Children with a handicap and their families

Abstract

The mothers' perceptions of the emotional and social stresses experienced by families who have children suffering from spina bifida, cerebral palsy or a limb deficiency, and the mothers' suggestions for easing situations that were causing them concern are recorded in this study. One hundred and sixteen mothers were interviewed. The children were between the ages of five and ten years at the time of the interview and were patients at the Royal Children's Hospital, Melbourne. The study investigates the problems of attending a public hospital and draws attention to the difficulties in communication between the hospital staff and parents. It emphasizes the physical demands made on the parents, particularly the mothers, in caring for a handicapped child and indicates the lack of supporting services in the home, such as home help and child minding services. The effect on the parental relationship and on brothers and sisters is studied and attention is drawn to the need for ongoing social work support to the parents, and that brothers and sisters should be included in the counselling services. Some of the difficulties encountered by the child with a handicap are recorded, in particular the problems of socialization and leisure time occupation. The parents' difficulties in rearing a handicapped child are discussed including their problem in talking to the child about his handicap. The mothers' comments about community attitudes to their child, and ways of alleviating these are also mentioned.