inattention, Parent/Guardian of Child Age 6, 17 (Swanson, Nolan, and Pelham, version IV [SNAP-IV])
- LEVEL 2, Depression, Parent/Guardian of Child Age 6, 17 (PROMIS Emotional Distress, Depression, Parent Item Bank)
- LEVEL 2, Anger, Parent/Guardian of Child Age 6, 17 (PROMIS Emotional Distress, Calibrated Anger Measure, Parent)
- LEVEL 2, Irritability, Parent/Guardian of Child Age 6, 17 (Affective Reactivity Index [ARI])
- LEVEL 2, Mania, Parent/Guardian of Child Age 6, 17 (Adapted from the Altman Self-Rating Mania Scale [ASRM])
- LEVEL 2, Anxiety, Parent/Guardian of Child Age 6, 17 (Adapted from PROMIS Emotional Distress, Anxiety, Parent Item Bank)
- LEVEL 2, Substance Use, Parent/Guardian of Child Age 6, 17 (Adapted from the NIDA-Modified ASSIST)
For Children Ages 11 to 17
- LEVEL 2, Somatic Symptom, Child Age 11 to 17 (Patient Health Questionnaire 15 Somatic Symptom Severity Scale [PHQ-15])
- LEVEL 2, Sleep Disturbance, Child Age 11 to 17 (PROMIS, Sleep Disturbance, Short Form)
- LEVEL 2, Depression, Child Age 11 to 17 (PROMIS Emotional Distress, Depression, Pediatric Item Bank)
- LEVEL 2, Anger, Child Age 11 to 17 (PROMIS Emotional Distress, Calibrated Anger Measure, Pediatric)
- LEVEL 2, Irritability, Child Age 11 to 17 (Affective Reactivity Index [ARI])
- LEVEL 2, Mania, Child Age 11 to 17 (Altman Self-Rating Mania Scale [ASRM])
- LEVEL 2, Anxiety, Child Age 11 to 17 (PROMIS Emotional Distress, Anxiety, Pediatric Item Bank)
- LEVEL 2, Repetitive Thoughts and Behaviors, Child Age 11 to 17 (Adapted from the Children’s Florida Obsessive Compulsive Inventory [C-FOCI] Severity Scale)
- LEVEL 2, Substance Use, Child Age 11 to 17 (Adapted from the NIDA-Modified ASSIST)
Disorder-Specific Severity Measures
For Adults
- Severity Measure for Depression, Adult(Patient Health Questionnaire [PHQ-9])
- Severity Measure for Separation Anxiety Disorder, Adult
- Severity Measure for Specific Phobia, Adult
- Severity Measure for Social Anxiety Disorder (Social Phobia), Adult
- Severity Measure for Panic Disorder, Adult
- Severity Measure for Agoraphobia, Adult
- Severity Measure for Generalized Anxiety Disorder, Adult
- Severity of Posttraumatic Stress Symptoms, Adult (National Stressful Events Survey PTSD Short Scale [NSESS])
- Severity of Acute Stress Symptoms, Adult (National Stressful Events Survey Acute Stress Disorder Short Scale [NSESS])
- Severity of Dissociative Symptoms, Adult (Brief Dissociative Experiences Scale [DES-B])
For Children Ages 11 to 17
- Severity Measure for Depression, Child Age 11 to 17 (PHQ-9 modified for Adolescents [PHQ-A], Adapted)
- Severity Measure for Separation Anxiety Disorder, Child Age 11 to 17
- Severity Measure for Specific Phobia, Child Age 11 to 17
- Severity Measure for Social Anxiety Disorder (Social Phobia), Child Age 11 to 17
- Severity Measure for Agoraphobia, Child Age 11 to 17
- Severity Measure for Generalized Anxiety Disorder, Child Age 11 to 17
- Severity of Posttraumatic Stress Symptoms, Child Age 11 to 17 (National Stressful Events Survey PTSD Short Scale [NSESS])
- Severity of Acute Stress Symptoms, Child Age 11 to 17 (National Stressful Events Survey Acute Stress Disorder Short Scale [NSESS])
- Severity of Dissociative Symptoms, Child Age 11 to 17 (Brief Dissociative Experiences Scale [DES-B])
Clinician-Rated
- Clinician-Rated Severity of Autism Spectrum and Social Communication Disorders
- Clinician-Rated Dimensions of Psychosis Symptom Severity(also available in print book)
- Clinician-Rated Severity of Somatic Symptom Disorder
- Clinician-Rated Severity of Oppositional Defiant Disorder
- Clinician-Rated Severity of Conduct Disorder
- Clinician-Rated Severity of Nonsuicidal Self-Injury
Disability Measures
- WHODAS 2.0 (World Health Organization Disability Schedule 2.0, 36-item version, self-administered. Also available in print book)
- WHODAS 2.0 (World Health Organization Disability Schedule 2.0, 36-item version, proxy-administered)
Personality Inventories
For Adults
- The Personality Inventory for DSM–5, Brief Form (PID-5-BF), Adult
- The Personality Inventory for DSM–5 (PID-5), Adult
- The Personality Inventory for DSM–5, Informant Form (PID-5-IRF), Adult
For Children Ages 11 to 17
- The Personality Inventory for DSM–5, Brief Form (PID-5-BF), Child Age 11 to 17
- The Personality Inventory for DSM–5 (PID-5), Child Age 11 to 17
Early Development and Home Background
For Parents of Children Ages 6 to 17
- Early Development and Home Background (EDHB) Form, Parent/Guardian
Clinician-Rated
- Early Development and Home Background (EDHB) Form, Clinician
Cultural Formulation Interviews
- Cultural Formulation Interview (also available as a print book)
- Cultural Formulation Interview, Informant Version (also available in print book)
- Supplementary Modules to the Core Cultural Formulation Interview (CFI)
About the Measures
These measures should be used to enhance clinical decision-making and not as the sole basis for making a clinical diagnosis. Further information on these measures can be found in DSM–5. The measures can be broadly classified into four types:
- Cross-cutting symptom measures may aid in a comprehensive mental status assessment by drawing attention to symptoms that are important across diagnoses. They are intended to help identify additional areas of inquiry that may guide treatment and prognosis. The cross-cutting measures have two levels: Level 1 questions are a brief survey of 13 domains for adult patients and 12 domains for child and adolescent patients, and Level 2 questions provide a more in-depth assessment of certain domains.
- Severity measures are disorder-specific, corresponding closely to criteria that constitute the disorder definition. They may be administered to individuals who have received a diagnosis or who have a clinically significant syndrome that falls short of meeting full criteria. Some of the assessments are self-completed, whereas others require a clinician to complete.
- The World Health Organization Disability Assessment Schedule, Version 2.0 (WHODAS 2.0) assesses a patient’s ability to perform activities in six areas: understanding and communicating; getting around; self-care; getting along with people; life activities (e.g., household, work/school); and participation in society. The scale is self- or informant-administered and corresponds to concepts contained in the WHO International Classification of Functioning, Disability and Health.
- The Personality Inventories for DSM–5 measure maladaptive personality traits in five domains: negative affect, detachment, antagonism, disinhibition, and psychoticism. For adults and children ages 11 and older, there are brief forms with 25 items and full versions with 220 items. A full version for informants is also available.
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According to the National Institute of Mental Health,
schizophrenia is a chronic, severe and disabling brain disorder that affects 1.1% of the population over the age of 18.
The term “schizophrenia” was coined by Eugene Bleuler from the Greek roots schizein (ÏÏίζειν, “to split”) and phrÄn, phren- (ÏÏήν, ÏÏεν-, “mind”). Schizophrenia literally means “split mind.” But, because of the etymology of the word, schizophrenia is commonly misrepresented as a split personality, or in clinical terms –
Dissociative Identity Disorder
(APA, 2000). The confusion between these two disorders is commonly found in the popular press, and is perpetuated in jokes, such as in this parody of a popular children’s rhyme:
Roses are red
Violets are blue
I’m schizophrenic
And so am I
This children’s rhyme makes schizophrenia sound like a simple confusion or perhaps a funny condition. Far from funny, schizophrenia is a severely disabling disorder. The symptoms of schizophrenia fall into three broad categories: positive, negative, and cognitive.
Positive symptoms: the presence of sensations, beliefs, and behaviors that would not normally occur. These are the most noticeable symptoms, and often the ones that are used to stereotype people with schizophrenia. Examples of positive symptoms include delusions (beliefs about things that are not true), hallucinations (seeing, hearing, smelling, feeling, or tasting things that others do not), slow movements or catatonia, and erratic emotions.
Negative symptoms: the lack of abilities. Examples include: lack of energy, difficulty engaging in social activities, poor motivation, difficulty making friends or functioning in psychosocial contexts.
Cognitive symptoms: There are two categories of cognitive symptoms – neuro-cognitive and social-cognitive. Neuro-cognitive deficits are problems with things like attention, memory, and executive function (the ability to engage in problem-solving). These are basic neuro-cognitive processes that people use in every day life. People with schizophrenia perform 2 standard deviations below average on test of neuro-cognitive functioning. The second category of cognitive symptoms are social cognitive deficits. These are the things that you think or do to act wisely and appropriately in social situations. One example is the ability to recognize social cues. People with schizophrenia have a profound deficit in picking up on social cues.
The combination of positive, negative, and cognitive symptoms, can make people with schizophrenia fearful and withdrawn, and cause difficulties in relationships with other.
Bio
Shaun M. Eack received his Ph.D. on November 4, 2008 from the
School of Social Work at the University of Pittsburgh
. He is a predoctoral fellow in the Department of Psychiatry at the University of Pittsburgh. His primary research focus is on the development, implementation, and evaluation of psychosocial treatment methodologies for persons with schizophrenia. He also studies the biopsychosocial factors that contribute to recovery and psychosocial outcomes among this population, and how the elucidation of these factors can serve to aid novel treatment development efforts. In addition, he holds a broad interest in social work education and workforce development as they relate to the provision of care for persons with schizophrenia and other severe mental illnesses. He has authored several publications under the mentorship of the late
Professor Gerard E. Hogarty
on the cognitive and behavioral effects of Cognitive Enhancement Therapy, a novel psychosocial treatment program for persons with schizophrenia. In addition, he has
published papers
on factors affecting various psychosocial outcomes among individuals with schizophrenia, particularly quality of life, as well as social work workforce development issues as they relate to serving individuals with schizophrenia. He is currently a recipient of an individual predoctoral fellowship from the National Institute of Mental Health that focuses on studying a novel domain of social cognition in schizophrenia and its implications for psychosocial treatment development.
[Note: This interview was recorded prior to Shaun’s successful disseration defense.]
Transcript
[
pdf download
]
Jonathan Singer: So Shaun, first question, what is schizophrenia?
Shaun Eack: That’s a very good question to start on. It’s, I mean, officially defined by the
DSM
.
Jonathan Singer: The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR, 2000, APA).
Shaun Eack: Yes that’s right, you’ll have to excuse me for all acronyms I may be using.
Jonathan Singer: Well, I might jump in so we get some clarification for our listeners.
Shaun Eack: Please do, please do. So anyways, it’s officially defined as a collection of symptoms, like all of the mental disorders that we work with in social work. It’s really just a constellation of signs and symptoms. Now in schizophrenia there are symptoms that are very specific, it’s a class of what’s known as the psychotic disorders, which you know used to be these things were grouped into disorders of psychosis and disorders of neurosis, where neurosis had to do with depression, anxiety, and psychosis had to do with disorders that sort of represent kind of a break with reality, interpretation of stimuli that isn’t there, or severe confusion and difficulty using language, and formal thought disorder. Schizophrenia is under that broad framework, it has some specific symptoms that people use to diagnose the disease, I won’t go over every single one of them, you know but the hallmark symptoms of schizophrenia really are what’s know as the positive category of symptoms, the hallucinations and delusions. A hallucination is really sort of the brains interpretation of some sort of stimuli that isn’t actually there in the external, sort of shared reality of everybody else. This is most frequently experienced by people hearing voices, there’s many different types of voices you can hear in schizophrenia, sometimes they comment on each other, sometimes they comment on you, sometimes they tell you what to do, sometimes they are just passive and they don’t really make sense, and so it’s a broad array of voices people could possibly hear that could be indicative of someone having schizophrenia. There are also hallucinations associated with every other sensory modality, from sight to touch, but by far the most common are auditory hallucinations, second behind that are visual hallucinations.
Jonathan Singer: Well it’s interesting because I think in the popular media, it’s the visual hallucinations that seem to get all the play.
Shaun Eack: Yes
Jonathan Singer: People are like “oh I am seeing…” What was it – Robin Williams in the Fisher King – and you know seeing someone on a horse riding towards him.
Shaun Eack: Hollywood has a tendency to over dramatize what it’s like to have schizophrenia, and paint a somewhat unreal picture of even what visual hallucinations might be like. So often times I think our patients report them being much less diffuse than sort of concrete picture of something doing something to you, like a person riding in on a horse, they’re usually much more nebulous than that. Not to say that that’s completely impossible or never happened.
Jonathan Singer: But it’s certainly more compelling in a blockbuster moving to have somebody riding towards you on a horse.
Shaun Eack: Yes, it does make for interesting story telling.
Jonathan Singer: (Laughs) Now you mentioned positive symptoms, I just want to say that when you say positive symptoms, does that mean it’s something that’s good?
Shaun Eack: That, it does not mean good. As anyone who has experienced them will tell you, it does not mean that they’re good. Now some people with schizophrenia have hallucinations that are less aversive and even they may come to depend on and enjoy, but for the most part people will agree that their hallucinations are at the very least annoying, at the most, very detrimental to their lives. Positive is just kind of a misnomer, and just refers to an excess in function. In this case, an excess in the brain responding to something that is not there. That’s why they call it a positive symptom, because it represents more than what sort of you have normally. To contrast that, schizophrenia is not only marked by quote unquote positive symptoms, but also what’s known as negative symptoms. We name things pretty simply in schizophrenia research, positive and negative, even though they may not make a whole lot of sense. As positive symptoms represent sort of an excess in sort of sensory function, negative symptoms represent some sort of inhibition or digress in function. These are usually characterized, I mean they can become very severe in many cases, but they’re usually characterized by symptoms sort of flat affect, so speaking with sort of very little affect in your voice, presenting with very little affect in your facial expressions, individuals it’s called sort of affect of flatting or affective, blunting of affect, there’s also a severe lack of motivation that’s characteristic of what we call negative symptoms, there’s also problems with poverty of speech, so not being able to produce language as fluently as other people, and you see this category as a little more easy to understand, than the positive symptoms, just in terms of its name. All of these represent really kind of a loss of function, whether it has to do with a lowering of speech, a lowering of affect, interpretation, or expression, and so on.
Jonathan Singer: So those are the positive and negative symptoms, are there any other characteristics of schizophrenia?
Shaun Eack: Those are the big two, schizophrenia is a remarkably heterogeneous disorder.
Jonathan Singer: What do you mean when you say heterogeneous?
Shaun Eack: No two people with schizophrenia look alike, and not just in appearance, I mean in their symptom presentation. The disorder is usually made up by a constellation of different symptoms, from positive to negative symptoms, there’s also symptoms of disorganization, formal thought disorder, individuals can present with what’s been termed as salad, which is essentially speaking and all of the words are coming out, they make no coherent sense and don’t logically form sentences.
Jonathan Singer: Just to interrupt, whenever I think of the word salad, I think of something that Steve Martin once said. He said if you want to have you teach kids to speak wrong, that way when they are first grade and they want to go to the bathroom they raise their hand and say “Mambo dogface with a banana patch”.
Shaun Eack: That is word salad to a T, yes, Steve Martin hit it right.
Jonathan Singer: Hit it right, exactly.
Shaun Eack: Absolutely. I completely forgot to mention delusions of course, as an important positive symptom that you would want to know about when you are diagnosing schizophrenia. It’s frequently associated with hallucinations people do have, and delusion are really sort of beliefs, often times of unusual nature and sort of extraordinary phenomenon that have little supporting evidence or really no supporting evidence in sort of everyday life and basic reality. Individuals believing that sort of aliens have come to them in their sleep and put some sort of transmitting device in their head that sends information to the FBI or the CIA would be an example of a paranoid delusion, for example. Delusions, most often are paranoid in nature, although not always, so individuals can also have delusions that they have extraordinary powers, sort all contrary evidence kind of suggests that they probably do not, and often times these delusions are associated with the voices, or other types of hallucinations these people are experiencing, and so they kind of work hand in hand. Some interesting work has been done to try to understand why people with schizophrenia develop delusions, and it turns out such individuals seem to be prone to kind of a gross misinterpretation of kind of anomalous experiences, experiences that don’t make a lot of sense, and if you think about how you might react, just yourself, to the anomalous experience of hearing voices chatting in your head that are not your own, you would probably try to make an explanation of that, and kind of spin a story about that, and depending on what they’re telling you, your story might be very strange, and even though everybody else would tell you that your story is wrong, you still hear these things in your head, and you want to explain them. You know it seems like a lot of times delusions may in fact be sort of very related to the hallucinations these people experience as really a method to some degree to kind of cope with them and explain you know the sort of unexplainable and anomalous experiences.
Jonathan Singer: That’s really interesting because I know this idea of hearing voices is something that can be confusing when social workers first start out because we all have chatter inside our head.
Shaun Eack: Sure.
Jonathan Singer: So how do you distinguish chatter from something that’s actually problematic?
Shaun Eack: Sure, so I mean we all have kind of an internal dialogue that we keep with ourselves you know through the course of the day and you know mostly all the time. But we all kind of know it’s us to some degree and people with schizophrenia, they think it’s someone else often times and I think that’s a pretty good beginning sing that there’s a problem. Another sort kind of tell tale sign is, not only if you think maybe it’s not you but it could be someone else, but if you kind of can’t stop it. I mean most of us can have, we may not have complete volitional control over our sort of internal dialogue, but most of us could you know kind of put the breaks on it if we really needed to, and really divert our attention externally to whatever we need to focus on. Individuals with schizophrenia hear voices have a big problem trying to do that and it’s probably a good sign that you’re lapsing into probably an auditory hallucination rather than just talking to yourself. It’s interesting, some of the neuro-imaging research that’s been done in schizophrenia suggests that the same types of areas of the brain that quote unquote light up or become activated when we’re talking to ourselves and processing auditory information, are also activated when these people are hearing voices. So you know they are not just responding to stimuli they’ve made up, at a very basic biological and physical level they’re hearing information, their brain is processing some type of auditory information, and so they can’t just stop that alright, I mean it’s a hardwired process to some degree.
Jonathan Singer: So if I was working with somebody with schizophrenia and they talked about you know hearing voices, then it would be important for me to clarify what exactly that meant. Because it could be that they’re not hearing voices in the sort of psychotic sense.
Shaun Eack: Yes.
Jonathan Singer: They could just be talking about the fact that they got a lot of stuff going on and they keep thinking about, what do I need to do today, you know, blah blah blah.
Shaun Eack: You know it’s definitely important to clarify, even if someone is hearing what you are pretty sure to be an auditory hallucination, it’s always good to clarify the nature of that because they have several, they have pretty good prognostic value, different types of auditory hallucinations.
Jonathan Singer: When you say prognostic value what do you mean?
Shaun Eack: Ok, so depending on what people hear and the types of voice they’re hearing, they’ll tell you to some degree how well these people are going to be doing, and maybe even how well they might respond to some type of medicine in the future. So there are some types of, I only say that because there are some types of auditory hallucinations that we know are really particularly problematic and really tell you know kind if foretell a particularly problematic story that people with schizophrenia might experience, and these are what are known as quote unquote command hallucinations. A command hallucination is a hallucination that you have, an auditory hallucination that you have that is telling you to do something, it is giving you commands, it is telling you to do something, and often times that commands aren’t good. And we know for these individuals, while very few people with schizophrenia are violent, for the individuals that hear command hallucinations, we know that their risk for doing something violent in nature, or doing something that you know really is uncharacteristic of the general population and the population of people with schizophrenia in general is much more elevated, than the people that hear just kind of a running commentary in their head or hear an occasional you know “boo” in terms of a voice. We know that these people with command hallucinations have much more difficulty and are much more likely to have you know a severe course of the illness and problems with violent behavior in the future.
Jonathan Singer: I’m going to switch the subject, just a little bit. Why should social workers be interested in understanding schizophrenia? And a related question, what’s the role of the social worker in working with people with schizophrenia?
Shaun Eack: Sure. Well, on a very practical level, if you’re a social worker working in a community mental health center, these are who you’ll be seeing. You’ll be seeing people that are experiencing schizophrenia, that often times have been suffering from the illness for many years, and so social workers should care, if for no other reason, because these are the people that you will be helping and serving in a community mental health center. Now of course, social workers, I think, have a much more sort of noble purpose in working with people with schizophrenia beyond the fact that they’ll be seeing them in treatment, and that’s, if we talk about all the different types of people who have mental illness, and all the different mental illnesses that are out there, I think it’s probably pretty safe to say that people with schizophrenia are most in need of an advocate, they’re most in need of someone to help stand up for them, most in need of someone to support them, and they often times fall through the cracks in our systems. So we’ll see many times, as of course is a stereotype associated with homelessness and being psychotic, or having schizophrenia or hearing voices, and so social workers with their knowledge, not only of mental health treatment and diagnosis, but at a broader more system level are really in a very well equipped position to help people with schizophrenia in a number of different ways: By providing direct treatment, by advocating for better treatment, by advocating for better social services, by helping these individuals when they’re being taken advantage of which happens very often, particularly you know people with schizophrenia receive a social, of course a disability payment, and often times people will try to take advantage of them to try to coerce them to give their disability payment to them or fork it over. Family members can do that on occasion, although often time family members are nothing but helpful when it turns into working with people with schizophrenia, they can be one of your greatest allies and resources, not only for the person that experiences the illness but also for the social worker that’s really trying to help them.
Jonathan Singer: And we did a podcast earlier with Carol Anderson who developed treatment called Family Psychoeducation that really brings the family together with the family member with schizophrenia, for example, as one of the treatments.
Shaun Eack: (laughs) The grandmother of schizophrenia – Carol. Dr. Anderson is an excellent treatment researcher and schizophrenia researcher.
Jonathan Singer: What are the other treatments that are out there for schizophrenia?
Shaun Eack: I mean if we just have to divide them broadly, you know because there’s a lot of them. They fall into two groups, one is a pharmacological approach, medicine, particularly anti-psychotic medication, so of which there’s lots of different kinds of course, and then the other one, which is the one that social workers provide, not that they should not know anything about psychopharmacology, of course it’s very important to know something about that, but the other type of treatment is psychosocial treatment, which ranges from therapy to family psychoeducation, which is as I am sure Carol explained kind of a misnomer, it’s education about the illness, it’s not sort of psychoeducation or whatever, there’s also sort of more systemic models like sort of community treatment, which was a very interesting approach developed by a social worker, a psychosocial approach to help people with schizophrenia live outside of the hospital. Particularly the people that had been in state hospitals for many years, rather than making them stay in the hospital, it’s let them live in the community and sort of bring the hospital to them, so they called it hospital without walls, which was a very effective approach, it’s been disseminated in a number of places now. There are several individual therapeutic approaches, one that we’ve been working on here at the University of Pittsburgh that focuses on improving cognitions in schizophrenia, and you know it’s one of the symptoms that we didn’t really talk about much, and it’s a symptom that actually most people don’t talk about much when they think of schizophrenia. I highlighted the two biggies, the positive and the negative symptoms, but we’ve recently turned our attention to these cognitive symptoms, and I’ve been trying to develop treatments for them for a number of reasons. Perhaps the most important, is even if we completely reduce or remove a persons positive symptoms, hallucinations and delusions, which anti-psychotic medications can be very effective at doing, many individuals with schizophrenia still experience great disability, and which was I think to some degree puzzling to people some years ago, that really kind of the hallmark of psychosis would be remitted, but these individuals would still have difficulty getting a job and maintaining friends, and sort of building the quality of life that most of us would consider to be even minimally sufficient. Some people started looking at the various aspects of schizophrenia and discovered that the disease really was characterized kind of by a core deficit in thinking, in cognition, that really kind of fell across two different domains, and that really helped us understand why these individuals are continuing to have difficulty and struggling in life, even after positive symptoms have gone away. And the two dimension of cognitive problems that people with schizophrenia tend to experience are, one area is called neuro-cognition, which is kind of the area of cognition that you think about when you think about thinking problems in general, problems with attention, problems with memory, problems with the quote unquote executive functions, which is really being able to solve problems, and so these are all kind of basic neuro-cognitive processes that people need to get on with their everyday life, to remember a phone number, to pay attention to a conversation, so on and so forth. And so it turns out that that’s a big problem in schizophrenia, people with schizophrenia perform on average two standard deviations below the mean of healthy individuals, right so that’s very poorly, and this has nothing to do with their intellect, it’s not to say that people with schizophrenia are not smart, many of them have above average IQ’s, these have to do with basic cognitive processes that you need to get on with your daily life, and that you need to put one foot in front of the other, and be able to make sense of the world and engage in complex problem-solving and information processing.
Jonathan Singer: So you’re suggesting that if somebody with schizophrenia is walking down the street and somebody says “Hey how are you doing?” and they have a hard time responding, it might not be because they’re actively hallucinating or they have paranoid delusions, or something else, you’re suggesting that there is some cognitive deficits going on that are separate from these other cluster of symptoms that we’ve been talking about that might prevent them from interacting or engaging with someone on the street?
Shaun Eack: Absolutely, so that’s not to say that auditory hallucinations will not keep you from engaging with people on the street, I mean those are certainly big barriers, but when we get those taken care of or largely under control, you’ll still see problems. And people with schizophrenia will still tell you, “I’m still having trouble sort of concentrating and focusing, and remembering what I’m supposed to do everyday” and what not. So there is a basic core deficit in cognition in schizophrenia, one is this domain of neuro-cognition, there is another domain that’s very recently become a major area of study in schizophrenia research, called social cognition, and these are the kind of things that you do or think about to be able to act wisely in social situations, they’re the kind of mental processes that you’ll engage in to be able to interact with others effectively, and process social information. For example, all of us has the ability to recognize various social cues, most often in peoples faces to let us know how they’re doing and how they’re responding to whatever we’re interacting with them and however we’re talking with them, and people with schizophrenia have a profound deficit in being able to pick up these kind of cues, which you can only imagine, I mean look if you have difficulty remembering and keeping track of things in a conversation, and you can’t kind of tell how a person is reacting to it because you’re having difficulty judging their facial expressions of emotion, then that puts you at a great disadvantage for building relationships, for interacting effectively, and being able to act wisely in social situations. So these have become strong predictors of how people with schizophrenia are going to do, and how people with schizophrenia are doing currently, and they’re even stronger than the positive symptoms of the disorder, right, so those things are very important, and will certainly limit your ability to get along with others and function. But after it’s all said and done and you get some good medicine and you get those taken care of, these are some of the residual symptoms that are left that we need to focus on in order to help these guys build a good quality of life and eventually recover from the disease, so that’s a nice long digression to what we’ve been up to here in Pittsburgh, working on a therapy to improve cognition in schizophrenia. It’s a psychosocial treatment developed by a social worker by the name of Jerry Hogarty, who has developed, he’s the king of psychosocial treatments in schizophrenia, has developed these treatments for many many years, his latest and kind of culmination of his work is Cognitive Enhancement Therapy, which as the name suggests is a therapy designed to work on improving or enhancing cognition in schizophrenia.
Jonathan Singer: So there are a couple of things, one this idea that cognitive symptoms are perhaps more important than positive or negative symptoms, or maybe that’s overstating it.
Shaun Eack: I think that probably is a little bit, I don’t’ want to paint the picture that positive symptoms are not important. They are very important, the good thing about them is their generally responsive to treatment, which means now that we can help people with those, we need to start working on the things that we haven’t been able to help them with.
Jonathan Singer: So because we have medications that can address these positive symptoms, what you’re talking about is really the next step in the treatment of schizophrenia and, so if I were a social workers out there, and I said “Oh, ok, great, everything’s great, my client’s doing well, taking her medication, and she’s not hearing voices, the paranoia is under control, everything is good to go”, you’re suggesting “No”.
Shaun Eack: I would certainly argue with that, I think the challenge for us as social workers is to not stop at, oh they’re taking their meds, you know they haven’t gotten in trouble lately, they’re not hearing voices, they don’t close the blinds all the time because they think the CIA’s after them, you know for many years that was like doing great for people with schizophrenia, and the challenge for us is to begin to step beyond that because you know if all that we are doing is helping these people take their medicine, and helping these people feel a little less you know influenced by their delusions, I think we’re not doing enough. I think the people that we serve would say “You know, I want a little something more than stability, I want a life.”
Jonathan Singer: So one of the ways to do that, that sounds like you guys have been working on here in Pittsburgh is this treatment called Cognitive Enhancement Therapy and I think that would be a great podcast to follow up on. Thanks so much for coming here and talking about schizophrenia and really sort of unpacking this idea, this disorder that as you mentioned before, looks different in everybody.
Shaun Eack: It does.
— End —
References and resources
@Health.com. (2008, October 15). Schizophrenia.
http://www.athealth.com/Practitioner/Newsletter/FPN_12_10.html
Anderson, C. M., Reiss, D. J., & Hogarty, G. E. (1986).
Schizophrenia and the family
. New York: Guilford.
Hogarty, G. E. (2002).
Personal Therapy for schizophrenia and related disorders: A guide to individualized treatment
. New York: Guilford.
Keshavan, M. S., Tandon, R., Boutros, N. N., & Nasrallah, H. A. (in press). Schizophrenia, “Just the facts”: What we know in 2008 Part 3: Neurobiology. Schizophrenia Research. Available at:
http://dx.doi.org/10.1016/j.schres.2008.07.020
Mueser, K. T., & McGurk, S. R. (2004). Schizophrenia. Lancet, 363(9426), 2063-2072.
National Institute of Mental Health. Schizophrenia. Available at:
http://www.nimh.nih.gov/health/publications/schizophrenia/complete-publication.shtml
Bethesda, MD: Author.
Tandon, R., Keshavan, M. S., & Nasrallah, H. A. (2008). Schizophrenia, “Just the Facts” What we know in 2008 Part 1: Overview. Schizophria Research, 100(1-3), 4-19.
doi:10.1016/j.schres.2008.01.022
Tandon, R., Keshavan, M. S., & Nasrallah, H. A. (2008). Schizophrenia, “Just the Facts”: What we know in 2008. 2. Epidemiology and etiology. Schizophrenia Research, 102(1-3), 1-18.
doi:10.1016/j.schres.2008.04.011
Tunner, T. (n.d.). Schizophrenia – how social workers help. Help Starts Here. Retrieved on April 24, 2008 from
http://www.helpstartshere.org/Default.aspx?PageID=520
APA (6th ed)
citation for this podcast:
Singer, J. B. (Producer). (2008, November 17). #45 – Schizophrenia and social work:
Interview
with Shaun Eack, Ph.D. [Episode 45]. Social Work Podcast [Audio podcast]. Retrieved from
http://www.socialworkpodcast.com/2008/11/schizophrenia-and-social-work-interview.html
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4 comments:
TheEO
said…
This is a useful article – my son has schizophrenia and is well on the recovery/coping road. We need advice on helping him to overcome his social deficits. It is obvious to people he meets that he is somehow different and you are dead right about their inability to pick up social cues. He has reasonable body language, though he often displays the wrong or a dead expression. Any advice/books etc?
November 17, 2008 at 2:28 PM
Jonathan B. Singer, Ph.D., LCSW
said…
I’ve passed along your comment to my guest, Shaun Eack. He might have some specific advice about how your son can overcome his social deficits. Until the, I can recommend a book called Diagnosis Schizophrenia by Rachel Miller and Susan Mason. The book includes thirty-five first-person accounts about life after a diagnosis of schizophrenia. It also includes research findings and addresses topics that people with a diagnosis of schizophrenia and their families might find useful.
November 17, 2008 at 2:36 PM
margaret
said…
A website with useful info for families and patients with psychotic disorders is: www.psychosissucks.org. This site has information resources for download that explain in clear, straightforward language the symptoms and development of psychosis, and make recommendations for patients and families in response to it. The site is part of a community mental health program in England. Useful, credible information.
February 11, 2012 at 11:51 AM
margaret
said…
A corection: the site I noted is www.psychosis.ca
February 11, 2012 at 11:59 AM
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15
January 2019, Volume 29, Number 1
Original Paper
The Effectiveness of Humor Skills Training on Positive and
Negative Symptoms of Chronic Schizophrenia Spectrum
Akbar Atadokht1* , Sorayya Ebrahimzadeh2, Niloofar Mikaeeli1
1. Associate Professor, Department of Psychology, School of Education and Psychology, University of Mohaghegh Ardabili, Ardabil, Iran.
2. Psychology (MA.), School of Education and Psychology, University of Mohaghegh Ardabili, Ardabil, Iran.
* Corresponding Author:
Akbar Atadokht, PhD.
Address: Department of Psychology, School of Education and Psychology, University of Mohaghegh Ardabili, Ardabil, Iran.
Tel: +98 (45) 33516686
E-mail: ak_atadokht@yahoo.com
Introduction: Although humor plays an important role in improving people’s mental and
physical health, empirical studies on the effectiveness of humor skills training to improve the
symptoms of the patients with schizophrenia are scarce.
Objective: This study aimed to determine the effectiveness of humor skills training on
positive and negative symptoms in male patients with chronic schizophrenia spectrum.
Materials and Methods: This research has a quasi-experimental design with pretest-
posttest and control group. The statistical population consisted of male patients with
chronic schizophrenia admitted to rehabilitation centers in Ardabil City, Iran. A sample of
30 patients were selected with cluster random sampling method and randomly divided
into two groups of experimental (n=15) and control (n=15). Members of both groups
were pretested and humor skills training program using the McGee 8-step plan was
administered to the experimental group for 8 sessions. To collect the data, the Positive
and Negative Syndrome Scale (PANSS) was used. The obtained data were analyzed using
Analysis of Covariance (ANCOVA).
Results: Positive and negative symptoms scores significantly decreased after 8 sessions of
humor skills training in the experimental group (P=0.001) while there was no significant
difference between pretest and posttest scores in the control group (P>0.05).
Conclusion: Humor skills training decreased positive and negative symptoms in patients with
schizophrenia. Therefore, using this program is recommended to reduce the problems of
patients with schizophrenia.
A B S T R A C T
Keywords:
Positive symptoms,
Negative symptoms, Humor,
Schizophrenia
Citation Atadokht A, Ebrahimzadeh S, Mikaeeli N. The Effectiveness of Humor Skills Training on Positive and Negative Symp-
toms of Chronic Schizophrenia Spectrum. J Holist Nurs Midwifery. 2019; 29(1):15-21. https://doi.org/10.29252/HNMJ.29.1.273
Running Title Humor Skills Training in Chronic Schizophrenia Spectrum. J Holist Nurs Midwifery.
: : https://doi.org/10.29252/HNMJ.29.1.273
Use your device to scan
and read the article online
Article info:
Received: 03/15/20
18
Accepted: 08/27/2018
Available Online: 01/01/20
19
2018 The Authors. This is an open
access article under the CC-By-NC license.
Introduction
chizophrenia is a serious mental disorder
in which the patient experiences distorted
perception of reality and disturbances in
thinking, behavior, emotions and motivation [1]. The
prevalence of schizophrenia is about 0.3% to 0.7% [2].
The incidence rate is quite similar in men and women,
but the disorder onset in men is earlier and they are
more likely to be admitted to rehabilitation centers. S
https://orcid.org/0000-0001-5538-9242
mailto:Ak_atadokht@yahoo.com
https://doi.org/10.29252/HNMJ.29.1.273
http://hnmj.gums.ac.ir/page/121/Open-Access-Policy
https://crossmark.crossref.org/dialog/?doi=10.29252/hnmj.29.1.273
http://hnmj.gums.ac.ir/page/121/Open-Access-Policy
https://creativecommons.org/licenses/by/4.0/legalcode
16
January 2019, Volume 29, Number 1
About 5% to 25% of these patients are treated annu-
ally [3]. Symptoms of schizophrenia are expressed in
patients’ physical, mental, behavioral and emotional
aspects and affect patients’ thoughts, feelings, senses,
and behavior. These include both positive and negative
symptoms.
Positive symptoms are those that were not present in
the patient, but appeared after the disorder [4]. Con-
trary to what the name implies, these symptoms are not
good or useful. They are called “positive” because they
expand the truth and enhance it. Such expansion or ex-
aggeration is undesirable [5]. The symptoms are more
functional and the most important of which are halluci-
nations, delusions, strange behavior, and impaired think-
ing [6]. Negative symptoms indicate some kinds of activi-
ties and tasks that should be existed [5] but expressing
behavioral disorders. They include superficial emotion,
speech poverty (alogia), passivity, lack of motivation,
lack of pleasure, attention and cognitive deficits [6].
Schizophrenia causes conflicts in job performance and
education along with economic, social and personal
problems and would instigate numerous medical and
non-medical costs such as loss of work (due to illness or
caring for relatives) on the patient, the family and soci-
ety [7]. Long-term treatment goals consist of improving
negative symptoms and empowering patients’ function-
ing and optimizing positive symptoms control [8-10].
Various therapeutic interventions have been recom-
mended for the patients among which are cognitive be-
havioral therapy to reduce positive symptoms [11]; music
therapy to control psychotic symptoms [12], depression
(as positive symptoms) [13], and increased quality of
life [14]; agricultural activity to improve physical, social,
emotional and cognitive functioning [15], and quality of
life [16]; and humorous films to reduce negative symp-
toms of anxiety and depression in patients with schizo-
phrenia [17]. Although the conventional treatment of
schizophrenia include both medical and psychiatric prac-
tices, integrating psychological treatment with medical
therapy may significantly improve the general health of
the patients with schizophrenia [18].
In this regard, one of the psychological interventions
to control symptoms and complications of mental disor-
ders is strengthening the sense of humor i.e. the ability
to understand and experience a humorous and ridicu-
lous situation. This ability is not inherited but acquired
through learning and practice. Through emotional, cog-
nitive, social and physiological impact, humor can be
used as a new procedure to deal with various mental
disorders and rehabilitate them [17]. Its first function
would be serving as a distracting technique, i.e. prevent-
ing patients from thinking about their problems [19]
and help people have more desire to do social activities
as well as forming social interaction and strengthening
it over time [20].
The results of most studies on the impact of physical
and psychological health foster a sense of humor [21],
because telling jokes and humor serve as an effective
way to deal with problems, or cope with the problems
which are uncontrollable [22]. In humorous patients,
the process of perception and judgment of the current
condition is better [23]. The implementation of humor
skill training in a mental health service may improve re-
habilitative outcomes [24] and reduce frustration in de-
pressed patients with spinal cord injury [25, 26].
Schizophrenia is a chronic disease, so huge expendi-
tures including the cost of medication, frequent hospi-
talization and outpatient centers, therapeutic and reha-
bilitation services are obviously imposed on the health
system and the patients’ families. Therefore, exploring
new ways to improve the patients’ symptoms seems to
be necessary. With appropriate skills and techniques to
reduce this problem, steps can be taken to improve pa-
tients’ mental and physical problems. In this regard, this
study aimed to determine the effectiveness of humor
skills training in reducing positive and negative symp-
toms of male patients with chronic schizophrenia.
Materials and Methods
The research adopted a quasi-experimental approach
with pretest-posttest design and control group. In this
study, the skills of humor were the independent vari-
ables and positive and negative symptoms were the
dependent variables. The study population consisted of
male patients with chronic schizophrenia hospitalized
in medical and rehabilitation centers in Ardabil, Iran
(five centers with approximately 250 patients) in 2016.
Among these centers, one rehabilitation center was
randomly selected and then 30 subjects were selected
from this center through simple random sampling and
were randomly categorized into two groups, experi-
mental (n=15) and control (n=15), according to the mini-
mum sample law in experimental studies.
The study inclusion criteria comprised confirmed diag-
nosis of schizophrenia by psychiatrists through clinical
interview based on DSM-5 diagnostic criteria, ability to
read and write, and patient and family’s written consent
to participate in the study. In the process of implement-
Atadokht A, et al. Humor Skills Training in Chronic Schizophrenia Spectrum. J Holist Nurs Midwifery. 2019; 29(1):15-21.
17
January 2019, Volume 29, Number 1
Atadokht A, et al. Humor Skills Training in Chronic Schizophrenia Spectrum. J Holist Nurs Midwifery. 2019; 29(1):15-21.
ing the study, one of the patients died and four others
were excluded from the research process because of
taking time off from the study and finally the data of 13
patients in the experimental group and 12 patients in
the control group were analyzed.
To collect the data, Positive and Negative Syndrome
Scale (PANSS) was used that developed in 1987 by Kay
to measure the severity of symptoms in patients with
schizophrenia [27]. It assesses five subscales of negative
symptoms, positive symptoms, disintegration, agitation,
anxiety, and depression. The scale is scored based on a
5-point Likert-type scale. High scores indicate more se-
vere symptoms. Total scores were obtained from sum-
ming up scores of 30 questions. The Cronbach alpha co-
efficient for this scale was estimated as 0.83. In a study
conducted by Abolghasemi [28] and in this study, the
Cronbach alpha coefficient was estimated as 0.80.
The study procedure was as follows: after randomly
assigning the participants (the names are arranged al-
phabetically and divided into even and odd numbers),
they were divided into control and experimental groups.
First, members of both groups were tested (as pretest).
Then, humor skills training program [25] was adminis-
tered to the experimental group using the 8-step Mc-
Gee’s humor skills training program for 4 weeks, two
60-minute sessions per week. The session contents are
listed in Table 1. It should be noted that both the assess-
ment and the intervention were carried out by one per-
son (researcher) and patients in both groups received
their routine treatment during the intervention.
To analyze the data, the Chi-square test was used to
compare the frequency distribution of patients in the
two groups in terms of demographic characteristics and
their homogeneity. In addition, covariance analysis was
used to evaluate the effectiveness of intervention and
compare the controlling effect of pretest and posttest
scores. All analyses were done in SPSS V. 18.
Results
All patients were male and some personal character-
istics of the participants are reported and compared in
Table 2. According to the findings, there is no significant
difference between groups in terms of educational sta-
tus, marital status, age distribution and admission in
the center (P>0.05). Table 3 presents the mean score of
schizophrenia symptoms in the experimental and con-
trol group. The experimental group scores in the post-
test decreased. To evaluate the effectiveness of teach-
ing humor skills on the positive and negative symptoms,
the covariance analysis was used.
Table 1. The purpose and content of humor skills training
Sessions Objective Description
First Introduction and familiarity with group rules
Talking about the concept of humor, benefits and the need to learn this skill
and its effect on social interaction, physical and psychological well-being and
resistance to daily tensions.
Second
Determining the nature of the
sense of humor and occupying
with humor
Exchanging ideas, modeling and behavioral exercises such as funny conversa-
tion with another person and doing the necessary exercises.
Third Laughing a lot, learning to tell jokes and funny stories
Using discussion forums, skills in enabling children within ourselves, ten min-
utes of laughing without a reason and expressing emotions.
Fourth Playing with language, words and increasing the sense of humor
Using techniques such as playing with words, telling jokes and riddles, teaching
specific humor skills, mimicking words and sounds and movements of comedi-
ans and ten minutes of laughing without reason and expressing emotions.
Fifth Finding humor in everyday life Sharing your funny experiences with others, modeling and ten minutes of laughing for no reason and expressing emotions.
Sixth Learning to laugh at your mistakes
Members’ laughing with each other, learning how to fight and prevent prob-
lems for group activities and ten minutes of laughing for no reason and express-
ing emotions.
Seventh
Finding humor in a stressful situa-
tion and using humor to deal with
problems
Talking about style of humor in stressful situations, teaching patterns of using
humor in stressful situations to individuals and cognitive exercises.
Eighth Summarizing and exchanging experiences
Using the skills learned and reviewing their impacts and providing a summary of
the training program.
18
January 2019, Volume 29, Number 1
The results in Table 4 indicate that after controlling the
pretest effect, there is a significant difference in positive
and negative symptoms in posttest scores between the
two groups (P<0.05); and the ETA coefficient or the ef-
fect size estimate suggests that subjects’ membership
to a group (with or without treatment) explained 85% to
89% of the variance in positive and negative symptoms.
The results of the homogeneity of variances analysis in-
dicate that the assumption has been observed in all the
studied variables.
Table 2. Comparing the patients’ demographic characteristics between experimental and control groups
Sig.*
N. (%)
Variables
ControlExperimental
0.714
3(25)3(23.1)Elementary school
Education
4(33.3)6(46.2)Middle school
4(33.3)4(30.8)Diploma
1(8.3)0(0)Higher education
0.891
4(33.3)4(30.8)Married
Marriage
8(66.7)9(69.2)Single
0.933
2(16.7)2(15.4)20-30
Age(y)
4(33.3)3(23.1)31-40
5(41.7)7(53.8)41-50
1(8.3)1(7.7)51-60
0.605
3(25)4(30.8)1-5
Hospitalization
history (number) 5(41.7)3(23.1)6-10
4(33.3)6(46.2)>10
*Chi-Square test
Table 3. Mean score of positive and negative syndrome in pretest and posttest
Control (n=12)Experimental (n=13)
Test StageSchizophrenia Symptoms
Mean±SD
25.41±5.1921.69±3.79pretest
Negative
26.08±4.1212.46±3.17posttest
18.83±4.5418.84±4.56pretest
Positive
19.50±3.7010.76±2.68posttest
Table 4. Results of covariance analysis for experimental and control groups
Group EffectPretest EffectEquality of Error Variances
Variables
Partial Eta SquaredSig.FSig.FSig.F
0.8890.001176.3850.00162.8590.7190.132Negative symptoms
0.8550.001130.1080.00142.8030.6910.163Positive symptoms
Atadokht A, et al. Humor Skills Training in Chronic Schizophrenia Spectrum. J Holist Nurs Midwifery. 2019; 29(1):15-21.
19
January 2019, Volume 29, Number 1
Discussion
The study results indicate that the experimental
group had a significant reduction in negative symp-
toms, expressed in their posttest scores. Thus, teach-
ing humor skills significantly reduced the negative
symptoms of schizophrenia disorder. The findings of
this study are in line with the results of the studies by
Chunfeng et al. [24] and Gelkopf [17] on the effect of
humor on patients with schizophrenia and with the
Shams study on depressed people’s frustration and
compatibility [26]. The results of the current study are
also consistent with the study by Falkenberg on im-
proving the depressed patients’ mood [29].
These results can be justified because in schizophrenic
patients with negative symptoms due to behavioral im-
pairments such as passivity, inexpressiveness, lack of
enjoyment, loss of emotional and social apathy, almost
no stimulus can trigger emotional responses [30]. Thus,
jokes and humor in these patients would trigger a sense
of enjoyment, and serve as an acceptable therapeutic
method to endure many unpleasant things. They gradu-
ally gain the capacity to cope with stress and anxiety
caused by serious diseases and eventually stop and
even improve their condition [31].
When hilarious and witty people encounter negative
events, they try to maintain their positive feeling, while
people with weak sense of humor have lower levels of
positive emotions. In addition to the beneficial nature
of positive emotions and coping with negative mood,
humor serves as a coping mechanism against stressful
events of life and a valuable social skill useful to estab-
lish, maintain and improve interpersonal relationships
[32]. People who learn, practice and apply the humor
skills, can partly forget their illnesses. Such people are
also able to establish sound relationships with family
members and others and achieve a high level of so-
cial harmony [25]. The results also showed that humor
skills training reduces positive symptoms in patients
with schizophrenia. Such finding is consistent with the
results of the studies by Falkenberg [29] and Shams [26]
but disagree with the results of Chunfeng [24] and Gel-
kopf et al. Studies [17].
To explain such discrepancy between the results, it
should be mentioned that the patients with schizophre-
nia use schemes related to hallucinations and delusions
to organize their information. This leads to their inability
to correctly process and recognize emotions resulting in
facing trouble in their social interaction and exposure to
different life situations [33]. These patients express their
excitement in almost unusual ways and such strange be-
havior makes people stay away from these patients [34].
The significant relationship can be attributed to humor
skills training sessions which help them experience the
right way to show their emotions and appropriate fa-
cial expressions. In addition, positive emotions lead to
social cohesion and expression of negative emotions
and they serve as one of the most common and most
effective methods of inducing mood. Jokes and humor
release tension from the conflicts, attitudes and ideas
and can be useful to help the mentally-ill patients to the
extent that they have lower stress, better social interac-
tions. They also cope better with the problems and are
more compatible people [35].
Humor widely and positively impact the patients’
health, perceptions, attitudes, judgments and feelings
[23]. Humor helps people see the positive side of the
events and consider them as funny conditions which
would, therefore, decrease the stress [36]. As a result,
humor would bring about the enjoyment and better so-
cial relations. It teaches patients the proper way to ex-
perience the excitement. The negative symptoms would
decrease patients’ ability to enjoy positive stimuli and
social interactions and positive symptoms cause prob-
lems for the patients to express their emotions, but hu-
mor prepares the ground for better social relationships.
Based on our results, the changes in the experimen-
tal group, who received the humor skills training,
reflect the impact of learning these skills in eight ses-
sions. Therefore, the skills taught in this study can be
used as part of treatment of schizophrenic patients. In
future studies, it is suggested to assess the patients’
condition at 3-month or 6-month follow-up or more to
test the effects of long-term intervention. In addition,
to increase the generalizability of the findings, further
studies should include female schizophrenic patients to
compare the differences in the study variables and to
examine the effect of humor skills training on other is-
sues in these patients.
Ethical Considerations
Compliance with ethical guidelines
This research has been approved by the Ethics Committee
of the Islamic Azad University of Ardabil (code No. IR.IAU.AR-
DABIL.REC.1395.6) and registered (IRCT2016053028174N1).
Atadokht A, et al. Humor Skills Training in Chronic Schizophrenia Spectrum. J Holist Nurs Midwifery. 2019; 29(1):15-21.
20
January 2019, Volume 29, Number 1
Funding
This article was extracted from a Master thesis of
Sorayya Ebrahimzadeh in School of Education and Psy-
chology, University of Mohaghegh Ardabili, Ardabil, Iran.
Authors contributions
The authors contributions is as follows: Conceptual-
ization, methodology, investigation and writing-origi-
nal draft: Akbar Atadokht and Sorayya Ebrahimzadeh;
Writing-review & editing: Akbar Atadokht and Niloofar
Mikaeeli; Funding acquisition and resources: Sorayya
Ebrahimzadeh; and Supervision: Akbar Atadokht and
Niloofar Mikaeeli.
Conflict of interest
The authors declared no conflict of interest.
Acknowledgements
Researchers would like to appreciate the personnel of
Ardabil Rehabilitation Centers.
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The lived experience of schizophrenia: A
systematic review and meta-synthesis
Joseph Walsh, Rebecca Hochbrueckner, Jacqueline Corcoran & Rachel
Spence
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The lived experience of schizophrenia: A systematic review
and meta-synthesis
Joseph Walsh, PhD, Rebecca Hochbrueckner, MPT, Jacqueline Corcoran, PhD,
and Rachel Spence, BA
School of Social Work, Virginia Commonwealth University, Richmond, Virginia, USA
ABSTRACT
Schizophrenia is a serious mental illness characterized by
abnormal patterns of thought and perception. What has been
studied less often is the personal experience of having schizo-
phrenia. Qualitative studies have been illuminating in this
regard, and the purpose of this meta-synthesis is to determine
the themes that can be identified across those studies. The
inclusion criteria required that the studies employed qualita-
tive methods, that participants had been diagnosed with schi-
zophrenia, and the studies focused on their “lived experience.”
After applying search criteria to databases, 27 studies were
included in the meta-synthesis. Five major themes were iden-
tified in the results, including: (1) the experience of symptoms;
(2) the process of acceptance; (3) personal relationships; (4)
treatment experiences; and (5) spiritual practices and faith.
Implications of these results are explored.
KEYWORDS
Schizophrenia; qualitative
research; meta-synthesis
Schizophrenia is a mental disorder characterized by abnormal patterns of
thought and perception. It includes two types of symptoms (American
Psycholagical Association [APA], 2013). Positive symptoms represent exag-
gerations of normal behavior, and include hallucinations, delusions, disorga-
nized thought processes, and tendencies toward agitation. The negative
symptoms of schizophrenia represent the diminution of what would be
considered normal behavior, and include flat affect (the absence of expres-
sion), social withdrawal, non-communication, anhedonia (blandness), pas-
sivity, and ambivalence in decision making. Complete and permanent
remission in schizophrenia is relatively uncommon. A person with the dis-
order may experience a chronic course, with symptoms being more or less
florid but never really disappearing, or one in which periods of psychosis are
interspersed with periods of remission (van Os, Rutten, Bart, & Poulton,
2008). The average life span of persons with schizophrenia is variously
reported as 16 to 22 years shorter than the national average in the United
States due to lifestyle factors such as diet, physical health, and risks related to
CONTACT Jacqueline Corcoran, PhD jcorcora@vcu.edu School of Social Work, Virginia Commonwealth
University, 907 Floyd Avenue, Richmond, VA 23284.
SOCIAL WORK IN MENTAL HEALTH
2016, VOL. 14, NO. 6, 607–624
http://dx.doi.org/10.1080/15332985.2015.1100153
© 2016 Taylor & Francis
poverty (Cohen, 2012). Suicide is the leading cause of premature death in
schizophrenia, as 20–40% of persons attempt suicide at some point in their
lives and 5–10% succeed (Johnson, Gooding, & Tarrier, 2008).
The nature of schizophrenia has been a major research topic in the health
sciences for more than a century, but most studies have focused on its causes
and treatment. What has been studied less often is the personal experience of
having schizophrenia. Qualitative studies have been illuminating in this
regard, and the purpose of this meta-synthesis is to determine the themes
that can be identified across those studies.
Inclusion criteria and search
The inclusion criteria required that the studies employed qualitative meth-
ods, the participants had been diagnosed with schizophrenia, and the studies
focused on the “lived experience,” in other words, what it is like to live with a
diagnosis of schizophrenia, rather than honing in on specific aspects of the
disorder. A database search was completed by a PhD-level research assistant
at Virginia Commonwealth University. The search was based on terms and
appropriate Boolean operatives provided by a reference librarian that
included the following keywords: personal reflection, lived experience, quali-
tative, phenomenology, schizophrenia, schizoaffective disorders, schizotypal,
schizoid personality disorder, schizophreniform, personal experience, and psy-
chotic disorder. Searches were conducted using the following databases:
CINAHL, Social Work
s, Psychology & Behavioral Sciences,
PsycARTICLES, PsycINFO, PsycEXTRA, Academic Search Complete, and
Dissertations ProQuest. Search criteria did not specify a beginning date and
extended to May, 2014. The initial searches produced a list of 4,298 potential
studies.
The three-step process of study selection developed by Meade and
Richardson (1997) was used to narrow the results of the search based first
on title alone, then including the abstract, and finally the entire text of the
study. The research assistant submitted the studies he believed fit the inclu-
sion criteria to the principal investigator, who made final determinations.
Primary reasons for excluding studies were that they focused narrowly on a
specific aspect of schizophrenia, focused on families rather than the indivi-
duals with the disorder, or were quantitative as opposed to qualitative (mixed
method designs were included as long as there was qualitative data that was
analyzed). Through this process, the original list of articles was narrowed to
43 studies, of which 27 met all inclusion criteria.
608 J. WALSH ET AL.
Table 1. Primary studies: methodological details and themes.
Study Design/theory Sample Themes
Anderson (2011) Interviews
Interpretive
phenomenology
N = 5
African American males
Experience of symptoms
Process of acceptance
Baier (1995) Interviews
Naturalistic inquiry
N = 26
18 males, 8 females
22 Caucasians, 4
African Americans
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/medication
Baker (1996) Interviews
Interpretative
interactionism
N = 15
10 males, 5 females
Canadian study
Experience of symptoms
Personal relationships
Treatment/provider
interaction
Eklund et al. (2012) Interviews
Content analysis
N = 10
5 males, 5 females
Swedish study
Experience of symptoms
Process of acceptance
Personal relationships
Evenson et al. (2008) Interviews
Interpretative
phenomenology
N = 10
Biological fathers with
schizophrenia
All Caucasian
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/medication
Fernandes (2009) Interviews
Psychodynamic
N = 4
2 males, 2 females
Ethnicity not noted
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/provider
interactions
Flanagan et al. (2012) Interviews
Interpretive
phenomenology
N = 17
71% female
77% African American,
17% White, 6% Native
American
Experience of symptoms
Personal relationships
Treatment/provider
interactions
Forchuk et al. (2003) Interviews
Leninger’s phases
of qualitative
analysis
N = 10
7 males, 3 females
All Caucasian/Canadian
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/provider
interactions
Medication
Gee, Pearce, and Jackson
(2003)
Interviews
Grounded theory
N = 6
3 males, 3 females
Ethnicity not noted
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/medication
Gould et al. (2005) Focus groups
Constant
comparative
method
N = 4
All male
Ethnicity not noted
Experience of symptoms
Process of acceptance
Personal relationships
Humberstone (2002) Interviews
Grounded theory
N = 13
10 males, 3 females
New Zealand study
Experience of symptoms
Process of acceptance
Personal relationships
Faith/spirituality
Treatment/provider
interactions
Medication
Jarosinski (2006) Interviews
Herdeggaroam
hermeneutic
approach
N = 12
5 males, 7 females
6 African Americans,
6 Caucasians
Experience of symptoms
Process of acceptance
(Continued)
SOCIAL WORK IN MENTAL HEALTH 609
Table 1. (Continued).
Study Design/theory Sample Themes
Liu et al. (2012) Interviews
Comparative
analysis
N = 16
5 males, 11 females
Residents of Shanghai
Experience of symptoms
Personal relationships
Treatment/provider
interactions
McCann and Clark (2004) Interviews
Descriptive
phenomenology
N = 9
5 males, 4 females
Australian study
Experience of symptoms
Personal relationships
Faith/spirituality
Treatment/medication
Ng et al. (2008) Focus group
Grounded theory
N = 8
4 males, 4 females
Chinese
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/provider
interactions
Medication
Phillips (2008) Interviews
Grounded theory
N = 8
6 males, 2 females
4 Caucasians, 1
Jamaican, 3 African
Americans
Process of acceptance
Personal relationships
Faith/spirituality
Treatment/provider
interactions
Medications
Phripp (1995) Interviews
Comparative
analysis
N = 3
1 male, 2 females
Canadian study
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/medication
Powell (1998) Interviews
Interpretive
interactionist
N = 33
18 males, 15 females
Caucasian 51%, African
American 27%,
Hispanic 22%
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/provider
interactions
Medication
Roe et al. (2004) Interviews
Open-coding case
analysis
N = 41
25 males, 18 females
Ethnicity not noted
Experience of symptoms
Process of acceptance
Faith/spirituality
Sanseeha, Chantawan,
Sethabouppha,
Disayavanish, and Turale
(2009)
Interviews,
reflective
journaling,
observation
Heidegger’s
hermeneutic
phenomenology
N = 18 individuals with
schizophrenia
N = 12 family members
Thai study, all were
Buddhists
Experience of symptoms
Process of acceptance
Personal relationships
Faith/spirituality
Treatment/medication
Shepherd, Depp, Harris,
Palinkas, and Jeste (2012)
Interviews
Grounded theory
N = 32
Approx. 41% females
Ethnicity not noted
Process of acceptance
Personal relationships
Sung and Puskar (2006) Interviews
Interpretive
phenomenology
N = 21
13 males, 8 females
Korean
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/medication
Suryani et al. (2013) Interviews
Colaizzi’s (1973)
phenomeno-
logical
approach
N = 13
6 males, 7 females
Indonesian
Experience of symptoms
Process of acceptance
Personal relationships
Treatment/provider
interactions
(Continued)
610 J. WALSH ET AL.
Data extraction
A table was developed to organize the relevant information based on meth-
odologies, participant demographics, and results of each study (see Table 1).
Data extraction was completed by two master’s-level research students and
reviewed for accuracy by the principal investigator.
Data analysis
The studies were analyzed using the methodological framework provided by
Noblit and Hare (1988) for meta-synthesis, which they refer to as meta-
ethnography and is the oldest form of synthesizing qualitative research. The
method involves seeing how studies are related, which involves identifying
common themes across studies and checking or “translating” them against
each other to ultimately create new third-order constructs (Ring, Ritchie,
Mandava, & Jepson, 2011; Thomas & Harden, 2008). Initial themes were
developed by a group of four trained research students and, through an
iterative process with the primary investigator, involved discussion and
review of tables and concepts, which yielded final themes and subthemes.
After applying the selection criteria, a total of 27 studies published between 1992
and 2013 were included in our meta-synthesis, with a total of 408 participants, all
with diagnoses of schizophrenia or schizoaffective disorder. About one third of
the participants were women and two-thirds were men. Caucasians and African
Table 1. (Continued).
Study Design/theory Sample Themes
Tooth et al. (2003) Focus groups
NUDIST program
was used for
analysis
N = 57
42 males, 15 females
Australian study
Process of acceptance
Personal relationships
Faith/spirituality
Treatment/provider
interactions
Medication
Walton (1992, 2000) Interviews
Heideggerian
phenomenology
N = 10
7 males, 3 females
Canadian study
Process of acceptance
Personal relationships
Faith/spirituality
Treatment/provider
interactions
Medication
Yennari (2011) Interviews
Thematic analysis
N = 7
5 males, 2 females
4 African Americans, 3
Caucasians
Experience of symptoms
Process of acceptance
Personal relationships
Faith/spirituality
Treatment/provider
interactions
Medication
SOCIAL WORK IN MENTAL HEALTH 611
Americans were the most represented ethnicities in this sample, although four
studies focused on specific ethnic groups, including Thai, Indonesian, Chinese,
and Korean populations. A wide variation existed in the marital and parenting
status of participants as well as age range, with most falling between 18 and
50 years. Some had college degrees but the majority had obtained a high school
diploma or less. Participants were recruited most often using purposive and
convenience sampling methods and were frequently identified through local
mental health facilities. Most were receiving some kind of mental health services
for their condition, in both inpatient and outpatient settings. Most studies used
individual interviews but a few (3 out of 26) involved focus groups. A majority of
the studies (65%) were conducted outside the United States, with 35% within the
United States. Thirty-one percent were dissertations with the rest of the studies
published in refereed journals. The most commonly utilized theories for the
approach and analysis were interpretive phenomenology and grounded theory.
Five major themes were identified in the results, including: (1) the experi-
ence of symptoms; (2) acceptance processes; (3) personal relationships; (4)
spiritual practices and faith; and (5) treatment experiences.
The experience of symptoms
The experience of symptoms was discussed in 22 of the 27 studies. Themes
that emerged within the rubric of “symptoms” included the experience of
hallucinations, disorientation, and the loss of a sense of self.
Hallucinations
The onset of hallucinations, considered in 14 studies, was described as gradual by
some and immediate by others (Fernandes, 2009). In general the experience of
hallucinations was described as frightening, confusing, and exhausting (Flanagan
et al., 2012; Forchuk, Jewell, Tweedell, & Steinnagel, 2003; Humberstone, 2002;
Jarosinski, 2006; Yennari, 2011). The common experience of hearing voices was
often associated with violence, negativity, and yelling (Forchuk et al., 2003;
Humberstone, 2002; Walton, 2000). Participants in Suryani, Welch, and Cox’s
(2013) study reported feeling the need to comply with orders given by the voices.
One participant noted, “‘The voices seemed to command my brain. . . . In my
mind I felt as if I was under their command” (p. 315). Not uncommonly,
participants experienced the voices as coming from electronic media, such as
television or radio (Baier, 1995). Participants noted the importance of gaining
some level of control or understanding of the voices as an important step in
learning to cope with schizophrenia (Roe, Chopra, & Rudnick, 2004).
Disorientation
Disorientation, described as not knowing what was real or unreal, was noted
in 14 of the studies (e.g., Anderson, 2011; Baier, 1995; Baker, 1996; Phripp,
612 J. WALSH ET AL.
1995; Roe et al., 2004; Sung & Puskar, 2006). Experiences of hallucinations,
both visual and auditory, as well as delusions, left individuals constantly
questioning reality. Multiple studies noted that participants made use of
reality testing (ways to evaluate one’s sensory impressions) to distinguish
symptoms from reality (Anderson, 2011; Roe et al., 2004). A participant in
Anderson’s study (2011), who expressed concern that others could read his
mind, reportedly asked the researcher, his psychiatrist, his counselor, and his
case manager if they could in fact hear his thoughts.
Another aspect of schizophrenia that leads to disorientation stems from
difficulties with concentrating and problems with memory (Evenson, Rhodes,
Feigenbaum, & Solly, 2008; Fernandes, 2009; Forchuk et al., 2003; Liu, Ma, &
Zhao, 2012; Sung & Puskar, 2006). Participants described confusion and
difficulty with remembering and tracking information (Fernandes, 2009).
The combination of unpredictable symptoms, being out of touch with reality,
and difficulty thinking and remembering work together to increase anxiety
(Liu et al., 2012). As one participant noted, “‘For me, the future is unrealistic
and unpredictable. The only thing I can do now is just to take care of my
daily life” (Liu et al., 2012, p. 1711).
Loss of sense of self
Loss of sense of self was discussed in 12 of the 27 studies. In general,
participants found that the symptoms of schizophrenia were so overwhelm-
ing that they experienced a lost “sense of self” (Phripp, 1995, p. 30), defined
as a loss of self-control or personal agency (Baker, 1996; Phripp, 1995), and a
loss of identity (Fernandes, 2009; Humberstone, 2002; Jarosinski, 2006;
Phripp, 1995). Jarosinski described participants as wondering, “Are they
who they are?” (2006, p. ix). Participants in Fernandes’ (2009) study
expressed feeling fragmented rather than whole. Jarosinski’s (2006) partici-
pants reported on the difficulties of finding a sense of self separate from the
hallucinations, which was consistent with Yennari’s (2011) study, finding that
participants struggled to find a sense of identity. A young man from one
study explained it this way:
There was nowhere I could go for—for a sense of privacy because I felt that
everyone was understanding everything that I was thinking and it didn’t matter
where I was. And uh just the sense of being absolutely out of control and having
absolutely no control in your life. No control for your thoughts, no control of your
actions no control of anything. Just being completely manipulated by exterior
forces. No sense of self. (Phripp, 1995, p. 144)
Process of acceptance
The second major theme, the process of acceptance, was covered in 22
studies. This theme considers the progress that individuals make in living
SOCIAL WORK IN MENTAL HEALTH 613
with and managing schizophrenia. In general, participants did not feel that
“recovery” was an appropriate description of their reality (Phripp, 1995;
Tooth, Kalyanasundaram, Glover, & Momenzadah, 2003). Due to the long-
term nature of schizophrenia, recovery was seen as something that was never
complete but an ongoing process better described as coping. As one partici-
pant noted: “It’s like a brand new car and a repaired car that was crashed, the
prices are very different. The chassis was all bent and you straightened it up,
but it is still different” (Ng et al., 2008, p. 125).
The subthemes considered in this section include feelings of shame and loss,
regaining a sense of self, acceptance (as a continuum), and reengagement.
Shame and loss
The subtheme of shame and loss was noted in 13 studies. As symptoms
appeared and individuals first became aware of their diagnosis, their feelings
of shame and loss could be overwhelming. Many study participants reported
feeling like failures (Baker, 1996; Evenson et al., 2008; Sung & Puskar, 2006),
with a sense of shame at being diagnosed with schizophrenia and not being
able to maintain control of their lives (Evenson et al., 2008; Fernandes, 2009;
Sanseeha, Chantawan, Sethabouppha, Disayavanish, & Turale, 2009; Suryani
et al., 2013). Feelings of shame were frequently connected with internalized
stigma (Flanagan et al., 2012) and negative self-thoughts (Forchuk et al.,
2003). Participants described feelings of low self-confidence and poor self-
image (Liu et al., 2012; McCann & Clark, 2004).
These negative feelings were associated with a sense of loss. Participants
expressed that they had lost the chance to have a normal life (Baker, 1996;
Gould, DeSouza, & Rebeiro-Gruhl, 2005), lost relationships (Baker, 1996),
and lost tangible resources, such as jobs and homes (Humberstone, 2002).
One participant stated this simply as, “‘I remember when I was normal’”
(Gould et al., 2005, p. 469), which, in turn, led to feelings of isolation,
hopelessness, and depression (Fernandes, 2009; Forchuk et al., 2003; Liu
et al., 2012; Ng et al., 2008; Sung & Puskar, 2006). For some, this led to
thoughts of suicide, “‘I feel like a suicide. I feel like taking a knife and putting
it right through my chest’” (Baker, 1996, p. 27). As the symptoms they
experienced were unpredictable and difficult to understand, participants
were also filled with worry, anxiety, and fear for the future (Baker, 1996;
Evenson et al., 2008; Fernandes, 2009). Confusing, overwhelming, and erratic
symptoms left the individuals in these studies feeling shame and loss.
Regaining a sense of self
This subtheme was discussed in 13 studies. Participants reported regaining a sense
of self as they began to feel some level of control over their symptoms (Eklund,
Hermansson, & Håkansson, 2012; Phripp, 1995; Roe et al., 2004). As one person
described, “‘I feel like a human being again. I’ve got my emotions back. I’ve got my
614 J. WALSH ET AL.
long-term memory. I’ve got my short-term memory. I’m just coping and doing
fine’” (Forchuk et al., 2003, p. 147). This control enabled them to feel safer and to
move forward in other areas such as reengagement (Eklund et al., 2012).
Participants noted that gaining this control was hard work and required determi-
nation (Fernandes, 2009; Tooth et al., 2003). The new sense of identity that formed
tended to include the diagnosis of schizophrenia, which was incorporated and
accepted as one part of the self (Baier, 1995; Phripp, 1995; Sung & Puskar, 2006).
Some participants felt pride in their new sense of self and considered themselves to
be survivors. One participant stated, “‘You might notice that I’m very individual. I
know that. I, myself, it’s up to me, this person behind the face here. I know it’s a bit
fleshy, a bit funny, but that person that I am behind this face is responsible for all
kinds of freedom’” (Humberstone, 2002, p. 370).
Acceptance (as a continuum)
The participants in these studies fell along a continuum of acceptance, that
was particularly considered in nine studies. Some refused to accept their
diagnosis or identify as mentally ill (Liu et al., 2012; Sung & Puskar, 2006).
Others accepted the diagnosis and were able to incorporate it into their
identity without being defined by it (Yennari, 2011).
Acceptance had more meanings beyond acceptance of the diagnosis,
including coming to terms with the long-term nature of the disorder
(Baier, 1995), the many losses inherent in the diagnosis, and acknowledging
the need for support (Gould et al., 2005). Psychosocial support and psychoe-
ducation sometimes helped individuals gain a level of acceptance (Phripp,
1995; Tooth et al., 2003), which generally enabled them to cope better and to
move on with their lives, as this participant described: “But ah, so I think that
I’ve come a long way in dealing with the schizophrenia so that I know it’s not
a healthy thing to have but it’s not life threatening and it’s not um, it doesn’t
have to control your life” (Phripp, 1995, p. 84)
Reengagement
Reengagement was specifically considered in 13 studies. Participants who were
coping well with their schizophrenia showed signs of reengagement, most
commonly involving social interactions (Baier, 1995; Phripp, 1995; Sung &
Puskar, 2006; Tooth et al., 2003) but also in setting goals (Eklund et al., 2012;
Jarosinski, 2006), such as having a job and living independently (Forchuk et al.,
2003; Ng et al., 2008; Phillips, 2008). One participant, a young man, commented,
“‘Yeah, I want to get out of the system. . . . I’d get me a job, my own apartment,
and a car and maybe even get married. . . . I’m gonna walk out that door. I’m
getting discharged soon’” (Phillips, 2008, p. 60).
SOCIAL WORK IN MENTAL HEALTH 615
Personal relationships
The third major theme, personal relationships, dominated the narratives in
23 studies. Participants consistently expressed the belief that their ability to
develop and maintain interpersonal relationships was profoundly affected by
the disorder. Stigma and discrimination from others, as well as the necessity
of support, were also indicated.
Deterioration of existing relationships
Deterioration of relationships was discussed in 10 studies. Individuals
expressed that they had lost relationships, both by being rejected due to
their symptoms and due to their own emotional disengagement and resent-
ment (Baker, 1996; Evenson et al., 2008; McCann & Clark, 2004; Suryani
et al., 2013; Yennari, 2011). The effect of the disorder on one father’s
relationship with his children is apparent in the following quote: “‘Well
because you alienated them from your mind . . . they’re my children but
they’re not my children . . . it’s a horrible feeling’” (Evenson et al., 2008, p.
634). Some expressed anger and resentment towards family members who
they believed had betrayed them by participating in their involuntary hospi-
talizations (Baker, 1996).
When relationships with friends and family members were maintained,
they were often described as being limited or superficial (Baker, 1996;
Forchuk et al., 2003; Humberstone, 2002; Liu et al., 2012; Shepherd et al.,
2012; Sung & Puskar, 2006). Participants often described feelings of lone-
liness and isolation as a result of this deterioration in relationships. One
woman described this as an inherent feature of schizophrenia, noting:
“’That’s the thing about schizophrenia, it leaves you alone emotionally and
alone physically. . . . I got really lonely. People my own age left me alone . . .
the trouble with schizophrenia was loneliness’” (Humberstone, 2002, p. 7).
Difficulty establishing new relationships
Difficulty relating to others, referenced in 13 studies, often prevented indi-
viduals from establishing relationships that mattered to them (Baker, 1996;
Gee, Pearce, & Jackson, 2003; McCann & Clark, 2004; Sung & Puskar, 2006).
Difficulty connecting was related to paranoia, anxiety, fear regarding other
people’s motivations, and fear of being considered abnormal or psychotic
(Baker, 1996; Liu et al., 2012; Suryani et al., 2013; Walton, 1992, 2000). As
one woman noted, “You can’t ever feel comfortable. I’m always nervous and
tense with people” (Baker, 1996, p. 26). As a result, some individuals came to
accept the idea of being alone, or limited their relationships to others with
the diagnosis (Humberstone, 2002; Ng et al., 2008; Phillips, 2008). Some
reported that they were eventually able to establish relationships with others,
but only by utilizing a “false self” and hiding their true feelings and emotions
616 J. WALSH ET AL.
(Fernandes, 2009; Yennari, 2011). As one man explained, “[Regarding rela-
tionships] suppose people go out with you and are willing to be your friends.
You don’t really tell them too much. You’d be afraid of how they might look
at you after you tell them” (Ng et al., 2008, p. 125). Others reported that the
sense of discomfort never truly disappeared, but eased somewhat as they
made progress toward recovery (Forchuk et al., 2003).
Stigma and discrimination
Individuals spoke of facing alienation and stigma from their families, friends, and
their communities in 12 studies, based on both their diagnosis and actual symp-
toms (Gee et al., 2003; Humberstone, 2002; Jarosinki, 2006; Powell, 1998; Tooth
et al., 2003; Yennari, 2011). Many expressed that this stigma led to feelings of
shame, isolation, rejection, and distrust, and was a major contributor to voluntary
isolation (Flanagan et al., 2012; Liu et al., 2012; Sanseeha et al., 2009). When
discussing even brief encounters with the outside world, themes of paranoia often
permeated the narrative: “But I remember I used to walk around, and I’d know
that these people were looking at me. I used to get really paranoid, and they were
all dressed in black, and I thought . . . that’s why I used to freak out so much,
because I used to think someone was after me” (Walton, 2000, p. 3).
Many discussed the ways in which discrimination led to major consequences,
such as difficulty finding housing. As a result, participants often concealed their
diagnosis (McCann & Clark, 2004; Walton, 1992, 2000). While some individuals
expressed a sense of injustice regarding being treated or judged negatively, many
expressed the belief that these experiences were an inevitable part of living with
the diagnosis of schizophrenia (Walton, 1992, 2000).
The importance of social support in coping
The final subtheme under relationships, noted in 16 studies, was the importance
of social support in coping with the illness. Individuals described depending on
others for basic survival, including necessities such as food, clothing, and hous-
ing (Baker, 1996; Walton, 1992, 2000). Positive relationships enabled them to
cope with their illness and make progress in recovery (Baier, 1995; Evenson et al.,
2008; Forchuk et al., 2003; Humberstone, 2002; Liu et al., 2012; Ng et al., 2008;
Phillips, 2008; Sanseeha et al., 2009; Sung & Puskar, 2006; Tooth et al., 2003;
Walton, 1992, 2000). One individual noted, “I believe that friends are very
important. Don’t have to keep talking about your illness. Just hanging out and
interacting with friends is quite good” (Ng et al., 2008, p. 126). Many discussed
the ways in which helping others suffering from schizophrenia was beneficial to
their own recovery (Eklund et al., 2012; McCann & Clark, 2004; Phillips, 2008).
In order to develop these relationships, many sought out support groups so they
could maintain contact with other persons with schizophrenia and maintain
awareness regarding their illness (Phripp, 1995).
SOCIAL WORK IN MENTAL HEALTH 617
Faith/spirituality
Another coping mechanism, in addition to social support, was the use of faith
and spirituality (a theme present in 11 of 27 studies). Faith and spirituality were
frequently listed as factors that helped participants cope with schizophrenia.
Humberstone (2002) reported that participants found hope and meaning in
God, as well as feeling that God was the only thing more powerful than their
psychosis. Liu et al. (2012) noted the use of traditional Chinese spiritual meth-
ods, and Sanseeha et al. (2009) described participants using Buddhist teachings,
mindfulness, meditation, and prayer for coping. Roe et al. (2004) also noted the
use of mindfulness for coping. Faith and spirituality in general were used to
instill hope (Phillips, 2008) and as a means of support (Walton, 2000). One
participant noted, “‘Well, I go to church and pray and all that. It made me more
confident that I’ll go to heaven in a good way . . . it gives me reassurance . . . it
makes me feel sure that I have a spot in heaven’” (Phillips, 2008, p. 49).
Participants found that faith and spirituality were tools they could use to
transcend the daily challenges of coping with schizophrenia.
Treatment
Participant views on treatment, our fourth major theme, were discussed in 19
studies, with two subthemes emerging of contact with the mental health
system and medication.
Interactions with providers
This subtheme was present in 12 studies, falling into two categories: issues of
control and negative contact with staff. Many individuals expressed concern that
their illness had caused them to lose control over both their lives and their
behaviors (Baker, 1996; Forchuk et al., 2003; Suryani et al., 2013). Many who
were interviewed within an inpatient setting had fears related to being controlled
by others, which had been exacerbated by non-voluntary hospitalizations and
being forced to take medications (Baier, 1995; Forchuk et al., 2003;
Humberstone, 2002; Liu et al., 2012; Phillips, 2008; Yennari, 2011). One man
encapsulated this feeling of helplessness regarding treatment options by noting,
“‘I was put on various drugs. I don’t know if I can remember them all. . . . Then I
was told that I wasn’t allowed to leave the hospital unless I agreed to six months
of injections outside the hospital. I was never all right there’” (Baker, 1996, p. 29).
Some reported they were not well informed about their illness by doctors and
staff, and, as a result, felt subject to the will of seemingly arbitrary decisions
related to policies and treatment methods (Ng et al., 2008). Many expressed
frustration at not being consulted regarding treatment decisions (Baker, 1996;
Forchuk et al., 2003; Liu et al., 2012; Phillips, 2008). This lack of knowledge
regarding their illness, combined with a lack of agency and control over
618 J. WALSH ET AL.
decisions related to their health, often resulted in fear, discomfort, and disem-
powerment (Powell, 1998; Walton, 1992, 2000).
The second category under encounters with the mental health system was
negative contact with staff. Many individuals expressed the belief that provi-
ders did not fully appreciate what it was like to experience a mental illness,
and, consequently, failed to understand the impact of treatment decisions on
clients’ lives (Forchuk et al., 2003; Liu et al., 2012; Walton, 1992, 2000). Some
complained about staff members who were not well informed about schizo-
phrenia and invalidated their psychotic experiences (Forchuk et al., 2003;
Powell, 1998; Yennari, 2011). Others complained that staff members treated
them like children (Forchuk et al., 2003), which, at times, resulted in a desire
to fight the system. As one woman noted, “She [nurse] never really lets go,
you know, she sort of always treats you like a patient or something like that
and you just, you want to rebel, or that’s how I felt” (Walton, 2000, p. 80).
Many respondents believed that staff did not always know what was best for
them, and some expressed doubt that providers even had their best interest
in mind (Baker, 1996; Fernandes, 2009; Liu et al., 2012; Ng et al., 2008; Tooth
et al., 2003; Walton, 1992, 2000). As a result, some avoided communication
with staff, “I keep my mouth shut. . . . I want to keep it a short stay” (Forchuk
et al., 2003, p. 148). Even when some trust was developed, many emphasized
that their relationships with staff continued to be largely superficial, “I know
what the doctors are thinking about. They just take me as a patient. I mean,
they just want to treat me like a client” (Liu et al., 2012, p. 1712).
Medications
The sub-theme of medication was present in 17 studies and divided into two
categories of acceptance of medications and adverse effects. While many were
resistant to medications at first, a large number of respondents acknowledged
their necessity (Humberstone, 2002; Liu et al., 2012; Sanseeha et al., 2009;
Sung & Puskar, 2006; Walton, 1992, 2000). Some spoke of the beneficial
aspects of medications in managing their symptoms, and even seemed to
accept the idea of medication as a long-term solution (Evenson et al., 2008;
Phillips, 2008). One man stated, “‘I’m hoping the medication keeps working
for the rest of my life’” (Forchuk et al., 2003, p. 146). Even for those who
were unhappy with their medications, many expressed a willingness and
desire to try new medications in hopes they would find something that
would work (Forchuk et al., 2003). However, even when medications were
accepted, many individuals expressed the belief that they would not be
completely “recovered” from their illness until they were able to be free of
them (Liu et al., 2012; Ng et al., 2008).
The second category under medications involved side effects. Individuals
described a variety of concerning side effects including lack of energy, weight
gain, concentration and memory problems, excessive sleeping, and impaired
SOCIAL WORK IN MENTAL HEALTH 619
ability to show emotions (Baier, 1995; Evenson et al., 2008; Fernandes, 2009;
Forchuk et al., 2003; Gee et al., 2003; McCann & Clark, 2004; Phripp, 1995; Sung
& Puskar, 2006; Tooth et al., 2003). The effect on memory was often particularly
troubling, as one man noted: “. . . when I have those slips of memory, which are
part of my illness, something major will get lost ” (Evenson et al., 2008, p. 635).
Concern about over-medication was a frequent point of focus, as individuals
were fearful that taking too many medications would negatively impact their
ability to function normally (Forchuk et al., 2003). Opinions on the effectiveness
of medications varied, as some described positive effects (symptom reduction),
some described negative effects (anxiety, restlessness, etc.), and some noted no
change (Forchuk et al., 2003). One man reported that when his side effects were
at their worst, they were “sometimes worse than the actual illness” (Yennari,
2011, p. 102). When this was the case, side effects often resulted in noncom-
pliance (Sung & Puskar, 2006; Yennari, 2011).
There were some limitations associated with this study. There were the usual
problems inherent in meta-synthesis, such as reliance on secondary data and
combining data from different methodologies, phenomenologies, and quality.
Specific to these studies, many participants were interviewed in an inpatient
setting and might differ in important ways from individuals seeking services
from outpatient settings; therefore, perspectives shared in this meta-synthesis
might not generalize to all people with schizophrenia. Still, this meta-synth-
esis provides a rich, detailed portrait of individuals with schizophrenia and
avoids reducing those persons to mere symptomology.
The onset of the disorder brings great loss that extends from one’s own
identity to an individual’s grasp of reality. Because the experience of schizo-
phrenia happens internally there is much misunderstanding of the disorder.
Individuals can have difficulty conveying what they are experiencing, which
is problematic for relationships, in general, but is especially evident in
interactions with health care providers where individuals with schizophrenia
consistently feel disempowered and misunderstood. While nursing and hos-
pital staff are equipped to provide appropriate medical interventions, pro-
blems related to issues of trust and control suggest that poor therapeutic
relationships can have a negative impact on recovery. Hewitt and Coffey
(2005) conducted a meta-analysis of studies on the significance of the
therapeutic relationship with persons who have schizophrenia and concluded
that those who experience an empathic, positive, facilitative relationship have
better outcomes. Professional development programs that aim to increase
awareness of the relationship issues facing this population could help to
combat their perceived stigma and prejudice.
620 J. WALSH ET AL.
Probably the largest loss that individuals with schizophrenia face, and the
one most mentioned within the studies of this qualitative meta-synthesis, is
that of social relationships. Relationships that were strong prior to the onset
of this disorder are challenged by the strange and often frightening symp-
toms experienced. The symptoms and diagnosis lead to stigma and discri-
mination. These feelings are internalized by those who are diagnosed which
leads to a vicious cycle of self-isolation. As these individuals attempt to repair
existing relationships and develop new relationships, they feel the need to
hide some or all of the truth concerning their symptoms/diagnosis, afraid of
how others will view and react to them. The effects of stigma were borne out
in a 27-nation quantitative study (Thornicroft, Brohan, Rose, Sartorius, &
Leese, 2009). Negative discrimination was experienced by 47% of study
participants in making or keeping friends, by 43% from family members,
by 29% in finding a job, by 29% in keeping a job, and by 27% when pursuing
intimate relationships. Almost three-quarters (72%) of respondents felt the
need to conceal their diagnosis.
The importance of social relationships and the need for social support
cannot be overemphasized. Strong, supportive relationships help individuals
struggling with schizophrenia to cope and heal and even to meet basic
necessities such as finding a job and housing. Participants in the meta-
synthesis spoke about the need for social support, even though they tended
to withdraw from others. Practitoners should understand that a moderate
amount of interaction with significant others is optimal (Harley, Boardman,
& Craig, 2012). They respond favorably to attitudes of acceptance, reasonable
expectations, opportunities to develop social and vocational skills, and a
relatively small number, but broad range, of social supports. These may
include family members, friends, neighbors, work peers, school peers, infor-
mal community relations, and perhaps members of shared religious groups
and organizations (Gunnmo & Bergman, 2011).
The process of acceptance of the disorder should be a topic explored with
people with schizophrenia to give them hope. They begin to accept their
diagnosis, the long-term nature of the disorder, and their continued need for
support. Many of the individuals in these studies turned to faith and spiri-
tuality as a way to transcend their struggle with the disorder. As individuals
form a new identity that includes schizophrenia as only one part of them-
selves rather than as what defines them, they are able to move forward with
their lives. They begin to set goals and make plans for the future. This type of
healing requires a level of control over their symptoms, a thorough under-
standing of their disorder, almost always the continued use of medications,
and a strong and supportive social network.
Psychotropic medication is, of course, a primary intervention modality for
persons with schizophrenia, and there is approximately a 66% chance that a
person will respond positively to an antipsychotic medication (Stahl, 2013). A
SOCIAL WORK IN MENTAL HEALTH 621
systematic review of 65 controlled trials has affirmed that all of the anti-
psychotic drugs are effective in controlling the resurgence of symptoms in
persons with schizophrenia, even though they tend to produce adverse effects
of movement disorders, sedation, and weight gain (Leucht et al., 2012).
Participants in the study worried about side effects and the number of
medications they were on. Medications tend to demonstrate variable adverse
effects with regard to extrapyramidal symptoms, anticholinergic effects,
weight gain, insomnia, headache, and increased heart rate (Komossa et al.,
2010a, 2010b, 2011; Lobos et al., 2010). The findings of this meta-synthesis
support the idea that many consumers have serious reservations about taking
medications due to these adverse effects and should be encouraged to be
open about their experiences so that an appropriate regimen of medications
can be determined.
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- Abstract
Method
Inclusion criteria and search
Data extraction
Data analysis
Results
The experience of symptoms
Hallucinations
Disorientation
Loss of sense of self
Process of acceptance
Shame and loss
Regaining a sense of self
Acceptance (as a continuum)
Reengagement
Personal relationships
Deterioration of existing relationships
Difficulty establishing new relationships
Stigma and discrimination
The importance of social support in coping
Faith/spirituality
Treatment
Interactions with providers
Medications
Discussion
References
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Schizophrenia Over Time: Experiences Living With the Illness
Experiences of schizophrenia are not homogeneous; there is wide variety in onset, course of illness, and combinations of symptoms. Social workers need to be able to understand the different manifestations and pathways of the illness to plan interventions. Social work services play a key role in stabilizing crises, supporting family coping, and influencing overall quality of life and outcomes of individuals with schizophrenia. In this Assignment, you practice applying this necessary individualization.
To prepare: In the Learning Resources, focus on the associated features, development, and course of the illnesses in the schizophrenia spectrum. Also focus on descriptions of the disorder and the way it develops for different individuals.
Choose two articles from the list in the Learning Resources that apply to treatment support and interventions for the schizophrenia spectrum and other psychotic disorders chapter in the DSM 5. Choose either Saks or McGough to focus on for this assignment.
Submit a 4-page paper, supported by at least 4 scholarly resources (not including DSM-5), in which you address the following:
· Describe Saks’s or McGough’s experiences with schizophrenia. Identify onset, associated features (specifically referencing the positive and negative symptoms), development, and course.
· Explain how you would use the Clinician Rated Dimensions of Psychosis Symptom Severity measure and the WHODAS to help confirm your diagnosis.
· Explain how you would plan treatment and individualize it for Saks or McGough. Support your response with references to scholarly resources. In your explanation, consider the following questions:
· What are the long-term challenges for someone living with the illness?
· What social, family, vocational, and medical supports are needed for long-term stabilization?
· Briefly explain how race/ethnicity, gender, sexual orientation, socioeconomic status, religion, or other identity characteristics may influence an individual’s experience with schizophrenia