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

Jayes, M; Moulam, L; Meredith, S; Whittle, H; Lynch, Y; Goldbart, J; Judge, S; Webb, E; Meads, D; Hemsley, B; Murray, J

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

Jayes, M Moulam, L Meredith, S Whittle, H Lynch, Y Goldbart, J Judge, S Webb, E Meads, D Hemsley, B

Murray, J

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Publisher:: SAGE Publications
Publication Type:: Journal Article
Citation:: Qualitative Health Research, 2021, 31, (7), pp. 1260-1274
Issue Date:: 2021-02-28

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Field	Value	Language
dc.contributor.author	Jayes, M
dc.contributor.author	Moulam, L
dc.contributor.author	Meredith, S
dc.contributor.author	Whittle, H
dc.contributor.author	Lynch, Y
dc.contributor.author	Goldbart, J
dc.contributor.author	Judge, S
dc.contributor.author	Webb, E
dc.contributor.author	Meads, D
dc.contributor.author	Hemsley, B https://orcid.org/0000-0002-6255-3140
dc.contributor.author	Murray, J
dc.date.accessioned	2021-11-11T04:30:29Z
dc.date.available	2021-11-11T04:30:29Z
dc.date.issued	2021-02-28
dc.identifier.citation	Qualitative Health Research, 2021, 31, (7), pp. 1260-1274
dc.identifier.issn	1049-7323
dc.identifier.issn	1552-7557
dc.identifier.uri	http://hdl.handle.net/10453/151507
dc.description.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.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SAGE Publications
dc.relation.ispartof	Qualitative Health Research
dc.relation.isbasedon	10.1177/1049732321994791
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	11 Medical and Health Sciences, 16 Studies in Human Society, 17 Psychology and Cognitive Sciences
dc.subject.classification	Nursing
dc.subject.mesh	Humans
dc.subject.mesh	Focus Groups
dc.subject.mesh	Speech
dc.subject.mesh	Research Design
dc.subject.mesh	Adolescent
dc.subject.mesh	Research Personnel
dc.subject.mesh	Motor Disorders
dc.subject.mesh	Adolescent
dc.subject.mesh	Focus Groups
dc.subject.mesh	Humans
dc.subject.mesh	Motor Disorders
dc.subject.mesh	Research Design
dc.subject.mesh	Research Personnel
dc.subject.mesh	Speech
dc.title	Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project.
dc.type	Journal Article
utslib.citation.volume	31
utslib.location.activity	United States
utslib.for	11 Medical and Health Sciences
utslib.for	16 Studies in Human Society
utslib.for	17 Psychology and Cognitive Sciences
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health/GSH.Speech Pathology
utslib.copyright.status	closed_access	*
pubs.consider-herdc	false
dc.date.updated	2021-11-11T04:30:28Z
pubs.issue	7
pubs.publication-status	Published
pubs.volume	31
utslib.citation.issue	7

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.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/151507