1. Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project
- Author
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Liz Moulam, Helen Whittle, Juliet Goldbart, Bronwyn Hemsley, Yvonne Lynch, Janice Murray, Simon Judge, Mark Jayes, Edward J.D. Webb, Stuart Meredith, and David Meads
- Subjects
Research evaluation ,inequality ,Adolescent ,Inequality ,media_common.quotation_subject ,Motor Disorders ,Nursing ,marginalized or vulnerable groups ,Developmental psychology ,research evaluation ,03 medical and health sciences ,0302 clinical medicine ,power, empowerment ,Humans ,Speech ,030212 general & internal medicine ,Research Articles ,disabled persons ,media_common ,equality, focus groups ,030504 nursing ,communication ,Public Health, Environmental and Occupational Health ,11 Medical and Health Sciences, 16 Studies in Human Society, 17 Psychology and Cognitive Sciences ,Focus Groups ,Public involvement ,United Kingdom ,Research Personnel ,disability ,Research Design ,qualitative ,0305 other medical science ,Psychology ,Young person - 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.
- Published
- 2021