Caregiver Burden and Coping in Schizophrenia and Bipolar Disorder: A Qualitative study American Journal of Psychiatric Rehabilitation. Vol.13 (2). 2010. 126-142 1
Abstract Caregivers of the patients with severe mental disorders suffer considerable burden as a result of their caregiving role. They develop different kinds of coping strategies to deal with this burden. There has been a lack of qualitative studies on caregiver burden and coping especially form the Non Western populations. The present paper reports findings of longitudinal study of burden and coping in a group of caregivers of patients suffering form schizophrenia and bipolar affective disorder (BAD). Qualitative assessments were done by focus group discussions (FGD) with the caregivers over a period of about a year, Caregivers reported burden in different areas like, family activities, social isolation, financial problems and impact on health. They used multiple coping strategies like developing compassion in caregiving, hope for a better future, faith in God, religious practices, helping others with a similar problem. Key Words: Schizophrenia, Bipolar Disorder, Coping, Caregiving and burden Introduction: Mental disorders are a leading source of disease related burden in the society (Murray & Lopez, 1996). The patients suffering from severe mental disorders like schizophrenia and bipolar affective disorder (BAD) impose great burden on their caregivers and families Pai & Kapoor, 1981; Fadden et al, 1987; Schene et al, 1998; Chakraborty & Gill, 2002; Nehra et al, 2005; Gutierrez-Maldonado et al, 2005; Magliono et al, 2006). Care giver burden is an issue of great importance for attendants who are involved with severe mental illness, chronic debilitating ailments or for those who are suffering from PTSD etc. Caregiver burden refers to a high level of stress that may be experienced by people who are caring for another person (usually a family member) with some kind of illness. For example, a person caring for someone with a chronic illness may experience such stressor as financial strain, managing the person's symptoms, dealing with crises, the loss of friends, or the loss of intimacy. According to Zarit, Reever, & Bach Peterson. 1980. The extent to which caregivers feel that their emotional or physical health, social life, and financial status have suffered as a result of caring for their relatives. Can be considered as burden of care giving. 2
As per our study the estimate of total burden scores as well as scores on various burden factors did not show any significant differences between the two caregiver groups both at baseline as well as on follow up. No significant change in burden scores was observed on follow up, except in the burden factor of taking responsibility, where the score declined significantly in caregivers of both the groups over the 6 months follow up (P 0.004 in schizophrenia and 0.002 in BAD). The care givers burden and coping in severe mental disorder; bipolar disorder and Schizophrenia has been studied world over by different scholars. Behavioral dimensions of care givers burden are important to be understood as to develop a mutually inclusive care giving model. High levels of patient-dysfunction and caregiver-burden, low awareness of illness and low perceived control over patient's behaviour were characteristic of both Bi polar disorder and schizophrenia, with no significant differences between the two groups on these parameters. Coping patterns were also quite alike, though caregivers of patients with schizophrenia were using some emotion-focused strategies significantly more often.(nehra et.a.l2006) Regarding adverse effects on others, caregivers were especially distressed by the way the illness had affected their emotional health and their life in general. Poorer social and occupational functioning.(reinares et al 2006) The study showed informal care givers in BAD are also affected. Caregivers of bipolar patients have high levels of expressed emotion, including critical, hostile, or over-involved attitudes. Perceptions of caregivers about bipolar disorder have important effects on levels of burden experienced.(ogilvie et al 2006) Burdens of patient care at times very acute and painful as result it puts affect on patient care as well. Perlick et al (2007) observed that, When caregivers of patients with bipolar illness experience a high burden, patient outcome is adversely affected. This relationship is mediated through families' affective response and patients' medication adherence. (Perlick et.al.2004) The caregivers and the families develop different strategies to cope with the burden. Different types of coping strategies described in literature include problem solving or avoidance strategies (Scazufca and Kuipers, 1996, 1999; Nehra et al, 2005). It is important to understand the type of burden perceived and coping methods adapted by the caregivers so as to counsel the caregivers to use healthy coping strategies. 3
In an Indian study by Chkrabarti et al on Impact of family burden and affective response on clinical outcome among patients with bipolar disorder, found, the burden was significantly more among families of bipolar patients than those of major depression. Prolonged illness and high levels of dysfunction among patients correlated consistently with severity of burden. Severity of illness, higher age of the patient and number of episodes of the illness also influenced the extent of burden. Variables such as gender of the patient, religion, education, occupation, family type and size and the locus of control of both patients and relatives did not influence the extent of burden significantly. Chronic illness of a family member is an objective stressor that results into strain for the caregiver or relative because of the difficult tasks of care of patient (Schene, 1990). This is likely to affect both physical and mental health of the caregiver, which depends upon the characteristics of the patient, the relative, their relationship and their environment (Brown & Birstwistle, 1998). In the past, the traditional joint family system in India acted as a buffer against various kinds of stresses. However, due to rapid urbanization and industrialization, the joint family is breaking. The nuclear families are more vulnerable to stresses and are less equipped to handle mentally ill members (Kapoor, 1992; Sethi & Manchanda, 1978). India with a population of more than one billion is home of one sixth of the world s mentally ill. The prevalence rate of schizophrenia as reported in different studies from India range from is 0.7-5.5/1000 and that for bipolar affective disorder (manic- depressive psychosis) range from 0.7-15.0/1000 (Reddy & Chandrashekar, 1998). Families are the main caregivers for patients suffering from psychiatric illness. The problem of burden on the caregivers of the patients with severe mental disorders is enormous. How the caregivers copes to this burden, is highly important factor which not only determines his or her way of socio-cultural and economic life but also has bearing on course of illness improvement (Scazufca and Kuipers, 1996, 1999; Nehra et al, 2005). Though a large amount of literature is available on caregiver burden and coping, and a number of reliable instruments are available for their assessment, measuring both caregiver burden and coping involve so many complexities and there are so many individual variations. This necessitates the need for qualitative assessment (Jungbauer et al, 2004). Most studies on burden and caregiving in mental disorders have assessed burden and caregiving using quantitative instruments. The present study assessed burden and coping strategies in a group of caregivers of patients with schizophrenia and bipolar affective disorder in a prospective design using both qualitative and 4
quantitative methods. The findings of quantitative component of the study have been discussed in other communication (Chadda et al, 2007). The study was conducted by a team of psychiatrist, social and behavioral scientist to look into various qualitative dimensions of quality of life of caregivers and their way of dealing with patients. In the present communication, qualitative dimensions of caregiver patient relationship, coping of burden by care giver and various subtle nuances adopted as strategy to deal with the issue of coping of burden while giving care to patients as well as ways and means to defend self esteem under stressful situation. Methods: Setting of the Study: The study was conducted from November 2001 to October 2003 in the psychiatry OPD at Institute of Human Behaviour and Allied Sciences, Delhi. India. Majority of the patients visiting the Institute are mentally challenged cases of different types and often accompanied by their care givers. The severe mental disorder patients i.e. Schizophrenia and BAD (classification was done as per ICD 10 criteria) were visiting to OPD were screened by psychiatrist and social scientist. Patients of 15-50 years of the both the sexes were included in the study. Care givers of those patients were picked up for the study, been suffering for last 1year from the date of initiation of the study and are clinically stable for previous 3 months. Any chronic ailment or severe co morbidity of heart or lung as well as addicts of drug and alcohol were excluded from the study. Asides, any other psychiatric patient (other than the indexed patient) staying in the same house hold were also excluded. Those care givers were incorporated, who does not have history of mental illness and are caring the patient for last one year. One thousand patients were screened for 1 year and out which 305 were fulfilling the criteria of selection. However, a sample consisted of 100 patients each of schizophrenia and BAD and 100 caregivers each of both the groups of patients were picked up for the study. As consistency of care giving was evinced among the selected 100 patients. Q u a l i t a t i v e s t u d y w a s e s s e n t i a l t o l o o k i n t o t h e n u a n c e s o f t h e c a r e g i v e r s i n t e r a c t i o n w i t h t h e p a t i e n t a n d a l s o t o u n d e r s t a n d t h e a f f e c t s ( o n a c c o u n t o f c a r e g i v i n g ) o n s o c i a l i n s t i t u t i o n s o f t h e c a r e g i v e r s. T e l l t a l e s t o r i e s o f c a r e g i v i n g w e r e e x p r e s s i o n o f h i g h a n d l o w o f a t t e n d a n t s d a i l y c h o r e o f c a r e t o t h e p a t i e n t s a n d 5
c o u l d b e w e l l c o m p r e h e n d e d b y q u a l i t a t i v e r i g o r s o f u n d e r s t a n d i n g a s t h e p e r c e p t i o n s a n d e x p r e s s i o n s w e r e n o t b l i n d e d b y s t a n d a r d i z e d s t r u c t u r e d q u e s t i o n n a i r e s o r i n t e r v i e w s c h e d u l e s. Though quantitative study helped understand different correlates of burden factor and coping etc. But to know perceptions, attitudes of the attendants it was FGD which helped to know more details. Understanding of social activities of Therapy Management Group comprising of care givers was comprehended by reading and assessing inter personal behaviors of care givers vis a vis patient through keen anthropological observation. Specific hypothesis or postulates were not framed in order to carry out the qualitative study, however, the aim and objective of the study is, to assess the relationship between burden and coping in care givers of clinically stable patients with schizophrenia and BAD and has been stated in the quantitative paper (Chadda et.al 2007) Inadvertently, the participants were not specified in the study, however the facilitator is well trained in conducting FGD on various health and psycho social issues. Ten sessions of FGDs were conducted with the caregivers to make qualitative assessment of burden and coping strategies of the caregivers. Ten sessions of FGD were comprising of 10 participants of both the schizophrenia and BAD care givers. A total of ten FGDs were conducted during the study period. Each of the sessions comprised of different batch of care givers. The session lasted about one hour and was conducted under the supervision of a medical anthropologist. Audio recording was done and notes were also taken for the sessions. And all necessary precautions were taken to carry out the session successfully. Each FGD session was attended by 10 caregivers. Care givers were considered as homogeneous group so far as care giving was concerned (the research team had before hand knowledge regarding the care givers, as they were frequenting to the institution for treatment of the mentally challenged dependents). Although, most of the caregivers interviewed were in the age group of 40s or 50s. And the participants were from economically lower-middle class background. Most of the families (involved in FGD) were earning on average Indian Rupees 4500-5000 per month (USD 100-110). All the caregivers were in the care giving role for a minimum of 2 years period. The length of care giving ranged from 2 years to 38 years, however, average period being about 10 to 15 years. The relatives were on average caring the patients for ten years period. 6
In the beginning of the FGD, the group leader (one of the investigators) introduced him and explained the purpose of organizing the session. Initiating the discussions, the group leader emphasized that the psychiatric illness may have different symptoms but the problem they create are more or less the same, although different in intensity. The sessions aimed at getting details about the various domains of caregiving, to understand the characteristics of burden, the caregivers faced, and their ways of coping. The FGDs explored the critical perception and values of the caregivers and the collective consciousness of the caregivers in regard to skilful patient handling. To breakaway the hesitation of the passive members, every group member was encouraged to participate in discussion. The members discussed about the problems faced in caregiving and how they developed the solutions for them. Though it had been planned to cover all the study participants for the FGDs, due to logistics like long travel time to come to hospital, arranging the groups for sessions, only about half of the subjects (both patients as well as caregivers) could attend the sessions. Written informed consent was taken from the caregivers and /or the patients, as appropriate. Confidentiality of the patients and caregivers was ensured. The study was approved by the Institute s ethics committee. The FGDs were analyzed by the technique of Narrative analysis by the medical anthropologist of the team. The metaphors and the narrations were key for the analysis of the data as the study was not aimed to prove or disprove any hypothesis it was convenient to use narrative analysis for interpretation of FGD data. Patients psycho education session were conducted by trained psychiatrist of the team. It involved using counseling and usage of readily available instruction materials in the institute. In order to improve coping skill among the care givers and treatment adherence of the patients, therapy management group (TMG) formation of care givers were very important. The objective of the said activities were to remove misconception regarding the ailment and stigma of both the care givers and of the patients to some extent. The TMG sessions were conducted by using different visual aids and lucidly written hand outs provided to care givers from the institutes. TMG was acting as moral booster for each other and collectively empathizing on group members bereavement. In all 80 patients and 120 care givers were involved in these activities. Through the qualitative study, nuances of moral support the group members extend to each other while in TMG could be realized, need for humane and sympathetic consideration for the patients from different corners were clearly highlighted. Care givers were also expressing the group 7
perception regarding intra and inter familial behaviour and changes before and after the revelation of presence of a mentally challenged member in the family. In quantitative study the answers are very straight forward and at times cryptic and not able to explain subtleties of human behaviour and inter personnel interaction. Results: Categorization of the patients was done for the quantitative paper according to the following criterion, and the same criterion existed while highlighting the qualitative category, The initial intake consisted of 305 patients and their caregivers (150 of schizophrenia and 155 of BAD), out of which 100 patients and 100 caregivers each of schizophrenia and BAD completed the 6 months follow up. There were no significant differences between the cases and drop outs on various socio demographic and clinical characteristics. Thirty six percent of patients with schizophrenia were in the age group 15 30, compared to 44% of the BAD group. About 20% of patients in both groups were above 40. Seventy five percent of schizophrenia patients and 65% of those of BAD were males. Sixty five percent of the patients in both groups were married. Nearly one third of the patients had received up to 5 years of formal education, about half had completed schooling, and 16% had completed graduation. More than half of the patients lived in joint families. More than 80 percent of the patients were working. Nineteen percent of schizophrenia patients and 26% of those of BAD group were housewives. Agriculture, clerical jobs and small scale business were the other common professions of the patients. More than 85% patients belonged to low socioeconomic group with a monthly income of less than 2,000 Indian rupees. The two groups were comparable on most of the variables, except that 40% of the BAD subjects came from rural background, compared to just 13% of the schizophrenia group (P < 0.001). The focus group discussions were primarily conducted to elicit the nature of burden, coping strategies and problems faced by the caregivers in day to day interaction with the patients, and how they found out solutions to such problems. The findings are presented in form of various themes about the caregiver burden and coping methods, which emerged during the sessions. Some of the themes were overlapping. 8
A. Caregiver burden Non acceptance of the mentally ill person by the society as its member, prejudice, stigma, avoidance of the mentally ill, impact on family functioning and financial problems were some of the important aspects of burden, which came out during the FGD sessions. These are discussed in further details. Non acceptance by the society and social isolation: Many of the caregivers expressed their sense of isolation from the rest of the society. Father of a young male patient said, People stop coming to the house. Even close relatives are reluctant to come. Father of a young unmarried schizophrenic female patient said, The family has to hide the disease because she is unmarried and if we tell anyone, we will face difficulty in finding a suitable match for her. Sometimes, I am not able to share my feelings and tension with anybody because of her illness Prejudice and stigma: One caregiver commented esteem and social status of the family has been reduced to ground, because people don t want to talk to us they avoid us. Some other statements were, The patient is generally avoided and even scold., The patients are looked upon as inferior and people treat them different., Many people try to avoid mental patients and feel inferiority complex while talking to them. Social stigma and prejudice, which the mentally ill and their families face in the society is obvious in the above statements, and this adds to the burden The caregivers generally felt that the society does not sympathize and they lack in understanding of mental patients. Patients role often remains unappreciated, they are blamed and misunderstood by the general public, and such an attitude makes the situation more complicated as the backlash of patients anger is felt by the caregivers. Studies showed in India that family gets affected with high burden of care giving different types of mental illness. A cross sectional study was undertaken to assess the burden between family caregivers of patients having Schizophrenia and Epilepsy. Findings revealed that the caregivers of both long term physical illness like intractable epilepsy and mental illness like schizophrenia experience high level of burden in the areas of; patient care, finance, physical and emotional burden, family relations and occupation. The study highlights the need for family interventional programs in follow up clinics to address the specific concern, related to burden of caregivers. (Sreeja L 2009) 9
Another study by Nehra et.al 2005 suggested that Coping and other elements of the caregiving experience in BPAD are no different from schizophrenia. The relationship between caregivercoping and its determinants appears to be a complex one. More methodologically sound and culturally relevant investigations are required to understand this intricate area, with the hope that a better understanding will help the cause of both patients and their caregivers. A study by Gautam et al 1984 of Chronic lung disease cases and Schizophrenia showed 84% of families in the later group of care givers faced both objective and subjective burden. Effects on family functioning: Wife of a BAD patient revealed that children were unable to concentrate on studies because of the problems the patient often created. A caregiver expressed that they would curtail on all of their necessities and luxuries, as expenses on medicines were increasing day by day. The wife of a bipolar patient said with heavy heart, Once he ran away with all the jewelry, and after that our financial position got worse. When asked whether the illness of the patient affect the health and day-to-day activities of caregiver, majority of them replied in positive. One caregiver said, more or less life of every family member gets affected. Mother of a schizophrenic patient said, We have to leave one person at home for him, when we are away, we all keep on worrying, about him for the whole day. All caregivers were concerned and equivocally said that there has to be someone at home in their absence. Wife of a schizophrenic patient said, He is unable to do anything of his own. Everything has to be told clearly to him, and therefore one person is always engaged in his care only. One caregiver revealed, The time is the hardest and affect the daily routine of the family members for at least three month, whenever he has a relapse. Thus, day to day activities of all the family members would be affected, like studies of children, work of adults, social activities and even day to day functioning of the family. Caregivers vocation: One of the caregivers said, If he has to go for some important work, he is always worrying about the patient, and remains tense for long. A businessman husband of a schizophrenic patient revealed, It affects my work efficiency, also sleeps to a great extent. Caregiving role was hence associated with adverse effects on one s occupation. Treatment burden: Non compliance with treatment was also a major concern. Because of the need for long duration of treatment, the patients many times out of frustration stopped treatment, and would increase the behavioural disturbances and increase the risk of exacerbation of the symptoms. 10
Financial burden: Most of the caregivers interviewed spoke about the financial strains associated with caring for the relative with a mental illness. For example, the wife of a patient with BAD stated, I can t control how he spends his money. All I can do is to make as much as I can. One aged caregiver said, It takes time to treat this problem. People who do not have good source of income face financial problem. Wife of a patient, who was the only earning member of the family, said, There is financial problem, whenever he is not earning regularly due to the illness The family finances would suffer further, as the caregivers would not be able to devote their full time to their work, affecting their earnings. Similarly, the wife of a bipolar patient said with heavy heart, Once he ran away with all the jewelry, and after that our financial position got worse. Caregivers physical & mental health: Health of the caregivers and the families would be another casualty of the caregiver role. According to one caregiver, It affects the health to a large extent and sometimes I suspect whether I will also become a patient. Another caregiver said, All of us (family members) have developed one or other physical problems. The wife of a young schizophrenic patient said, When we are anxious we are not able to do the work. Only half of the work gets completed. Father of a young divorced schizophrenic patient said, All responsibilities have to be met by me. No body is helping me financially, so tension increases. Brother of a patient suffering from BAD said, I become so aggressive and think of either killing him or myself. Some of the caregivers had developed secondary depression and were seeking treatment. Looking into future: Another concern, which came up during the FGDs was that who would take care of the patient in caregiver s absence, if no family members were available. (Unfortunately, India does not have any long stay homes for the improved mentally ill patients, who are unable to take care for themselves) An aged caregiver with tears in his eyes said, I take care of him all the time, but after me who? Now the situation is changing drastically. I am not able to do the work because of age. B. Coping Methods: The sessions provided evidence of various methods of coping used by the caregivers to deal with their burden. They reported a wide range of emotions like fear, concern, confusion, frustration, hope, caring, compassion, sympathy, love, sadness, grief, anger, resentment, and guilt at one point or another while caring the patients. Thus both positive as well as negative emotions had been reflected at different times. 11
The reason for no change in caregiver burden over time in our study could also be that our patients were clinically stable before being included in the study. Stress coping was relatively easier in our case, however, the care givers were oriented to tackle the patients on the merit of their mental health status. In this study, caregivers of schizophrenia and BAD patients were found to use similar kind of coping strategies to deal with their burden. Both the caregiver groups used the problem focused and seek social support coping strategies more often than the avoidance strategies Compassionate feelings: Husband of a BAD patient, said, I have become more compassionate and try more and more to learn about the disease and its management. Some thought caregiving role as leading to improvement in the relations, If you care for somebody, you automatically get close to that person, and the relationship improves. Faith in God: Using the faith in God was an important coping strategy, voiced by some caregivers. Most felt that one should do one s duty of taking care of their patient and provide him or her with the best treatment and leave everything else for God. In the words of one caregiver, Best coping strategies are that there should be complete and timely treatment, and the rest depends on God. Self help approach: Husband of another patient revealed that when he comes across any patient like his wife, he tells the family members of the patient how to deal with the patient. Acceptance and finding solutions: Acceptance of the illness as it existed was another strategy employed. One caregiver said, We are aware of the fact that this problem is long term and now part of our life. Another rationalized as, We have to fight with everybody and try to convince them that he is not doing it intentionally. Supportive handling: Tackling the behavioural disturbances at home is described in the words of some caregivers in the following statements, Whenever, she stops treatment, she loses temper and does whatever she wants to do. But still I bear with it because I know it is not in her hands., She loses temper, breaks things, shouts when her demands are not met. But the patient can be tackled by not arguing but by giving suggestions calmly. This is how the caregivers shared their learning experiences of caregiving. 12
Hopefulness: Responses of caregivers show that they were hopeful of a good future. Father of a young schizophrenic patient said, If good things change, so do the bad things, and therefore our bad time will also pass away. Mother of a young schizophrenic patient said, If things are not good, tomorrow will be better. An old caregiver said angrily, this disease should not happen even to an enemy. Religious participation: Religion was often a source of support. Most of the caregivers believed in God and thought that He would help them out in this situation. Some of the caregivers said, I do weekly fast so that he (patient) gets well soon. I pray everyday and it helps me in difficult times. Discussion The study assessed the burden and coping strategies adapted by caregivers of patients with schizophrenia and BAD in a prospective design. Many psychosocial issues regarding caregiving and strategies to cope up with the burden of caregiving came up during the FGDs. The sessions brought out the finer qualitative nuances involved in routine interaction of caregiver with the patient, which throw light on the caregivers perception about the illness, its burden and coping strategies adopted by them. Caregivers were facing burden in multiple areas like social isolation, restriction of various social and leisure activities, financial burden, adverse effects on health, social stigma and adverse effects on the family functioning. They were using healthy coping strategies like positive and compassionate approach, religious support, supportive handing and taking regular guidance from the experts. The caregivers were acting as therapy management group (TMG) in the given circumstance. Therapy management group (the set of individuals who take charge of therapy management with or on behalf of the sufferer) was active in the present situation, and the keen interest and involvement of the group could help improve the over all situation in steady pace (Janzen 1978). TMG is a group of relatives, friends, acquaintances, and neighbour, formed around the sick. It is a quasi-group, because it starts dissolving when the sick person is on the road to recovery. TMG principally comprises the family members, who take all decisions regarding the treatment and rehabilitation of the mental patient. The family is the main caregiver and takes full responsibility of monitoring the treatment, taking patient to hospital, supervising medication, providing emotional support and day to day needs of the patient including various expenses. 13
In India, most of the patients suffering form psychiatric disorders don t receive any financial benefits from the State on ground of their illness or unemployment. Patients living in nuclear families are facing a new problem, as earlier the families used to be bigger, and the joint families were capable of providing human as well as material resources for the care of mentally ill. But as these families are gradually breaking down into nuclear households, it becomes an onerous duty for the already extremely preoccupied and busy family members to look after persons with mental illness. In these families, having a mentally sick person at home would mean that at least one of them will have to resign from his/her job or extremely limit his/her preoccupations to extend constant care to the sick. We have observed that parents can still provide or are able to provide all possible help to their mentally ill children. To a large extent this principle holds true for the interdependency of spouses on one another during crisis (i.e. negotiating with mental illness). FGDs brought out that both the parents and spouses are in spite of all odds remained committed to their onus of care giving. The situation is dismal with respect to the issue of community supports. Rather than giving help, they have an ambivalent attitude towards persons with mental illness. It was often thrown open in the FGD that the neighbour or even the relatives look down upon the patient and the caregivers. Even the courtesy call or meeting in social gathering in the presence of such care givers were not a welcome proposition. The families suffer silently in the absence of community support structures, they are the sole institutions that care for the mentally ill, and, at the same time, suffer from the social stigma that is tied to it. David Karp in his Mental Illness, Care giving, and Emotion Management has explained in great detail about care giving and emotion management in mental illness. Based on 50 odd in-depth interviews, his paper considered how caregivers to a spouse, parent, child, or sibling suffering from depression, manic-depression, or schizophrenia manage their emotions over time (Karp, 2000). Realization that mental illness may be a permanent condition ushers in the more negative emotions of anger and resentment. Caregivers eventual recognition that they cannot control their family member s illness allows them to decrease involvement without guilt. Moral boundaries of caregiving necessarily shift as the mental illness emerges over time, and that it is imperative to balance the needs of the mentally ill person with the needs of those who provide care and support. Karp reminds readers of the 4 C's: (1) I did not cause it, (2) I cannot cure it, (3) I cannot control it, and (4) all I can do is cope with it (Karp, 2000). The FGDs were replete with such coping 14
strategies and as a result the intervention running over twenty sessions and adherence to the suggestions by the caregivers yielded positive result. And even those who were not so optimistic about the whole process were seen to be changing in their thought process. It was clear from the study that the severe psychiatric disorders like BAD and schizophrenia can be well handled by the family or the near and dear ones contrary to health facility based care. Regular and systematic interventions for the caregivers under such situation to handle the burden of coping strategies need to be evolved in consultation with experts (both clinicians and social workers and allied scientists). The caregivers health status and moral are required to be kept in good state so that the patents are taken care of appropriately. Conclusion: Burden level of schizophrenia and BAD patient care givers were almost same and similar coping mechanism was adopted in both type of patients. The relationship between the care giver and the patients were of varying and complex nature. However, care givers in the present study showed no difference in dispensesion of care irrespective of relation with the patient. The spouses or the parents were equally concerned and caring for the patients unlike the observation made by various western studies (Jungbauer 2001). In an Indian setting a study carried out by Addlakha (1994) in Delhi. clearly revealed that the parental role (even a widowed mother) is of high importance. Even if the patient is shunted out by her husband the mother extends all sorts of support to her mentally challenged child as well as her grand children. Care giver braves all odds and supports the mentally challenged child. Limitation: The homogeneity of FGD group tend to add bias in the study and the latent bias of the study design could not be taken care off. N.B. No maladaptive cases were found in the present study. (Ans. to Query no.4) Dr. Chadda to Ans. Query no.5 in the Discussion section. 15
ACKNOWLEDGEMENT The authors are thankful to the Indian Council of Medial Research for supporting the study and Professor J.S.Bapna, Professor N.G.Desai, Dr. D.K.Gupta, Dr. H.L.Joshi, Ms Ashima Srivastava and Ms Himali Bangia for their contributions at different stages of the study. 16
References Brown, S. & Biirstwistle, J. (1998). People with schizophrenia and their families. Fifteenyear outcome. British journal of Psychiatry, 173, 139-144. Clark, R.E. (1994). Family costs associated with severe mental illness and substance abuse. Hospital and Community Psychiatry, 45,808-813. Folkman, S. & Lazarus, R.S. (1985). If it changes it must be a process: A study of emotion and coping during three stages of a college examination. Journal of Personnality and Social Psychology, 48, 150-170. Gautam, S. & Nijhawan, M. (1984). Burden on families of schizophrenia and chronic lung disease patients. Indian journal of Psychiatry, 26, 156-159. Gopinath, P.S. & Chaturvedi, S.K. (1992). Distressing behaviour of schizophrenics at home. Acta Psychiatrica Scandinavica, 86, 185-188. Janzen J M (1978), The quest for Therapy in Lower Zaire, University of California Press. Jungbauer J, Wittmund B, Dietrich S et al (2003) Subjective burden over 12 months in parents of patients with schizophrenia. Arch Psychiatr Nurs 17:126-134. Kapir, R.L. (1992) The family and schizophreia: Priority areas for intervention research in India Journal of Psychiatry, 34, 3-7 Karp D A, Tanarugaschock Valaya (2000), Mental Illness, Caregiving and Emotional Management, Qualitative Health Research, Vol. 10 No.1, 6-25. Pai, S & Kapoor, R.L. (1983). Evaluation of home care treatment for schizoprenia. Acta Psychiatrica Scandinaviea, 67, 80-88. Platt, S. (1985). Measuring the burden of psychiatric illness on the family: An evaluation of some rating scales. Psychological Medicine, 15, 385-394. Ram, S., Bromet, E.J., & Eaton, W.W. (1992). The natural course of schizophrenia: A review of first admission studies. Schizophrenia Bulletin, 18, 185-205. 17
RangaRao, N.V.S.S.(1988) Comparative Study of Disability and Family Burden in Rural and Urban areas. M.D. Thesis, Banalore University, Bangalore. Reddy MV, Chandershekran CR (1998) Prevalence of mental and behavioural disorders in India: a meta-analysis. Indian J Psychiatry 40(2):149-57 Roychaudhary, J., Mandal, D., Boral, A., & Bhattacharya, D. (1995). Family burden among long term psychiatric patients. Indian Journal of Psychiatry. 37; 81-85 Schene, A.H.(1990) Objective and subjective dimensions of family burden: Toward an integrative framework. Social Psychiatry and Psychiatric Epidemiology, 25, 289-297. Sethi, B.B. & Manchanda, R. (1978). Socioeconomic, demographic and cultural correlates of psychiatric disorder with special reference to India. Indian Journal of Psychiatry, 20, 199-211. World Health Report, 2001 (2001). World Health Organization..Zarit, S. H., Reever, K. E., & Bach-Peterson, J.. Relatives of the Impaired Elderly: Correlates of Feelings of Burden. Gerontologist. 1980.. 20: 649-55. Sreeja, G. Sandhya, l. Rakesh & M. Singh : Comparison Of Burden Between Family Caregivers Of Patients Having Schizophrenia And Epilepsy. The Internet Journal of Epidemiology. 2009 Volume 6 Number 2 Gautam. Nijhawan Burden of Families of Schizophrenia and Chronic Lung Disease. Indian Journal of Psychiatry. 1984.26:156-59. 18