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Digital peer-to-peer information seeking and sharing: Opportunities for education and collaboration in newborn
Brianne C Miller1, Aaron J Goldenberg2, Natasha F Bonhomme1
1Expecting Health at Genetic Alliance, Washington, District of Columbia, USA.
Insights
Parents seek online information about newborn screening (NBS). Analysis reveals needs for improved NBS education regarding processes, results, and follow-up, with three recommendations for better support.
Area of Science:
- Genetics and Public Health
- Parental Education and Support
Background:
- Parents increasingly use online platforms for health information, including newborn screening (NBS).
- The evolving nature of NBS necessitates continuous evaluation and updating of parent education strategies.
Purpose of the Study:
- To identify parents' current educational needs concerning newborn screening.
- To analyze online discussions to pinpoint areas for improving NBS education.
Main Methods:
- Analysis of 317 discussion posts related to newborn screening on the BabyCenter® online parenting platform.
- Qualitative assessment of parent questions and expressed needs regarding NBS processes, results, and follow-up.
Main Results:
- Parents frequently asked questions and sought support across various NBS aspects, including screening procedures, test outcomes, and post-screening care.
- Identified gaps in current NBS educational resources and highlighted the demand for accessible, timely information.
- Developed three actionable recommendations to enhance NBS parent education and support.
Conclusions:
- Online parenting platforms offer valuable insights into parental needs for newborn screening information.
- Improving NBS education requires a collaborative approach, leveraging technology to provide timely and relevant support.
- Enhanced educational strategies can better meet parents' informational and social support needs throughout the NBS process.
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.
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