LIVING WITH A HANDICAPPED CHILD: THE PARENTS' PERCEPTION

Abstract

As a result of the demands of the physically handicapped population for their rights, the public and the professionals have become more aware of the existence of physically handicapped people and their needs. However, this awareness did not extend to a recognition of the needs of their families. If there was any thought at all given to the families of the handicapped, it was as an adjunct to the treatment of the patient and an assumption that what is good for the child, would be good for the family.;It was the observation of the investigator that the advent of a handicapped child either through birth or through an illness or accident is a challenge to a family, that does not diminish with time but continues to impact upon the parents throughout their lives causing personal strain and familial and social dysfunction. The extent of the strain and dysfunction will be influenced by the caring demands of the child and the coping capacity of the family.;Prevailing theory held that the distress of the parents decreases with time and that their need for counseling diminishes unless they have neurotic problems.;An investigation was undertaken to study this. The instruments used were the Mother's Overall Burden Index and the Impact on Family Scale, which had been developed at Albert Einstein College of Medicine by Stein and Riessman and had been validated on a population of parents of chronically ill children, and a scale for rating information recorded by the social worker, obtained from the charts and developed by the investigator.;This study was done at two hospitals, one urban, the other suburban. 59 parents of physically handicapped children who attended orthopedic and neuromuscular clinics were interviewed. The parents consisted of two groups: 25 had children who had been disabled for about one year, 34 had children who had been disabled for more than 5 years. All the parents were given the same questionnaire.;Tests of significance led to the following findings: That parents whose children needed a lot of physical attention, for treatment or in activities of daily living, experienced more stress than those whose children needed less care. Parents who coped successfully did not experience less stress than those who had difficulty coping and time did not diminish the amount of stress or strain felt by the parents; in fact, there was a slight increase over time. Parents received supportive and counseling help when the children were newly identified as handicapped but there was a marked reduction in the amount of counseling provided to the parent of the child with a longer term disability regardless of need.;This study has implications for social workers who work with this population and who are in a position to consider a family life approach to the problems of the disabled.