Embedding patient and public involvement in dementia research: Reflections from experiences during the ‘Journeying through Dementia’ randomised controlled trial

Bereford-Dent, Jules, Sprange, Kirsty, Mountain, Gail, Mason, Clare, Wright, Jessica, Craig, Claire and Birt, Linda (2022) Embedding patient and public involvement in dementia research: Reflections from experiences during the ‘Journeying through Dementia’ randomised controlled trial. Dementia-International Journal of Social Research and Practice, 21 (6). pp. 1987-2003. ISSN 1471-3012

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Abstract

Background: The involvement of people with a diagnosis of dementia in patient and public involvement and engagement (PPIE) in research is an emerging field in the delivery of studies. Researchers need to understand and use the learning derived from various projects so that this growing body of knowledge can be applied in future research. Objective: To embed PPIE throughout a randomised controlled trial of a psychosocial intervention called Journeying through Dementia. We identify and discuss the approaches to involvement that worked well and those where improvements were indicated. Design: The Guidance for Reporting Involvement of Patients and the Public Short Form (GRIPP2-SF) is used to describe and critically appraise the approaches taken and the impact of PPIE involvement upon study processes, the study team and those people with dementia and their supporters who acted as advisors. Findings: The involvement of people with a diagnosis of dementia and supporters as study advisors improved the accessibility and relevance of the research for people living with dementia. It also highlighted issues that researchers may have otherwise overlooked. Successful engagement of people with dementia and their supporters in the study was associated with staff skills and particularly use of techniques to scaffold meaningful involvement, as well as participants’ memory and cognitive capacity. However, embedding robust and meaningful involvement processes required significant time and resources. Discussion: We propose that certain research processes need to be adapted to be accessible and appropriate for people living with dementia. Recruitment of PPIE advisors needs to reflect population diversity. There also needs to be greater parity of voice between people with lived experience of dementia and researchers. These steps will increase the impact of PPIE in research and improve the experience for those who volunteer to be PPIE advisors.

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 Centres > Institute for Volunteering Research Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Related URLs:	https://shura.shu.ac.uk/id/eprint/30652
Depositing User:	LivePure Connector
Date Deposited:	13 Oct 2022 10:38
Last Modified:	04 Dec 2024 01:37
URI:	https://ueaeprints.uea.ac.uk/id/eprint/89035
DOI:	10.1177/14713012221106816

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