Parental needs among children with birth defects: Defining a parent-to-parent support network

Abstract

The objective of this study was to explore how a parent-to-parent support network could impact parents of a child with a structural birth defect by specifically looking at parents' continued needs, aspects influencing their participation in support networks, and their recommendations. Structural birth defects occur in approximately 3% of all infants, representing a significant public health issue. For many reasons, parents are uniquely qualified to provide support to each other. Data were collected retrospectively through a qualitative approach of focus groups or one-onone interviews. Thirty one parents of infants registered in the Utah Birth Defect Network participated in the study. Three themes emerged, "current sources and inconsistencies in parent-to-parent-support," "aspects that influence participation in parent-to-parent network," and "recommendations for a parent-to-parent program." Health care providers need to be aware of the services and inform parents about these options. A statewide parent-to-parent network integrated into all hospitals would be a valuable resource to facilitate sharing of issues related to caring for an infant or child with a birth defect. © 2012 National Society of Genetic Counselors, Inc.