Title: Living well and Dying well for older people within the last year of life in rural and remote communities
Funder: Department of Health and Social Care

Abstract: Background More older people live in rural and remote areas. By 2039 the number of people aged 65 + in rural areas will grow by 50%.Dementia and Stroke are more common in rural areas. Cancer is diagnosed later in those living in rural communities and people may not live as long due to this. People in rural areas may find difficulty accessing palliative care. As a partnership across four nations, we will find out and answer questions as to how care is and can be delivered and to research if there are new ways to deliver care Aims We want to improve palliative and end of life care for older people with dementia, stroke or cancer within the last year of life, living in rural and remote communities across the UK. In Phase 2 we will work with patients and carers to test ways of giving care and new ways of caring for people in the last year of life. Partnership Our 12-month partnership includes older people, carers, patients and public involvement and experience (PPIE), volunteers, social care providers, advocacy groups, primary and secondary care clinicians, community nursing, hospices and palliative care services, commissioners, local and national charities, community leaders and academics. We will encourage social care and health professionals to become involved in research and mentor researchers who have completed a PhD to co-lead funding applications. Methods For Phase 1 we will work with partners to develop links within our rural and remote communities and welcome all who wish to be involved. We will map ways of how care is given and look for examples of how things have worked well and new ways of giving social care and palliative care. We will hold events via Zoom for all involved within our communities to share ideas and allowing everyone in the group to decide key areas for research. Jointly across four nations, top priorities will be co-identified. For Phase 2 we will co-develop studies to answer each top priority. During phase1 we will support post-doctoral researchers with interests in older people, palliative care and rural health, offering mentoring and support to co-lead applications within Phase 2. We will set up a community of practice (group of people who share common concerns) on rurality and older people’s palliative care. We will establish a centre of learning for rural palliative and end of life care giving opportunities to develop connections and to allow research ideas to be taken forward. We will ensure the work of the partnership continues by encouraging researchers to work within rural palliative and end of life care for older people. Impact and Dissemination Bringing together patients, carers and stakeholders from rural and remote areas across the UK ,will allow high quality research. Rural and remote palliative and end-of-life care needs will be identified and addressed and a research community in rural palliative and end of life care will be established. We will write up each workshop as points of learning

Lay abstract: Background The rural population aged 65+ will grow by 50% by 2039. Using examples of dementia, stroke or cancer which have increased prevalence within older people in rural and remote areas and with lack of provision and access to palliative and end of life care, we will establish a partnership across the four nations to identify and answer key questions relating to models of care and service delivery and care interventions. Aims We aim to improve palliative and end of life care for older people with dementia, stroke or cancer within the last year of life, living in rural or remote communities across the UK. In Phase 2 we will evaluate identified current models and interventions and co-develop and test new models and interventions acceptable to rural populations. Partnership Our partnership brings together older people, carers, PPIE volunteers, social care providers, advocacy groups, clinicians, community nursing, hospices and palliative care services, commissioners, local and national charities, community leaders and academics. We will encourage social care and allied health professionals to become involved in research and mentor post-doctoral researchers to co-lead funding applications Methods For Phase 1 we establish further links within our indicative rural and remote communities and as an open partnership, welcome all who wish to be involved. We will map models of existing palliative and end of life care exploring examples of good practice and innovative models for social care and palliative care delivery. We will host virtual stakeholder events within our indicative communities show-casing existing work and using James Lind Alliance principles to set research priorities. Jointly across the four nations we will co-identify top priorities and co-develop studies to answer each research priority for Phase 2 funding. We will identify post-doctoral researchers with interests in older people, palliative care and rural health and offer mentoring linked to NIHR mentoring to support post-docs as Co-I’s within Phase 2. We will develop a community of practice on rurality and older people’s palliative care. We will establish an academy of rural palliative and end of life care providing opportunities for individuals to develop connections with researchers and clinicians, to develop own ideas and identify opportunities for funding. We will build capacity beyond the life of the partnership, encouraging researchers to work within rural palliative and end of life care for older people. Impact and Dissemination Bringing together patients, carers and stakeholders from rural and remote areas across the four nations will enable high quality research addressing rural and remote palliative and end of life care needs to be identified and addressed and ensure a research community in rural palliative and end of life care is established. We will write up each workshop as points of learning.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE