Understanding PPI in older people’s research – how best to enable meaningful PPI in research with older people living in residential settings (RREACH)
Type of research:
Health services research incorporating systematic review and focus groups.
Background & Scientific Rationale:
There is increasing recognition of the importance of research to develop the evidence base for interventions and services in residential settings for older people. There are resources developed to support researchers in best practices for researching with both people and institutions (ENRICH). There is, however, uncertainty about the possibility and potential scope of ‘patient and public involvement’ (PPI) in research in residential settings. Price et al (2013) have argued that the ‘fourth age’ is socially and psychologically constructed as ‘abject’ and that as such older people may be reluctant to engage with the implications of residential care (or even with research). Active engagement of older people with support needs in, for example, individual budgets has been found to be potentially anxiety provoking and associated with lower levels of well-being (Netten et al 2012). A JRF report on involvement of older people identified that the involvement of older people in residential services was in need of further development (Carter and Beresford 2000). Recent research in care homes using participatory approaches has shown that older people resident in care settings are willing and able to be actively involved in research, and when they are, the research questions, priorities and practices are refined, with the potential for additional insights, depth and relevance for the research findings (Burns et al 2012, Killett et al 2012). However, the resource environment in care provision is highly constrained. Choices have to be made in order to maximize the returns from finite/fixed budgets. Interventions and provision developed with processes closely informed by the perspectives and priorities of older people themselves, are most likely to be feasible and make effective use of resources. Residents bring particular perspectives/expertise in setting the research agenda. There are particular challenges to meaningful PPI in residential settings including the complex nature of residential care provision which brings together commerce, public policy, regulation, health and social care activity in a setting that is at once both a home for one group of people and a workplace for another group of people. The setting and context are important for both groups, albeit in different ways. Residents are likely to have combination of physical and sensory needs, and may have cognitive difficulties. They may well have limited energy and attention spans and additional needs in relation to frailty. There may also be potential risks to the individual of becoming ‘active’ in a closed social environment. Researchers may therefore be reluctant and over-conservative with plans for PPI as they conceive and develop projects.
Research questions / aims:
The research aimed to answer the following two questions:
- What are the key research practice messages from successful collaborative research involving older care home residents?
- Who are the ‘patients and public’ when carrying out research in care homes?
A systematic literature review was conducted to see how older care-home residents had been involved in research to date. Focus groups and qualitative interviews were undertaken with older care-home residents and care-home staff from different homes to find out their views on residents being involved in shaping research.
The research team comprised a collaborative team of older care-home residents, older
people from the community, a care-home manager and researchers.
The active involvement of older people with experience of residential care settings was central and fundamental to this project. The involvement was facilitated in two main ways: through membership of an advisory group that met regularly throughout the project, and though direct, supported, work with the researchers.
Findings and outputs:
The main findings from the research were that with appropriate resources and practices, older care-home residents are interested in being Patient and Public Involvement (PPI) members in research. Key issues for active involvement of older care home residents in research were:
- respecting individual interests
- resources to support building of relationships
- flexible and adaptable approach of researchers
BITE sized summary and publication:
- BITE: Residents Research-Active in Care Homes (RReACH)
- Publication: Older care-home residents as collaborators or advisors in research: a systematic review
Guidance for researchers
The RReACH project has developed guidance for researchers on actively involving care home residents in guiding research, as ‘Patient and Public Involvement’ collaborators. The guidance can be seen by clicking on the first link below. The ENRICH (Enabling Research in Care Homes) website has extensive information for researchers for carrying out research in care homes, which can be accessed in the second link.
- Residents Research-Active in Care Homes (RReACH) Guidance Jan 2016
- ENRICH ‘carrying out research studies in care homes’
- Older care-home residents and the impact of research activity – A blog from the RReACH Seminar Feb 2016
- A step forward: reflections on a workshop on PPI with older care-home residents – A blog by Anne Killet and the RReACH Team, November 2015
For further information on this project, contact Professor Fiona Poland email: firstname.lastname@example.org