Newborn screening for metabolic disorders: parental perceptions of the initial communication of results

Clinical Pediatrics
Mara Buchbinder, Stefan Timmermans

Abstract

Positive newborn screening (NBS) results cause significant parental distress, but little is known about how parents find out about children's screening results and what they are told. This qualitative, exploratory study reports on parents' perceptions of the initial communication of NBS results. Participants included the parents of 75 infants referred to a metabolic clinic in California over a 3-year period (2007-2010). Parents provided information about the initial communication of NBS results during audiotaped clinical encounters and open-ended interviews. Transcripts were analyzed inductively using thematic coding. Responses fell into 3 primary themes: sources of news delivery, providing information, and mitigation strategies. The findings suggest that health care providers have access to a range of communicative resources to buffer the impact of positive screening results that may be mobilized in future interventions. Recommendations for improving the communication process and future research directions are discussed.

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Citations

Sep 3, 2013·The Journal of Pediatrics·Yuval E LandauHarvey L Levy
Nov 10, 2015·Molecular Genetics and Metabolism·Sarah ViallUNKNOWN Members of the Division of Genetics & Metabolism at Children's National Health System
Dec 4, 2012·Social Science & Medicine·Stefan Timmermans
Sep 1, 2016·Sociology of Health & Illness·Fan-Tzu Tseng
Aug 1, 2014·Personalized Medicine·Stuart G NichollsJune C Carroll
May 19, 2017·Global Qualitative Nursing Research·Hilary PiercySufin Yap
Oct 20, 2020·International Journal of Neonatal Screening·Jane Chudleigh, Holly Chinnery
Jan 14, 2021·International Journal of Neonatal Screening·Harvey L Levy
Feb 10, 2021·International Journal of Neonatal Screening·Jane Chudleigh, Holly Chinnery

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