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

## TL;DR

This review shows that care home residents, especially those with cognitive impairments, are rarely meaningfully involved in research that affects them.

## Contribution

The study systematically reviews public involvement approaches in care home research, highlighting gaps and offering recommendations for improvement.

## Key findings

- Only six studies met inclusion criteria, showing limited public involvement in care home research.
- Residents with cognitive decline or dementia were underrepresented in the reviewed studies.
- Terminology for public involvement varied, indicating a lack of clarity and standardization.

## Abstract

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.

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.

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.

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.

The online version contains supplementary material available at 10.1186/s40900-025-00724-0.