Literature DB >> 20560691

Reflections on doing inclusive research in the "making life good in the community" study.

Christine Bigby1, Patsie Frawley.   

Abstract

BACKGROUND: The involvement of people with intellectual disability in research is framed as inclusive, denoting their active participation in its processes. However, questions are raised about ownership and control, genuineness of involvement, and the need for honest accounts to develop practice. Such issues are particularly pressing in Australia, where there is the absence of a strong self-advocacy movement to partner with academics or hold them to account.
METHOD: Action research was used to reflect on and progressively refine the support provided by a research mentor to a co-researcher with intellectual disability employed on a large multimethod study. RESULTS AND
CONCLUSIONS: Accepting the co-researcher's strengths and designing support on the job rather than teaching them to "pass" before venturing out in the field are important in ceding control. Support required for a co-researcher is more than practical and involves developing a relationship that can actively challenge views and foster reflection. Ownership of questions and disseminating of outcomes are hampered by contextual factors such as tender processes, short-term positions, and a failure to acknowledge the support required to present findings.

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Year:  2010        PMID: 20560691     DOI: 10.3109/13668251003716425

Source DB:  PubMed          Journal:  J Intellect Dev Disabil        ISSN: 1366-8250


  3 in total

1.  Promising Practices in the Frontiers of Quality Outcome Measurement for Intellectual and Developmental Disability Services.

Authors:  Matthew Bogenschutz; Parthenia Dinora; Sarah Lineberry; Seb Prohn; Michael Broda; Angela West
Journal:  Front Rehabil Sci       Date:  2022

2.  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

3.  Lessons learned from participatory research to enhance client participation in long-term care research: a multiple case study.

Authors:  Aukelien Scheffelaar; Nanne Bos; Marjan de Jong; Mattanja Triemstra; Sandra van Dulmen; Katrien Luijkx
Journal:  Res Involv Engagem       Date:  2020-06-01
  3 in total

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