Public involvement in research within care homes: benefits and challenges in the APPROACH study.

Katherine Froggatt,Claire Goodman,Hazel Morbey,Angela Dickinson,Helen Masey,Christina Victor,Sue L Davies,Wendy Martin

doi:10.1111/hex.12431

Abstract

BackgroundPublic involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health‐care services achieve integrated working to promote older people's health, PIR was integrated throughout the research processes.ObjectivesThis paper aims to present one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes.DesignA prospective case study design, with an embedded qualitative evaluation of PIR activity.Setting and participantsData collection was undertaken in six care homes in three sites in England. Six PIR members participated: all had prior personal or work experience in care homes.Data collectionQualitative data collection involved discussion groups, and site‐specific meetings to review experiences of participation, benefits and challenges, and completion of structured fieldwork notes after each care home visit.Results PIR members supported recruitment, resident and staff interviews and participated in data interpretation. Benefits of PIR work were resident engagement that minimized distress and made best use of limited research resources. Challenges concerned communication and scheduling. Researcher support for PIR involvement was resource intensive.Discussion and conclusionsClearly defined roles with identified training and support facilitated involvement in different aspects of the data collection process. This can also ensure that vulnerable older people who participate in research have a positive experience that reinforces the value of their views.

Highlights

Public involvement in research (PIR) can improve research design and recruitment
Building upon the public involvement in research (PIR) work previously undertaken by some of the study team,[9] this paper presents one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes and considers reported benefits alongside the support required to achieve engagement
PIR work was undertaken within project management meetings and at each of the three sites used in the APPROACH study with PIR involvement in data collection in the six care homes involved in the study

Summary

Introduction

Public involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health-care services achieve integrated working to promote older people’s health, PIR was integrated throughout the research processes. A key strength of public involvement in research (PIR) is proposed to be improved recruitment to studies, ensuring that research questions reflect the priorities of those studied and helping findings to be meaningfully disseminated.[7] Wider consultations have meant that the public have been involved in decisions about research foci and design[3] There is a small but growing body of work that has considered the role of older people in research[8] and in data collection and fieldwork activities.[9,10]. Four dimensions of user involvement are used to describe the processes adopted in the study, with respect to the context, methods, roles and outcomes.[13]

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Methods

Results

Discussion

Conclusion