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Insights from Parents about Caring for a Child with Birth Defects

Author

Listed:
  • Jodi Lemacks

    (NBDPN Parent Advisory Group, 8150 N. Central Expwy., M2248, Dallas, TX 75206, USA)

  • Kristin Fowles

    (NBDPN Parent Advisory Group, 11 Michael Townsend Court, Newark, DE 19702, USA)

  • Amanda Mateus

    (NBDPN Parent Advisory Group, 601 N 300 W, Spanish Fork, UT 84660, USA)

  • Kayte Thomas

    (NBDPN Parent Advisory Group, 3122 Wilder St., Raleigh, NC 27607, USA)

Abstract

Birth defects affect 1 in 33 babies. Having a child with a birth defect impacts the whole family. Parents of children who have birth defects face unique challenges and desire to make life better for their kids. They also want to help to prevent birth defects in the future. Some of the challenges parents face involve communication with healthcare professionals, quality of life issues, creating awareness and advocating for research and funding, finding resources and support, and helping teens transition to appropriate, specialized adult care. This paper addresses these issues and their sub-issues, provides examples, and makes suggestions for improvement and research.

Suggested Citation

  • Jodi Lemacks & Kristin Fowles & Amanda Mateus & Kayte Thomas, 2013. "Insights from Parents about Caring for a Child with Birth Defects," IJERPH, MDPI, vol. 10(8), pages 1-18, August.
    • Handle: RePEc:gam:jijerp:v:10:y:2013:i:8:p:3465-3482:d:27819
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    Cited by:

    1. Sunhee Lee & Jeong-Ah Ahn, 2020. "Experiences of Mothers Facing the Prognosis of Their Children with Complex Congenital Heart Disease," IJERPH, MDPI, vol. 17(19), pages 1-9, September.

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