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

Qual Health Res. 2020 Jan;30(2):236-249. doi: 10.1177/1049732319869620. Epub 2019 Aug 30.

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 (n = 6) and academic researchers (n = 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.

Keywords: community-based participatory research; developmental disabilities; inclusive research; intellectual disability; interviews; participatory action research; qualitative.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Australia
  • Community-Based Participatory Research / methods*
  • Cooperative Behavior*
  • Europe
  • Female
  • Humans
  • Intellectual Disability / psychology*
  • Interprofessional Relations*
  • Interviews as Topic
  • Research Personnel / psychology*
  • United States