Literature DB >> 31466513

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

Ariel E Schwartz1, Jessica M Kramer1, Ellen S Cohn1, Katherine E McDonald2.   

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.

Entities:  

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

Mesh:

Year:  2019        PMID: 31466513     DOI: 10.1177/1049732319869620

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  5 in total

1.  The Low Voices: Quality, Ethics, and Reach of Qualitative Data.

Authors:  Carmen de la Cuesta-Benjumea
Journal:  Invest Educ Enferm       Date:  2022-03

2.  Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities.

Authors:  Ariel E Schwartz; Jessica M Kramer
Journal:  Br J Learn Disabil       Date:  2020-10-06

3.  Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability.

Authors:  Karen Watchman; Kate Mattheys; Andrew Doyle; Louise Boustead; Orlando Rincones
Journal:  Qual Health Res       Date:  2020-02-13

4.  A qualitative approach to experiential knowledge identified in focus groups aimed at co-designing a provocation test in the study of electrohypersensitivity.

Authors:  Jimmy Bordarie; Maël Dieudonné; Maryse Ledent; Nicolas Prignot
Journal:  Ann Med       Date:  2022-12       Impact factor: 5.348

5.  "An Active, Productive Life": Narratives of, and Through, Participation in Public and Patient Involvement in Health Research.

Authors:  Joanna Reynolds; Ruth Beresford
Journal:  Qual Health Res       Date:  2020-10-03
  5 in total

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