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Digital peer‐to‐peer information seeking and sharing: Opportunities for education and collaboration in newborn screening
Author(s) -
Miller Brianne C.,
Goldenberg Aaron J.,
Bonhomme Natasha F.
Publication year - 2021
Publication title -
american journal of medical genetics part c: seminars in medical genetics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.419
H-Index - 101
eISSN - 1552-4876
pISSN - 1552-4868
DOI - 10.1002/ajmg.c.31884
Subject(s) - newborn screening , multitude , the internet , medical education , internet privacy , social media , psychology , peer support , knowledge management , medicine , public relations , computer science , world wide web , nursing , political science , pediatrics , law
Abstract Parents use the internet to connect with their peers and access information about a multitude of health topics, including newborn screening (NBS). As the NBS system evolves, education about NBS must be evaluated and updated to remain accessible and beneficial to parents. In this article, we aim to describe parents' current NBS educational needs and highlight areas to improve newborn screening education by detailing an analysis of NBS posts on an online parenting discussion platform. We analyzed a total of 317 discussion posts on BabyCenter®, finding that parents had questions about and desired support around many aspects of NBS including processes, results, and follow‐up. As a result of this analysis, three recommendations to improve NBS education were developed. Through collaboration and by leveraging technology, we can provide parents with accessible, timely, and desired NBS informational and social support.