"That Felt Like Real Engagement": Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability.

"That Felt Like Real Engagement": Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability.

Schwartz, Ariel E;Kramer, Jessica M;Cohn, Ellen S;McDonald, Katherine E;
Qualitative Health Research 2019 pp. 1049732319869620
249
schwartz2019thatqualitative

Abstract

People with intellectual disability (ID) are increasingly involved in stakeholder-engaged research, such as "inclusive research" (IR). To understand the processes that foster and maintain IR with individuals with ID, we used a narrative interview approach with co-researchers with ID ( = 6) and academic researchers ( = 8). We analyzed the data using grounded theory principles. We then developed a model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. We observed that team members' values and characteristics are foundational to IR and drive a commitment to accessibility. Contextual factors, including funding and partnership duration, influence teams' processes and structures. These processes and structures influence the extent to which co-researchers perceive the IR team to be cofacilitated or academic-facilitated. Co-researcher involvement is partially maintained by perceived personal and societal benefits. Optimizing the relationship between these factors may support involvement of people with ID in stakeholder-engaged research projects.

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