Care of people at the end of their lives in the rural and coastal communities of the South West Peninsula of England: A participatory realist evaluation

Background Death and dying are a natural and unavoidable part of our lives; the significance of high-quality care in the last year of life cannot be underestimated (3).There are significant inequalities in access to end of life (EoL) care including geographical inequality. The Southwest (SW) Peninsula region of England, encompassing Devon, Cornwall and the Isles of Scilly, and Somerset, is a largely rural area with an extensive coastline, 78.2% of the population live in rural inland, coastal rural, or coastal town locations (15) and the area has some of the oldest populations and projected need for EoL Care in the UK. Aims To identify inequalities in access to, and experiences of, EoL care in the SW Peninsula, to inform decision-making about EoL care services in coastal and rural communities across the UK. Objectives • Map and understand inequalities in EoL care in coastal and rural communities • To understand the conditions that generate good care at the EoL and factors driving inequalities. Explore access and outcomes associated with different pathways of service provision for people at the EoL • Build (with stakeholders) contextualised explanations of how inequalities in service provision/delivery can be addressed locally through actionable insights, and commissioning • Use programme theories and strategic intelligence to inform and influence strategy and system (ICB) impact and contribute to wider policy and evidence development to address geographical inequalities in EoL care • Develop a platform of work to contribute to the local, national, and international evidence base on EoL, including how strategic intelligence can be better deployed to support future commissioning. Methods The study will use a participatory realist approach with four work packages (WP) which will run concurrently across 28 months. WP1. 12 Case studies across the 6 geographical networks for EoL care and 6 population groups including interviews with patients, family, health care and voluntary sector professionals; focused ethnographies; and focus groups. WP 2. Survey with EoL leads across the UK, and 30 – 35 interviews with local and national stakeholders, EoL care policy analysis; systematic review of global innovations to address challenges to providing EoL care in rural and coastal areas. WP3. Analysis of routinely collected data collected using local and national data sets. WP4. Synthesis of WP 1-3. Six workshops will take place with stakeholder groups to support development and refinement of programme theory, stakeholder involvement, knowledge exchange, and policy impact. Analysis Data analysis will initially be inductive (working 'outwards' from particular instances) then deductive (testing propositions). Analysis will be iterative, using the different data sources within and across all the WPs to develop our understanding of the relationships between context, mechanisms, and outcomes of care for people at the EoL in the SW Peninsula. Dissemination This proposal has been co-produced with public partners and key stakeholders including all the hospices across the SW Peninsula. Their engagement and involvement is central to the design and delivery and dissemination of the study. The study will support the development of policy on EoL inequalities, readdress EoL research inequalities in areas of high need. We will develop policy briefings, publish findings in peer-reviewed journals, present at national and international conferences.