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Journal of Genetic Counseling

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01.12.2012 | Original Research

Parental Needs among Children with Birth Defects: Defining a Parent-to-Parent Support Network

verfasst von: A. M. Mathiesen, C. J. Frost, K. M. Dent, M. L. Feldkamp

Erschienen in: Journal of Genetic Counseling | Ausgabe 6/2012

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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.

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Titel: Parental Needs among Children with Birth Defects: Defining a Parent-to-Parent Support Network
verfasst von: A. M. Mathiesen
C. J. Frost
K. M. Dent
M. L. Feldkamp
Publikationsdatum: 01.12.2012
Verlag: Springer US
Erschienen in: Journal of Genetic Counseling / Ausgabe 6/2012
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-012-9518-6

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