Title: Supporting, enabling and sustaining home care workers to deliver end-of-life care: a multiple-methods community-based case study
Funder: Department of Health and Social Care

Abstract: RESEARCH QUESTION: What is the best way to support and train homecare workers (HCWs) to deliver good end-of-life care (EoLC) at home. BACKGROUND: Homecare helps people stay at home and live well during illness, and when dying, helps prevent avoidable residential care or hospital admissions. HCWs support the person and family but work alone, with little peer-learning or support, exacerbating a lack of EoLC training. This may contribute to high staff turnover straining continuity of care. Emerging concerns about HCWs providing EoLC in dementia are: i) emotional attachment and a lack of bereavement support; ii) unmet training needs; and iii) blurred professional boundaries. Challenges facing HCWs in other advanced diseases are largely unexplored. Due to projected increased demand, a robust HCW workforce skilled in EoLC is key to prevent a rise in avoidable and unwanted hospital deaths. AIMS AND OBJECTIVES: To improve the quality and sustainability of EoLC by HCWs through skill development and empowerment, and to inform employment practice, commissioning and policy by: 1. Understanding HCWs’ experiences and needs (e.g., training, skills) and views of care users and their family/friends (carers), and other health and social care staff about the HCW role, and what defines good practice (Work Package 1 [WP1]) 2. Determining care organisational views and priorities and identify gaps in policy guidance about HCWs’ role in EoLC (WP1) 3. Identifying HCWs’ EoLC training/skills needs, developing recommendations and HCW training resources that can be evaluated (WP2&3) 4. Identifying ways to include and support HCWs in the wider care team around users/carers to transform support, reduce isolation and burnout (WP2&3) METHODS: Multi-methods study: 1) Multiple in-depth case studies (Hull, Bradford Metropolitan, Bromley [South London]) with qualitative interviews/focus groups. We will use the Design of Care Study Research in Health Care Case Study model.3 Although case studies are often single,4 we have chosen three to add breadth and wider applicability, comparability and generalisation. (WP1a) 2) Content analysis of local/national policy documents relevant to EoLC. (WP1b) 3) Data synthesis alongside stakeholder (Partner, service user/care, HCW) engagement to inform a co-designed HCW training resource (WP2). We will conduct initial user testing for acceptability and relevance (WP2), and develop policy and practice recommendations with our Partner, service user/carer, and HCW groups. (WP3) Bronfenbrenner’s Ecological Systems Theory,1 with inter-related systems (micro-, meso-, macro-, exo-, chrono-), enabling a whole system approach, adapted for palliative care, is the theoretical framework informing our design and analysis. Stakeholder groups will meet at least 6 monthly ensuring meaningful input throughout. Deliverables will be i) an HCW training resource ready for formal evaluation, and ii) recommendations for policy and practice. TIMELINES FOR DELIVERY: This is a 30-month study: WP1 (m -3 to 16). Preparation of study documents and staff recruitment will start on funding confirmation. WP2 (m7 to 27) completion of document analysis. WP3 (m6 to 28): data synthesis will start at m16, exploration of a support network will begin during WPs 1 &2. IMPACT: A skilled, confident workforce with lower staff turnover will provide better quality care. Wide dissemination across policy and practice will add to the push to improve social care and professionalism.

Lay abstract: WHAT IS THE PROBLEM? Most people wish to spend as much time as possible at home at the end-of-life. Many need personal care from NHS and social services; mostly from homecare workers not nurses or social workers. Homecare workers can make the difference between staying at home or not. Although homecare workers may work alongside nurses and other health staff, they work outside the NHS and have limited, if any, end-of-life care training. There is often high staff turnover which makes it hard to train and support homecare workers and provide quality care for people wishing to stay at home at end-of-life. More people than usual died at home during COVID-19, increasing pressure on these workers. To support the growing number of people needing homecare at end-of-life (predicted to increase by 42% by 2040), and those providing it, we need skilled and supported homecare workers. WHAT DO WE WANT TO ACHIEVE? To 1) understand the experiences of homecare workers providing end-of-life care, the care given, how they work with health and council staff, their clients’ family/friends, and what everybody (including the person receiving care) considers is needed to provide best care; 2) assess how local and national guidance helps – or not - homecare workers to give best end-of-life care; 3) produce recommendations for homecare worker end-of-life skills development and support (who for, what to include and how to provide it), 4) to develop an end-of-life online training module; 5) make recommendations on how to include and support homecare workers in the wider care team to reduce their isolation and burnout. HOW WILL WE DO THIS? Part 1a. We will study end-of-life homecare provision in three areas (Hull, Bradford, and Bromley), talking to people with different viewpoints: i) homecare workers, ii) people receiving care, and iii) others involved (family/friends; health workers; homecare managers; council funders and care planners). Part 1b. We will look at local and national policy documents to understand “rules” about what services provide for end-of-life homecare, how care should be provided, and how workers should be trained and supported. Parts 2 &3. We will bring findings together to a) develop and test a training module and b) make recommendations for support and training, how to best ensure homecare workers work with other services to provide support for each other. HOW HAVE PEOPLE WITH EXPERIENCE HELPED? We involved seven people with personal experience of receiving or providing end-of-life homecare from the Social Work Lived Experience and Involve Hull groups. There was strong support for our approach looking at all aspects of the subject. They felt homecare workers were often vital towards the end-of-life, but poor support and training undermined this, and care workers often did not know what to expect (e.g., changing care needs, dealing with emergencies). They agreed that end-of-life care by homecare workers is seen by many as poorly valued, and training hard to access. They emphasised the need to improve quality of care at end-of-life. HOW WILL WE SHARE OUR FINDINGS? We will share findings with policymakers who set national and local instructions for end-of-life care. Through events, briefings, articles, and social media we will shall reach study participants, home-care managers and employers, training providers, care funders and homecare groups, unions, and others. The training we develop will be ready for full testing.

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE