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

  • Original Research
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Journal of Genetic Counseling

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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Acknowledgments

This study was funded by the University of Utah Graduate Program in Genetic Counseling and through the 2008 Public Health Special Interest Group (SIG) Grant Award from the National Society of Genetic Counselors. We declare there are no conflicts of interest to report.

I thank all the parents who offered their time and insights. A special thanks to Vickie Venne for being a source for information and facilitating one of the focus groups. Thanks to Amy Buehler for acting as a co-facilitator and for managing the logistics for the focus groups. I would like to acknowledge my gratitude the help from the team at the Utah Birth Defect Network for all their help and support.

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Authors and Affiliations

  1. Department of Obstetrics and Gynecology, University of Utah, 50 N. Mario Capecchi Dr, room 2185, Salt Lake City, UT, 84132, USA

    A. M. Mathiesen

  2. College of Social Work, University of Utah, Salt Lake City, UT, USA

    C. J. Frost

  3. Division of Medical Genetics, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA

    K. M. Dent & M. L. Feldkamp

  4. Utah Department of Health, Utah Birth Defect Network, Salt Lake City, UT, USA

    M. L. Feldkamp

Authors
  1. A. M. Mathiesen
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  2. C. J. Frost
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  3. K. M. Dent
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  4. M. L. Feldkamp
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Correspondence to A. M. Mathiesen.

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Mathiesen, A.M., Frost, C.J., Dent, K.M. et al. Parental Needs among Children with Birth Defects: Defining a Parent-to-Parent Support Network. J Genet Counsel 21, 862–872 (2012). https://doi.org/10.1007/s10897-012-9518-6

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  • DOI: https://doi.org/10.1007/s10897-012-9518-6

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