Promoting resiliency in families of individuals with disabilities: Role of coping resources, family support, social participation and perceived burden

Pages: 599-608
Sangeeta Bhatia (Department of Psychology, Gargi College, University of Delhi, Delhi)

A severe disease or the birth of a disabled child may lead the family into the unexpected ‘career’ of ‘caregiving that causes the whole family to re-evaluate its ways of functioning. The situation may affect the parents’ marital relationship, their work and leisure-time activities, siblings and economy. A child’s disability brings the parents face to face with tasks such as helping the child to live with his or her illness or disability and to deal with problems brought along with the disability. At the same time, they have to encourage him/her in developing as normally as possible, and they have to achieve all this in such a manner that the family can function normally as an entity. One factor that will most likely contribute to whether or not this can be done is how the parents can cope with the stress caused by the situation. Research shows that some families manage well but others do not; therefore, it is important to understand what factors contribute to differences between families who seem to manage well from those who seem to encounter large number of problems. The present study focuses on understanding how parents experience their child’s disability and how, in their opinion, it has affected both themselves and the functioning of the family. One of the major reasons for undertaking this research is the desire to examine the factors that help families cope well with disabled children, as well as to identify those factors which differentiate between parents who seem to manage well from those who seem to encounter large number of problems. Previous studies have also emphasized that this research area is highly significant one because it is important to find risk factors so as to be able to help families in time. Parents need information, advice and support in order to face up to their child’s disability, and to address the problems of their children’s upbringing. Families in the present study have expressed strongly the emotional, social and economic cost in caring for a child with a disability. The distress could be alleviated by more aware and responsive support from informal and culturally sensitive formal sources. The goals of a responsive community should be to enhance coping resources that maximize the daily achievement of personal and family goals. Therefore, there should be a focus on community-based strategies that facilitate the inclusion of children with disabilities, as well as direct family support strategies to facilitate positive attitudes to inclusion of children with disabilities to contribute to family coping.