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

Jayes, Mark ORCID: https://orcid.org/0000-0002-0371-7811, Moulam, Liz, Meredith, Stuart, Whittle, Helen, Lynch, Yvonne, Goldbart, Juliet ORCID: https://orcid.org/0000-0003-1290-7833, Judge, Simon, Webb, Edward, Meads, David, Hemsley, Bronwyn and Murray, Janice ORCID: https://orcid.org/0000-0001-8809-4256 (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

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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.