disorder (BD) is a chronic, recurrent disease which compromises
the functioning and well-being of both patients and their family
members. In addition to the economic burden, relationships with
neighbors, friends, school and work peers are difficult and often
hampered by the stigma and fear created by lack of information,
which is replaced by cultural beliefs and myths surrounding BD,
all of which have a negative impact on acceptance of the disease,
its treatment and psychosocial rehabilitation. Moreover, these same
factors contribute to increased risk of recurrence, both due to
lack of treatment adherence and new crises which can be triggered
by stressful interpersonal factors. Studies are vital, in order
to better understand family life in the presence of BD, and the
impact of psychoeducational strategies on empowering patients, families,
friends and other people surrounding the patient, along with their
effects on patient outcome.
family members and caregivers all suffer in the presence of BD,
yet few studies on the topic can be found in the literature. Loss
of productivity of both patient and family must also be taken into
Recent epidemiological studies have provided scientific data to
broaden the BD concept, and estimated prevalence of the bipolar
spectrum at 8.3%.7
is also known that families of BD patients face a number of difficulties
and challenges in everyday life affecting family, as well as their
relationships with neighbors, friends, school and work peers. These
families also hold their own beliefs and myths surrounding BD, which
interfere with acceptance of the disease, its treatment, as well
as attention and changes in lifestyle in terms of the balance regarding
work, rest and leisure time.2-6,8,9
It becomes evident that psychosocial problems play a role in both
the causes and the consequences of recurrences and rehospitalization
of the patient.2,8-10
first signs of BD are often poorly recognized by physicians, who
are not always qualified to identify the disorder. The patient is
only referred to a psychiatrist when the disorder has worsened and
initial treatment has failed.
few studies have been published on the subjective experience of
the individual diagnosed with BD encompassing the several aspects
which are of significance not only to those experiencing the disease,
but also to members of their families.6,8
A study on age of onset of BD coupled with a review of the literature
over the past decade concluded that BD is on the rise in both adults
and children. This points out to the need for deeper knowledge of
risk factors and prodromic signs so as to facilitate early identification
and secondary prevention of BD.11
view of evidence presented in the literature regarding the disorder-early
diagnosis, pharmacologic treatment, adherence to such treatment,
management of distress and the psychosocial impairment affecting
the patient, his family and society, it becomes clear that BD represents
a major public health issue which calls for further studies.
objective of this study was to understand family life in
the presence of BD.
entity of the project was the Institute of Psychiatry of the Clínicas
Hospital of São Paulo University School of Medicine (HC FMUSP).
This study was conducted in cooperation with the following affiliated
entities: the Brazilian Association of Friends, Relatives and Affective
Disorder Patients (ABRATA) situated in São Paulo city; the
Medicine and Nursing Faculty of São José de Rio Preto
(FAMERP); the Mental Health Service of the National Unified Health
System (SUS); the philanthropic Adolpho Bezerra de Menezes Hospital
of SJRP, situated in the city of São José do Rio Preto
(SJRP), State of Sao Paulo.
coordinating the study provides a help line for professionals to
clarify any doubts, based at the São Paulo main office.
is an ethnographic study investigating a group of BD patients whose
families and friends are attending a Psychoeducational Program.
Participants have similar characteristics, patterns of behavior
and relationships, beliefs and values. The participative observations
and the interviews were carried out at the following places:
São Jose do Rio Preto (SJRP) Faculty of Medicine's amphitheater,
where participants convened on a monthly basis for psychoeducational
meetings under the Bipolar Mania Relapses Prevention Program.
Hospital Adolfo Bezerra de Menezes of São José do
Rio Preto-outpatient clinic and inpatient ward.
The psychoeducational program
provided talks on BD, its etiology, treatment, course of disease,
and social and lifestyle impairment, management of unexpected situations,
and finally, assistance needed to achieve stabilization of the patient.
This information was given by healthcare professionals involved
in the program. The presentations were followed by a session in
which BD patients were invited to talk about their experiences.
Then all participants shared experiences, feelings, own beliefs
and values and those held by society concerning their condition
as well as the coping mechanisms used in different situations.
coffee break was then offered in which participants continued to
discuss and share their ideas and experiences. During the coffee
break participants continued to share their ideas and experiences.
Participants also met occasionally in the outpatient ward or in
the inpatient ward in case of readmission.
observation was carried out in all settings mentioned over 10 months,
conducting formal and informal interviews. Some families also provided
written statements. Contributions and clarifications of data were
also performed using patients'medical records. This enabled triangulation
by using the different data sources from the qualitative data collection.12
Family observation was carried out principally during the psychoeducational
meetings held in the amphitheater, where all potentially relevant
information on the daily life of families of individuals with BD
was taken into account. Home visits to interviews families were
discontinued because they were no longer adding new data to the
study, having reached a point of data saturation.13
aspects proposed in the ethnographic group project design were observed.12,14
All investigators had the opportunity to observe and interact with
the informants on at least two occasions. The criteria used for
the assessment and the qualitative investigation were as follows:
reliability, confirmation, contextualization, recurrent patterns
The "emic" perspective, that is, the language and expressions used
by the participants - was considered, allowing accurate comprehension
and description without disregarding the "etic", that is, the investigators'
perspective. Integration of both is required to enable investigators
to draw their conceptual interpretations.12
current work was conducted according to norms for ethical investigation
specified by the Brazilian National Health Committee.15
All participants signed the Informed Consent for human research.
analysis allowed the categories and cultural theme to be established
for the phenomenon under investigation. These categories are described
Life. Families cited impaired functioning of the patients; the
influence of their psychosocial handicaps and repercussions within
the family domain: a feeling of shame and fear, lack of acceptance
of the disease and its treatment, conflicts between spouses over
different ways of facing the disease, and changes in lifestyle of
all family members.
is very conflicting in that we think differently in terms of our
son (patient) and the treatments. Our life has completely changed.
If we go out, we end up getting worried, as if we had left a baby
behind. If he also goes out.
life full of tension, stress and fatigue. Our everyday lives are
-The grandmother of the
patient is scared of imposing limits. The brothers do not accept
it and say she is mad and needs to be hospitalized. Father tries
to accept it but is unable to.
initially accepted, but after the aggressive phase, I can't tolerate
it any more.
with people outside the family. The few studies in the literature
on functional and psychosocial impairment in extra-family relationships
show that occupational performance is affected, along with the ability
to lead an independent life. Leisure, study and other areas are
could observe and confirm with the informants the difficulty in
establishing and keeping relationships with neighbors, friends,
school and work peers, along with limitations in the social relationships
of the couple.
-He doesn't accept
neighbors, friends and has difficulty relating to peers in the work
place. The damage both for him and for all of those living with
him is enormous.
-She studies outside
home, she has difficulties maintaining social relationships and
taking decisions. Her friends see her as the best ever; she spends
lots of money on them.
-We view ourselves
as a limited couple, socially and in terms of friendships. We feel
a little ashamed with regard to the neighbors when he gets aggressive
and starts swearing. When he's having a crisis he doesn't listen...
routines. Participants describe changes in their routine at
work, during family activities, disturbances in work shifts and
in sleep patterns. Many stated that there were so many changes that
it was hard to report them all and regarded these changes as being
difficult to cope with due to non-acceptance of the disease, both
on the part of the patient as well as their family members. They
likened their life to an ordeal.
I had to change my work shifts and give up one job.
the disorder began manifesting, he started being treated like a
child. Sometimes he requires things appropriate for his age. Now
the medicines have to be kept under lock and key.
daily routine has become an ordeal because it's difficult to relate
to somebody who does not accept his disease.
changes in our everyday lives have been extensive, in all areas.
on the family budget. Family income is reduced due to the fact
that some patients do not work, as reported by four patients. Additional
expenses with medicines, psychotherapy, doctors, etc. also impacted
Moreover, there is also
the excessive spending pattern which BD patients tend to exhibit
during their manic phases.4,6,8,9
does not help towards her domestic bills because if she has an attack
she tends to think she is rich and powerful and spends frivolously.
she takes the medicines she is able to work. If she stops taking
-When she is having a crisis she
spends both what she has and what she doesn't have. The family tries
to control it, but the spending is sometimes excessive.
have increased a lot, for psychotherapy, medicines, remedial classes
and because of compulsions.
Stigma and prejudice.
Living with and overcoming the stigma of a mental disease and
their own prejudices constitute further stressors for the family,
who tends to close up and refrain from talking to others about the
and prejudice appeared in the reports of the families attempting
to describe their experiences with BD, where parents were found
not to accept the disease or the need for hospitalization, unaware
of their own prejudices, or that they were afraid of mental illness.
changes were great, starting with prejudice of the father and brother
-They couldn't accept how
he was, nor could the schools he attended, even though they didn't
know what the diagnosis was. But just because he is different.
was afraid of hearing comments and prejudice in relation to the
treatment. But nowadays, I wouldn't even have any prejudice against
an electric shock.
-They are labeled
mad by society after having been aggressive to everyone.
Living with the
psychoeducation program. Families highlighted the importance
of having the psychoeducation program as a forum to clarify doubts,
exchange beliefs, learn about and share coping mechanisms adopted
by families and patients, in facing the same phenomenon as challenges,
rather than as problems.
psychoeducation programs are appearing ever more frequently in the
literature, showing their beneficial effects not only in treatment
adherence, but also in knowledge gained regarding the different
aspects of the disease. Understanding the severity of the disease
allows the individual to develop strategies for an improved life
greatest impact of the psychoeducation meetings became clear upon
information acquisition and the growing confidence by health professionals,
who have the families as an allied providing support and help in
managing and accepting the disease and its treatment. Open psychoeducational
program has played a relevant role in these aspects because it allows
exchange of knowledge with professionals on how families and patients
can live together with BD, and with their network of friends, as
well as with health professionals in general.2,4,8,10
realized that the psychoeducation doesn't give a recipe for the
cake, but provides the range of ingredients to have a good and delicious
cake. This is what I've tried to do. First I accepted it and then
I got to know myself better.
of psychoeducation is in helping to manage and accept the disease
and the treatment by gaining knowledge and sharing it with the families,
friends who face the same challenges, with the aid of professionals.
Everything has changed for the better.
"From initial distress to coping and achieving a better quality
of life". The distressing course of all those facing BD searching
for the cure is evident. When families realize that the disease
is chronic, serious and lifelong, they continue to seek alternatives
which may improve the quality of their lives. They recognize that
they belong to a group which has similar beliefs, values and myths
regarding the disease, living with the oscillation between hope
and hopelessness, while striving for the same goals. Families are
also aware that the exchange of experience provided by open psychoeducational
sessions helps them to live with BD and understand it better. The
program encourages families to regain their self-esteem, and to
believe in their potential to overcome fears and prejudices, whilst
turning obstacles into challenges.
realization by families that they are facing the same phenomenon,
and experiencing similar difficulties with BD across diverse aspects
of life, both intra and extra-family, allows them to let down their
defense mechanisms and collectively seek the best way forward for
their lives. Families perceive that the Psychoeducational Program
is a rich way to learn about the disease, the signs and symptoms
indicating relapse, among others and find different ways to provide
the assistance required for mood stabilization, when combined with
that psychoeducation helps them not only in treatment adherence,
but also in sharing their distress, fears, and suffering amongst
themselves, as well as with health professionals. It allows them
to visualize a broader horizon and a path for them to follow.
cultural theme has been corroborated by many studies1-4,6,8,10,16,17
showing that the association of psychoeducation intervention with
pharmacotherapy is a valid approach for monitoring treatment and
behavior to prevent relapses, readmissions to hospital, reduce damage
and to have better quality of life, which remains the prime objective
of those living with a life-long disease.
acquisition, along with the relationships built between professionals
and the family, influenced by empathy, trust and mutual respect,
allows this path to be taken with more safety, independence and
autonomy in managing the disease and its consequences.18
who have a member with BD, follow winding and turbulent paths in
their intra and extra-family life. They constantly seek more efficient
ways of coping. In the present study, the families manifested their
beliefs in relation to BD, and regard the open psychoeducational
meetings as an anchor offering them support in relieving distress
and fears both for them and for the community. Consequently, they
begin to better perceive their potential and capacity to resolve
issues concerning their lifestyle, and define a path to independence
and autonomy, in a less harrowing and more humanitarian way.
that the results obtained in the present study, taken together with
those found in the literature overwhelmingly point to the fact that
BD is under-diagnosed, we conclude that there is a need to expand
the provision of open psychoeducational programs for patients, families
and professionals. The creation of ongoing educational programs
to train mental health professionals on BD is also required, with
the aim of enabling them to identify and manage prodromic signs
of relapse of BD. This can pave the way for an initiative in secondary
prevention of the disease and identification of high-risk populations.
A multiprofessional team could establish a collaborative atmosphere
of mutual trust. Psychoeducational programs are low cost, straightforward
to run and cover a large number of individuals involved with BD.
The efficacy of such programs has been proven in numerous studies,
justifying their integration into public policy programs in mental
Investing in adequate prevention
is better than remedying the sequelae resulting from lack of competent
and effective treatment.19
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