Breaking the news. How families first learn about their child's chronic condition
A. W. Garwick, J. Patterson, F. C. Bennett and R. W. Blum
Division of General Pediatrics and Adolescent Health, University of Minnesota, Minneapolis, USA.
OBJECTIVE: To develop recommendations for effectively informing families
about their child's chronic illness or disability. METHODS: The sample
included 43 families of infants with Down syndrome and/or congenital heart
disease who were participating in Project Resilience, which is a multisite
longitudinal research project. Family interviews were transcribed verbatim
and coded by two raters. 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. RESULTS: 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reported negative reactions to outdated and inadequate information as well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. CONCLUSIONS:
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.
