Background: Autism spectrum disorder (ASD), a lifelong disability, impacts 1:54 of all children and 1:55 African-American children in the United States. ASD affects a child’s ability to learn and interact with others in areas of behavior, communication, and socialization (CDC, 2020; Maenner et al., 2020). There are large disparities in timing of diagnosis, access to care, referrals, and unmet needs for African-American children with ASD (Constantino et al., 2020; Kuhlthau et al., 2001; Liptak et al., 2008; Maenner et al., 2020; Travers et al., 2014). Engaging African Americans with ASD in research will help close gaps and promote equitable care. To do this, the African-American ASD community must engage with researchers to co-create a research agenda; this is rare, however, due to a lack of understanding of the research process and historical mistrust of research (Boulware et al., 2003; Hooper et al., 2019; Shaia et al., 2020).
Proposed Solution to the Problem and Objectives:
To increase engagement in ASD PCOR research by African Americans impacted by ASD and address the disparities in healthcare outcomes for African-American children with ASD, this project will:
- Create a patient-centered outcomes focused research community of African-American families of children with ASD, African-American self-advocates, and ASD researchers and practitioners from the Autism Care Network (ACNet) that is dedicated to the needs of the African-American community and to improving the capacity to conduct PCOR/CER across the country
- Create culturally responsive training materials for African-American self-advocates with ASD, families of children with ASD, and ASD researchers and practitioners about conducting ASD PCOR/CER and partnering with African-American self-advocates and families
- Use the training materials to conduct skill-building leadership trainings for African-American stakeholders
- Provide training to build the capacity of researchers to partner with the African-American ASD community
- Develop research questions and a research agenda based on PCOR/CER principles and the needs of the African-American ASD community and disseminate the lessons learned.
Activities: Project activities will include establishing a stakeholder collaborative, developing training materials, training 40 African-American stakeholders on CDC’s “Learn the Signs. Act Early” and ASD PCOR research, training 20 researchers about engaging the African-American ASD community in research, conducting 10 key informant interviews, holding a two-day convening of the stakeholder collaborative to develop a research agenda.
Project Outcomes and Outputs: Short-term outcomes include establishment of an African-American ASD research community, producing culturally responsive training materials on ASD research and partnering with African-American stakeholders, and establishing a research agenda. Medium-term outcomes include training African Americans to participate in research and co-develop research programs. The research agenda co-developed with self-advocates, families, researchers, and practitioners will lead to increased trust, improved interventions, programs, and strategies that address the needs of the African-American ASD community.
Long-term outcomes include future research that has a direct impact on care, health, and disparities.
Patient and Stakeholder Engagement Plan & Project Collaborators: Family Voices will engage its network of 59 Family-to-Family Health Information Centers to recruit African-American stakeholders. Additional partners include Yetta Myrick, a CDC Act Early Ambassador, and Brian Boyd, Director of the Juniper Gardens Children’s Project. Karen Kuhlthau, Associate Professor at Harvard Medical School, will co-lead trainings for researchers.
By intentionally engaging the African-American ASD community, Family Voices will increase their ability to participate across all phases of patient-centered outcomes research, and the team will share this model and its learnings broadly across its national network.
Allysa Ware, MSW
Family Voices, Inc.
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: January 27, 2023