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Supporting Family Adaptation to Pre-Symptomatic and “Untreatable” Conditions in an Era of Expanded Newborn Screening

As newborn screening technology advances, new strategies must be developed to support family adaptation to patient genetic information discovered shortly after birth. Parents of children with genetic disorders will seek guidance, support, and treatment possibilities for their affected children. This article focuses on issues highlighted by expanded newborn screening and suggests strategies for supporting families of identified children. Bailey and colleagues (2009) offer four components for the support of family adaptation to pre-symptomatic and “untreatable” conditions: 1. access to accurate and understandable information for parents, 2. formal and informal support, 3. active surveillance of patient conditions, and, 4. the use of general and targeted condition interventions. The authors of this article argue that there are no “untreatable” conditions, and that sound programs for prevention and support have the potential to maximize the benefit of NBS programs.

The lead author of this article, Donald B. Bailey, Jr., Ph.D. is associated with the University of North Carolina at Chapel Hill. He was the director of the Frank Porter Graham Child Development Institute for 14 years. Dr. Bailey’s research revolves around pediatrics and the early intervention of newborn disabilities. He has published more than 200 peer-reviewed pieces of scientific literature regarding his research.

The Newborn Screening Translational Network (NBSTRN) is an international network of clinicians, researchers, and parents advocates who support the research and development of newborn screening programs.

Read the full article at:

Bailey DB Jr, Armstrong FD, Kemper AR, Skinner D, Warren SF. Supporting family adaptation to presymptomatic and “untreatable” conditions in an era of expanded newborn screening. J Pediatr Psychol. 2009;34(6):648-661. doi:10.1093/jpepsy/jsn032

https://pubmed.ncbi.nlm.nih.gov/18378512/

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