Enabling Meaningful Participation In Research in Elder Residential Care

presenter(s) Anne Killett | School of Health Sciences, University of East Anglia
Fiona Poland | School of Health Sciences, University of East Anglia
Bridget Penhale | School of Health Sciences, University of East Anglia
Tamara Backhouse | School of Health Sciences, University of East Anglia
Andrea Kenkmann | School of Health Sciences, University of East Anglia
Kathleen Lane | School of Health Sciences, University of East Anglia


ABSTRACT

Objective: This presentation will report the early findings of research building the evidence for effective collaboration between older people resident in care settings and researchers investigating long term care. Background: Older people resident in care homes bring particular perspectives/expertise in setting the research agenda. 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). There are, however, particular challenges to meaningful Patient and Public Involvement (PPI) in research in residential settings. Residential care provision is complex and brings together commerce, public policy, regulation, health and social care activity in settings that are at once both a home for one group of people and a workplace for another group of people. Residents are likely to have a combination of physical and sensory needs, and may have cognitive difficulties. They may well have limited energy and additional needs in relation to frailty. There may also be 15:15 – 16:45 Parallel sessions 21 potential risks to the individual of becoming an activist in a closed social environment. Researchers may therefore be reluctant and over-conservative with plans for PPI as they conceive and develop projects. This research project aims to find out who are the relevant ‘patients and public’, what has been successful in achieving PPI in residential settings, what are residents’ priorities for involvement in research and what concerns residents have about involvement in research. Data and methods: The research design involves a systematic review of relevant literature followed by focus group discussions. The active involvement of older people with experience of residential care settings is central and fundamental to this project. Their involvement is facilitated in two main ways: through membership of an advisory group that meets regularly throughout the project, and though direct, supported, work with the researcher. The systematic review of health research studies which have actively involved residents in care home settings in the research process includes peer reviewed publications across the range of research methodologies (relevant grey literature is also being retrieved and reviewed). The findings of the systematic review will be discussed and refined with focus groups. The focus groups are designed to support the active participation of older residents (with particular consideration given to the location, size of the group, support to review materials in preparation for the group, attend, and participate in the discussion). Findings: This presentation will report the findings of the systematic review and ongoing coproduction with older care home residents. Policy Implications: New approaches to care and support older people will be needed as the demographic ratios between numbers of people needing help and support and numbers of people able to provide support change. Any acceptable solutions must be developed in active collaboration with older people themselves.


date 1 September 2014


part of event ILPN International Conference 2014

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