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.

The Value of Cognitive Pretesting: Improving Validity and Revealing Blind Spots through the Development of a Newborn Screening Parent Experiences Survey

“…We found providing baseline educational and explanatory text ensured that survey participants would have similar knowledge against which they could anchor and evaluate their own NBS experiences. The need to provide baseline knowledge to survey participants is consistent with a recent study by Evans et al which found that while 62% of parents indicated some familiarity with NBS, only about one-third of parents could accurately select a definition of NBS [ 9 ].…”

“…Surveys are commonly used to gather a range of data on newborn screening (NBS) programs. In recent years, surveys have been employed to evaluate and improve NBS program processes including laboratory procedures [ 1 ], hospital blood spot collection [ 2 ], NBS results and follow-up communication [ 3 , 4 , 5 , 6 ], and parent education strategies [ 7 , 8 , 9 ]. An evolving area of research in newborn screening is the evaluation of public perceptions and parental knowledge and experiences with NBS [ 10 , 11 , 12 , 13 ].…”

One Size Does Not Fit All: A Multifaceted Approach to Educate Families about Newborn Screening

“…To identify potential needs and strategies for educating families about newborn screening, the Navigate NBS program conducted a nationwide needs assessment of 819 U.S.-based parents, expecting parents, individuals with NBS conditions, or family members of individuals with NBS conditions, with focus on those living inside of medically underserved areas (MUAs). As previously published, this assessment highlighted that individuals from MUAs reported less awareness of NBS and do not receive NBS education at the optimal time before birth, which could indicate that they experience inequities in NBS education [ 9 ]. In addition, the results from the needs assessment indicated that online, self-paced learning from trusted sources is the preferred communication and learning method for most families, particularly those that are harder to reach and from MUA.…”

“…Many families are not made aware of newborn screening prior to or at the time of their child’s birth, making it challenging for them to understand the importance of and possible outcomes of NBS, including follow-up testing. Complex health systems, siloed infrastructure, and limited resources exacerbate existing knowledge gaps around newborn screening and are often magnified among less educated and medically underserved populations, with research noting that infants of less educated parents are less likely to receive timely diagnosis and services [ 9 ].…”

Use of Online Newborn Screening Educational Resources for the Education of Expectant Parents: An Improvement in Equity

“…Since awareness of NBS improves parental experiences, inadequate education about NBS could compound inequities faced by families of medically underserved areas (MUA). A survey conducted by Expecting Health and RTI International showed that families living within MUAs are less likely to receive NBS education prenatally and are less aware of NBS when compared to families living outside of MUAs [ 6 ].…”