The International Journal of Psychosocial Rehabilitation

A Study of Socio Cultural Perspectives of 

Care Givers in Burden Coping Behaviour in 

Bipolar Disorder and Schizophrenia Cases


 
1. Dr. K.K.Ganguly, M.Sc., Ph.D 
Deputy Director General. Social and Behavioural Research Unit.
Indian Council of Medical Research. New Delhi-110029


2. Prof. R.K Chadda, M.D.
Professor Psychiatry
Dept. of Psychiatry. All India Institute of Medical Sciences. New Delhi 110029India


3. Dr. T.B Singh, M.A , Ph.D. 
Additional Professor.
Institute of Human Behaviour and Allied Sciences. Delhi-110092. India




Citation:
Ganguly KK, Chadda RK, & Singh TB. (2009). A Study of Socio Cultural Perspectives of Care Givers in  Burden Coping Behaviour in
Bipolar Disorder and Schizophrenia Cases. 
International Journal of Psychosocial Rehabilitation. Vol 13(2).   93-103

 

 
Acknowledgement:
The team is thankful to the Institute to allow to carry out the study on the patients visiting to the hospital. And we are also thankful to Indian Council of Medical Research for funding the study. Special thanks are also extended to Dr. J.S Bapna (Institute Director), Dr. N.G Desai and Dr. D Gupta for interest support extended for the study

 


Abstract

Qualitative dimension of care giving and burden coping strategy was assessed by doing Focus Group Discussion (FGD) and appropriate educational intervention were designed thereafter to help improve quality of coping strategy and reduce the burden of the care givers. Ten FGDs and twenty two intervention sessions brought out, how efficaciously “therapy management group”, in this case the care givers (the spouses /children /parents )   evolved in the process of care giving and had positive bearing as well. The process of intervention in particular was done in the presence of the patients. The patients were very much aware of the activities (at the cognitive level) going on during the intervention session. However, they were not part of the FGD as the principle of  FGD does not allow non homogeneity of the group. It was evident from the study that the sessions had positive impact for coping behaviour and increased confidence.


Introduction
Mental health problem in India mostly remains unnoticed due to various reasons i.e. either not  considered as a problem needing attention or some times it is ignored as no one in the family has time to think or discuss about the mentally challenged person or the issue of mental ailment. The situation gets further aggravated by lack of adequate medical or health facility to treat the case right earnest.

Vagaries of care givers was observed quite commonly among the patients of mental disorder i.e. Bipolar Disorder and schizophrenia visiting to Institute of Human Behavior and Allied Sciences (IHBAS). Delhi. The study was carried out 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. And suggestions were also given by the team to care givers during the sessions of burden coping, care giver and research team for betterment of the problem.

Earlier bipolar affective disorder (manic depressive psychosis) with its episodic course was considered to have a better prognosis than schizophrenia, which often tends to have a chronic course, research in the last few years has shown that the bipolar affective disorder is also an equally disabling illness. Both the illness find a place in the list of most disabling illness for the most productive age group of 15-44 (World Health Report, 2001). Until 1950s, a large number of these patients used to be confined to the walls of the mental hospitals (asylums). With the advances in the psychopharmacology and growing emphasis on outpatient treatment in psychiatry, most patients with these disorders are being looked after by their families. In India unlike in the West, the families have always remained the major source of care for the mentally ill even in the past, since there was never adequate number of mental hospital beds for these patients in our country.

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). Unlike in the West, the traditional joint family system in India acts 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).

In order to understand caregivers plight, it is necessary to comprehend certain key components essential in maintenance of social interaction and inter personal operation among caregivers and the mentally challenged, as well as the challenged vis a vis the family. Besides, one also needs to understand the dynamic equilibrium that maintains the bond between the patients and the persons beyond family, be it relatives or community he lives in. Caregivers need to “cope” with“ burden of both types, objective and subjective stress. Coping is a process by which the care giver not only eases out the hardship of care giving but also improves the psychiatric patients in many ways to bring him back to terms with the out world, world beyond the mentally challenged and the care giver.

The term ‘burden’ is a common English word, which has become quite popular in psychiatry with de-institutionalization. There are some minor differences in the way; the term has been defined by different investigators. According to Platt (1985), “burden refers to the presence of problems difficulties or adverse events that affect the lives of psychiatric patients.”

Similarly, “Coping’, in general , refers to a person’s cognitive and behavioural response to a stressful situation. Lazarus and Folkman (1985) have defined coping as “coping refers to the constantly changing thoughts and behaviours that people use in order to manage stressful situations. “Ways of both patients and relatives, and depend on relatives’ appraisal of their patients’ situation.

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. Severe mental illness like schizophrenia, bipolar affective disorder and depression is one of the major cause of concern from many Indian homes. The problem of burden on the caregivers of the patients with severe mental disorders is enormous. Coping strategy of the care giver 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. Thus, burden and coping strategies in caregivers of psychiatric patients has been an important area of research attracting the psychiatrists and social scientists in last few decades.

In one of the studies carried out by Fadden et al (1987a, b) impact of functional psychiatric illness on the patients’ family, found that the family members had to bear a lot of burden because of patients’ illness. Many patients caused moderate to severe hardship to their relatives such as social embarrassment, inconvenience, and disturbed behaviour, which frightened the family. High rates of divorce and separation in marriages were reported where the patient is mentally ill. Wives believed mental illness to be a stigma in the society. Family of schizophrenic patient experienced financial burden in taking care of the patient. Wives experienced anxiety, guilt and feeling of rejection towards their husbands because of illness. Burden increased with increase in the duration of illness. Problems also arose with neighbours

Indian Studies on BAD and schizophrenia burden coping Strategies
In a one of the studies , Pai and Kapoor (1983) evaluated the impact of home care treatment for schizophrenia patients in terms of outcome. The results revealed better clinical outcome, better social functioning and significant reduction of burden on the family, compared to the patients who were hospitalized and followed up on outpatient basis.

In another Indian study, reported from Jaipur in North India, Gautam and Nijhawan (1984) compared the experience of burden on the relatives with chronic schizophrenia with relatives of patients suffering from chronic lung disease. It was found that the relatives with schizophrenia experienced severe burden than those of patients with chronic lung disease. Further relatives of male schizophrenics experienced increased financial burden.

Differences in perception of burden between rural and urban background have also been examined. Ranga Rao (1988), in a study from Bangalore, assessed burden of relatives of patients suffering from schizophrenia who hailed from rural and urban background using Family Burden Scale (Ranga Rao, 1988). Relatives of urban patients experienced more burden than their rural counterparts. However, somewhat different results were found in another study from the same centre. Ali and Bhatti (1988) examined the relationship between social support system and family burden in chronic schizophrenia in comparable rural and urban samples. Thirty patients each from rural and urban areas were selected. The study used Alan Vax Social Support appraisal Scale and family Burden Scale of Pai & Kapoor (1981). It was found that families experienced equal burden irrespective of the setting.

Gopinath and Chaturvedi (1992) systematically evaluated the impact of behaviour of the Patient  at home in 62 relatives using the Scale for Assessment of Family Distress. It was found that     inactivity, slowness, poor self care inability to participate in household activities were perceived as most distressful. Interestingly, aggressive or psychotic behaviour was not perceived as distressful by relatives. However, young and educated relatives reported distress more often.

In a comparative study on relatives of long term psychiatric patients (schizophrenia and bipolar affective disorder) from Kolkata, Roychaudhuri et al (1995) assessed the subjective and objective burdens of 54 caregivers of schizophrenia and bipolar affective disorder patients. Results showed that caregivers of schizophrenia patients showed increased severity of burden as compared to bipolar affective disorder patients.

In a recent Indian study from Pondichery, Chanrasekran et al (2002) evaluated the coping styles adopted by the relatives of schizophrenic patients. Forty four patients (twenty men and twenty four women) and same number of relatives were included in the study. Seventy one per cent of the relatives used resignation strategies, 79% failed to maintain social contacts, and 60% did not seek information about the illness. Only one third of the relatives ever attempted active social involvement of the patients, coercion and avoidance strategies.

Most of the work on burden and coping in caregivers of psychiatric patients has been undertaken in patients of schizophrenia, though there are some studies on affective disorders. Some studies have reported higher burden in caregiver of patients with schizophrenia than in those of affective disorders, while others have found equivalent severity. Studies done in India are of cross sectional nature and mostly studied one or two parameters. 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 quantitative (though the findings of quantitative component of the study has been discussed in other communication) techniques. In the present communication, qualitative dimensions of care giver 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:
Qualitative Assessment:
Ten Focus Group Discussions (FGDs) were conducted to gain different perception and domains of care giving of the family members with psychiatric disorders. Focus group discussions helps to explore the critical perception and values of the care givers and helps understand the collective consciousness of the group in question (care givers) in regard to skilful patient handling, Values and meanings attributed to a certain social phenomenon is a strong marker to understand finer details in care giving and care givers rite de passage as well as patients reaction to the discussion

The care givers were told that they will be part of a study where by the researcher (comprising of treating physicians, psychologists and social scientist) will be able to conduct a study to know about the amount and type of burden they face to cope the stress in care giving of the patients. The caregivers were initially reluctant as they were not able to comprehend that why they would be interviewed or take part in focus group discussion. Their feeling was that the patient should be subject of study but not they. Explanation in detail by the researchers regarding aims, objectives and purpose of the study, they agreed to sign/ put thumb impression on the consent form. And for  the academic sessions they also signed the consent form on behalf of their patient. It was promised to the care givers that confidentiality of all sorts will sorts will be maintained the care givers were ready to come forward for the study.

Though the participants were not initially keen to be part of FGD. Albeit, they were under strain of both psycho social as well as physical in nature, not only they had to negotiate with severely depressed psychiatric patients but also had to carry out their own day to day activities and responsibilities. The purpose of FGDs and benefits thereof to the care givers and the patients by being a part of FGD was well explained by the research team, though the FGDs were time consuming but the care givers realized the importance of the discussion very quickly and were anxious to be part of the same.
 
Ten sessions of Focus Group Discussions (FGDs) were conducted with the caregivers to make qualitative assessment of burden and coping strategies of the caregivers. 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.

Findings of Focus Group Discussions (FGDs)
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.

Non considerate, a-sympathetic attitude towards patients; care givers dilemma

Many of the interviewees opined about their sense of isolation from the rest of the society. Father of a young patient said, “People stop coming to the house. Even close relatives are reluctant to come.”
 
A father of a young unmarried schizophrenic female said,”We have 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”
 
But, some of the caregivers were also optimistic.  One of the caregivers said,“if you care for somebody, you automatically get close to that person, and the relationship improves.”

Stigma and avoidance mechanism of all sorts were associated with psychiatric patients and was so common and echoed in almost every FGD.One of the caregivers said, “ The Patient is generally avoided and even scolded.” (Mother of a young patient said, “The patients are looked upon as inferior and people treat them differently.”

Another caregiver said, “esteem and social status of the family has been raised to ground , because people don’t want to talk to us they avoid us .”

One aged caregiver said, “Many people try to avoid mental patients and feel inferiority complex while talking to them .”

The caregivers generally felt that the society does not sympathize and they lack in understanding of mental patients. They are often unappreciated, blamed and misunderstood by the general public and such attitude makes the situation more complicated as the backlash of patients anger is felt by the care givers.

Faith in god; A way of coping and riddance of dilemma

The sessions provided evidence of various ways of coping strategies as well as solution to dilemma sought by the by the caregivers.

One of the caregiver’s husband of a bipolar affective disorder patient, said, “ I have become more compassionate and try more and more to learn about the disease and its management.”

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.
 
One of the caregivers said, “We are aware of the fact that this problem is long term and now part of our  life.”

 Most of them reported that they felt the fear, concern, confusion, frustration, hope, caring, compassion, sympathy, love, sadness, grief, anger, resentment, and guilt at one point or another while caring the patients. They often spoke about each of these with both positive and negative emotions and also with great passion and intensity.

Brother of a patient suffering from bipolar affective disorder said, “ I become so aggressive and think of either killing him or myself.”

One caregiver said, “We have to fight with everybody and try to convince them that he is not doing it intentionally.”

Wife of a bipolar affective disorder patient revealed that children were unable to concentrate on studies because of the problems the patient often created.

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.

Sometimes, the caregivers also become careless. Emphasizing the need, one caregiver said,  “Whenever, she stops treatment, she looses temper and does whatever she wants to do. But still I bear with it because I know it is not in her hands.”

Husband of a schizophrenic wife revealed, “The patient looses temper, breaks things, shouts when her demands are not met. But the patient can be tackled by not arguing but by giving suggestions calmly.”

Responses of caregivers show that they are hopeful of a good future. Father of a young schizophrenic said,
“If good things change, so do the bad things, our bad time will also pass away.” Mother of a young schizophrenic said, “If things are not good, tomorrow will be better.”

 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. One of the caregivers said, “ I do weekly fast so that he (patient) gets well soon.”

Another caregiver said, “ I pray everyday and it helps me in difficult times.”

Husband of a young patient said, “ Best coping strategies are that there should be complete and timely treatment, and the rest depends on God.”

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 bipolar disorder 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.”

The wife of a patient, who was the only earning member of the family, said, “She feels financial problem, if he is not earning regularly or in less amount.”

A caregiver expressed that the caregiver has to curtail necessities, luxuries, as expenses on medicines are increasing day by day.
 
The wife of a bipolar patient said with heavy heart, “Once he ran away with all the
jewelry, after that financial position got worse.”

 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.”

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.” 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.”

A businessman husband of a schizophrenic patient revealed, “It affects my work efficiency, also sleeps to a great extent.” An old caregiver said angrily, “this disease should not happen even to an enemy.”
The health and daily routine were severely affected when the symptoms are on its peak. One caregiver revealed,
“The time is the hardest and affect the daily routine of the family members for at least three months.” A caregiver said, “ It affect 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”.
Inspite of various strife and torture of various kinds care givers did not give up hope in patients and their likelihood to be normal one day. They reposed faith in both treatment and doctors besides, god the almighty. It was evident through FGD that care givers were perseverant and resolute to get their patient cured.

Care giving an art or emotional bondage,
Another concern, which came up during discussion was, who will take care of the patient in caregiver’s absence and who will take the responsibility of dispensing medicines to the patient. All caregivers were concerned and equivocally said that there has to be someone at home in their absence. With improvement in the condition of the patient a sense of sincerity towards intake of medicine was evident. The prime cause of such commitment was a fear of relapse, if, medicine is not adhered with they may face the music once again.

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.”

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.”

Mother of a schizophrenic 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.”

Wife of a schizophrenic 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.”

During FGD it was discussed that whether fatigue or frustration while dealing with their patient over a long period of time ever led to an idea of abandoning him or her, Most of the caregivers emphatically said, “NO”.

Brother of a patient suffering from bipolar disorder said, “No, because we are the same blood. We have blood relation.

Father of a bipolar disorder patient said, “The time when the illness/disease is on its peak, we do think to leave him for good. But after sometime we think, he is not doing it intentionally.”

Similarly, brother of a patient said, “Sometimes we feel that we should leave him on his own. But this is because of frustration only.”

One old lady who is providing care to her son said, “Why God has given us this punishment.”  The issue was raised during FGD as whether, the disease is the result of the bad deeds in past, there were varied opinions. Caregivers from low socio-economic status and having low education thought that it is because of either their bad deeds or the deeds of the patient in the past.

But those who were educated did not think so. Father of a patient said, “We have to think on this line, Yes, it is the result of our bad deeds of the past.”

Another caregiver who was a school teacher, said, “I think this is a disease and can happen to anybody.” One caregiver said, “No, I don’t believe in the past, I believe in the present. It is a disease and we have to treat it.”

Another caregiver said, “I don’t know about God but I believe in the present.”

It was clear from the FGDs that patients were having no affinity for gender of the care giver, for them who ever sympathized were close enough to be relied and confide upon.

Empathy of caregivers for the patient was quite clear in the FGDs. Brothers, fathers, mothers and spouses were candid enough to admit that the fatigue and frustration of care giving was paramount in their life but it was their duty to take care of these people. Many patients improved and they were taking medicine of their own and the care givers were delighted and said that their perseverance and empathy only made the patient apparently normal. Though, care givers were facing humiliation in one or the other platform (even the close ones sometimes did not spare them) but were not deterred and remained steadfast in duty.

Intervention Sessions:
It was important to involve the patients actively along with their care givers to get a comprehensive picture of the improvement of the status of patient and well being of care givers. Intervention was done for the same group of care givers and their patients who were part of the FGD. No ethical norms were violated before, during and after intervention (the institutional ethical committee clearance was obtained before initiation of the study).

Informative chart were made in vernacular Hindi (lingua franca of the care giver and patients was used) were prepared about schizophrenia and bipolar affective disorder. The materials used were standardized one. The details included the clinical symptoms and treatment, problems faced by caregivers, guidelines to caregivers in day to day management of the patients. The patients as well as caregivers were given a brief presentation including prevalence, clinical presentation, misconceptions and available treatments of severe psychiatric illness including schizophrenia. Role of family members in care of psychiatric patients, common problems faced by the family members in day to day care of their patients were also discussed.

Educational sessions were conducted during the same period when FGDs were conducted. A total of 22 educational sessions were organized. The sessions were made interactive so that caregivers could put questions about the problems. 8-12 patients were called for every educational sessions. Each session was attended by 4-5 patients and 6-8 caregivers. Sessions have been organized at a frequency of twice a month. The participants were encouraged to clarify their queries. They were also asked to give their feedback about the usefulness of the sessions. The research team also tried to give solutions to the vexing issues which were agitated during the FGD. In general, the sessions were taken well by the participants, the patients. In the later sessions, the patients and caregivers were also given copies of some educational material.
The sessions were carried out in the morning hours, so that the visiting caregiver who would be able to attend the outpatient service on the visit (the patient may or may not be accompanying) and also take the prescribed medications from the dispensary. The time was often overlapping with the outpatient hours, where the assessments for the study were also being carried out. Therefore, all the patients and caregivers could not be covered up in the educational (intervention) sessions.

The team was simultaneously monitoring the type and level of improvement in care giving and coping strategy of the care givers during intervention sessions in the later period. Monitoring was done by enquiring about the way the care givers been interacting with their patients after attending the session (whether they expressed the same problem for coping or no such repetition). It was encouraging to see the grimace free faces of care givers.


Discussion and Conclusion
The study helped assess the burden and coping strategies used by caregivers of patients with schizophrenia and bipolar affective disorder (BPAD) in a prospective design. While carrying out the study different psycho social issues came up regarding care giving and strategies to cope up with the burden of care giving. It was felt appropriate to discuss the finer qualitative nuances involved in routine interaction of caregiver with the patient. These details were essential to know more about the disease and its progression and people’s perception (both the family members, relatives and neighbours) of the individual and their sickness. Education session and its impact on the enhancement of care givers knowledge in presence of the patient and the team of researcher was incremental to the body of knowledge regarding coping with the ailment and strategies adopted by the care givers.

It was quite clear that the care givers 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 keen interest and involvement of the group could help improve the over all situation in steady pace. ( Janzen 1978).

It 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. Although, the size of the group is directly proportional to the social status of the sick. It was evident that patient of relatively better socio economic footing were well cared for. Though, in the Indian situation such affection causes difficulties to deliver goods in the institutional setting (as they tend to create lot of noise and confusion) to the patients at times. However, its core members are mainly from the family and the extended kin group of the sick. As in other illnesses, in mental illness also, the TMG principally comprises the family members, who take all decisions regarding the treatment and rehabilitation of the mental patient. Apart from the family, there are no institutions of the traditional type concerned with the care decisions for people with mental illness.

In natural course in India support to mental health cases are very much in asking. Thousands of mentally sick persons, some of them afflicted quite seriously, who are neither on medication nor are institutionalized, lead the life of a destitute. Discarded by their families and uncared-for by any voluntary agency, their existence is woefully dehumanized. Secondly, joint families are 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 job or extremely limit his 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. Too a large extent this principle holds true for the interdependency of spouses on one another during crisis (i.e. negotiating with mental illness). FGDs have 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 looks down upon the patient and the care givers. Even the courtesy call or meeting in social gathering in the presence of such care givers were not an 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. By considering the turning points in the joint career of caregivers and ill family members, analysis moves beyond studies that link emotions to particular incidences, momentary encounters, or discreet events. Four interpretive junctures in the caregiver-patient relationship are identified. Before diagnosis, respondents experience emotional anomie. Diagnosis provides a medical frame that provokes feelings of hope, compassion, and sympathy. In the present situation the intervention sessions raised hope and confidence of the care givers, as their patients were not only diagnosed but also supported through different sessions.

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. Decreased involvement and no guilt feeling of the care giver was not allowed to creep in by constant boosters of different types (mainly moral) by the research team. Karp's thesis is that the moral boundaries of care giving 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, (4) all I can do is cope with it. The FGDs were replete with such coping strategy and as a result the intervention running over twenty sessions and adherence to the suggestions by the care givers 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 diseases of severe chronicity i.e 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 care givers under such situation to handle the burden of coping strategies need to evolved in consultation with experts (both clinicians and social workers and allied scientists)and administered there off. The caregivers health status and moral are required to be kept in good state so that the patents are taken care off appropriately.


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