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

Waite, Jacob, Poland, Fiona ORCID: https://orcid.org/0000-0003-0003-6911 and Charlesworth, Georgina (2019) Facilitators and barriers to co-research by people with dementia and academic researchers: findings from a qualitative study. Health Expectations, 22 (4). pp. 761-771. ISSN 1369-6513

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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.

Item Type: Article
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Depositing User: LivePure Connector
Date Deposited: 30 Apr 2019 15:30
Last Modified: 21 Oct 2022 22:38
URI: https://ueaeprints.uea.ac.uk/id/eprint/70762
DOI: 10.1111/hex.12891

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