Parents' recollection of the initial communication of the diagnosis of cystic fibrosis

Abstract

Background: The diagnosis of a chronic disease in children challenges parents' emotional coping abilities and cognitive capacities.

Objective: To study parents' emotional and cognitive reactions to the diagnosis of cystic fibrosis (CF) in their children.

Methods: Postal survey by means of a written questionnaire.

Participants: Forty-six parents of 29 children with a median age of 2 months at diagnosis.

Results: Most parents initially lacked knowledge of CF (76%) and were provided only oral information (96%). Parental estimates of how much of the information given they had understood and retained were 77% and 76%, respectively, with 15 parents (33%) having understood and remembered less than 50% of what the physicians had told them. The most frequent stressing feelings were fear (83%) and despair (56%). Fifty-four percent of parents had initial shocklike reactions. In this group, a significant decrease in the understanding and recall of information was noted compared with parents who had less-emotional responses.

Conclusions: Parents learning the diagnosis are, in effect, receiving a kind of lecture, which contains more information than they can possibly assimilate. Because of the incompatibility of emotional distress and optimum learning, impairment of early comprehension and retention of information about CF is unavoidable. Repeated interviews with both parents and the provision of written and audiovisual materials should be mandatory.