We want to understand how care home activity providers and researchers could work with care home residents to enable them to become involved in research as members of the public and have their voices heard.
Summary
People with “lived experience” can influence research, making it more meaningful and relevant. Public involvement in care home research has typically included older people living in the community or family carers, but residents themselves are rarely involved. COVID-19 stopped our planned public involvement in care homes, as researchers could no longer visit. Perhaps care home activity providers could arrange research public involvement as an activity, as they were part of the staff? We worked with the National Activity Provider Association to try this. Activity providers ran public involvement activities about our research with their residents. Activity providers fed back to the research team, and resident insights informed our research. We now want to learn more about this method of public involvement.
Project Aims
This research asks: Can care home activity provider facilitated resident involvement in research influence research projects? Can it offer a meaningful and positive activity for residents?
Project Activity
To research public involvement, genuine involvement opportunities are needed for residents. This project will use three studies we are involved in (DACHA, TIMES and VICHTA). Our research will observe and ask people (in interviews) about the public involvement to understand if the involvement is possible, enjoyable and influences the research activity and findings.
Different activities will be used by activity providers to enable care home residents to be understood and give their views on the research, depending on resident preference and cognitive ability. Activities will use written words, pictures, videos and games that will explain the studies to care home residents, and help them to use their experience to influence the research (e.g. which questions are important, how to recruit residents).
- We will explore the process of setting up the public involvement activities, including resources needed and costs.
- We will observe the public involvement process.
- We will interview care home activity providers, residents, relatives, care home staff and researchers, asking their experiences and views about the public involvement process.
Latest updates
The project team of practitioners and researchers are meeting regularly and really enjoying working together. We have held team training sessions learning in more depth about each other's work. This will be a huge benefit to researching sensitively in care homes with people living and working in them.
We are pleased to have a favourable opinion from the Newcastle and North Tyneside 2 Research Ethics Committee. We satisfied the committee that the project meets the terms of the Mental Capacity Act 2005 which means that we will be able to include people who lack capacity to consent.
Activity providers (sometimes called activity coordinators, lifestyle leads or wellbeing leads) are interested to get involved, and we will now be developing public involvement activities, with their input.
Our advisory group have been very helpful, including guiding our thinking about our planned literature reviews, and about inclusive language for people in the LGBTQ+ community living in care homes.
Our resident PPI group will be meeting next week for the second time, hopefully with further insights for the sorts of questions we should ask to understand residents' views about public involvement.
Anticipated outputs and potential impact
- A “How to” guide for conducting research involvement activities with care home residents, aimed at researchers and activity providers will be co-produced. There will be 2 versions (activity providers, and researchers). It will outline example vignettes, costs, roles, ways to develop and check shared understanding and meaning between care home residents, AP, and researchers, and ways to evaluate impact. The ‘How To’ guide will be disseminated through Skills for Care, NAPA, NIHR organizations including ARCs, RDS, East of England Regional Research Delivery Network (formerly the Clinical Research Network (CRN) East of England) and ENRICH, CHAIN, MyHomeLife, National Care Forum and Alzheimer’s Society.
- We will link with the North East and North Cumbria ARC 'Developing PPI in Care Homes Community of Practice'. The team will offer to lead seminars for regional RDS teams as part of RDS training so that RDS members are able to support researchers in incorporating resident PI in care home related research. We will offer to contribute to webinars or other tailored events with NAPA, MyHomeLife, National Care Forum and local Care Associations in order to share the findings from the work and promote to care providers and their activity staff the potential role of activity providers in research.
- The team will present the findings of the research at national conferences relevant to care and older people. Possible conferences would be the International Long-term care Policy Network which brings together researchers, practitioners and policy makers, with the aim of influencing research practice in the field, and the British Society of Gerontology annual conference. We will publish 2 open access peer reviewed papers to ensure that the evidence base from the project is freely available in the public domain. We will also write articles aimed at care staff for trade journals that are circulated in the sector such as ‘The Carer’.
Papers/resources associated with this project
Tamara Backhouse, Andrea Kenkmann, Kathleen Lane, Bridget Penhale, Fiona Poland, Anne Killett, Older care-home residents as collaborators or advisors in research: a systematic review, Age and Ageing, Volume 45, Issue 3, May 2016, Pages 337–345, https://doi.org/10.1093/ageing/afv201
Read our latest blog on involving care home residents in research via Activity Providers here
Download Listening to Residents’ voices: Help Shape Research
Who is involved?
- Anne Killett (PI) University of East Anglia,
- Lisa Irvine (University of Hertfordshire),
- Gizdem Akdur (University of Hertfordshire),
- Elspeth Mathie (University of Hertfordshire),
- Terry Hall (University of Hertfordshire),
- Marlene Kelly (Auburn Mere Care Home)
- Talia Leif (London Borough of Barnet),
- Hilary Woodhead (National Activity Providers' Association),
- Margaret Fox (Skills for Care).
Contact us
Anne Killett (a.killett@uea.ac.uk)
If you are a participant in the CHAPPI study please click here for study information forms
