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Published in: Journal of Genetic Counseling 3/2014

01-06-2014 | Original Research

Informing Children of Their Newborn Screening Carrier Result for Sickle Cell or Cystic Fibrosis: Qualitative Study of Parents’ Intentions, Views and Support Needs

Authors: Fiona Ulph, Tim Cullinan, Nadeem Qureshi, Joe Kai

Published in: Journal of Genetic Counseling | Issue 3/2014

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Abstract

Newborn screening for cystic fibrosis and sickle cell disease enables the early identification and treatment of affected children, prolonging and enhancing their quality of life. Screening, however, also identifies carriers. There are minimal or no health concerns for carriers. There are, however, potential implications when carriers reach reproductive age, and thus research attention has been given to how best to convey information about these implications in a meaningful, balanced way which does not raise undue anxieties. Most research focuses on the communication from health professional to parent, yet ultimately this information is of greatest significance to the child. This study examines parents’ intentions to inform their child of newborn screening carrier results. Semi-structured interviews with 67 family members explored their intentions to inform the child, and related views and support needs. Parents almost unanimously indicated they planned to inform the child themselves. Health professionals were expected, however, to provide guidance on this process either to parents through advice and provision of written materials, or directly to the child. Although parents initially stated that they would convey the result once their child had developed the ability to understand the information, many appeared to focus on discrete life events linked to informed reproductive decision making. The results highlight ways in which health care providers may assist parents, including providing written material suitable for intergenerational communication and ensuring that cascade screening is accessible for those seeking it. Priorities for further research are identified in light of the results.
Footnotes
1
A recall system was being mooted by the service which communicated with this mother. It is not common practice in the UK.
 
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Metadata
Title
Informing Children of Their Newborn Screening Carrier Result for Sickle Cell or Cystic Fibrosis: Qualitative Study of Parents’ Intentions, Views and Support Needs
Authors
Fiona Ulph
Tim Cullinan
Nadeem Qureshi
Joe Kai
Publication date
01-06-2014
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 3/2014
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-013-9675-2

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