Disseminating PCORI Results about Disabilities to African American and Hispanic Expectant Parents

Funder: PCORI Project title: Disseminating PCOR Results about Disabilities to African American and Hispanic Expectant Parents Stephanie Meredith Human Development Institute Abstract Research shows significant health disparities exist when comparing African American and Hispanic children with Down syndrome (DS) to white children with Down syndrome, including life expectancy and access to services and support (de Graaf, Buckley & Skotko, 2017; Kucik et al., 2013; Wang et al., 2015). One problem is the extent to which families of color learning about a prenatal or postnatal diagnosis of DS actually receive the latest accessible and research-based information about the condition from their medical providers. The moment of diagnosis is the first point on the life course, and research shows that families often experience trauma that can last for many years when they receive limited or no additional resources or support systems during that vulnerable time (May, C., 2020). Therefore, it is critical that families receive patient centered research to make informed decisions about healthcare and access early intervention and related services as soon as possible. Research by Chilaka et al. (2001) and Levis et al. (2012) has demonstrated that diverse racial groups have a disparate knowledge about Down syndrome and different informational preferences when learning about a prenatal diagnosis of Down syndrome. The Levis research shows that African American and Hispanic prospective parents prefer resources that contain racially representative photos, accessible language, and psychosocial research. The study specifically identifies the booklets produced by our organization as meeting the needs identified by the research participants; however, no initiative has specifically solicited input from people of color, medical professionals, and health equity experts to build capacity for disseminating research about Down syndrome to expectant parents. This solution stands to be uniquely effective in determining dissemination strategies preferred by African American and Hispanic parents because the research content preferences have already been identified.