Copyright © 2011 ADG, SA. All Rights Reserved.
A Private Non-Profit Agency for the good of all, published in the UK & Honduras
Family
Burden and Rehabilitation Need of
Beneficiaries of a Rural Mental Health Camp in a Southern State of India
Prafulla S
Research
Assistant, Dept. of Psychiatry, National Institute of Mental Health & Neuro
Sciences, Bangalore
Suman
K Murthy
Reader
& HOD, Dept. of Studies in Social Work, Pooja Bhagavat Memorial Mahajana
PostGraduate Center, Mysore
Dharitri
Ramaprasad
Professor,
The Richmond Fellowship Postgraduate College for Psychosocial Rehabilitation,
Bangalore
Citation:
Prafulla S, Murthy SK, Ramaprasad D. (2010). Family Burden and Rehabilitation
Need of beneficiaries of a Rural Mental
Health Camp in a Southern state of
Correspondence
Dharitri Ramaprasad
The Richmond Fellowship Post Graduate College for Psychosocial Rehabilitation
“Chetana”, #40-1/4, 6th Cross, Vjpeyam Garden,
Ashoknagar, Banashankari I stage,
Bangalore-560 050
E-mail: dharitri_r@yahoo.co.in
Abstract
Family care is the predominant type of care in
Key Words: Rehabilitation Need, Family Burden, Chronic Mental Illness,
Psychosocial Rehabilitation.
Introduction:
Community
mental health movement in
Similar findings have been reported from the rural areas of other states in
Based on the results of experiments in integrating mental health care with
general health care system the National Mental Health Program was
formulated. This program has stimulated initiatives for mental health
care among professionals, nongovernmental organizations, and citizens using a
variety of community based care programs (Murthy, 1998).
Despite the best intentions and governmental programs, it has to be noted with
concern that majority of Indian population still do not have access to mental
health care. The responsibility for providing care lies with the
families. The families as caregivers take the burden of care.
Therefore, they have to be provided with effective rehabilitation services for
the ill person, which would ease the burden faced by the families and help the
patient lead a more productive life.
Burden refers to the presence of problems, difficulties or adverse events which
affect the lives of individuals who are primary care givers. The shift
from hospital based care to community based care has resulted in emotional and
financial burden and this affects the lives of other members in the family.
In
In one of the studies Nautiyal (1993) found 65% of the study sample reported
mild to moderate degree of objective burden and 60% reported severe subjective
distress. Negative orientation towards outcome of mental illness was
associated with objective burden. In her study financial difficulties
were perceived as most burdensome.
Although families have traditionally been the caregivers for mentally ill persons,
this situation is changing, creating a need for more structured interventions
with families. The concern of the parents and significant other family
members has led to their involvement in rehabilitation of the affected
persons. The rehabilitation processes have to be flexible and contingent
upon the changing needs of the patient over a period of time. This makes
it necessary to carefully study the needs of the patients and plan the
interventions based on these needs. Nagaswamy., et al (1985) found varied
needs expressed by the families in their study of subjective rehabilitation
needs. The needs were in the area of employment, vocational training,
accommodation, help for family and leisure time activities. Other
studies (Padmavathi., et al, 1998; Banerjee and Roy., 1998; Naik., et al, 1996)
have reported strong need for public education and awareness programs for
developing awareness about the nature of mental illnesses and their
treatment. This would facilitate seeking early treatment and reduce
chronicity.
This highlights the importance of understanding the needs of the families and
the burden faced by them to plan effective Mental Health Programs as well as
psychosocial rehabilitation services.
Objectives
1. To
assess the burden faced by the families of the beneficiaries of the rural
mental health camp.
2. To
assess the need for rehabilitation of the beneficiaries of the rural mental
health camp.
Methodology
It is an
explorative and a descriptive study. The sample was drawn from the
beneficiaries of rural mental health camp conducted by ‘Pragati’, RFS(I)
Sidlaghatta branch, in a rural area of Karnataka. 50 respondents were selected
using systematic random sampling technique from the list of beneficiaries of
the camp. Persons with mental retardation, epilepsy, minor mental illness
and major physical illness were excluded from the study.
Tools used
1. Socio-demographic
data sheet.
2. The
Interview Schedule for the Assessment of Family Burden by Pai and kapur
(1981). This interview schedule has 26 items to assess burden in seven
categories of Objective Burden and 1 item on Subjective Burden. The seven
categories of objective burden are; Financial burden, Disruption of routine
family activities, Disruption of family leisure, Disruption of family
interaction, Effect on physical health of others, Effect on mental health of
others, Other burden.
3. Rehabilitation
Needs Assessment Schedule by Nagaswami., et al (1985). This assessment
schedule is designed to collect purely qualitative information on the
subjective rehabilitation needs. The questions are open ended and cover
the following areas: Employment, Vocational training/guidance,
Accommodation, Leisure time activities, psychological attitude modification,
Skills training, Any help needed by the family, Any other area.
Caregivers in the
families were interviewed using the above mentioned tools.
Results
and Discussion
The
present study aimed at assessing the burden faced by families of chronic
mentally ill persons and their need for rehabilitation in a rural mental health
camp.
Family
Burden
Most
of the caregivers (60%) were in the age range of 45 yrs. to 65 yrs.
Others (40%) were in the age range of 25 yrs. to 45 yrs. Majority of the
caregivers of the patients were parents (44%). 50% of the caregivers were
illiterates. 60% of the caregivers were women and 40% were men.
Female patients were deserted by the spouses and had to be taken care by
the parents, whereas married men who had the illness were looked after by their
wives. 72% of the patients had a diagnosis of schizophrenia, 16% were
diagnosed as having bipolar affective disorder and 12% had psychosis.
The scores on burden scale show that the families faced mild to moderate burden
in taking care of their mentally ill family member. The mean score of
subjective burden score was 1.2 which shows moderate burden. The highest
burden was experienced due to disruption of family activities. The ill
member not attending to their routine activities like work, school/college and
also not helping in the household chores but needing to be helped had caused
disruption of the normal activities. Caregivers had to spend considerable
amount of time attending to the ill member at the cost of their essential
routine work/duties. This also results in neglect of the needs of other
family members.
Table 1.
Scores on the Family Burden Scale
|
Domain |
N |
Mean |
S D |
|
Financial Burden |
50 |
1.2 |
0.50 |
|
Disruption of family
activities |
50 |
1.4 |
0.51 |
|
Disruption of family
leisure |
50 |
1.0 |
0.04 |
|
Disruption of family
interaction |
50 |
1.1 |
0.52 |
|
Effect on physical
health of others |
50 |
1.0 |
0.67 |
|
Effect on mental
health of others |
50 |
1.0 |
0.72 |
|
Subjective Burden |
50 |
1.2 |
0.50 |
Another study comparing
family burden among rural and urban population (Rao, 1988) reports that urban
families experienced greater burden than rural families due to disruption of
family activities in the sample of their study. Caregiver burden was
found to increase when the ill person’s disability was more.
Financial Burden was the second most highly reported burden faced by the
families. The experienced financial burden was due to varied
reasons. Significant of these were loss of ill member’s income as a
result of loss of job due to illness, loss of income of other member of the
family (family member had to stop working in order to stay at home with the ill
member) and the cost of treatment including cost of transportation to the
treatment center. This was compounded by the expenditure made on
transport, faith healing, visiting temples etc. There were some who
reported that they had borrowed money for the treatment purpose. Most of
the families in the study lived a lower middle class life. Gautham and
Nijhawan (1984) reported similar results specifying that families of persons
suffering from schizophrenia face more financial burden.
All other domain scores, i.e. Disruption of family interaction, disruption of
family leisure, effect on physical health of others and mental health of others
showed a mean score of 1.1 and 1.0 which indicates moderate burden.
Though all these areas did affect the daily activities of the family, they did
not perceive it as severe burden.
Rehabilitation Needs
Needs were expressed in almost all the rehabilitation domains (Table
2). Most of the families expressed needs in the areas of ‘Help for
the family’ (78%), ‘Employment and Occupation’ (76%), Psychosocial attitude
modification’ (68%), ‘Skills training’ (66%). Nagaswami, et al, (1985) in their
study on an Indian population from a different state, report similar
results.
Table 2. Scores on Rehabilitation Needs Domains
|
Need
Domains
|
N |
% |
|
Occupation
and Employment |
38
|
76
|
|
Accommodation
|
7
|
14
|
|
Attitude
modification |
37
|
68
|
|
Leisure
activity |
17
|
34
|
|
Skills
training |
33
|
66
|
|
Help
for family |
39
|
78
|
|
Other
area of help for ill persons |
33
|
66
|
Families expressed need for financial support, help in finding employment for
other members in the family, educating younger members in the family and access
to treatment services, medical as well as psychiatric treatment. This is
in keeping with the burden experienced by the families.
There is a dire need for help in finding occupation and employment. In
the present study 26% of the families wanted vocational guidance and help in
finding an employment for the ill person in recovery. 26% of them
preferred part time open employment options and only 12% expressed need for
full time employment. 24% of them were particular about sheltered employment
options either full time or part time, as suitable. Hansson et al (1995)
assessed the needs on psychiatric patients using the Camberwell Assessment of
Needs (CAN) tool. They found duration of illness being associated with
the pattern of needs. Participants with longer duration of illness (>4
years) more often had need in the area of employment, daily activity and
accommodation.
Family members were concerned about the attitude of relatives, friends and
neighbours towards the ill person and the family. They reduced
socializing with the ill person as well as the family since the onset of the
illness. The families felt stigmatized as others in the community and
society harboured negative attitude towards them. In the present study 68%
of the families expressed the need to change/modify people’s attitude towards
mental illness and those suffering from mental illness. The rural
population has little knowledge regarding mental illness which needs to be
addressed. Negative attitude towards mental illness has been reported in
many studies (Raguram et al, 1996; Thara and Srinivasan, 2000; Raguram et al,
2004; Thara et al, 2003a,b).
Another domain of felt need was Skills training (66%). The training
required was in the area of activities of daily living and personal care,
social skills (communication and interpersonal relations), and problem solving
skills. The Skills training is an important component of psychosocial
rehabilitation program. Many studies (MacCarthy., et al, 1989; Murray.,
et al, 1996; Ralston., et al, 1998; Ochao., et al, 2003) have reported need for
Skills training in areas of personal and domestic tasks like personal care,
housekeeping, budgeting, communication and social interaction and
relationship.
As for the need to have a structured leisure time activity very few of the
families felt the need for any specific help. Most of them were satisfied
with the way leisure time was spent i.e. listening to radio, and watching
television except 14% of them who expressed specific need to be
addressed. Types of leisure activities desired were physical exercise and
outdoor games, indoor games, and organized group activities. Gandotra.,
et al. (2004) studied the rehabilitation needs of in-patients and outpatients
with schizophrenia. They found majority of the outpatients had some need
in the area of leisure time activities.
It was interesting to note that accommodation was not seen as a major need by
most of the families. Most of the families were happy about the existing living
arrangement. Only 14% of them expressed accommodation as a need to be looked
into. The need was in terms of alternative arrangement like hospitals,
institution or a residential facility in the community. Nagaswami., et al
(1985) also found only 6.8% of the ill members and families indicating need for
accommodation. This is unlike other countries where accommodation is a
major concern (Winefield and Hearvey,, 1994; Hansson., et al, 1995).
These studies also report that patients, whom the caregivers preferred that
they live in supervised accommodation, were described as less skilled in
self-care and communication and more turbulent, while those whom the caregivers
preferred that they live with them were more responsible.
Conclusions
The
present study aimed at understanding the burden of care and the rehabilitation
needs of families of persons with chronic mental illness in a rural
population. Majority of the respondents expressed mild to moderate burden
in various domains. Highest burden was perceived in the domain
‘disruption of family activities’ followed by ‘Financial burden’. As for
the rehabilitation needs, all the respondents expressed needs in one area or
the other. Majority of the respondents felt a need for some help for the
family which included easy access to treatment, financial support, and other
basic facility for other members. Other major need expressed was
employment, occupation and attitude change.
These findings bring attention to the immediate urgent need to develop
comprehensive mental health programs for the rural population. This
should include both public education activities as well as organizing treatment
facilities which are easily accessible, and cost effective in the rural areas
of
References
Banerjee, G. and Roy, S. (1998) Determination of help-seeking
behaviour of families of schizophrenic patients attending a teaching hospital
in
Gandotra, S., Paul, S E., Daniel, M., Kumar, K., Raj, H A., and
Sujeetha, B A. (2004). A preliminary study of rehabilitation needs of
in-patients and out-patients with schizophrenia. Indian Journal of
Psychiatry, 46(3), 244-55.
Gautam, S., and Nijhawan, M. (1984) Burden of families of
schizophrenic and chronic lung disease patients. Indian Journal
of Psychiatry, 26(2),156.
Hansson, L., Bjorkman, T., and Sevnsson, B. (1995). The
assessment of needs in psychiatric patients: Inter-rater reliability of the
Swedish version of Camberwell Assessment of Needs instrument and results from a
cross sectional study. Acta. Psychiatrica Scandinavica 92: 185-93.
Kapur, R.L. (1975). Mental health care in
MacCarthy, B., Lesag, A., Brewin, C.R., Burgha, T.S., Mangan, S.,
and Wing, J.K. (1989). Needs for care among the relatives of long term
users of day care: A report from the Camberwell high contact survey. Psychological.
Medicine. 19, 725-36.
Nagaswami, V., Valecha, V., Thara, R., Rajkumar, S., and Menon,
M.S. (1985). Rehabilitation needs of schizophrenia patients. Indian
Journal of Psychiatry, 27(3), 213-20.
Naik, A.N., Parthasarthy, R., and Issac, M.K. (1996).
Families of rural mentally ill and treatment adherence in district mental
health programme. International Journal of Social Psychiatry. 42, 168-72.
Nautiyal, S. (1993). Orientation towards mental illness
and its relation to severity of symptoms and burden perceived.
Unpublished M.Phil Thesis,
Ochao, S., Haro, J.M., Aotonell, J., Pentas, A., Teba, F.,
Marques, M., et.al. (2003). Met and unmet needs of schizophrenia patients
in Spanish sample. Schizophrenia. Bulletin. 920, 201-10.
Padmavathi, R., Rajkumar, S., and Srinivasa, T.N. (1998).
Schizophrenia patients who were never treated – a study in an Indian urban
community. Psychological Medicine. 28, 113-17
Pai, S., and Kapur, R.L. (1981). The burden on the family of
a psychiatric patient: development of an interview schedule. British
Journal of Psychiatry, 138: 332-35.
Raguram, R., Weiss, M.G., Channabasvanna, S.M., and Denis,
G.M. (1996). Stigma, depression and Somatization in
Raguram, R., Raghu, T.M., Vounatsou, P., and Weiss, M.G. (2004).
Schizophrenia and the cultural epidemiology of stigma in
Ralston, G., Beesley, S., and Bogue, J. (1998). User’s needs
and satisfaction with community based mental health service.
Psychiatry Bulletin. 22, 473-76.
Ranga Rao (1989). A comparative study of disability and
family burden of schizophrenia patients in rural and urban areas. MD
thesis,
Reddy, G. N. N., Channabasvanna, S.M., and Srinivasa Murthy, R.
(1986). Implementation of National Mental Health Programme. NIMHANS
Journal. 4, 77-84.
Srinivasa Murthy, R. (1986). A decade of rural mental
health care.
Srinivasa Murthy, R. (1987). Status paper on delivery of
mental health services in
Srinivasa Murthy, R. (1998). Emerging aspects of Psychiatry
in
Srinivasa Murthy, R. (1992). Integration of mental health
with primary health care – Indian experience. In: Srinivasa Murthy,
R., and Burns, B.J (Eds.). Community Mental Health. National
Thara, R. (2000). A Community health programme in rural
Tamil Nadu. http://www.dinf.ne.jp/doc/english/asia/resource/apdrj/213jo0300/z13jo0310.html
Thara, R., Kamath, S., and Kumar, S. (2003a). Women with
schizophrenia and broken marriages- doubly disadvantaged? Part I: Patient
Perspective. International Journal Social Psychiatry 49, 225-232.
Thara, R., Kamath, S., and Kumar, S. (2003b). Women with
schizophrenia and broken marriages- doubly disadvantaged? Part I: Family
Perspective. International Journal Social Psychiatry. 49, 233-240.
Wig, N.N., Srinivasa Murthy R., and Manchina, M. (1981).
Reaching the unreached-II – Experiments in organizing rural psychiatric
services. Indian Journal of Psychological medicine. 4, 47-52.
Winefield, H.R., and Harvey, E.J. (1994). Need of family
caregivers in chronic schizophrenia. Schizophrenia Bulletin. 20(3), 557-67