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Facilitators and barriers to co-research by people with dementia and academic researchers: Findings from a qualitative study

Waite, J; Poland, F; Charlesworth, G; (2019) Facilitators and barriers to co-research by people with dementia and academic researchers: Findings from a qualitative study. Health Expectations 10.1111/hex.12891. (In press). Green open access

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Abstract

BACKGROUND: Public and patient involvement (PPI) is now established in dementia research. Barriers and facilitators to engagement from family carers and people in early stages of dementia have been explored. However, specific barriers and facilitators to co-research with people with dementia have not previously been investigated. OBJECTIVE: To discover the facilitators of, and barriers to, involving people with dementia as co-researchers, from the perspectives of people with dementia, gatekeepers (family caregivers, ethics committee members, service providers) and researchers. DESIGN: Thematic analysis of data from individual interviews about the co-research experience. RESULTS: Four themes emerged from interviews with 19 participants (five people with dementia): "getting one's head round it" (assumptions about research and dementia; different forms of language); practicalities (eg transport; accessibility of communication); "this feeling of safety" (perceptions of danger, protectiveness and opportunities for building trust); and motivations ("making a difference" and "keeping doing"). CONCLUSIONS: Findings both replicate and extend previous knowledge on PPI in dementia. Cognitive capacity of potential co-researchers with dementia is only a part of the picture, with attitudes and expectations of researchers, gatekeepers and people with dementia also forming barriers. Researcher education, adequate resourcing, and both creativity and flexibility are needed to support recruitment of co-researchers with dementia and to enable meaningful co-research.

Type: Article
Title: Facilitators and barriers to co-research by people with dementia and academic researchers: Findings from a qualitative study
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/hex.12891
Publisher version: http://doi.org/10.1111/hex.12891
Language: English
Additional information: Copyright © 2019 The Authors Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Keywords: barriers, co-research, dementia, facilitators, peer research, qualitative
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
URI: https://discovery.ucl.ac.uk/id/eprint/10073028
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