To develop recommendations for effectively informing families about their child's chronic illness or disability.
The sample included 43 families of infants with Down syndrome and/or congenital heart disease who were participating in Project Resilience.
Qualitative techniques were used to identify the factors that influenced family caregivers'reactions to learning that their child had been diagnosed as having a chronic condition.
Family caregivers clearly distinguished their personal emotional reactions to the diagnosis from their reactions to how providers informed them about their child's condition.
Families emphasized the quality of information that they received as well as the manner in which they were told about the condition.
Although two thirds of the informing incidents were positive, families also reported negative reactions to outdated and inadequate information as well as to professionals who were insensitive to their needs.
Resident and continuing education programs need to prepare physicians who can sensitively and effectively « break the news » to diverse families who have children with chronic conditions.
At the time of diagnosis, clinicians need to PACE the news by (1) planning the setting, (2) assessing the family's background knowledge and experience, (3) choosing strategies that best fit the family's particular situation, and (4) evaluating the family's understanding of the information.
Mots-clés Pascal : Maladie, Chronique, Enfant, Relation médecin malade, Relation parent enfant, Expérience professionnelle, Information biomédicale, Recommandation, Homme
Mots-clés Pascal anglais : Disease, Chronic, Child, Physician patient relation, Parent child relation, Professional experience, Biomedical information, Recommendation, Human
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 95-0520559
Code Inist : 002B30A03C. Création : 01/03/1996.