A study was conducted to examine the facilitators and inhibitors to 'coping' by parents who have children with mental retardation. The sample consisted of 218 parents who were studied in three centres from different parts of India. The patterns of facilitators and inhibitors to coping elicited during the examination of parents are discussed in this paper. The authors suggest that the results of this study may provide directions for the establishment of rehabilitation services in the future.


INTRODUCTION

Every human being has to learn to cope with various situations from time to time in order to survive. However, how well one copes will vary from one individual to another, depending on the internal strengths and external resources. Having a child with mental retardation in the family demands a lot of adjustments and coping on the part of parents. The impact of this on each parent may be quite individualised, and it can affect their personal, family and social lives in varying degrees (1,2,3). Of late, factors that affect adjustment in families with a mentally retarded child, have been investigated in the wider context of the child, the family and resources available within the social environment. The ability of the individual to cope with this situation depends on his internal resources such as faith in God, energy, self-determination and perception of the situation, and the external resources such as support from family members, relatives, friends, neighbours, professionals, community and Governmental policies and programmes. Families who are successful in coping with having a mentally retarded child, are able to effectively mobilise their internal and external resources to deal with the special needs of their child (4).

Most of the inhibitors to effective coping, have been derived from the research on facilitators to effective coping. For example, better marital satisfaction or support from the husband, is an important facilitator to effective coping by mothers. Conversely, a less satisfactory marriage and less support from the husband would be inhibitors to effective coping. Baxter (5), Butler et al. (6), and Morris (7) have identified some inhibitors to effective coping, namely, additional financial hardships, stigma, extraordinary demands on time, difficulties in caregiver tasks like feeding, diminished time for sleeping, social isolation, less time for recreational pursuits and difficulties in managing behaviour problems.

The aim of the present study was to examine facilitators and inhibitors to coping by parents who have a child with mental retardation. There is little agreement with regard to the definition of the term "coping". For this study, "coping" is defined as an activity that helps in meeting one's needs (8).

METHODOLOGY

The sample for this multi-centred study was drawn from Delhi, Thiruvananthapuram and Bhopal. The research was directed by the National Institute for the Mentally Handicapped, Secunderabad. Three non governmental organisations namely, Balavikas Institute, Thiruvananthapuram , Digdarshika Institute of Rehabilitation and Research, Bhopal, and Navjyoti Centre, New Delhi participated in the study. Letters requesting parental participation were sent by the centres, and responses were received from 185 families. The parents to be studied were chosen purposively and consecutively, using inclusion criteria that were agreed on by the investigators, till each centre had 40 families for the sample. Two hundred and eighteen parents of mentally retarded children from 120 families were thus studied. The inclusion criteria were: 1) the child with mental retardation (IQ 70 and below) should live with the biological parents at home; 2) the sample of families should be distributed equally across the various age groups of mentally retarded children, i.e., birth-6 years, 7-12 years, 13-18 years, 19 years and above, thus making a total of 30 families in each category; 3) a minimum of 25% of the sample should be families of children who had dropped out from services, or had not received any services; 4) a minimum of 25% of the sample should be families of children living in rural areas and slums

All interviews were conducted by the research staff at the homes of the subjects, in the language of their preference. Data collection was undertaken by the research staff who included a research officer with a Master's degree in Rehabilitation and Special Education, and two research assistants with M. Phil. in psychology. Interviews were conducted using open ended questions to elicit the facilitators and inhibitors to effective coping. Each of the parents was asked two questions : 1) "What are the things /events that have helped you to cope with the situation because of having a child with mental retardation in the family?"2) "What are the things/events that did not help you to cope with the situation because of having a child with mental retardation in the family?" The interviews lasted about 15-30 minutes each. The responses of parents were taped with prior permission, transcribed, coded, categorised and analysed. Inter-rater reliability between the first and the third authors was established during the process and was found to be acceptable. When a parent gave a number of responses which belonged to a single category, they were scored only once. For example, in the area of inhibitors, one parent reported "loss of support from husband" and "loss of support from son". Both these responses were rated under loss of support and given a score of one. The data from the sample of 218 parents were analysed using percentages and chi-square tests.

RESULTS

The characteristics of the sample are given in Table1.1, Table 1.2 and Table 1.3.

Table 2 provides the description of categories of facilitators that helped parents in coping with the situation of having a child with mental retardation.

Table 3 provides a description of categories of inhibitors that did not help parents in coping.

DISCUSSION

The results indicate that parents reported "Physical support" from within and outside the family as the most important facilitator, followed by "Professional support", "Financial support", "Faith in God", "Working out problems on one's own", "Self determination" and others. The parents reported external supports provided by others as a greater facilitator than their internal coping skills such as "Faith in God", "Working out problems on one's own", "Self determination" and "Inspiration from spouse or Guru". Thirty eight parents (17.4%) reported that nothing had helped them in coping.

Mothers reported "Physical support - family" as a significantly greater facilitator in comparison to fathers. Since mothers are more under pressure to balance child care needs and household chores, physical support from the family is reported as a relief. Fathers reported "Inspiration - spouse" and "Institutional support" as more important facilitators than mothers. This suggests that some wives are able to emotionally support their husbands and infuse confidence in them to face the difficult situation. Less number of mothers reported that fathers could also contribute in a similar way. "Mutual support - spouse" was reported as a facilitator to coping by parents who were more educated. It is possible that the sharing at emotional and cognitive levels between spouses increases with higher educational levels. "Professional management", such as help in managing behaviour problems, training in activities of daily living and timely advice on diagnosis was found to be a significant facilitator by parents of children below 6 years of age. "Absence of behaviour problems" was reported as a significant facilitator by parents of children above 18 years of age. In cases of severe mental retardation, internal coping strategies become less important as facilitators for the parents. "Faith in God", "Working out problems on one's own", and "Self determination" are reported more commonly as facilitators by parents of children with mild or moderate mental retardation than by parents of children with severe mental retardation. It is possible that parents of mildly and moderately mentally retarded children continue to nurture the hope of normalcy for their children, making them more susceptible to seek support from God, and to make greater self determined efforts. Financial supports are reported more commonly as facilitators by parents of severely and profoundly retarded children due to the fact that the financial burden on them is more. Parents of children with profound and severe mental retardation have also reported "Institutional support" as a significant facilitator.

Parents having mentally retarded children with behaviour problems report "Mutual support - Spouse" and "Physical support" from family and others as very important facilitators. The presence of behaviour problems in children is known to produce greater stress for parents. Managing such problems requires more efforts and skills in handling them, and hence such supports would be considered as important facilitators. "Working out problems on one's own" and "Guru's inspiration" are reported as significant facilitators by more parents from non-nuclear families. This could be because living with a larger number of people could lead to more adjustment problems, that requires parents to work out problems on their own. More parents from urban areas reported "Working out problems on one's own", "Mutual support - spouse", "Physical support - family/others" and "Institutional support" as facilitators, than parents from non-urban areas. " Professional support" was reported to have significantly helped parents from non-urban families to cope better. The pressures of living in urban areas may lead to greater need for external support. Parents with a monthly income of Rs. 1000/- and above, reported "Inspiration - spouse", as a more important facilitator than parents in the lower income group. Irrespective of the income, parents reported external supports such as "Physical support - family", "Financial support" and "Professional support" as more important facilitators than internal coping strategies like "Faith in God", "Working out problems on one's own", "Self determination", and inspiration from others. More parents from higher income groups reported internal coping methods as important facilitators.

The two most common inhibiting factors affecting coping reported by the parents are "Behaviour problems" in their children, and "Lack of acceptance" of the mentally retarded child, particularly by paternal grandparents, neighbours, friends, relatives and others in the community. "Financial constraints" was ranked third, and "Problems related to professionals" was ranked fourth which includes "Wrong advice about the child's condition", "Lack of information about the condition", "Negligence on the part of hospital at the time of delivery", "Lost hope in doctors", and "Not enough time dedicated to the child". "Poor physical health of the family members" was ranked next followed by "Wrong guidance by medical doctors", "Loss of support" due to death in the family, "Family problems", "Over indulgence by others/outsider", "Lack of information", etc.

Significantly more mothers than fathers reported "Lack of acceptance" as an inhibitor to coping. As mothers are the usual caretakers of their children, they probably are more sensitive to the acceptance or rejection of their child by others. Also, it is the mothers who generally face the greater burden of child-rearing, and thus require more help and support from others. When that is not forthcoming, rejection is experienced more by the mothers. Some mothers have reported greater rejection especially from the paternal grandmother and the father of the child. In India, the mothers are often blamed by the paternal grandparents or the father for giving birth to a child with mental retardation. "Financial constraints" was found to be an important inhibitor by less educated parents. Parents of mentally retarded adults reported "Lack of facility" as a more significant inhibitor in comparison with parents of younger children. At present in India, services for mentally retarded adults are inadequate. Parents of male mentally retarded children reported greater frustration because of inhibitors such as "Wrong guidance" and "Lack of information" than parents of female children. This may be because parents in India tend to seek services and information more for their male children than female children. Parents having children with mild, severe or profound mental retardation reported "Poor Physical health of family members" as an inhibitor in coping. In a related report by Peshawaria et. al (9) using the same sample, it was found that parents of mild mentally retarded children reported significantly greater `emotional reactions' as result of having a mentally retarded child in the family. The physical health problems of the family members could probably be linked to these emotional reactions.

Parents of children with behaviour problems reported more inhibitors related to professionals' management of their children, such as "Wrong guidance" and "Problems related to professionals". To help parents manage behaviour problems, professionals require higher technical skills and training, and when they are unable to provide guidance, it can cause greater frustration to the parents. Parents residing in urban areas reported more inhibitors such as "Transferable jobs", "Wrong guidance", "Lack of information" and "Difficulties in admitting the child to school". Presently services for individuals with mental retardation in India are centred around urban areas, and as large a number as 200 districts still do not have any services.

CONCLUSION

The findings of the study provide some directions to establish rehabilitation services and to identify some challenges for the service providers. In order to increase family involvement in the rehabilitation of their members, the service providers need to plan for family support programmes which are useful for the consumers. Such programmes need to be tailored to meet the individual needs of each family. Some guidelines can be drawn from the findings of the present study to make these programmes more meaningful. Family support programmes need to provide timely physical, financial and emotional support as they can be quite useful to parents. Programmes which build skills in parents to manage behaviour problems in mentally retarded individuals will be helpful. Counselling aimed at increasing acceptance of a mentally retarded child in the family, especially by paternal grandparents, and at resolving family problems will be very useful. Parents will also need to be helped to develop personal skills and internal coping mechanisms which may equip them better to deal with situations arising from having a child with mental retardation. Government policies that improve access and coverage of services also facilitate better coping by parents. There is a need to improve the knowledge and practices of professionals involved in the delivery of services to the families of mentally retarded children, because they are considered as an important facilitator to coping by parents. Conversely, the professional who is found wanting in knowledge and skills can be an inhibitor.

REFERENCES

1. Bicknell J. The Psychopathology of Handicap. In: Horobin G, May D (Ed) Living with Mental Handicap : Transitions in the Lives of People with Mental Handicaps, London, Jessica Kingsley, 1988:22-37.

2. Gargiulo RM. Working with Parents of Exceptional Children : A Guide for Professionals. Boston, Houghton Mifflin, 1985.

3. Hornby G, Peshawaria R. Teaching Counselling Skills for Working with Parents of Mentally Handicapped Children in a Developing Country. International Journal of Special Education, 1991, Vol. 6, No. 2, 231-36.

4. Kirk SA, Gallagher JJ. Educating Exceptional Children. Boston, Houghton Mifflin, 1989.

5. Baxter C. Intellectual Disability - Parental Perceptions and Stigma as Stress. Unpublished doctoral dissertation, Monash University, Claton, Victoria, 1986.

6. Butler JA, Rosenbaum S, Palfrey JS. Ensuring Access to Health Care for Children with Disabilities. New England Journal of Medicine, 1987, Vol. 317, 162-165.

7. Morris MM. Health Care : Who Pays the Bills? The Exceptional Parent, 1987, 38-42.

8. Turnbull AP, Turnbull HR. Families, Professional, Exceptionality : A Special Partnership. Colombus, OH, Charles E. Merril, 1990.

9. Peshawaria R, Menon DK, Ganguly R, Roy S, Pillay RPRS, Gupta A. Understanding Indian Families Having Persons with Mental Retardation. Secunderabad, National Institute for the Mentally Handicapped, 1995.

ACKNOWLEDGEMENTS

We gratefully acknowledge the financial support given by National Institute for the Mentally Handicapped, Secunderabad, for conducting this research.

ASIA PACIFIC DISABILITY REHABILITATION JOURNAL (VOL.9, NO.1, 1998)

Produced by:
Shree Ramana Maharishi Academy for the Blind
3rd Cross, 3rd Phase, J.P. Nagar
Bangalore - 560 078, India
Tel : 91-80-6631076, Fax : 91-80-6638045
Printed at:
National Printing Press
580, K.R. Garden
Koramangala
Bangalore - 560 095, India
Tel : 91-80-5710658