Insights from Parents about Caring for a Child with Birth Defects

International Journal of Environmental Research and Public Health

Jodi Lemacks²  Kristin Fowles³  Amanda Mateus¹ 

[1] NBDPN Parent Advisory Group, 601 N 300 W, Spanish Fork, UT 84660, USA; E-Mail:;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; E-Mail:

关键词: birth defects;    parents;    quality of life;    communication;    transition of care;    prevention;    advocacy;    awareness;    NBDPN;   

DOI  :  10.3390/ijerph10083465

来源: mdpi

【 摘 要 】

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.

【 授权许可】

CC BY   
© 2013 by the authors; licensee MDPI, Basel, Switzerland.