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Int. J. Environ. Res. Public Health 2013, 10(8), 3465-3482; doi:10.3390/ijerph10083465

Insights from Parents about Caring for a Child with Birth Defects

1
NBDPN Parent Advisory Group, 8150 N. Central Expwy., M2248, Dallas, TX 75206, USA
2
NBDPN Parent Advisory Group, 11 Michael Townsend Court, Newark, DE 19702, USA
3
NBDPN Parent Advisory Group, 601 N 300 W, Spanish Fork, UT 84660, USA
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NBDPN Parent Advisory Group, 3122 Wilder St., Raleigh, NC 27607, USA
*
Author to whom correspondence should be addressed.
Received: 7 June 2013 / Revised: 26 July 2013 / Accepted: 29 July 2013 / Published: 7 August 2013
(This article belongs to the Special Issue Birth Defect Prevention)
View Full-Text   |   Download PDF [286 KB, uploaded 19 June 2014]

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. View Full-Text
Keywords: birth defects; parents; quality of life; communication; transition of care; prevention; advocacy; awareness; NBDPN birth defects; parents; quality of life; communication; transition of care; prevention; advocacy; awareness; NBDPN
This is an open access article distributed under the Creative Commons Attribution License (CC BY 3.0).

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MDPI and ACS Style

Lemacks, J.; Fowles, K.; Mateus, A.; Thomas, K. Insights from Parents about Caring for a Child with Birth Defects. Int. J. Environ. Res. Public Health 2013, 10, 3465-3482.

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