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.
References
Brown,
S. & Biirstwistle, J. (1998). People with schizophrenia and their
families. Fifteen- year 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.
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.
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.