title: 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-on-one 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.
authors: Department of Obstetrics and Gynecology, University of Utah, Salt Lake City, UT 84132, USA. amber.mathiesen@hsc.utah.edu
authors: A M
authors: AM
authors: Mathiesen
authors: C J
authors: CJ
authors: Frost
authors: K M
authors: KM
authors: Dent
authors: M L
authors: ML
authors: Feldkamp
mesh_terms: D002675:Child, Preschool; D000013:Congenital Abnormalities / Q000503:physiopathology / Q000523:psychology*; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology*; D012944:Social Support