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J Affect Disord. Author manuscript; available in PMC 2019 Jan
1.
Published in final edited form as:
J Affect Disord. 2018 Jan 1; 225: 395–398.
Published online 2017 Aug 15. doi: 10.1016/j.jad.2017.08.023
PMCID: PMC5626643
NIHMSID: NIHMS902372
PMID: 28850853
Quantitative genetic analysis of anxiety trait in bipolar disorder
J Contreras,1 E Hare,3 G Chavarría,2 and H Raventós1,2
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Abstract
Background
Bipolar disorder type I (BPI) affects approximately 1% of the
world population. Although genetic influences on bipolar
disorder are well established, identification of genes that
predispose to the illness has been difficult. Most genetic studies
are based on categorical diagnosis. One strategy to overcome
this obstacle is the use of quantitative endophenotypes, as has
been done for other medical disorders.
Methods
We studied 619 individuals, 568 participants from 61 extended
families and 51 unrelated healthy controls. The sample was 55%
female and had a mean age of 43.25 (SD 13.90; range 18–78).
Heritability and genetic correlation of the trait scale from the

Anxiety State and Trait Inventory (STAI) was computed by
using the general linear model (SOLAR package software).
Results
we observed that anxiety trait meets the following criteria for
an endophenotype of bipolar disorder type I (BPI): 1)
association with BPI (individuals with BPI showed the highest
trait score (F=15.20 [5,24], p=0.009), 2) state-independence
confirmed after conducting a test-retest in 321 subjects, 3) co-
segregation within families 4) heritability of 0.70 (SE: 0.060),
p=2.33×10−14 and 5) genetic correlation with BPI was 0.20,
(SE=0.17, p=3.12×10−5).
Limitations
Confounding factors such as comorbid disorders and
pharmacological treatment could affect the clinical relationship
between BPI and anxiety trait. Further research is needed to
evaluate if anxiety traits are specially related to BPI in
comparison with other traits such as anger, attention or response
inhibition deficit, pathological impulsivity or low self-
directedness.
Conclusions
Anxiety trait is a heritable phenotype that follows a normal
distribution when measured not only in subjects with BPI but
also in unrelated healthy controls. It could be used as an
endophenotype in BPI for the identification of genomic regions
with susceptibility genes for this disorder.
Keywords: Bipolar disorder, Endophenotype, Genetics,
Heritability, Anxiety, Central Valley of Costa Rica
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Introduction
Estimates of the prevalence of bipolar I disorder have ranged
from 0.8% to 1.6% of the general population (Berns and
Nemeroff, 2003). Although the genetic participation is well
established, the identification of genes has remained elusive.
Imprecision of the phenotype might explain the failure of
genetic research to identify genes that contribute to
susceptibility of BPI. Psychiatric disorders lack objective

clinical and biological markers, and there are substantial
disagreements on specific criteria to define diagnostic
categories (Freedman et al., 2013). The need for a new approach
to psychiatric genetics has led to the increasing popularity of
endophenotypes (internal phenotypes that lie intermediate
between the gene and the disease itself) (Gottesman and
Shields, 1973). It is assumed that genes involved in
endophenotypic variation are likely to represent more
elementary phenomena than those involved in complex
psychiatric diagnostic entities. It is also used interchangeably
with the term ‘intermediate trait,’ describing a heritable
quantitative phenotype believed to be closer in the chain of
causality to the genes underlying the disease (Bearden and
Freimer, 2006).
Many patients with BPI show anxiety symptoms that can be
very disabling. Anxiety symptoms are caused by an interaction
of biopsychosocial factors, including genetic vulnerability,
stress, and trauma, which produce clinically significant
syndromes. High comorbidity rates for anxiety have been
documented (Shim et al., 2016). However, subclinical levels of
anxiety (defined as anxiety trait) have also been associated with
BPI (Mantere et al., 2008). These individuals have poor
outcomes with longer, more frequent, and more difficult to treat
mood episodes, are less responsive to lithium therapy, have
earlier onset of symptoms and have greater functional
impairment (McElroy et al., 2001).
Many candidate endophenotypes for BPI (e.g. neurocognitive
functions, behavioral traits, sleep abnormalities) have been
proposed (Gottesman and Gould, 2003; Hasler et al., 2006). As
reported by Glahn et al., 2014, the number of genetic research
using endophenotype approach has rapidly increased during the
last decade. To our knowledge, none of these studies has
identified a gene with a significant major effect on any
psychiatric disorder. To date, few studies have assessed anxiety
as a quantitative phenotype for bipolar disorder? (Wozniak et
al., 2002).

Our hypothesis is that subclinical anxiety as a heritable trait
genetically correlates with BPI. To determine whether
quantitative anxiety symptomatology is a candidate
endophenotype for BPI, we tested heritability of the trait
(measurement of the general level of anxiety experienced over
the lifetime) from the STAI in a sample of extended pedigrees
from the Central Valley of Costa Rica (CVCR) with BPI
disorder, and the genetic correlation between anxiety and BPI.
We followed the same methodology of our pilot study
(Contreras et al., 2010).
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Methods
Participants
Subjects were originally recruited for the study Anxiety traits in
Bipolar I Disorder in the Costa Rican population (NIMH
1R01TW008290-01A1). This study was reviewed and approved
by the Institutional Review Board of the University of Costa
Rica following the international guidelines for genetic research
with human samples. The research project was explained to each
participant before obtaining written consent.
The total study sample was 619 individuals from the Central
Valley of Costa Rica (CVCR). The sample was comprised of 61
extended families (568 subjects, average family size 31
members, range: 4–41) and 51 unrelated healthy controls. Each
family had at least one member diagnosed with BPI. The sample
was 55% female and had a mean age of 43.25 (SD 13.90; range
18–78).
Diagnostic assessment
The subjects were diagnosed based on the diagnostic criteria of
DSM-IV through a best estimation process (Leckman et al.,
1982), utilizing clinical information obtained from the
Diagnostic Interview for Genetic Studies (Nurnberger et al.,
1994), a Family Interview for Genetic Studies (Maxwell, 1992)
and psychiatric records. Final diagnoses were determined
through a consensus process where two independent
psychiatrists reviewed all available information. The Lifetime

Dimensions of Psychosis Scale (LDPS) was used to capture
affective and psychotic symptoms over the lifetime in addition
to the consensus diagnoses (Levinson et al., 2002). LDPS was
utilized as a proxy for bipolarity using the item that provide a
quantitative measurement of lifetime mania.
Assessment of the anxiety trait
We measured subclinical anxiety in each subject regardless of
the categorical diagnosis using the STAI. The STAI is a self-
rated instrument that contains two subscales to measure anxiety.
Each subscale has 20 items (4 response choices per item, higher
scores indicate higher anxiety) (Spielberger et al., 1983). One
scale measures state anxiety (i.e. the extent to which
respondents experience anxiety symptoms at the time of
measurement) (Vigneau and Cormier, 2008). The second scale
measures trait anxiety (i.e. the extent to which respondents
generally experience of anxiety symptoms as a behavioral trait).
This instrument has been validated in Spanish (Rodrigo and
Lusiardo, 1988).
The instrument was applied within the same month period after
the initial psychiatric evaluation in 390 subjects, while 229
individuals were assessed with the STAI at a different time
(later than a month after psychiatric interview) due to
availability of the participants. We were also able to reassess
321 subjects after at least one year of the first evaluation of
anxiety. The goal of this second evaluation was to test
independency of the trait at a different moment of life.
Statistical analysis
We used a general linear model (GLM) to test endophenotype
criteria (e.g. heritability, genetic correlation). Heritability and
genetic correlation was assessed with variance component
methods implemented in the SOLAR package software. We
created an index representing mania based on the quantitative
symptoms score from the item M-1 (duration × severity) of the
LDPS as described before. We included in each model the
covariates age, sex, the square of age, and interactions between
age and sex, to allow for different age effects in males and

females and non-linear change with age. Bivariate analyses
provide genetic and environmental correlations as a means of
examining how BPI and anxiety varies together. Such analysis
allowed us to ask whether anxiety score correlated with mania
in subjects with BPI.
To test association of anxiety trait with BPI, we examined
multiple dependent, independent and covariate variables (e.g.
age, sex). We tested the anxiety scores of individuals with BPI
and their relatives to determine whether their scores are
different compared to controls. The differences between groups
would suggest an underlying genetic correlation between
anxiety and BPI. This hypothesis was tested through GLM
methods, modeling anxiety as function of genetic proximity to
an affected individual (BPI > relatives with other psychiatric
illness - different than BPI- > healthy relatives > healthy
unrelated controls). All calculations of clinical and
demographic variables were adjusted for age and gender by
using the Statistical Package for the Social Sciences (SPSS)
Software v.20.
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Results
Sample characteristics
The primary DSMIV psychiatric diagnosis of the 568 subjects
from the extended pedigrees were: BPI 151 (26%), major
depressive disorder 59 (10%), specific phobia 10 (1%), panic
disorder 11 (1%) and no axis I disorder 100 (18%). Out of the
61 families, 90% had one or more relatives with BPI, 77% had
more than two members with BPI and 26%, four or more
affected members. Out of the 618 participants, 340 (55%) were
female. The mean age at interview was 43.25 (SD 13.90; range
18–78). The average dimensional index of lifetime mania (M-1
severity × duration of the LDPS) was 2.61. The average anxiety
trait score was 28.15 (SD = 7.1) out of a maximum of 60.
Detailed clinical and demographic characteristics of the sample
are described in Contreras et al., 2014.
Heritability analysis

Since we observed in our pilot study that only anxiety trait is
independent of clinical status in subjects with BPI, we restricted
all the following analyses to anxiety trait without considering
anxiety state. The heritability is 0.70 (SE: 0.060),
p=2.33×10−14 and the genetic correlation between anxiety and
BPI is 0.20, (SE=0.17, p=3.12×10−05, p: correlation is different
from zero = 0.02 and p: correlation is different from one =
1.10×10−06).
As seen in Figure 1, subjects with BPI showed significantly
higher anxiety trait scores than their healthy relatives and
healthy controls (F=15.20 [5,24], p=0.009), (BPI patients>
healthy relatives>unrelated healthy controls). Anxiety trait
correlated with lifetime mania (LDPS M-1 duration x severity)
r=0.30 (p<0.0001) after controlling for sex and age.
Figure 1
Trait score by group
Of the 618 individuals, 390 (90%) were evaluated at the same
time (within a month period after psychiatric evaluation), 62
(10%) met criteria for a current depressive syndrome (five or
more depressive symptoms within the last two weeks of
psychiatric assessment) and 18 (3%) for a current manic
syndrome (elated mood + three or more manic symptoms or
irritability + four or more manic symptoms within the last week
of psychiatric evaluation). We found no significant difference in
the trait scores regarding current mood status (currently
depressed or currently manic), (F = 0.432, df = 1, p = 0.211)
and (F=8.31, df=1, p=0.822) respectively.
To assess independency of anxiety trait from affective status of
the subject with BPI (depressive or manic episode), we
conducted a second evaluation of anxiety. We could contact and
reevaluate 321 subjects after at least one year of the first
evaluation of anxiety. We did not find significant difference in
the score among BPI mood status (F=2.23, df=1, p=0.112).
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Discussion
Studies aimed to understand the genetic architecture of
psychiatric disorders have been of limited success when using
the categorical diagnostic classification. Many researchers are
focusing their research on endophenotypes, as defined
by Gottesman and Gould, 2003. Endophenotypes, such as the
quantitative anxiety score, could point the underlying
genetically influenced biological processes in BPI and facilitate
the identification of susceptibility genes. With the current
categorical diagnostic system, anxiety symptoms are often
under-diagnosed.
As in our previous study (Contreras et al., 2010), subjects with
BPI showed the highest scores, followed by their relatives with
other psychiatric disorders, healthy relatives and the healthy
unrelated controls. These results are also supported by the
research from Vázquez et al., (2008) who found that healthy
relatives of BPI exhibit higher scores on the anxious
temperament subscale of the TEMPS-A than controls. In a study
by Evans et al. (2005), healthy relatives of BPI and healthy
controls also showed differences on the hyperthymic scale and
on the first extracted factor, anxious reactive of the TEMPS-A
and TCI-125. All the above evidence is consistent with
temperament and personality anxiety related traits as being part
of the pathophysiology of BPI. The trait of the STAI represents
another approximation to anxiety-related behavior.
One of our goals was to replicate our pilot work conducted in
the population of the CVCR. In the first study, we assessed 300
subjects from 30 extended families. We observed that anxiety
trait met criteria for an endophenotype in BPI. In that study, we
did not conduct test-retest of the STAI, so we could not
conclude if the euthymic, manic or depressed state of the BPI
patients influenced the score. In the current work, with a larger
sample and a second evaluation in a subgroup of families, we
could confirm independency of the anxiety score to the mood
status after one year of the first assessment of anxiety.
We observed a stair-step distribution of the scores in the family

members based on their genetic proximity to individuals with
BPI. The trait showed normal distribution across all the study
sample that included BPI and healthy subjects (healthy relatives
and healthy unrelated matched controls). The genetic
correlation was significant between trait scores and quantitative
lifetime mania whereas no correlation was observed between
anxiety trait scores and lifetime depression. BPI is defined as
manic episodes with or without depressive episodes but
depressive episodes can also be part of a unipolar depression.
The observed correlation between anxiety trait with mania, but
not with depression, supports our initial hypothesis of anxiety
trait being an endophenotype for BPI. Since we did not conduct
a categorical assessment for anxiety disorders, we are not able
to compare trait score among anxiety diagnoses. This finding
reflects what is frequently seen in clinical settings, where
patients with BPI often complain of unspecified anxiety
symptoms that do not meet full criteria for a full-blown anxiety
disorder. Likewise, many healthy relatives of patients with BPI
complain of anxiety symptoms, sometimes perceived as
personality anxiety related traits.
Heritability was statistically significant in this specific set of
data, which suggests that part of the variation of the trait is
influenced by genetic factors. The genetic correlation between
BPI and anxiety was significantly different from zero between
these scores, suggesting that both traits share genetic factors
(overlapping genetic influence). Since confounding factors such
as substance abuse, medical illness and medication history were
not assessed in our study, these conclusions should be taken as
preliminary.
In summary, anxiety trait meets the criteria, for being an
endophenotype of BPI as outlined by Gottesman and Gould
(2003). The trait is associated with BPI, is state independent
(Reichenberg and Harvey, 2007), is heritable and co-segregates
with BPI within families. The current report is a replication of
the initial findings with a larger sample of extended and
multigenerational families with one or more BPI from the

CVCR. We confirmed each of the criteria for an endophenotype
before running the heritability analysis. We assessed subclinical
anxiety in healthy relatives with high genetic risk for BPI and
healthy unrelated controls. The diagnosis of each subject was
obtained through the best-estimate procedure, considered the
gold standard in psychiatric genetic research, and fully tested
by our research group (Contreras et al., 2009). All participants
were from the Central Valley of Costa Rica.
Quantitative anxiety measures as an endophenotype may
facilitate the identification of genes which predispose
individuals to develop BPI. Further research to identify the
genetic structure of this endophenotype will aid researchers to
understand the pathophysiology underlying bipolar spectrum
disorders and improve diagnosis and treatment of BPI in a more
reliable and biologically valid manner than our current
classification allows. The next steps of our study will be the
identification of quantitative trait loci (QTLs), that may harbor
candidate genes for the risk for BPI. Some lines of research
could be oriented to study anxiety-like behaviors in animal
models as done by some researchers including Slattery and
Neumann, (2009). It is likely that some innate fear responses
play a role in the evolution of humans’ mood.
Highlights
In summary, anxiety trait meets the criteria, for being an
endophenotype of BPI as outlined by Gottesman and Gould
(2003). The trait is associated with BPI, is state independent
(Reichenberg and Harvey, 2007), is heritable and co-segregates
with BPI within families. The current report is a replication of
the initial findings with a larger sample of extended and
multigenerational families with one or more BPI from the
CVCR. We confirmed each of the criteria for an endophenotype
before running the heritability analysis. We assessed subclinical
anxiety in healthy relatives with high genetic risk for BPI and
healthy unrelated controls. The diagnosis of each subject was
obtained through the best-estimate procedure, considered the

gold standard in psychiatric genetic research, and fully tested
by our research group (Contreras et al., 2009). All participants
were from the Central Valley of Costa Rica.
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Acknowledgments
Role of the Funding Source
This work was funded by the NIMH Genetics Initiative to the
Research Project: Anxiety trait in Bipolar Disorder type I in the
Costa Rican population (NIMH 1R01TW008290-01A1, PI:
Javier Contreras Rojas). This grant provided financial support
for the recruitment, clinical assessment of the subjects, genetic
and statistical analysis.
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Footnotes
Conflicts of interest of all authors
none
Disclosure
Al authors of this manuscript have no conflict of interest
including any financial, personal or other relationships with
other people or organizations within three (3) years of
beginning the work submitted that could inappropriately
influence, or be perceived to influence this work.
Contributors
Dr. Javier Contreras (first author) conducted the recruitment
and clinical assessment of participants of the study. Dr.
Contreras wrote the first draft of the manuscript. Dr. Elizabeth
Hare (second author) was in charge of the statistical analysis
together with Dr. Contreras. Dr. Gabriela Chavarría (third
author) conducted part of the genetic analysis and she wrote
part of the discussion together with the other authors. Dr.
Henriette Raventos (fourth author) is the senior researcher and
she was a key person en every step of the research. Dr.
Raventos supervised the overall study methodology, write and
edit the manuscript with the other authors. All authors have
approved the final manuscript.
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32
Family Practice, 2019, Vol. 36, No. 1, 32–37
doi:10.1093/fampra/cmy019
Advance Access publication 5 April 2018
Qualitative Research
Bipolar disorder in primary care: a qualitative
study of clinician and patient experiences with
diagnosis and treatment
Joseph M Cerimelea,*, John C Fortneya,b, Jeffrey M Pynec,d
and
Geoffrey M Currand,e
aDepartment of Psychiatry and Behavioral Sciences, University
of Washington, Seattle, WA, USA, bDepartment of
Veterans Affairs HSR&D, Center of Innovation for Veteran-
Centered and Value-Driven Care, VA Puget Sound Health

Care System, Seattle, WA, USA, cDepartment of Psychiatry,
University of Arkansas for Medical Sciences, Little Rock,
AR, USA, dDepartment of Veterans Affairs, Center for Mental
Health Care and Outcomes Research, Central Arkansas
Veterans Health Care System, North Little Rock, AR, USA and
eDepartment of Pharmacy Practice, University of
Arkansas for Medical Sciences, Little Rock, AR, USA.
*Correspondence to Joseph M Cerimele, Division of Population
Health, Department of Psychiatry and Behavioral Sciences,
University of Washington School of Medicine, 1959 NE Pacific
Street, Box 356560, Seattle, WA 98195-6560, USA; E-mail:
[email protected]
Abstract
Objective. To understand primary care patients’ and clinicians’
experiences with diagnosis and
treatment of patients with bipolar disorder in primary care.
Methods. We conducted a qualitative study using thematic
content analysis of individual
interviews with nine primary care clinicians and six patients
from Federally Qualified Health
Centers to understand their experiences with the diagnosis and
treatment of bipolar disorder.
Results. Themes of bipolar disorder detection, referral to
specialty mental health care and
medication treatment emerged from individual interviews with
primary care patients and
clinicians. Clinicians and patients faced challenges deciding to
continue with care in primary care
that is easier to access, but less intensive, than specialty care
that can be harder to access but at
times of higher quality.
Conclusions. Potential next steps in research include identifying
ways to support primary care
clinicians in detection of patients with bipolar disorder, and

strategies to support treatment of
patients in primary care with easier access to specialty care
including consultation in primary care
or co-management with specialty care.
Key words: Bipolar disorder, collaborative care, depression,
primary care, rural health, safety net.
Introduction
Bipolar disorder I and II occurs in up to 4% of primary care
attendees,
though the prevalence is elevated in safety net settings or in
patients
already presenting with a psychiatric complaint (1,2).
Additionally,
bipolar disorder symptoms can exist on a spectrum with
individuals
experiencing varying degrees of symptoms (3), and bipolar
spectrum
features such as increased motor activity, hypersomnia,
hyperphagia
or irritability have been reported in clinical samples of
individuals
diagnosed with major depression presenting for treatment in pri-
mary or specialty care settings (4).
Many individuals diagnosed with bipolar disorder or with bipo-
lar spectrum symptoms experience chronic depressive symptoms
which impair functioning and reduce quality of life (5–7), in
add-
ition to less frequent manic and hypomanic episodes
characteristic of
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bipolar I and II disorder, respectively. Existing treatments for
bipolar
disorder effectively treat depressive (8) and manic (9) episodes,
pre-
vent mood episode recurrence (10,11) and improve overall
function-
ing and quality of life (12).
Many individuals with bipolar disorder do not receive effective
treatments, particularly early in the illness course where many
indi-
viduals experience a 6- to 8-year gap between symptom onset
and
diagnosis (13,14). Undetected bipolar disorder is associated
with
functional impairment, reduced quality of life and premature
mor-
tality from injuries and chronic medical illness (15–17),
highlighting
need for accurate diagnosis and high quality of care for
individuals

with bipolar disorder.
Earlier diagnosis and treatment of bipolar disorder could occur
for some in primary care. Patients with unrecognized bipolar
disor-
der may initially present to primary care for care of other
medical
problems, care of misdiagnosed major depression, or with
symptoms
related to anxiety or substance use, which are common in
patients
with bipolar disorder (1,16–18). Additionally, patients
previously
diagnosed with bipolar disorder at a mental health clinic or
hospi-
tal may return to primary care, often unaccompanied by
extensive
documentation or a comprehensive treatment plan, making
accurate
recognition of bipolar disorder important even in those already
diag-
nosed (19).
In the USA, as many patients with bipolar disorder report
receiv-
ing treatment in primary care settings as in specialty mental
health
care settings (18,20). This is even more pronounced among
those
with subthreshold bipolar disorder, where the majority of those
seek-
ing treatment in the preceding year presented to primary care
settings
(18,20). Individuals receiving treatment in primary care can
present
with high symptom burden (21) but are less likely to receive

high
quality of care such as treatment with a mood-stabilizing
medication
(16). Although primary care physicians have reported
perceiving
patients with bipolar disorder as complex (22,23), a more in-
depth
understanding of clinicians’ experiences has been unexplored.
Using individual interviews, we sought to understand primary
care patients’ and clinicians’ experiences with diagnosis and
treat-
ment of bipolar disorder in primary care. Understanding the
barriers
patients and clinicians face in primary care could lead to
strategies to
improve recognition and quality of care for individuals with
bipolar
disorder in primary care.
Methods
We conducted a qualitative study of individual interviews with
pri-
mary care clinicians and patients from Federally Qualified
Health
Centers (FQHCs) to understand their experiences with diagnosis
and treatment of bipolar disorder. FQHCs are safety net primary
care clinics. This report follows Standards for Reporting
Qualitative
Research (24). Our study was exploratory and used an inductive
approach using thematic content analysis to identify themes in
the
data (25,26). The Institutional Review Boards at the University
of
Arkansas for Medical Sciences (UAMS) approved data

collection
and the University of Washington approved data analysis
procedures
for this project.
Researcher characteristics
Investigators include two physicians (authors 1 and 3) who
work in
primary care and two social scientists (authors 2 and 4).
Interviews
were conducted by two male investigators, authors 2 and
3. Authors
2 and 3 conducted rapid data analysis and presented results to
FQHC
stakeholders (patients and clinicians) tasked with conducting
quality
improvement activities to improve access to evidence-based
treat-
ments for patients diagnosed with bipolar disorder. This
provided
an opportunity for theme checking of the rapid analysis.
Authors
2 and 4 conceived the study and recruited clinics. The
investigators
were trained in qualitative methods through coursework and
past
experience conducting qualitative research. Participants knew
the
investigators were researching individuals’ experiences with
treating
or receiving treatment for bipolar disorder in primary care
settings.
Context and sampling strategy
This study occurred as part of an Academic Community

Implementation Partnership (ACIP) between UAMS and rural
FQHCs in Arkansas during 2010–2017. The ACIP focused on
iden-
tification, adaptation, adoption and evaluation of evidence-
based
practices for patients with bipolar disorder. The medical
director,
nursing director and two patients from six primary care clinics
par-
ticipating in ACIP were invited to participate in interviews in
2012.
We sought medical and nursing directors to gain representative
over-
views of current clinical practice and barriers and facilitators in
each
site. Invited patients were identified by clinicians based on
having
been diagnosed with a complex mood disorder either bipolar
dis-
order or treatment-resistant depression (due to clinician
diagnostic
uncertainty). Some patients did not attend scheduled interviews
for
this study. Interviews from five sites were completely recorded
and
transcribed for inclusion (one site’s interview was not
recorded).
Data collection
Interview guides were developed by investigators to initially
ask
open-ended questions about participants’ experiences, followed
by
questions on specific topics such as how psychiatrists could
help
primary care clinicians. Interviews occurred on-site in the

FQHCs,
included one participant (clinician or patient) and two
investigators
(one interviewing and one taking field notes) and lasted
between
30 and 60 minutes. Interviews were audio-recorded and later
tran-
scribed. Transcripts were entered into Atlas.ti for data
organization
and sorting. Data collection intent was to understand patient and
clinician perspectives for subsequent intervention development.
Data saturation was not specifically sought due to interviewing
pre-
selected types and numbers of stakeholders. The purpose was to
use
their feedback in an intervention development process occurring
rapidly. Recruiting and interviewing additional patients and
clini-
cians to achieve saturation for both groups was beyond the
scope
and feasibility of this study.
Data analysis
The two interviewers conducted iterative analyses after each
inter-
view using field note review and open-coding to resolve
differing
impressions through discussion, to modify interview guides
used in
subsequent interviews and to improve trustworthiness (27). Data
analysis was conducted by author 1 after all interviews were
com-
pleted and transcribed data were available. Patient and clinician
data
analysis occurred concurrently because of investigators’ interest
in

understanding patient and clinician experiences with diagnosis
and
treatment. Open-coding using thematic content analysis was
used,
and codes were sorted into categories. Meetings between author
1
and author 2 occurred iteratively to discuss codes and categories
and
to review emerging themes (26). Results were presented to a
multi-
disciplinary group of primary care and psychiatry clinician-
research-
ers for feedback, and suggestions from the group were
incorporated
to enhance trustworthiness.
Bipolar disorder in primary care 33
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Results
Interviews with 15 individuals were included. Interviewees
included

nine clinicians (five physicians and four registered nurses) and
six
patients with clinician diagnosis of bipolar disorder or
treatment-
resistant depression. Three themes emerged from the data:
detection
of patients with bipolar disorder, referral to specialty care and
medi-
cation treatment. Data analysis uncovered barriers and
facilitators
of each theme within the data. Quotes supporting each theme
are
below, with additional supporting quotes in Table 1. Quotes are
annotated with C or P if stated by clinician or patient, with
associ-
ated ID number.
Theme 1: detection of patients with bipolar disorder
Barriers
Primary care clinicians described problems detecting patients
with
bipolar disorder including patient-related barriers such as
patients
presenting intermittently for urgent problems or presenting
regularly
for treatment but for other chronic illnesses taking up visit time,
cli-
nician-related barriers such as lack of understanding of bipolar
dis-
order course, and systems-related barriers such as uncertainty
about
how to best support workflow (e.g. screening) to detect patients
with
bipolar disorder.

Some of the walk-ins are just here for acute type treatments. So
you asked me if they go unrecognized, in that case yeah they
may
go unrecognized. (C1)
Patients reported barriers including stigma and not feeling
listened
to by primary care clinicians:
My doctor didn’t believe in diagnosing me with my bipolar
disor-
der. He thought it was an over diagnosed disease. (P4)
Facilitators
When primary care clinicians suspected bipolar disorder in a
patient, clinicians saw value in team-based assessment,
including
use of screening measures administered by clinic staff,
information
reported from patient family members, and obtaining past
treatment
records. Additionally, one clinician described that tracking
patients
over time helped to encourage patients to follow-up and helped
facilitate detection and diagnosis due to the opportunity for
multiple
observations of symptoms:
Table 1. Additional quotes supporting themes
Participant Quote
Theme 1: Detection of
patients with bipolar
disorder

Clinician ‘Okay so the current PHQ-9 we have, so is that just
for depression? So it’s not for bipolar?’ (C6)
‘I guess of course I go in and think somebody may or may not
have a bipolar disorder you know I could come
out and say do the screen on this patient.’ (C1)
‘I think the [clinician] is going to trust what the screener is
doing.’ (C3)
‘They are coming in to get their… hypertensive meds, or
diabetes meds, and just kind of go with the flow.’
(C4)
Patient ‘I don’t really think that they believe me. That’s bad.
You know, when you don’t think nobody believes you.’
(P6)
‘[My sister and I] live together, she knows [about my bipolar
disorder] and it’s really hard for me to talk to
someone face to face so my sister was my voice.’ (P5)
Theme 2: Referral to
treatment in specialty
care
Clinician [Problems are] the stigma associated with it… [and]
they’re very shorthanded staff-wise so it’s still a long wait
time [for an appointment]… so in the meanwhile they’re still
back with me or us [in primary care]. (C7)
‘In a setting I guess in [specialty care] they’re probably going
to allow much more time like 30 or 40 minutes
for one patient and you can give it time.’ (C1)
‘That’s why they have specialists. I’m not a specialist, I’m an
internist and you’re past mark one of comfort.’
(C7)
‘[Communication is] not good at all. It’s difficult to get their
notes, to see exactly what’s going on. Often times
the patient will just present with this slip saying “I need these
labs. This patient is on this medication.” And

that’s it.’ (C5)
‘Almost half the battle is getting them to see someone.’ (C5)
Patient ‘They had me see [the psychiatrist] and he’s the one
that, when I saw him, he’s the one that come up with [the
diagnosis of bipolar disorder].’ (P6)
Theme 3: Medication
treatment
Clinician ‘I see a lot of depression and some of it may be
missing bipolar, but I’m comfortable with treating depression.’
(C7)
‘We try to provide [medication] treatment if we can’t get them
in.’ (C5)
‘It makes me feel like I have a little bit more evidence if
someone else is saying, ‘Hey, I recommend either this
one or this one,’ because that just helps me out.’ (C3)
‘[To feel comfortable about diagnosis] to even have somebody
on the computer screen right there, it would
just take a couple… patients, and then our providers would be
more comfortable doing things on their own.’
(C3)
Patient ‘[My treatment] has never been adjusted. It’s always
been the same. I think that once they put you on a medi-
cation they just kind of say “Okay, she’s on that. All of her
problems are taken care of.” It’s never gone back to
be checked on. It’s just left alone.’ (P4)
‘Let me tell you I would have been hospitalized if it wasn’t for
[the care manager in primary care], I was just at
the lowest I ever felt in my life and I couldn’t control it.’ (P5)
‘My blood pressure was high, so [my primary care physician]
would give me medicine for my blood pressure,
so I would have to come every three months for her to evaluate
me and that’s when I would say something

[about bipolar disorder treatment].’ (P6)
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One of the things we’re moving toward, is to track all patients.
(C1)
Patients also reported value in tracking their course over time
and
having family members talk with clinicians. One patient
described
how tracking response to initial treatment with an
antidepressant
medication and discussing symptoms with a clinic care manager
helped the patient understand how symptoms were due to
bipolar
disorder rather than major depression:
[The care manager] helped me to understand that the citalopram
or whatever it is, that that wasn’t helping me because I needed
something for my bipolar…. (P5)

Theme 2: referral to treatment in specialty care
Barriers
Primary care clinicians described their rationale on deciding
when
to refer a patient with bipolar disorder from primary care to spe-
cialty mental health care such as when a patient’s care needs
exceed
the clinician’s comfort; however, clinicians also reported
reasons for
needing to treat patients in primary care such as poor communi-
cation about patients between specialty mental health and
primary
care, challenges to referral including stigma, and needing to
convince
some patients to agree to referral:
I don’t really hear from [specialty mental health about patients].
Maybe one time a year. (C8)
Patients completing referral from primary care to specialty
mental
health may face barriers to accessing ongoing treatment in
specialty
care. For example, one clinician described, compared with
specialty
care, appointments in primary care were more easily accessible.
Another clinician described seeing patients in between specialty
care
appointments and making treatment adjustments, suggesting a
need
to co-manage patients due to difficulty accessing specialty care:
It’s so hard for them to get back in to [the mental health clinic
to] make adjustments on their doses that they just give up and
don’t take [the medications] or they come back over here to me
[in primary care]. [Patients tell me] ‘I just tried to call and

I can’t
get in with anybody.’ (C7)
Patients identified other barriers to referral including lack of
insur-
ance coverage and associated financial cost of specialty care,
and
needing to travel to a second clinic location:
Well, here lately I [don’t have] insurance or nothing so
I [haven’t]
been able to see them. I don’t have the money to pay them. (P1)
Facilitators
Clinicians reported successfully referring patients to specialty
care
involved following up with the patient about the specialty
referral.
Additionally, clinicians (aware of the potential for patients to
receive
high quality of care in specialty care) maintained motivation to
refer
patients and described strategies to promote patients attending
spe-
cialty appointments:
We call them to see if the patients kept their appointment. (C2)
Patients reported few facilitators to referral but did reflect on
past
specialty care experiences:
[The psychiatrist] diagnosed me and officially put me on mood
stabilizers, things like that for bipolar. (P4)
I was having a lot of problems at work and the bosses helped
me get into a mental health facility. And I was going to them

for
years. (P2)
Theme 3: medication treatment
Barriers
Primary care clinicians reported concerns about initiating
treatment
when there was uncertainty in diagnosis, and how clinicians are
usu-
ally more experienced with and prepared for diagnosing and
treating
patients with major depressive disorder rather than with bipolar
dis-
order. When clinicians did describe prescribing medications to
treat
patients with bipolar disorder, some described using low or
cautious
dosing, or having experience and knowledge about using one
mood-
stabilizing medication only:
[I prescribe] a little bit of [quetiapine], not a lot. That’s about
it.
(C7)
Patients reported concerns about quality of care in primary care
including having concerns about staying on ineffective
medication
treatment and wishing care could be more intensive in primary
care
or that clinicians could spend more time listening. Patients also
described wanting access to psychosocial care such as
psychotherapy
or support groups and recognized that these services were
usually
not provided in primary care.

[The doctors] just seem to rush in to get you in and get you out
so
they can get the next one in. (P5)
They could improve their, like… they don’t have anything
around
here. Really they don’t have anything around here to setup for
no
kind of therapy or nothing like that. (P3)
Facilitators
Primary care clinicians reported risks associated with delaying
treat-
ment and at times wanted to start medication treatment for
patients
with bipolar disorder even after referring to specialty mental
health
care, or when referrals were not completed.
I think maybe if they were started on treatment here instead of
waiting maybe a month before they get another appointment and
they’re in a crisis. (C2)
We’re recognizing bipolar [disorder] a lot more, and actually
doing something first line without waiting for the referral pro-
cess. (C3)
Clinicians also described what they thought could help them
care
for patients with bipolar disorder in the future using local
practice-
based solutions. For example, clinicians described their ideas on
how psychiatrists could support reaching an accurate diagnosis
or
treatment of patients with bipolar disorder in primary care such
as
through telepsychiatry consultation:

A lot of times we just need some advice or some guidance on
what
to prescribe or what to add on. (C5)
Patients reported facilitators to medication treatment including
eas-
ier access to appointments in primary compared with specialty
care,
opportunity for a consistent and longer-term relationship with
pri-
mary care clinicians, and enhanced satisfaction with care in
primary
care when psychosocial needs could be met such as with the
presence
of a care manager.
Conclusions
We found that the themes of bipolar disorder detection, referral
to
specialty mental health care and medication treatment in
primary
care emerged from individual interviews with primary care
patients
and clinicians. The themes suggest primary care clinicians and
patients face challenges detecting and then deciding whether to
pro-
vide care that is easier to access, but less intensive, in primary
care,
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or referring the patient for specialty care that can be more
intensive
treatment but harder to access.
Primary care clinician uncertainty about diagnosis and when
to proceed with treatment, combined with variability in access
to
specialist psychiatric consultations, can complicate clinical
decision
making. When faced with lack of local specialty care, clinicians
in
our study described expanding their scope to include evaluating
for
and treating patients with bipolar disorder. This finding is
consistent
with research on primary care clinicians’ experiences evaluating
and
treating patients with other chronic but somewhat uncommon
ill-
nesses such as heart failure (28).
Patients and clinicians in our study described being able to
access and prescribe medication treatment, but not other types
of
treatment, in primary care. Treatment guidelines recommend

offer-
ing individuals with bipolar depression psychosocial
interventions
such as psychotherapy (29). A prior study found that primary
care patients with serious mental illness including bipolar
disorder
reported expecting ‘good enough’ primary care including
treatment
with psychotropic medication and a consistent relationship with
a
primary care clinician who could access psychiatrists for advice
as
needed (30). Addressing gaps in psychosocial care of patients
with
bipolar disorder may be feasible in primary care settings and
has
been accomplished for treating individuals with other symptom
domains. For example, primary care patients with depression
and
pain have reported concerns about inconsistent
recommendations
on psychosocial treatments from primary care clinicians (31);
how-
ever, when provided, interventions involving medication and
psycho-
social treatments can reduce symptoms in both domains (32).
Despite ease of appointment access and opportunity for longer-
term relationship, patients in our study reported some concern
about
not feeling listened to by clinicians, while clinicians viewed
time dur-
ing appointments with patients with bipolar disorder as being
taken
up by care of co-occurring chronic conditions. Optimizing care
of

patients with bipolar disorder in primary care would likely
require
evaluating appointment agenda and perhaps systematic
assessment
of bipolar disorder symptoms.
Consulting psychiatrists have reported believing it is feasible
to adequately treat some patients with bipolar disorder in
primary
care (3,33). Psychiatry consultation may also be needed to
provide
effective care for patients with bipolar disorder in primary care,
as
others have found in studies on primary care clinicians’
experiences
with initiating treatment for patients with posttraumatic stress
dis-
order (34). Participants in our study suggested the use of
telehealth
technology as one strategy to more easily access psychiatric
experts,
possibly due to the ACIP focusing on implementing telehealth
solu-
tions. Recent data on telehealth care in the USA revealed 30%
of
all telehealth claims in Medicaid were visits with a diagnosis
code
of bipolar disorder (35). These factors suggest that the focus of
this
ACIP, and stated preference of participants in our study, could
reflect
a trend of use of telehealth to care for some patients with
bipolar
disorder (36).
Limitations include the study being conducted with a conveni-

ence sample of clinicians and patients, all clinical sites being
rural
sites in one state, use of patient- or chart-reported diagnoses for
included patients, and data collection occurred in 2012 preced-
ing recent research on bipolar disorder in primary care.
Clinicians
included in our study were experienced clinicians with current
lead-
ership positions giving participants the opportunity to provide
data
on their personal and clinic-wide experiences. Lack of access to
spe-
cialty care is common in rural sites and may have influenced the
results of our study; though, epidemiologic data (18) from the
USA
have shown that in general a significant proportion of
individuals
with bipolar disorder do not access specialty mental health care.
Our study and related literature revealed challenges associated
with accurately detecting individuals with bipolar spectrum
disor-
ders and initiating appropriate treatments, and the tension
between
treating in primary care versus referring to specialty care.
Potential
next steps in research include identifying ways to aid primary
care
clinicians in detection of patients with bipolar spectrum
disorders,
and strategies for treatment of patients in primary care with
access
to consultation and co-management with specialty care.
Acknowledgements

The authors would like to thank the patients and staff of
ARcare, Boston
Mountain Rural Health Center, East Arkansas Family Health
Center, Jefferson
Comprehensive Care System, Lee County Cooperative Clinic
and Mainline
Health Systems. We acknowledge the important contributions of
Michael
McCarther, Michael Justice, Sip Mouden, Mary Leath, Letha
Todd and Joan
Diehl. The authors thank Dr Clarence Spigner in the University
of Washington
School of Public Health for his advice on qualitative data
analysis.
Declaration
Funding: This publication was supported by a grant from the
National Institutes of Mental Health R24 MH085104, and the
National Center for Advancing Translational Sciences of the
National Institutes of Health under Award Number
UL1TR000423.
Conflict of interest: The authors report no conflict of interests.
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and-citations#reference-examples-nice
RESEARCH ARTICLE Open Access
Patients’ perspectives of the feasibility,
acceptability and impact of a group-based
psychoeducation programme for bipolar
disorder: a qualitative analysis
Ria Poole1*, Daniel Smith3 and Sharon Simpson2
Abstract
Background: Although there is some quantitative evidence to
suggest the benefits of group psychoeducation for
people with bipolar disorder, patients’ perspectives and
experiences of group psychoeducation require in-depth
exploration to enable us to better understand the feasibility,
acceptability and impact of these interventions, the

potential facilitators and barriers to engagement, and how to
improve these interventions in the future.
Methods: In-depth, semi-structured interviews were conducted
with 13 participants of a psychoeducation programme
for bipolar disorder in Wales, following their involvement in
the programme. The data were recorded and transcribed
verbatim and analysed using thematic analysis.
Results: Findings demonstrate that group psychoeducation may
impact on participants’ perceived social support,
knowledge and acceptance of bipolar disorder, personal
insights, attitude towards medication and access to services.
Key recommendations for improvement included: allowing more
time for group discussions, offering group sessions
to family members and avoiding use of hospital or university
venues for the groups.
Conclusions: This is the first qualitative study of patients’
perspectives of a UK-based group psychoeducation
programme for people with bipolar disorder, and findings
present an in-depth account of how group
psychoeducation may be experienced by patients. The
recommendations for improving the content and
delivery of group psychoeducation for bipolar disorder may
enhance engagement and widen access to such
programmes. Future research into psychoeducation for bipolar
disorder should explore how to target and
engage people of diverse ethnic backgrounds and those in lower
socioeconomic groups who are less likely
to access healthcare services.
Keywords: Bipolar disorder, Psychoeducation, Group,
Qualitative
Background

Group-based psychoeducation for patients with bipolar
disorder has been found to reduce recurrences of bipolar
episodes [1, 2], time spent in a bipolar episode [1, 3, 4]
and the frequency and duration of subsequent hospitali-
sations [1]. Severity of depression and mania may be re-
duced after one year following group psychoeducation
for bipolar disorder [5], and after 2 years the severity
and duration of manic symptoms may be reduced [6].
Studies have also indicated that social functioning and
mental quality of life may also be improved by group
psychoeducation [3, 4].
Qualitative studies examining one-to-one and care-
giver psychoeducation for bipolar disorder provide a
good starting point for understanding patients’ and care-
givers’ experiences of psychoeducation and their motiv-
ation to undertake it, which may be beneficial for
clinicians and for the development of psychoeducation
interventions in the future [7–9]. However, there is a
paucity of evidence for the benefits and drawbacks of
* Correspondence: [email protected]
1DECIPHer, School of Social Sciences, Cardiff University, 1-3
Museum Place,
Cardiff CF10 3BD, UK
Full list of author information is available at the end of the
article
© 2015 Poole et al. This is an Open Access article distributed
under the terms of the Creative Commons Attribution License
(http://creativecommons.org/licenses/by/4.0), which permits
unrestricted use, distribution, and reproduction in any medium,
provided the original work is properly credited. The Creative
Commons Public Domain Dedication waiver (http://
creativecommons.org/publicdomain/zero/1.0/) applies to the

data made available in this article, unless otherwise stated.
Poole et al. BMC Psychiatry (2015) 15:184
DOI 10.1186/s12888-015-0556-0
http://crossmark.crossref.org/dialog/?doi=10.1186/s12888-015-
0556-0&domain=pdf
mailto:[email protected]
http://creativecommons.org/licenses/by/4.0
http://creativecommons.org/publicdomain/zero/1.0/
http://creativecommons.org/publicdomain/zero/1.0/
group psychoeducation from patients’ and facilitators’
perspectives [10]. In-depth qualitative studies are vital to
contribute to our understanding of how interventions
are experienced by patients, relatives and those involved
in their delivery. Such studies would enable exploration
of the value of group psychoeducation from different
perspectives and the barriers to benefitting from or
undertaking the interventions, as well as delivering them
in practice. It would also facilitate assessment of feasibil-
ity, acceptability and reach, and the personal impact of
psychoeducation from patients’ perspectives, which is
important for understanding the mechanisms of psy-
choeducation for bipolar disorder and also enhancing
and promoting these interventions.
The Bipolar Education Programme Cymru, referred to
as BEP-Cymru, was a manualised, group-based psychoe-
ducation programme for people with bipolar disorder,
delivered throughout Wales. BEP-Cymru was funded by
the Big Lottery’s Mental Health Matters programme and
was provided by the BEP-Cymru project team based at
Cardiff University, who developed the intervention. The
programme comprised ten group sessions delivered on a

weekly basis to participants by two group facilitators,
who have a background in psychiatry, mental health
nursing or another related professional background and
were trained according to the manual. There were no
more than 15 participants per group. Sessions were two
hours in duration and were structured in the following
format: presentation, group exercise, refreshment break,
facilitator led group discussion, and summary by facilita-
tors. Its content was based on the psychoeducation
programme by Colom and Vieta [11] and the Beating
Bipolar internet-based psychoeducation programme [12].
Group sessions included the following topics: definition
of bipolar disorder, causes of bipolar disorder, medication,
psychological approaches, lifestyle, monitoring mood and
identifying triggers, early warning signatures, and friends
and families. We wished to explore the feasibility, accept-
ability and impact of this group-based psychoeducation
programme for bipolar disorder from the perspectives of
group participants. This research article describes the in-
depth enquiry into patients’ perspectives of group psychoe-
ducation for bipolar disorder.
Methods
Design and recruitment
This research was approved by the South East Wales
Research Ethics Committee in May 2011.
Participants of the BEP-Cymru programme were in-
vited to take part in the study via letter along with the
patient information sheet and consent form. If prospect-
ive participants were interested in taking part in the
study they had at least a week to contact the research
team by telephone to ask any questions about the study
or the nature of the data to be collected. RP obtained in-
formed consent from those who wished to take part in

the study at the introductory BEP-Cymru group session.
It was made clear to patients that if they choose not to
participate in the research study it would not affect their
participation in the programme or their medical care in
any way.
We obtained attendance records for participants of
BEP-Cymru from the group facilitators to enable us to
invite those who had attended the majority of the group
sessions and also those who had dropped out, in order
to understand their reasons for opting out of the
programme. We purposively sampled participants on the
basis of their level of engagement with the programme
(identified by attendance records), their location (either
North or South Wales, to minimise clustering effects)
and the length of their diagnosis of bipolar disorder – to
include participants recently diagnosed as well as those
with a longer-standing diagnosis. RP conducted these in-
terviews over the telephone at 3 months following their
participation in the programme and audio recorded and
transcribed the interviews verbatim. Interviews with pa-
tient participants were conducted until thematic satur-
ation was achieved.
Qualitative interviews with participants explored their
experiences of the programme, particularly in relation to
its feasibility, acceptability and impact, and also complex
processes and issues, such as motivations, decisions and
outcomes, in depth and detail. It was anticipated that
these personal accounts would provide insights into the
acceptability and usefulness of the various aspects of
programme, contextual factors, how the programme is
received and its meaning for participants. Furthermore,
the interviews aimed to capture any problems encoun-
tered with the implementation of the programme, the
potential impact of the programme on participants and

recommendations for improvement.
Theoretical framework and analysis
The interviews were conducted flexibly and responsively
to enable participants’ narratives to develop. Consistent
with phenomenological theory, the primary focus of
these interviews was on the nature and meaning of par-
ticipants’ individual lived experiences, which were ex-
plored in relation to their personal contexts [13]. To
explore the therapeutic mechanisms of BEP-Cymru we
sought to examine the impact of the programme from
participants’ perspectives and whether their experiences
of the programme changed their perception of them-
selves and the disorder. Thematic analysis [14] therefore
incorporated personal contextualisation, such as identity
change and empowerment, amongst other emerging
concepts relating to the feasibility and acceptability of
the programme and its impact. Grounded theory was
Poole et al. BMC Psychiatry (2015) 15:184 Page 2 of 16
not deemed to be an appropriate strategy as it aims to
obtain one core category – the essence of the findings –
which becomes the theory to connect all the data [15];
whereas we wished to explore many aspects of partici-
pants’ experiences with a view to understanding the
feasibility, acceptability and impact of the intervention,
which are more specific and pragmatic concerns better
suited to semi-structured interviews and thematic ana-
lysis. Interpretative Phenomenological Approach (IPA)
was also considered as it is concerned with how people
find meanings in their experiences; however, IPA questions
are open and aim to explore a primary research question,
rather than many, and the IPA sample is intended to be

homogenous. Furthermore, because IPA analyses are very
complex and in-depth, studies commonly become unman-
ageable if more than six participants are studied. We
rejected IPA for this study because we wished to interview
a heterogeneous sample and explore many factors which
may have affected participants’ engagement with the
programme, the acceptability of the programme and its
potential impact. The interviews were therefore analysed
using a thematic approach [16].
The interviews either began with an open-ended question
about what BEP-Cymru was like for the participant or par-
ticipants themselves initiated discussion of their experiences
of BEP-Cymru after introductions. This format was to en-
able participants to feel more freely able to discuss their ex-
periences and to their own agenda, as well as to our
agenda. We felt that this approach empowered participants
to discuss that which they felt most relevant or mattered
most to them at the outset rather than waiting for the next
question to come; however, we ensured that the interviews
covered the feasibility, acceptability of the intervention, as
well as how it may have impacted upon the participants.
RP recorded her impressions of the interviews imme-
diately following each one, and developed these initial
impressions when transcribing and familiarising herself
with the data by mapping potential themes and categor-
ies. The data were inputted into NVivo 8 qualitative
analysis software to code the data within an emerging
thematic framework for themes which were developed
and refined as analysis proceeded. The data were coded
into categories, themes and sub-themes. Data saturation
was deemed as having been reached at the point at
which no new perspectives were being offered.
Results

Sample characteristics
Thirteen BEP-Cymru patient participants were invited to
be interviewed and all took part. Of the 13 participants:
� 10 were female and 3 were male
� 7 attended a group in South Wales and 6 attended a
group in North Wales
� 3 attended 1–2 group sessions; 3 attended 6–7
group sessions; 7 attended 8–10 group sessions
� 6 had been diagnosed for 2 years or less and 7 had
been diagnosed for longer than 2 years
� Mean age 42.7 years (SD: 11.4)
Participants cited their reasons for deciding to par-
ticipate in the group, which included: an interest in
self-management, knowing nothing about bipolar dis-
order, being recently diagnosed with bipolar disorder,
wishing to understand the condition better, seeking
advice on how to live as normally as possible, to con-
firm or deny a diagnosis of bipolar disorder, to meet
others with bipolar disorder, recommendation by their
health care professional, and respecting the research
at Cardiff University.
Feasibility of BEP-Cymru
Mood affecting engagement with the course
Some participants (5/13) reported that their mood dur-
ing the programme affected their ability to engage with
it. Some participants (3/13) who reported feeling low
during the programme felt apathetic, less sociable and
struggled to concentrate. Others (2/13) who reported
feeling high became angry, upset and found it difficult to

sit still and focus. One participant reported that her
mindfulness practice helped her overcome her low
mood, and another participant reported being able to
concentrate better when feeling high.
Timing of sessions
Two participants commented that mornings were diffi-
cult for them if they were feeling low and they would
have preferred to attend afternoon sessions. Participants
felt that evening sessions were preferable for those with
day jobs, but some did not feel encouraged to leave the
house on cold winter evenings.
“[…] it’s dark at half past four and, you know, as I live
alone as well, um the thought of going out and I don’t
drive, can make you feel quite vulnerable, you know,
so I am definitely affected by the weather”.
P2, female, South Wales
Community venues preferred to hospital settings
Many participants (6/13) commented that they did not
wish to attend the group in a hospital or university
venue. It was important to them that the setting was
neutral, sociable and central. Some (4/13) participants
remarked that hospital premises had negative connota-
tions for them and brought back memories of their bad
experiences. Others (2/13) felt that the hospital was too
far out of town to access.
RP: “Have you any comments about the venue?”

P13: “I wouldn’t have it in the hospital.”
RP: “Right”.
P13: “Because of the different experiences that we’ve
had, the bad experiences that most of us have had
with the hospital. I think being attached to the
hospital brings back bad memories for people […]
being made to sleep in a […] blood spattered, food
spattered wall, cell, like a prison cell was not
conducive for improving one’s depression or bipolar
or anything else quite frankly”
All participants who were interviewed in North Wales
highly praised the venues, which were both centrally-
based community galleries. Participants commented that
they were excellent, provided a lovely room and great
refreshments, and were airy and light.
“[…] the organisers made a conscious choice to find a
space that was very airy and light and it was part of
an Oriel and gallery here, in the middle of [names
location], um so these kind of, I felt like they really
made a conscious decision about all these things,
which everybody in the group appreciated it because
bipolar people are very sensitive to their surroundings”
P5, female, NW
Attendance at sessions
Participants provided a variety of reasons regarding why
they missed sessions. Some participants (3/13) who felt
low during the programme missed sessions because they
were disinterested in the topic, felt unsociable, struggled
to get out of bed or leave the house, lacked energy and
felt fatigued. Others (3/13) missed sessions because of

personal crises, hospital appointments or lacking the
transport to attend. One participant reported missing
sessions because the sessions were far from home and
she didn’t feel motivated to make the journey on cold
and dark winter evenings.
Participants gave many reasons for their attrition
from the programme. Two participants in South Wales
dropped out because they felt that the group was poorly
facilitated in some cases. They complained that partici-
pants were sometimes allowed to rant off-topic. They
also felt that the facilitators in some cases were patronis-
ing and lectured them and they felt pressure to contrib-
ute when facilitators asked questions around the room.
Some participants (3/13) did not feel at ease within the
group as a group member, or felt that the course was
going over things they had already learned elsewhere.
Some participants (2/13) dropped out because of their
low mood and lack of energy. Others (2/13) reported
that they could not make that time of day because it
clashed with their work schedule or because they felt
that 10 weeks was too much of a personal commitment.
Acceptability of BEP-Cymru
Content
Participants regarded the quality of the information pre-
sented within the course to be at an expert level, reliable
and informative. They felt that the information was easy
to understand, well-structured and sessions flowed well.
One participant remarked that the letter and supporting
information which he received prior to starting the course
was too formal in tone and he felt it was intimidating. He
also commented that the information given was too vague

and lacked an explanation about the format of the course.
“I wasn’t sure if I was going to go or not you know, and
I think perhaps the literature that arrived beforehand
was a bit too formal (.) the letter that arrived first to
say that you’ve been accepted on the programme (.) So
perhaps it could’ve explained a bit more you know
that there would be other people there, you know with
the same sort of condition”
P6, male, North Wales
Many participants (6/13) commented that they found
the handouts to be concise and useful for remembering
the course material or for catching up if a session had
been missed. Two found the handout on debt and men-
tal health to be particularly useful, and one participant
commented that to receive a personal certificate and
folder at the end of the course gave her a sense of
achievement.
Some participants (5/13) reported that learning how to
keep a mood diary was helpful, as was creating their lists
of triggers and their action plan for becoming unwell.
One participant said that creating his contacts sheet gave
him a greater sense of security because he knew who to
call in a crisis.
Participants enjoyed some of the exercises because
they were fun and lightened the mood of the group. A
couple commented that they particularly appreciated the
visual representations within the exercises and presenta-
tions, particularly if they had literacy problems.
“It was visual and it was mental as well, so it was a
little bit of both, which was helped me because I can’t

um, (.) I can’t write or anything properly, so the visual
things, the visual work as well was better for me (.) the
visuals on the laptop and things, you could see the
life-chart and things on the laptop and then look at it
as a group on a white board”.
P11, female, North Wales
The session on medication was thought to be really help-
ful and the facilitators’ expert knowledge was appreciated.
“[…] the medication session was very important
because too often medication is given, especially by
GPs and it isn’t explained, you know, for the actual
side effects of these drugs and how important it is to
take them regularly”
Four participants said that they particularly valued the
session on mood mapping, learning what was happening
in a manic phase and learning to recognise their per-
sonal triggers for a bipolar episode. They found it helpful
to inform their family members so that they could also
recognise when their mood was becoming high or low.
Others (2/13) appreciated the information within the
session on lifestyle and took recommendations from the
course. One participant also found the exploration of
the link between bipolar disorder and alcohol problems
useful.
One participant found the session on women with

bipolar disorder, family planning and birth to be particu-
larly helpful, and she shared the information with her
friends with bipolar disorder who did not attend the
course.
“[…] in particular I was quite pleased with the session
on women with bipolar and family planning and child
birth and things (.) because I think that gets neglected
quite a lot and that was like the first course I’d been
to that covers that because it’s quite a complicated
topic […] I shared the handouts that I had, um
because I think it isn’t something that gets discussed
that much, so I think that had, that was probably
the biggest impact like for me and people I’m in
contact with”
Some (4/13) acknowledged that doing the life chart ex-
ercise had a psychological and emotional impact for
themselves and others. Remembering upsetting times
and losses as a result of the illness were hard for them
to cope with and they felt depressed afterwards. Despite
this, two participants commented that the constructing
their life chart was helpful in that it confirmed when
their illness began and enabled them to recognise former
periods of mania or depression.
“[…] it just brought up all the sadness really, what I
was dealt, just a bad hand really, in what I was born
into […] I went back the next week and the girl that
was really depressed, I was worried about, she went
back as well, she said she was really down and I said
‘I was that week, but it gives you stuff to think about,

you know and you should use that time to discuss it
with people who are close to you, people who are
helpful and work through it.’ You don’t want to relive
it all the time but it needs to be, if it’s that powerful, it
needs to be faced head on and deal with it and just
disempower it”
Perceptions of the facilitators
Positive comments Participants said the facilitators
created a relaxed environment, involved everyone and
balanced the formal with the informal aspects of the
programme. They appreciated facilitators’ expert know-
ledge and said they answered their questions well.
“I thought it was always good to have a psychiatrist in
the room. Um, I think he researches bipolar so it was
very good to have him there”
Participants said that the facilitators “treated them like
human beings”, were down-to-earth and participants felt
accepted by them. Participants observed that the facilita-
tors were keen to listen to them and learn from them.
They appreciated the personal touch facilitators demon-
strated in that they expressed an interest in them, were
caring and looked after them.
“Accepted, that’s one of the main things, [F5] was very
good to just accept us the way we were and [F6] was
really, really keen, he’s the psychiatrist, he works in
[names town/city] I don’t know if you’ve met him, he’s
recently started doing research as well and they were
very keen to listen to us and learn from what we had

to tell them, so to feel looked after and to feel like you
matter, like you are relevant in this world, like you
are important, that’s the sort of main thing they gave
all of us”
Negative comments Some participants (3/13) criticised
or complained about some of the facilitators because of
their style of facilitation and poor group management
skills. Some facilitators did not stick to time or address
some participants’ offensive remarks.
“I felt they just weren’t very good at managing the
group really […] it got very boring to be honest, so I
was kind of switching off and thinking about other
things, um, there were people I know who, friends of
mine who were going to the group who dropped out,
that’s what they found, um that it was getting to the
stage of being really unbearable and also I think when
some people made remarks that were either a bit
discriminatory or quite biased or even slightly offensive
and they weren’t very good, they didn’t often, um kind
of redress that or balance it out”
Participants felt frustrated when people were allowed
to talk about things that were not relevant to the day’s
topic for too long. They felt that facilitators needed to
summarise people’s points when they went off-topic be-

cause the rest of the group felt that they were not bene-
fitting from the digressions. They also said that the
facilitators did not ensure that everyone was given an
equal opportunity to contribute to discussions and that
some people were allowed to dominate the group.
A couple of participants felt that the facilitators were
being patronising towards them which they found to be
disrespectful and disempowering. They described feeling
talked “at” rather than being talked “with”, and felt that
their style was too didactic, lecturing or like classroom
teaching.
“My overwhelming memories and feelings of this course
was ‘it’s them and us’ […] I didn’t feel very sort of
ownership of ‘I’m finding out information for me to
improve my health or my own management of my
condition’ it felt more like ‘we’re telling you what you
should do and if you don’t do it then you know on
your own head be it’ […] just because we have bipolar
it doesn’t mean we’re stupid or need lecturing at”
Two reported feeling bored by facilitators’ dry and
disengaging style of communication and did not feel
engaged during the PowerPoint presentations. Some
facilitators were also described to put pressure on people
when asking questions around the room and some par-
ticipants felt “put on the spot” or “trapped” with having
to engage with uncomfortable topics. These participants
felt that the facilitators did not appreciate the emotional
impact of the course from participants’ perspectives.
Some participants (3/13) suggested ways in which
group facilitation could be improved. They suggested

that they be given time to be asked how they felt, to en-
able people to talk more and build group rapport and
trust. One participant suggested that a more natural ice-
breaker exercise where participants had more options
regarding their responses, rather than answers to close-
ended questions, would have felt more empowering.
More time in the first sessions was needed for partici-
pants to get to know one another and gain an insight
into why everyone was there. Participants felt this was
important to feel safe, trusting and at ease with the
group to facilitate openness and self-disclosure.
To prevent participants from going off-topic and also
to enable them to discuss unrelated topics at an appro-
priate time, one participant suggested that facilitators
operate a “parking zone” to make a note of topics partic-
ipants wish to discuss in order to address them later.
Two participants said that facilitators could be more
sensitive and flexible to the needs of the group and they
would have appreciated hearing their points of view
more than simply talking from the PowerPoint slides.
They also recommended that the rules of the group
should be negotiated with the group rather than just
stated by the facilitators. They felt that this was import-
ant for the group to take ownership of the rules and per-
sonalise them, and also for developing trust within the
group based on the understanding that others have en-
gaged with the rules and have voiced that they would be
respecting them.
Participants perceptions of the group experience
Positive comments All participants appreciated the op-
portunity to share their experiences with other group
members. They exchanged their experiences of their
lives in general, their bipolar disorder, their health care,

their health care professionals and their hospital treat-
ment. They found this aspect of the course to be thera-
peutic, and learned from others’ insights and ways of
coping.
“It’s very difficult when you have bipolar to notice that
you are going on a manic or on a depressive side, you
don’t notice it yourself and to see other people talking
about it about the behaviour that you have, you know,
you start noticing things then during the day that
you’re doing and you know, you can intervene then”
Many (9/13) commented that they particularly appreci-
ated being in a diverse group of people, some of whom
were from different backgrounds, and reported feeling
less lonely and isolated with the condition through
meeting others with bipolar disorder. For some, the
course provided their first encounter of meeting others
who also had the condition.
“Cos it is such a, it can be a very lonely a very
isolating um condition. […] now I know what it is and
I know other people in the same boat and I know how
people are coping with it and stuff, whereas before I
had no idea at all and I just felt so alone with it all,
so yeah I’ve learnt a lot and it’s been a great help”

Some participants (8/13) reported sharing knowledge
with each other and offering advice. They also said that
other members of the group were sensitive, concerned
and respectful to how they were feeling.
Being a member of the group empowered participants
who felt part of something important. Some (7/13) also
commented that being with others with bipolar disorder
and discussing experiences reduced the stigma they felt
in day-to-day life.
RP: “So, tell me your experiences of the BEP-Cymru
group psychoeducation programme”
P5: “Oh it was really, really good, it was, well the best
thing that’s happened since I’ve been diagnosed with
bipolar, um, yeah it’s just so good to be together with
like-minded people and feel like you’re normal because
the rest of society makes you feel like you’re not nor-
mal, including most of our partners, who think we’re
crazy […] we all felt stronger because we were in a
group”
“[…] before I thought I was a bit mad in the past but
now because I knew what it was and people had gone
through the same experiences I realised that no, I
wasn’t mad it was just part of the illness.”
Participants commented on the importance of humour
within the groups. Humour was used as a way of coping.
P9: “[…] it was just nice to be in a room full of people

who all had the same thread running through, but
we’re so different, funny and warm and just to be able
to discuss openly how this bloody awful illness had
affected us. It’s priceless […]I’m terrible for making fun
of myself and for making fun of my illness and
psychiatry and the whole because I worked in
psychiatry for a while and then I got ill and left […]
Terrible, my sense of humour is just, lets me down
really.”
RP: “Well does it or is it helpful in some ways?”
P9: “It’s my way of coping and that’s the way I am and
I won’t change”
For some, humour was used to “normalise” bipolar
disorder.
P5: “[…] I think the course really helped them to
accept this is just who I am and we made lots of jokes
about being bipolar and oh yeah all the stupid things
we’ve done and (laughs)”
RP: “And did the jokes help?”
P5: “Yeah, loads, they give just a bit of light to the
because you are treated as a problem like you said as
well, with an illness and you’re not normal, all these
things they are just really silly because we’re just
human beings”
Joking and talking in a light-hearted way was cited as
being important for communicating within the group

and increasing participants’ confidence.
Many (7/13) said that they really looked forward to
the weekly meetings and were disappointed when they
came to an end. They looked forward to seeing others in
the group with whom they had developed camaraderie,
trust and friendship. For some (4/13), attending the
group on a weekly basis provided support when they
were having difficulties and they described looking for-
ward to the meetings as a way of “getting through the
week”. One participant revealed that she missed the se-
curity of the group because it gave her an opportunity to
meet with others with bipolar disorder, without which
she lacked confidence to contact them.
“I wouldn’t know how if I called somebody, I wouldn’t
know how to talk to them, I haven’t got the confidence
to text or to pick up the phone and say, ‘how you are,
how are you or?’ I just keep myself to myself […] we
have exchanged numbers but I haven’t used them and
nobody’s called me either”
For some participants (5/13) the groups enabled them
to compare themselves with others who were “in the
same boat” in having bipolar disorder. They found meet-
ing with others to be helpful for gaining a perspective on
the extent of their illness.
“[..] when you’re in a group like that and you see some

that are better than you, they’re doing much better
than you, they’re in a better place and some are in a
worse place and I don’t know it’s just like a measure
really of how ill you are”
A couple of participants said they were surprised and
interested to hear that others had similar traumatic ex-
periences to them.
Negative comments
It was the first time some participants had met with
others with bipolar disorder, and they found the first
meeting to be intimidating. Others (3/13) were dissatis-
fied by group members who were too dominant within
the meetings and too focussed on their own agendas,
and participants also reported feeling “put on the spot”
with being asked to construct their life chart within the
context of the group.
“I’ve got friends I know who are doing it with their
[Community Psychiatric Nurses’] and stuff, um like
over a period of months because you know it can take
a lot of time to be ready to look at what has happened
throughout your life […] [the facilitators] did put a
lot of pressure on people and then they kind of went
round one by one and were kind of going, ‘oh, show us
your life line and explain it’, and I thought that wasn’t
very helpful because obviously some people were fine
with it but apart from, if you hadn’t wanted to do it
or you wanted to kind of start on your own but you
didn’t really want to share it with the rest of the
group, you didn’t really feel like you had an option.
Um, so I think yeah that kind of being put on the
spot I found quite pressurising.”

One participant reported that she did not feel as
though she connected within the group because it lacked
others of a similar age to her.
Contrast with other self-management courses for bipolar
disorder
Participants who had previously attended other self-
management courses for bipolar disorder compared their
experiences of these courses with their experiences of at-
tending BEP-Cymru. Two felt that the self-management
course which was held over three days and offered by
the Manic Depression Fellowship (MDF) was too in-
tense. They felt that it was too introspective and did not
adequately support vulnerable people who may have be-
come traumatised by a distressing topic. One participant
was particularly angered and upset by her impression
that the MDF course focussed on certain problems and
assumed that everyone within the group had the same
experiences. She felt that they did not allow for diver-
gent experiences or viewpoints within the group. An-
other participant felt that the MDF course had given her
a better opportunity for sharing her personal experiences
and learning from others’ experiences.
Key recommendations for improving the course
Some participants (3/13) commented that they would
have appreciated more information on certain topics
and shared examples for further reading from self-help
books. They felt that the course could have covered
more on legal issues, psychological therapies, such as
mindfulness and Dialectical Behavioural Therapy, and
provided more up-to-date information on smartphone

· Journal List· HHS Author Manuscripts· PMC5626643J Affect.docx

· Journal List· HHS Author Manuscripts· PMC5626643J Affect.docx

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