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

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

Research output: Contribution to journalArticle

3 Scopus citations


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.

Original languageEnglish (US)
JournalQualitative Health Research
StateAccepted/In press - Jan 1 2019



  • community-based participatory research
  • developmental disabilities
  • inclusive research
  • intellectual disability
  • interviews
  • participatory action research
  • qualitative

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this