Davies Megan, Irvine Lisa, Backhouse Tamara, Carr Poppy, Mathie Elspeth, Drury-Mulholland Michelle, Akdur Gizdem, Killett Anne
School of Health Sciences, Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, NR4 7TJ, UK.
Centre for Research in Public Health and Community Care (CRIPACC), University of Hertfordshire, College Lane, Hatfield, AL10 9AB, UK.
Res Involv Engagem. 2025 May 15;11(1):49. doi: 10.1186/s40900-025-00724-0.
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.
公众参与对于确保研究具有相关性并满足目标人群的需求至关重要。然而，养老院居民作为一个潜在的弱势群体，往往被排除在可能直接使他们受益的研究之外。本系统评价考察了关于长期居住在养老院的老年人研究中公众参与方法的现有文献。
对CINAHL、MEDLINE和PsychINFO进行系统检索，使用与公众参与和长期护理相关的检索词。检索限于2014年以来发表的英文论文，以Backhouse等人2016年的综述为基础。通过标题和摘要筛选文章，并对可能符合条件的论文全文进行纳入审查。采用叙述性方法提取和综合纳入研究的数据。
本综述共识别出15809条引文，筛选摘要4000篇，经过应用纳入标准和严格筛选过程后最终纳入6篇文章。在这种情况下，报道的公众参与有限，更少的研究表明在整个研究过程中存在真正的合作以及居民的充分参与。认知功能严重衰退或患有痴呆症的居民缺乏代表性。不同研究中用于描述公众参与的术语差异很大，这突出表明在定义和报告活动方面缺乏清晰度。
本综述强调需要更加重视养老院研究中的公众参与，特别是对于认知障碍居民。未来的研究应优先透明地报告公众参与过程，从一开始就让居民作为积极的合作伙伴参与进来，并确保研究结果有效地传达给所有利益相关者，包括居民。总结了养老院公众参与活动的障碍和促进因素。
