Activity provider-facilitated patient and public involvement with care home residents

Micklewright, Kerry ORCID:, Killett, Anne ORCID:, Akdur, Gizdem, Biswas, Priti, Blades, Pamela, Irvine, Lisa, Jones, Liz, Meyer, Julienne, Ravenscroft, Natalie, Woodhead, Hilary and Goodman, Claire (2024) Activity provider-facilitated patient and public involvement with care home residents. Research Involvement and Engagement, 10. ISSN 2056-7529

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Background: In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on behalf of the research team by Activity Providers (APs) already working within the care homes. This paper provides an account of how PPIE with care home residents can be achieved. Methods: An exploratory design was used to see if it was possible to support “in-house” PPIE, with researchers working at a distance in partnership with care home staff. The National Activity Providers Association recruited five APs working in care homes. A series of optional discussion or activity sessions were developed by the research team in partnership with APs, tailored to reflect the research topics of interest and to make sessions accessible to residents with differing needs. Results: APs facilitated four rounds of PPIE with up to 56 residents per topic, including individuals living with cognitive and communication impairments. Topics discussed included residents’ views on data use, measuring quality of life and the prioritisation of care-related data for study collection. Feedback from the residents was observed to have unexpected and positive changes to participating care homes’ practice. APs valued participation and working with researchers. They identified acquisition of new skills and insights into residents’ thoughts and preferences as direct benefits. Challenges included time pressures on APs and managing emotive feedback. APs were able to approach residents at times convenient to them and in ways that best suited their individual needs. PPIE with residents provided different perspectives, particularly with respect to the importance of different types of data, and constructive challenge about some of the research team’s assumptions. Conclusions: PPIE with APs as research partners is a promising approach to working in an inclusive and participatory way with care home residents. The voices of older care home residents, including those living with cognitive or communicative impairments, are important for the successful and meaningful completion of research.

Item Type: Article
Uncontrolled Keywords: activity provider,aged,care home,older people,participatory action research,patient and public involvement and engagement (ppie),health(social science),health professions(all) ,/dk/atira/pure/subjectarea/asjc/3300/3306
Faculty \ School:
Faculty of Medicine and Health Sciences > School of Health Sciences
Faculty of Medicine and Health Sciences > Norwich Medical School
UEA Research Groups: 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:
Depositing User: LivePure Connector
Date Deposited: 13 Jan 2024 01:37
Last Modified: 25 Jan 2024 01:38
DOI: 10.1186/s40900-023-00537-z


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