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Understanding family life in the presence of bipolar disorder*

Ricardo Alberto Moreno,1 Maguida Costa Stefanelli,2 Maria da Graça Girade Souza,3 Aparecida Rosana de Oliveira,4 Ana Cláudia de Almeida Taveira,5 Valentim Gentil6
1
Profesor Doctor y Coordinador del Grupo de Estudios de Enfermedades Afectivas (GRUDA), Instituto de Psiquiatría, Hospital de Clínicas de la Facultad de Medicina, Universidad de São Paulo, (IPq HC-FMUSP), Brasil. 2Profesora Doctora y Profesora Titular, Escuela de Enfermería de la USP, Brasil. 3Magíster en Enfermería. Facultad de Medicina y Enfermería, São José de Rio Preto, SP, Brasil. 4Enfermera, Hospital Adolpho Bezerra de Menezes, São José do Rio Preto. SP, Brasil. 5Médica Pos-graduanda, Departamento de Psiquiatría FMUSP, colaboradora del Grupo de Estudio de Enfermedades Afectivas (GRUDA), Instituto de Psiquiatría, Hospital de Clínicas de la Facultad de Medicina, Universidad de São Paulo, Brasil. 6Profesor Doctor y Titular de Medicina, Departamento e Instituto de Psiquiatría, Hospital das Clínicas de la Facultad de Medicina, Universidad de São Paulo, Brasil

Mail delivery: Maguida Costa Stefanelli. Praça Vicentina de Carvalho 90 CEP 05047-050 São Paulo - Brasil

Manuscript received by 24.10.2008
Manuscript accepted by 10.2.2009

Index de Enfermería [Index Enferm] 2009; 18(3): 156-160
*This study was carried out under the Program for the Prevention of Manic Relapses of Bipolar Disorders, a Public Policy Program, developed by Instituto de Psiquiatria do Hospital das Clínicas, Faculdade de Medicina da Universidade de São Paulo, Brasil. Also this study was presented in II Congreso Iberoamericano de Investigación Cualitativa en salud (22-25 June 2005. Madrid, Spain)

 

 

 

 

 

 

 

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Moreno, Ricardo Alberto; Stefanelli, Maguida Costa; Souza, Maria da Graça Girade; Oliveira, Aparecida Rosana de; Taveira, Ana Cláudia de Almeida; Gentil, Valentim. Understanding the familiar living in the presence of bipolar disorder. Index de Enfermería [Index Enferm] (digital edition) 2009; 18(3). In </index-enfermeria/v18n3/6909e.php> Consulted by

 

 

 

Abstract

Understanding family life in the presence of bipolar disorder is vital to their participation in the treatment. Through qualitative ethnographic research, carried out in a medium - sized town, in the State of São Paulo (Southeastern Brazil), we aimed at better understanding family life in the presence of bipolar disorder. Patients and their families participated in the research, which included 25 individuals. Participant observation and interviews were used for data collection, which was carried out in accordance to ethical principles and scientific rigor. Data analysis identified the following categories: conflictive family life; impaired relationships with people outside the immediate family; disturbed daily routine; impact on family budget; stigma and prejudice. The cultural theme "From Initial Distress to Coping and Achieving a Better Quality of Life" emerged. Families perceived the Psychoeducational Program, in combination with treatment, as a rich way to learn about the disease and find ways to help achieving mood stabilization.
Key-words: Bipolar Disorder/ Psycho education/ Family/ Qualitative research.

 

 

 

 

 

 

 

Introduction

    Bipolar 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.
    Patients, 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 account.
1-6 Recent epidemiological studies have provided scientific data to broaden the BD concept, and estimated prevalence of the bipolar spectrum at 8.3%.7
    It 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
    The 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.
    To date, 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
    In 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.
    The objective of this study was to understand family life in the presence of BD.
    The coordinating 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.
    The entity coordinating the study provides a help line for professionals to clarify any doubts, based at the São Paulo main office.

Methodology

    This 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:
    -The 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.
    -Psychiatric Hospital Adolfo Bezerra de Menezes of São José do Rio Preto-outpatient clinic and inpatient ward.
    -Homes of patients.
    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.
    A 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.
    Participative 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
    All 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 and saturation.13 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
    The 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.

Results

    Data analysis allowed the categories and cultural theme to be established for the phenomenon under investigation. These categories are described below.

Conflictive Family 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.
    -Our relationship 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.
    -It's a life full of tension, stress and fatigue. Our everyday lives are distressing.
    -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.
    -I (mother) initially accepted, but after the aggressive phase, I can't tolerate it any more.

Impaired relationships 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 also affected.4,6,8
    
We 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...

Altered daily 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.
    -When 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.
    -Our daily routine has become an ordeal because it's difficult to relate to somebody who does not accept his disease.
    -The changes in our everyday lives have been extensive, in all areas.

Repercussions 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 family budget.
    Moreover, there is also the excessive spending pattern which BD patients tend to exhibit during their manic phases.
4,6,8,9
    -He 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.
    -When she takes the medicines she is able to work. If she stops taking them.
    -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.
    -Costs 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 matter.2,4,6,8
    Stigma 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.
    -The changes were great, starting with prejudice of the father and brother themselves.
    -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.
    -I 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.
    Studies with 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 quality.
1,2,4,6,8,16,17
    
The 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
    -I 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.
    -The importance 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.

Cultural Theme: "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.
    The 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 pharmacologic treatment.
    Families state 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.
    Our cultural theme has been corroborated by many studies
1-4,6,8,10,16,17 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.
    Knowledge 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

Conclusion

    Families 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.
    Given 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 health.
    Investing in adequate prevention is better than remedying the sequelae resulting from lack of competent and effective treatment.
19

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