title: 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.
  
  
  METHODS
  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.
authors.affiliation: University Children's Hospital, Vienna, Austria.
authors.forename: I
authors.initials: I
authors.lastname: Jedlicka-Köhler
authors.forename: M
authors.initials: M
authors.lastname: Götz
authors.forename: I
authors.initials: I
authors.lastname: Eichler
mesh_terms: D000328:Adult; D003142:Communication; D003550:Cystic Fibrosis; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D011939:Mental Recall; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D013315:Stress, Psychological