This paper presents data from a study of 190 parents and discusses their reactions to being told that their child was likely to be severely mentally handicapped. Dissatisfaction was related to the child's age when the parents were first told about the impairment, which was itself related to the diagnosis of the child's condition. Parents of children with non-specific handicap were often not informed about the impairment until the second or third year of the child's life, while parents of children with Down's Syndrome were usually informed within a week of birth. The paper compares these two groups of parents and discusses the reasons for their dissatisfaction. The study showed that parents valued early acknowledgement of the problem, a sympathetic approach on the part of medical professionals, and the sharing of information and uncertainty. The reasons why parents of mentally handicapped children may continue to feel dissatisfied are discussed in the light of the theoretical literature on doctor-patient communication.
KIE: Parents of 190 severely mentally handicapped children served by two health districts in southeast England were interviewed to determine their reactions on being told of their children's handicap. The degree of satisfaction was positively related to early disclosure, a sympathetic approach by health personnel, sharing of information, and acknowledgement of uncertainty in diagnosis and prognosis. Parents of children with Down's syndrome, which can be diagnosed early, were generally more satisfied than parents whose children had handicaps of unknown pathology. Parents who encountered evasion, denial, and delay were dissatisfied. The authors briefly describe several lines of research aimed at improving professional parent communication.