Background: Research shows significant health disparities exist when comparing Black and Hispanic children with Down syndrome (DS) to white children with DS, including lower life expectancy for non-Hispanic Black children and decreased access to services and support for both populations (de Graaf, Buckley & Skotko, 2017; Kucik et al., 2013; Wang et al., 2015).
Proposed Solution to the Problem: Black and Hispanic new and expectant parents have indicated a clear preference for the provision of psychosocial, health, and life-outcome research at the moment of diagnosis as the first point on the life course trajectory. However, community stakeholders have not been sufficiently involved in determining best ways to disseminate patient-centered outcomes research (PCOR) findings. Therefore, this approach seeks to engage Black and Hispanic community groups, health equity experts, and medical professionals to determine dissemination strategies that ensure families are receiving critical information to promote health equity.
Objectives: This project aims to solicit feedback from patient advocacy leaders and Black and Hispanic parents of children with DS about helpful practices for medical providers and advocacy organizations to utilize when disseminating PCOR findings, including the PCORI-funded research about Down Syndrome Clinic to You (DSC2U), to new and expectant parents learning about a diagnosis. Based on the information provided by the coalitions above, this project will work collaboratively with health equity experts, advocacy leaders, and medical providers to identify strategies, platforms, and formats to disseminate PCOR/CER to Black and Hispanic new and expectant parents of children with DS.
Activities: To improve dissemination strategies for PCOR/CER findings to Black and Hispanic parents learning about a DS diagnosis, we will conduct online meetings during Year 1 to solicit feedback and insight from 20 Black and Hispanic parents of children with DS, as well as six local advocacy organization leaders, five health equity experts, and five medical leaders.
Projected Outcomes and Outputs: During Year 2, we will summarize those findings to share useful practices for dissemination with medical and advocacy organizations by producing a whitepaper and a learning module, which will be reviewed by all the interdisciplinary stakeholders. We will also work with our consultants to determine strategies for each of the participating organizations to braid the recommendations into their current organizational practices.
Short-term outcomes during the project period include:
- Development and increased distribution of recommendations via the white paper and learning module for advocacy organization leaders and medical providers to disseminate PCOR/CER to Black and Hispanic new and expectant parents of children with DS
- Sharing of resources via organizational newsletters, conferences, and online distribution
Medium-term outcomes (0-2 years post-project period) include:
- Improved adoption of practices to increase the dissemination of PCOR to Black and Hispanic new and expectant parents of children with DS by patient advocacy organizations and medical providers
Long-term outcomes (3+ years post-project period) include:
- Improved health outcomes and decreased health disparities for Black and Hispanic children with DS as their families have increased access to PCOR/CER to advocate for their children and seek informed healthcare
- Interdisciplinary recommendations for improving the dissemination of PCOR/CER to Black and Hispanic new and expectant parents of children with DS available via the whitepaper and learning module
- Braiding of those recommendations into advocacy and medical organization practices when supporting new and expectant parents
Patient and Stakeholder Engagement Plan: Paid consultants on the project contributing their feedback throughout the project include Black and Hispanic parents of children with DS; advocacy group leaders; diverse health equity experts who are Hispanic, Black, and who have disabilities; and medical professionals from various disciplines. Moreover, the staff includes a DEI Director and a Project Leader who is the parent of an adult with DS.
Project Collaborators: This project is supported by the Down Syndrome Association of Atlanta, Down Syndrome Association of Minneapolis, Massachusetts Down Syndrome Congress, Down Syndrome Association of Central Texas, Club 21 (Pasadena, CA), and the National Association for Down Syndrome (Chicago, IL), the National Down Syndrome Society, and the National Society of Genetic Counselors. Moreover, this project will include Dr. Brian Skotko from the PCORI-funded DSC2U research project as a consultant to contribute general expertise and to determine areas of collaboration between the initiatives when reaching out to Black and Hispanic new and expectant parents.