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How Families First Learn About Their Child's Chronic Condition

Ann W. Garwick, PhD; Joän Patterson, PhD; Forrest C. Bennett, MD; Robert William Blum, MD, PhD

Arch Pediatr Adolesc Med. 1995;149(9):991-997.

Abstract
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 Although two thirds of the informing incidents were positive, families also reported negative reactions to outdated and inadequate information as well as to professionals who were insensitive to their needs.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.

(Arch Pediatr Adolesc Med. 1995;149:991-997)

Author Affiliations
From the Division of General Pediatrics and Adolescent Health (Drs Garwick and Blum) and the Department of Maternal and Child Health (Dr Patterson), University of Minnesota, Minneapolis, and the Division of Child Development and Mental Retardation, Child Development and Mental Retardation Center, University of Washington, Seattle (Dr Bennett).

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