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
Other Titles
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.
Description
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