Insights from Parents about Caring for a Child with Birth Defects

Jodi Lemacks, Kristin Fowles, Amanda Mateus and Kayte Thomas
Additional contact information
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

IJERPH, 2013, vol. 10, issue 8, 1-18

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 (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2013
References: View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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