Research collaboration with care home residents: A systematic review of public involvement approaches

Davies, Megan, Irvine, Lisa, Backhouse, Tamara, Carr, Poppy, Mathie, Elspeth, Drury-Mulholland, Michelle, Akdur, Gizdem and Killett, Anne (2025) Research collaboration with care home residents: A systematic review of public involvement approaches. Research Involvement and Engagement, 11. ISSN 2056-7529

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Abstract

Background: Public involvement is crucial to ensure research is relevant and addresses the needs of its target population. However, care home residents, a potentially vulnerable group, are often excluded from research that could directly benefit them. This systematic review examined the existing literature on public involvement approaches in research involving older adults residing in long-term care homes. Methods: A systematic search of CINAHL, MEDLINE and PsychINFO was conducted, using search terms related to public involvement and long-term care. The search was limited to English language papers published from 2014, building on a 2016 review conducted by Backhouse et al. Articles were screened by title and abstract, and full texts of potentially eligible papers were reviewed for inclusion. Data from included studies was extracted and synthesised using a narrative approach. Results: This review identified 15,809 citations, abstract-screened 4000, and ultimately included six articles after applying eligibility criteria and a rigorous screening process. Reported public involvement in this setting was limited, with even fewer studies demonstrating genuine collaboration and the full involvement of residents throughout the research process. There was a lack of representation of residents with advanced cognitive decline or dementia. Terminology used to describe public involvement varied considerably across studies, highlighting a lack of clarity in defining and reporting activities. Conclusions: This review highlights the need for greater emphasis on public involvement in care home research, particularly for residents with cognitive impairments. Future research should prioritise transparent reporting of public involvement processes, involving residents as active partners from the outset, and ensuring research findings are effectively communicated for all stakeholders, including residents. Barriers and facilitators to public involvement activities in care homes are summarised.

Item Type:	Article
Additional Information:	Data availability: No datasets were generated or analysed during the current study. Funding information: The CHAPPI (Care Home Activity Providers facilitating Public Involvement in research as meaningful activity for care home residents) study is funded by the National Institute for Health and Care Research (NIHR) Research for Social Care (NIHR204264) and supported by the NIHR Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Uncontrolled Keywords:	public involvement,ppi,older adults,long-term care,care homes
Faculty \ School:	Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups:	Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Depositing User:	LivePure Connector
Date Deposited:	19 May 2025 09:32
Last Modified:	19 May 2025 09:32
URI:	https://ueaeprints.uea.ac.uk/id/eprint/99290
DOI:	10.1186/s40900-025-00724-0

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