Assessing the newborn screening education needs of families living in medically underserved areas

Abstract

Newborn screening (NBS) is a public health service available to all babies born in the United States (US). NBS is one of the first experiences families have in the US healthcare system with a new baby. A positive experience with NBS can give families a strong start to their child's health care and build trusting relationships with providers. A lack of easily accessible NBS education for families can exacerbate health inequalities through negative interactions with the healthcare system. Expecting Health, a maternal and child health education and advocacy initiative of Genetic Alliance, partnered with RTI International to implement an online survey assessing needs and preferences around NBS-related health education, with a particular interest in those of families living within medically underserved areas (MUAs). A total of 500 participants completed the survey, including 200 participants living in MUAs. The results of the survey showed that, compared with US families living outside of MUAs, families living in MUAs are generally less aware of NBS and do not receive NBS education at the optimal time (i.e., before birth), which could indicate they experience inequities in NBS education. While families across different geographic areas seem to have similar preferences in terms of content for NBS education, the results show that some distinct communication methods are needed to reach families living in MUAs. To bridge the gap in NBS education to families living in MUAs, the Expecting Health team built an online NBS educational module, using preferred communication methods-specified through the survey-for families living in MUAs.

Keywords: disparities; education; family; newborn screening; parents; public health; underrepresented populations.