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Indian Journal of Community Medicine

Family Burden in Mentally Handicapped Children

Author(s): G. Gathwala, S. Gupta

Vol. 29, No. 4 (2004-10 - 2004-12)

Introduction

With trends moving away from separating mentally retarded children from their home, increasing numbers of families are facing the need to deal with the problem of living with a deviant child. The burden associated with rearing such mentally handicapped children is multifold. Problems like disturbance of - routine, family leisure, family health, make steady drain on time, physical and emotional energy as well as financial resources of the parents. The present study was done to assess the quantum of these burdens on the families of mentally handicapped children.

Material and Methods

The study was carried out at the Regional Rehabilitation Center (RRHC), Rohtak. Twenty families of day boarders, attending RRHC for 5 hours/ day for a period equal to or more than one year were selected at random and taken for the study. A semi structured interview schedule based on items given by Pai et al1 was utilized to assess the burden on the families of mentally handicapped children. This was assessed under five broad categories which included - financial burden, burden on family leisure, burden on family interaction, burden relating to disruption of family routine and burden relating to the effect on physical and mental health of the family. A total of eighteen items were included under these five broad categories. The rating for each individual item was done on three point scale: severe burden = 2, moderate to mild burden = 1 and no burden = 0. The scores of each item were added to get the net total score as an indicator of severity of burden. During the interview an attempt was made to have both the parents present.

Results

Twenty families were studied in all. Each family had one mentally handicapped child who had been attending the RRHC for five hours per day for a period equal to or more than one year. There were nine boys and eleven girls. Eighteen children were between the age of five and fifteen, and two were beyond fifteen years. The diagnosis was Downs syndrome in eight, microcephaly with mental retardation in seven and cerebal palsy with mental retardation in five children. The intelligence quotient was between 36 and 51 in thirteen children and between 20 and 35 in seven. Thirteen families were nuclear and seven were joint. The education level of the parents was class ten, plus two of school or less in 70% of cases and graduation in 30% of cases. They belonged to a poor socioeconomic status with only 8 families having an income of more than Rs. 3,000 per month.

Sixty percent of families were severely burdened in relation to the item "Effect on the physical health of other family members" which included physical/ psychological illness and members of the family becoming depressed and weepy. Forty five percent of families felt severely burdened regarding family interaction and had almost ceased to interact with friends and neighbors. Forty percent had their family leisure severely affected. They had stopped normal recreation and had frequently abandoned planned leisure with the affected child using up most of their holiday and spare time. The family routine was felt to be severely affected in thirty five percent of cases, leading to neglect of rest of the family. Only 25% of families felt they were severely burdened financially. 20% had postponed planned activity due to financial constraints.

Table I : Family Burden

S. No. Item Burden Score
  Mean ± SD
1 Family Leisure 17 ± 3.0
2 Family Interaction 16 ±2.5
3 Physical Health of Other Family Members 23 ± 2.5
4 Financial Burden 11.25 ± 1.37 
5 Family Routine 15 ± 3.0

The highest score indicating the severest burden was obtained for the item "Effect on physical health of other family members" followed by "burden on family leisure" "effect on family interaction" and "family routine" (Table 1). The least score was obtained for financial burden. We however, believe that this may not be truly indicative of a low financial burden. Most families belonged to the poor socio economic strata. Extra arrangements were seldom made/ loans were mostly not available and therefore the scores of these items were falsely low.

Discussion

No family is prepared for the presence of a mentally handicapped child. Therefore the presence of a mentally handicapped child shakes the family to its foundations. The perceived conditions of the mentally handicapped child affects not only every member of the family but reactions of each of these will, in turn have their effect on each of the others including the mentally handicapped child. It thus affects family inter relationships and will also affect the practical aspects of the family life. In a study of the personality patterns, parents of mildly retarded children were found to have higher scores on scales of anxiety, phobia and depression2. A higher degree of neurotic traits were found in the mothers of retarded children. In our study too 60% of the families were severely burdened with the adverse effects on the family's physical and psychological health. Members of the family, frequently the mother, became depressed and weepy.

Latin mothers who had children with mental retardation were found to have increased depressive symptomatology3. These are indicators of the family reactions and it's less than adequate capacity to cope with the situation. Negative parental attitude especially a rejecting attitude, towards mentally retarded children has been reported by several authors4-7. These parental attitudes of rejection and indifference have been believed to be partly responsible for symptoms like hyperactivity, bed-wetting, temper tantrums, aggressiveness and antisocial behaviour in the child. This would again adversely affect not only interaction within the family but also outside it. Support for the parents of mentally retarded children to enable them to better cope with the stressful situation of having a mentally retarded child would, therefore, be of tremendous help. A recent study revealed that parental application for placement of children with severe mental retardation related significantly to high parental stress, low social support and a poor family environment8. Professional intervention for helping families to cope has been in the form of parent training programmes. These have been reported to improve the social behavoiour of the mentally retarded children and the parent's ability to cope with them9-11. Support systems such as day care services, respite care etc. would also be expected to help as would counselling services to look after the mental health of the caregivers. Family interactions was adversely affected in the present study with 45% of the families having ceased to interact with friends and neighbors and had become secluded. Family education programmes and community education programmes would positively influence interactions within the family and the family's interaction with others in the society.

Also, though some of the national schemes and programmes for disabled persons indirectly benefit their families, there are no family based schemes or programmes inspite of the pressing need for such services as the present study has shown. The implications drawn for social policy and intervention need further prompting and action on the part of all the professionals involved in the rehabilitation of the mentally handicapped and their families.

A number of welfare programmes have been envisaged for the mentally handicapped individuals by the govt and by voluntary organizations. However, as far as the families of these handicapped children are concerned, they have been ignored. This is where the community as a whole needs to intervene. The intervention should not be limited to the patient but extend towards his family as well, which also suffers to a great extent.

References

  1. Pai K, Kapur RL. The burden on the family of a psychiatric patient: development of interview schedule. Brit J Psychiat 1981 ; 138 : 332-335.
  2. Rastogi CK. Personality patterns of parents of mentally retarded children. Ind J Psychiat 1984, 26 (1) : 46-50.
  3. Blacher J, Shapiro J, Lopez S, Diaz L, Fusco J. Depression in Latin mothers of children with mental retardation : a neglected concern. Am J Mental Retardation 1997, 101 (5) : 483-96.
  4. Chautervedi SK, Malhotra S. A follow up study of mental retardation focusing on parental attitudes. Ind J Psychiat 1984, 26 (4) 370-6.
  5. Rastogi CK. Attitude of parents towards their mentally retarded children. Ind. J Psychiat 1981, 23 (3) : 206-9
  6. Prabhu G. The participation of parents in the services for the retarded. Ind J Mental Retardation 1968; 1(1) : 4-11.
  7. Jehan Q, Ansari Z. A study of certain psychosocial characteristics of mentally retarded children. Ind J clin Psychol 1981, 8(1) : 47-8.
  8. Rimmerman A, Duvdevani I. Parents of children and adolescents with severe mental retardation : Stress, Family resources, normalization and their application for out of home placement. Research in development disabilities 1996, 17 (6) : 487-94.
  9. Embar P. Workshop for the parents of the mentally retarded. Ind. J Mental Retard 1969, 2 (1) : 21-25.
  10. Parikh JK. An experiment with helping parents of development handicapped children. Child Psychiat Quarterly 1981, 14 (3) : 79-84.
  11. Siddique AQ, Sultana M, Ahmad P. Social class, parental attitude and acceptance of parental counseling in mentally retarded subjects. Ind J Clin Psychol 1984, 11 (2) : 22-28.

Department of Pediatric Medicine,
Pt BDS PGIMS, Rohtak.

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