Insights from Parents about Caring for a Child with Birth Defects

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Authors

Lemacks, Jodi
Fowles, Kristin
Mateus, Amanda
Thomas, Kayte

Date of Issue

2013-08-07

Type

Article

Language

en_US

Subject Keywords

birth defects , parents , quality of life , communication , transition of care , prevention , advocacy , awareness , NBDPN

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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.

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Citation

Lemacks, J., Fowles, K., Mateus, A., & Thomas, K. (2013). Insights from Parents about Caring for a Child with Birth Defects. International Journal of Environmental Research and Public Health, 10(8), 3465–3482. doi:10.3390/ijerph10083465

Publisher

International Journal of Environmental Research and Public Health

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