Research-Capacity Building: Insights From a Stakeholder Community of Self-Advocates With Disabilities,Families,and Community Organization Members

PURPOSE: Individuals with intellectual and developmental disabilities (ID/DD) face environmental and social barriers to community participation in places where they live, work and play.¹ These environmental and social barriers contribute to disparities in health, well-being and quality of life. Organization-level occupational therapy interventions have been developed that aim to facilitate community participation and promote health.^2,3 Outcomes from these interventions need to be examined and understood. Our research capacity building activities, spurned by this need and supported by the Patient Centered Outcomes Research Institute Eugene Washington Engagement Award, had two overarching goals: 1) to engage individuals with ID/DD, their families and community members in research capacity building; and 2) to gather stakeholder-driven information to guide research focused on linkages between equitable community participation and health, well-being and quality of life. Specific project objectives were to 1) establish a community of diverse stakeholders including individuals, parents, health professionals, and members of community organizations; 2) develop a research roadmap and action plan that reflects important research questions, priorities, and meaningful outcomes to measure change, and 3) develop a transferable and sustainable stakeholder engagement process and training module for community stakeholders.

DESIGN AND METHODS: This paper focuses on methods of research capacity building as an important and contemporary priority for patient-centered and stakeholder driven research. Information shared is based on a Delphi consensus method then analysis of process data gathered throughout a 2-year project, and content analysis of themes generated from three face-to-face meetings with stakeholders in three regions of the US (Philadelphia, PA; Seattle, WA and Augusta, GA).

RESULTS: We will describe our key engagement methods, facilitators and barriers encountered and solutions we developed, such as a) methods to share information with universal design and accessibility in mind to reach stakeholders with diverse learning and cognitive abilities, and b) the critical role of a Lead Engagement Coordinator, who is a disability self-advocate, in establishing trust and facilitating communication across the matrix of our community stakeholders. We will share key research priorities and outcomes that reflect stakeholder priorities and how this information shaped project deliverables that included a) research roadmap and action plan that outlines future partnership directions, b) a series of three stakeholder training modules that focus on “readiness” to engage in research and different levels of engagement and partnership roles, and c) desired strategies (e.g., website for information sharing, mentoring) for sustainable stakeholder engagement.

CONCLUSIONS: Project outcomes address ways to engage individuals with ID/DD in research, as an underrepresented group, as well as the matrix of people and organizations that need to be at the table together to address issues of equitable community participation. The approach aligns with contemporary patient-centered research priorities and methods that should be driven by and meaningful to stakeholders and community members. Finally, this project addresses a larger overarching goal of research that examines community-based occupational therapy interventions and outcomes that can contribute to and expand the occupational therapy evidence base.

References

1. Healthy People 2020 (Internet). Washignton DC: U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion (June 9, 2019). Available from http://www.healthypeople.gov.

2. Umeda, C. J., Fogelberg, D., Jirikowic, T. L., Pitonyak, J. S., Mroz, T. M., & Ideishi, R. (2017). Expanding the implementation of the Americans with Disabilities Act for populations with intellectual and developmental disabilities: The role of organizational-level occupational therapy consultation. American Journal of Occupational Therapy-Health Policy Perspectives. 71(4):7104090010p1-7104090010p6.

3. Ideishi, R. I. (2013). Occupational therapy as a process to promote social and cultural participation. Korean Journal of Cognitive Rehabilitation, 2(2), 5-10. U.S. Department of Health and Human Services