Jayes, M., Moulam, L., Meredith, S. et al. (8 more authors) (2021) Making public involvement in research more inclusive of people with complex speech and motor disorders: The I-ASC project. Qualitative Health Research, 31 (7). pp. 1260-1274. ISSN 1049-7323
Abstract
In this study, we aimed to identify processes that enabled the involvement of a person with complex speech and motor disorders and the parent of a young person with these disorders as co-researchers in a U.K. research project. Semi-structured individual and focus group interviews explored participants’ experiences and perceptions of public involvement (PI). Sixteen participants were recruited, with representation from (a) the interdisciplinary project team; (b) academics engaged in discrete project activities; (c) individuals providing organizational and operational project support; and (d) the project’s two advisory groups. Data were analyzed using Framework Analysis. Five themes were generated: (a) the challenge of defining the co-researcher role; (b) power relations in PI; (c) resources used to enable PI; (d) perceived benefits of PI; and (e) facilitators of successful PI. Our findings provide new evidence about how inclusive research teams can support people with complex speech and motor disorders to contribute meaningfully to co-produced research.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2021. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
Keywords: | communication; disability; disabled persons; equality; focus groups; inequality; marginalized or vulnerable groups; power; empowerment; qualitative; research evaluation; United Kingdom |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 24 Mar 2021 15:38 |
Last Modified: | 15 Feb 2022 13:31 |
Status: | Published |
Publisher: | SAGE Publications |
Refereed: | Yes |
Identification Number: | 10.1177/1049732321994791 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:172429 |