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

Academic Article

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.
  • Authors

  • Schwartz, Ariel
  • Kramer, Jessica M
  • Cohn, Ellen S
  • McDonald, Katherine E
  • Status

    Publication Date

  • January 2020
  • Published In

    Keywords

  • Adult
  • Australia
  • Community-Based Participatory Research
  • Cooperative Behavior
  • Europe
  • Female
  • Humans
  • Intellectual Disability
  • Interprofessional Relations
  • Interviews as Topic
  • Research Personnel
  • United States
  • community-based participatory research
  • developmental disabilities
  • inclusive research
  • intellectual disability
  • interviews
  • participatory action research
  • qualitative
  • Digital Object Identifier (doi)

    Pubmed Id

  • 31466513
  • Start Page

  • 236
  • End Page

  • 249
  • Volume

  • 30
  • Issue

  • 2