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Making public involvement in research more inclusive of people with complex speech and motor disorders: the I-ASC project

Jayes, Mark and Moulam, Liz and Meredith, Stuart and Whittle, Helen and Lynch, Yvonne and Goldbart, Juliet and Judge, Simon and Webb, Edward and Meads, David and Hemsley, Bronwyn and Murray, Janice (2021) Making public involvement in research more inclusive of people with complex speech and motor disorders: the I-ASC project. Qualitative Health Research. ISSN 1049-7323 (In Press)

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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 UK 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: i) the interdisciplinary project team; ii) academics engaged in discrete project activities; iii) individuals providing organizational and operational project support; iv) the project’s two advisory groups. Data were analyzed using Framework Analysis. Five themes were generated: i) the challenge of defining the co-researcher role; ii) power relations in PI; iii) resources used to enable PI; iv) perceived benefits of PI; v) 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.

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