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Insights from Parents about Caring for a Child with Birth Defects
NBDPN Parent Advisory Group, 8150 N. Central Expwy., M2248, Dallas, TX 75206, USA
NBDPN Parent Advisory Group, 11 Michael Townsend Court, Newark, DE 19702, USA
NBDPN Parent Advisory Group, 601 N 300 W, Spanish Fork, UT 84660, USA
NBDPN Parent Advisory Group, 3122 Wilder St., Raleigh, NC 27607, USA
* Author to whom correspondence should be addressed.
Received: 7 June 2013; in revised form: 26 July 2013 / Accepted: 29 July 2013 / Published: 7 August 2013
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.
Keywords: birth defects; parents; quality of life; communication; transition of care; prevention; advocacy; awareness; NBDPN
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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.
Lemacks J, Fowles K, Mateus A, Thomas K. Insights from Parents about Caring for a Child with Birth Defects. International Journal of Environmental Research and Public Health. 2013; 10(8):3465-3482.
Lemacks, Jodi; Fowles, Kristin; Mateus, Amanda; Thomas, Kayte. 2013. "Insights from Parents about Caring for a Child with Birth Defects." Int. J. Environ. Res. Public Health 10, no. 8: 3465-3482.