For a study, the researchers sought to learn more about parents’ experiences with newborn screening [NBS], with the ultimate goal of identifying requirements for creating informatics-based educational and health management services. Between March and September 2020, researchers performed 4 focus groups and 4 one-on-one qualitative interviews with 35 participants. Parents who had received accurate positive newborn screening results, parents who had received false-positive results, and soon-to-be parents who had no direct experience with the screening process were divided into 3 groups. Researchers used an inductive, constant comparison strategy to analyze the interview data. The findings are divided into 5 sections: NBS results and prior knowledge of the program; approaches to managing a child’s medical data; additional sources of informational and emotional support; barriers faced by parents navigating the health system; and recommendations and suggestions for new parents undergoing the NBS process. The research uncovered a diverse variety of experiences with and opinions about the newborn screening program and the broader newborn screening system. While parents’ overall impressions of the screening process were positive, some participants expressed significant displeasure with how results were initially communicated and challenges in obtaining trustworthy, timely information. The dissatisfaction with present information management and educational tools suggested that informatics-based initiatives could help parents get the information they needed.
Source:bmcpediatr.biomedcentral.com/articles/10.1186/s12887-022-03160-1
