Project Summary
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.
Project Information
Allysa Ware, MSW
Family Voices, Inc.
$250,000
Key Dates
24 months
2021
Tags
Last updated: January 27, 2023