First diagnosis of severe handicap: a study of parental reactions

Abstract

This paper reports the results of interviews with 190 parents of severely mentally handicapped children. Questions were asked about parents' satisfaction with the way they were first informed of the child's impairment. Most parents were informed by a doctor, and almost two-thirds were dissatisfied with the first information given. Satisfaction was associated with being told early in the child's life. There was a significant association between the time of telling and the diagnostic condition of the child: parents of children with handicap of no known pathology were more likely to be told during or after the second year of the child's life, while parents of children with Down's syndrome were most likely to be told at birth. The authors discuss ways in which parents can be helped through this difficult time and suggest procedures for breaking the news to parents in a sensitive way.