The International Journal of Psychosocial Rehabilitation

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
India.  International Journal of Psychosocial Rehabilitation. Vol 15(2) 5-11



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
India.  The concern of the parents and significant family members led to their involvement in rehabilitation of the affected persons.  Chronic mentally ill population is a diverse group comprising of the patients with different problems of varying degree of disability and different levels and types of needs.  Assessing the rehabilitation needs and the burden of care faced by the families is an important component constituent of planning effective mental health services.  The present study aims at assessing the burden faced by the families and the needs for rehabilitation among the beneficiaries of a rural mental health camp in South India.  Using the Interview Schedule for the Assessment of Family Burden and Rehabilitation Needs Assessment Schedule, 50 care givers were interviewed.  The results indicated mild to moderate objective burden experienced by the families.  All respondents had some need or the other pertaining to the rehabilitation of the ill family member.


Key Words: Rehabilitation Need, Family Burden, Chronic Mental Illness, Psychosocial Rehabilitation.



Introduction:

Community mental health movement in India began about two decades ago, especially the rural programs.  Involving the community in the developmental activities, especially in the health sectors was given prime importance.  This gave impetus to various rural mental health programs.  More than 70 percent of the 960 million people in India live in rural areas.  There are more than half a million villages of differing population sizes.  Majority of these villages have problems of communication and have limited regular access to basic needs like sanitation and water supply (Reddy, et al, 1986).  One of the studies in a rural area reports that 90% of the persons with schizophrenia and epilepsy were ill for more than one year at the point of contact (Murthy, R S, 1986).
 
Similar findings have been reported from the rural areas of other states in
India (Wig et al, 1981; Kapur, et al, 1978).  Almost all of them had sought help from locally available traditional healers (Murthy, 1987, Kapur, et al, 1975) and a few had contacted modern medical services.  Later systematic studies of mentally ill in the rural areas show that problems of transport, cost of treatment, lack of awareness of the available help and wrong beliefs in supernatural causation had been the main reasons for the large majority of the mentally ill persons to “suffer in silence” (Murthy, 1987).
 
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
India 80% of the mentally ill live with their families, and only 5 to 10 percent receive professional psychiatric care.  As majority of India’s population lives in remote rural areas, about 75 percent of families who care for their mentally ill kin have little or no access to medical facilities.  Families in this situation live under constant stress of societal stigma and the challenge of providing high cost 24 hours care (Murthy, 1980). 
 
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
India.

 


References

Banerjee, G. and Roy, S. (1998) Determination of help-seeking behaviour of families of schizophrenic patients attending a teaching hospital in India: an indigenous explanatory model.  International Journal of Social Psychiatry, 44,199-214.

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 India: a study of existing patterns and their implications fro future policy.  British. Journal of psychiatry, 127, 286-98.

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.

Murray, V., Walker, H.W., Mitchell, C., and Pelosi, A.J. (1996). Needs for care from a demand led community psychiatry services: A study of patients with major mental illness.  British Medical. Journal. 312, 1582-86.

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, Bangalore: National Institute of Mental Health and Neuroscience.

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 South IndiaAmerican. Journal of Psychiatry, 153, 1043-49.

Raguram, R., Raghu, T.M., Vounatsou, P., and Weiss, M.G. (2004). Schizophrenia and the cultural epidemiology of stigma in Bangalore, India.  The Journal Nervous and Mental Disease. 192(11), 734-744

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, Bangalore.

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. Bangalore: NIMHANS.

Srinivasa Murthy, R. (1987).  Status paper on delivery of mental health services in India (1947-1987).  New Delhi: Indian Council of Medical Research.

Srinivasa Murthy, R. (1998).  Emerging aspects of Psychiatry in India. Indian Journal of  Psychiatry, 40, 307-310.

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 Institute of Mental Health and Neuro-sciences, Bangalore Pub. No. 29, 111-142.

Thara, R. (2000).  A Community health programme in rural Tamil Naduhttp://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

  





Copyright 2011 ADG, SA. All Rights Reserved.  
A Private Non-Profit Agency for the good of all, 
published in the UK & Honduras