That Felt Like Real Engagement
Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability
Bibliographic Data
| ID | 4722192 |
|---|---|
| Authors | Ariel E Schwartz (0000-0002-4051-8870, Boston University, Boston, Massachusetts, USA, corresponding author), Jessica M Kramer (0000-0002-3433-2842, Boston University, Boston, Massachusetts, USA), Ellen S Cohn (Boston University, Boston, Massachusetts, USA), Katherine E Mcdonald (Syracuse University, Syracuse, New York, USA), Katherine Mcdonald (0000-0003-1195-7978, Syracuse University) |
| Year | 2020 |
| Volume | 30 |
| Issue | 2 |
| Pages | 236-249 |
| Publication date | 2020-01-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Qualitative Health Research (JOURNAL) |
| Journal identifiers | ISSN: 1049-7323 • E-ISSN: 1552-7557 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/1049732319869620 |
| PMID | 31466513 |
| OpenAlex | W2971111448 |
| Language | EN |
| Citations received | 23 |
| References cited | 45 |
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
Intellectual disability · Medical education · Psychiatry · Qualitative research · Social science · Sociology · Disability Education and Employment · Down syndrome and intellectual disability research · Family and Disability Support Research · Medicine · Psychology · Social Psychology
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| Unique citing works | 23 |
|---|---|
| Citations per year | 3,83 |
| Citation span | 2020 - 2026 (7) |
| Citation velocity | current |
| Highly cited | No |
| Citation types | Neutral: 23 |