Expecting Health at Genetic Alliance, Washington, District of Columbia, USA.
Department of Bioethics, Case Western Reserve University, Cleveland, Ohio, USA.
Am J Med Genet C Semin Med Genet. 2021 Mar;187(1):64-69. doi: 10.1002/ajmg.c.31884. Epub 2021 Jan 27.
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.
父母会使用互联网与同龄人交流，并获取大量健康主题的信息，包括新生儿筛查 (NBS)。随着 NBS 系统的发展，必须对 NBS 相关教育进行评估和更新，以保持其对父母的可用性和有益性。在本文中，我们旨在描述父母目前的 NBS 教育需求，并通过详细分析在线育儿讨论平台上的 NBS 帖子来突出改善新生儿筛查教育的领域。我们共分析了 BabyCenter 上的 317 个讨论帖子，发现父母对 NBS 的许多方面都存在疑问并希望得到支持，包括流程、结果和后续。基于此分析，我们制定了三项改善 NBS 教育的建议。通过协作并利用技术，我们可以为父母提供可访问、及时和所需的 NBS 信息和社交支持。
