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Updated: May 8, 2026

Assessing the Coherence of Parents' Short Narratives Regarding their Child Using the Five-Minute Speech Sample Procedure
Published on: September 19, 2019
Insights from parents about caring for a child with birth defects
Jodi Lemacks1, Kristin Fowles, Amanda Mateus
1NBDPN Parent Advisory Group, 8150 N. Central Expwy., M2248, Dallas, TX 75206, USA. jodi.lemacks@mendedlittlehearts.org
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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