Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project. (June 2021)

• Record Type: Journal Article
• Authors: Jayes, Mark; Moulam, Liz; Meredith, Stuart; Whittle, Helen; Lynch, Yvonne; Goldbart, Juliet; Judge, Simon; Webb, Edward; Meads, David; Hemsley, Bronwyn; Murray, Janice
• Is Part Of: Qualitative health research. Volume 31:Number 7(2021)
• Page Start: 1260
• Page End: 1274
• Publication Date: 2021-06
• Subjects: communication -- disability -- disabled persons -- equality, focus groups -- inequality -- marginalized or vulnerable groups -- power, empowerment -- qualitative -- research evaluation -- United Kingdom; Health -- Periodicals; Health behavior -- Periodicals; Health -- Research -- Methodology -- Periodicals; Health behavior -- Research -- Methodology -- Periodicals; 610.7205
• DOI: 10.1177/1049732321994791
• Languages: English
• ISSNs: 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.