Breaking bad news to parents with disabled children--a cross-cultural study

This cross-cultural retrospective study investigates the problems parents experience when told that their child is physically and/or mentally disabled. The authors try to compare, where relevant, some of the responses of the parents from different ethnic groups. The parents of 40 randomly selected coloured, 26 white and 24 black pre-school children who were first seen at the Developmental Assessment Clinic at the Red Cross War Memorial Children's Hospital in Cape Town, South Africa between January 1989 and December 1990 were asked to participate in this study. The final sample comprised 65 children. Except for the Xhosa speaking parents, the majority of parents received the diagnosis in their own language (English or Afrikaans). Most Xhosa speaking parents denied having received an explanation of the diagnosis, or having had an opportunity to ask questions. Only a few black parents reported being asked as to their understanding of the diagnosis. White parents tended to deny the diagnosis of mental handicap more often than the other groups despite reporting that explanations were given. The majority of parents would have liked a written report after the first consultation. Despite these findings, most parents felt satisfied with the way the news were given to them, reported good progress in their children and some of them expected their children to go to a normal school. Use of a language other than the parent's tongue tends to have a negative influence on the communication between doctors and parents. A diagnosis of mild mental handicap, a 'perception' of good progress and an absence of visible signs of the disability contribute to parental denial of the reality of the child's developmental delay and its scholastic consequences. The process of 'breaking the news' can be facilitated by the introduction of a few simple measures as described in the recommendations.