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Assessing the newborn screening education needs of families living in medically underserved areas
Adrianna Evans1, Molly Lynch2, Mihaela Johnson2
1Expecting Health, Genetic Alliance, Washington, DC, USA.
Insights
Newborn screening (NBS) education is less accessible for families in medically underserved areas (MUAs). Targeted communication strategies are needed to ensure equitable access to vital NBS information for all infants.
Area of Science:
- Public Health
- Genetics
- Health Disparities
Background:
- Newborn screening (NBS) is a critical public health service in the US.
- Equitable access to NBS education is essential for positive healthcare experiences and preventing health inequalities.
- Medically underserved areas (MUAs) may face unique challenges in accessing NBS information.
Purpose of the Study:
- To assess the needs and preferences for NBS-related health education among families, with a focus on those in MUAs.
- To identify disparities in NBS awareness and education timing between families in MUAs and those outside MUAs.
- To inform the development of targeted educational resources for families in MUAs.
Main Methods:
- An online survey was conducted with 500 participants, including 200 from MUAs.
- Data collection focused on awareness, timing, content preferences, and communication methods for NBS education.
- Analysis compared responses from families in MUAs versus those outside MUAs.
Main Results:
- Families in MUAs reported lower awareness of NBS and received education later compared to families outside MUAs, indicating potential educational inequities.
- While content preferences were similar across groups, distinct communication methods are necessary to effectively reach families in MUAs.
- Survey findings highlighted a need for tailored approaches to bridge the NBS education gap.
Conclusions:
- There are significant disparities in NBS education access and timing for families in MUAs.
- Developing culturally and geographically relevant communication strategies is crucial for improving NBS education equity.
- An online educational module was created using preferred communication methods to address the identified needs of families in MUAs.
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.
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