Supported Study: Informing the delivery of homecare at the end of life
Project summary
The Challenge
Little is known about the training and support homecare workers need to care for people with advanced illness approaching the last months of life.
The Approach
Operating in Bromley, Hull and Bradford, we carried out interviews and policy analysis, and co-produced training resources to support homecare workers providing end-of-life homecare.
The Outcome
To improve the quality and sustainability of end-of-life homecare by homecare workers through training and informing employment practices, commissioning, and policy.
Institutes and centres
Lead academics
Project funded by
Project Partners
Improving end of life homecare
Our researchers work with the homecare industry and support agencies to develop training and inform employment practices and policies.
The Challenge
Homecare workers are a vital arm of the health team, their importance and the significance of this has been unforgivably forgotten.Reshma Punjabi
Member of Service User and Carer Advisory Group for Supported Study
We know little about the skills and support homecare workers need to provide care to people with advanced illness approaching the last months of life. Homecare workers support the person and their family, working alongside other health and social care providers. However, they are often poorly trained and supported themselves.
Despite their critical role, little is known about the experiences of homecare workers, their training/skills needs and the best ways to support them to provide sustainable, quality, integrated care.
The aim of the SUPPORTED study was to provide insights into their role in providing care for people with advanced illness approaching the last months of life, and to develop the content of training resources that address these needs.
We aimed to better understand the homecare worker role, experiences, and challenges, by talking to homecare workers themselves, as well as homecare clients, their family and friends providing care (‘carers’), and health and social care staff.
We aimed to identify good practice, training gaps and needs for homecare workers and ways to include and support them within the wider care team.
The Approach
The SUPPORTED Study is a partnership between researchers from the Universities of Hull, Sheffield, Kings College London, and Bradford NHS Teaching hospital and is funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research NIHR135128/HSDR.
We conducted a multi-methods study using in-depth case studies across three sites (Hull, Bradford Metropolitan District, and Bromley), which were delivered in three work packages.
Work package 1 focused on understanding the experiences and needs of homecare workers (including training and skills development) and the views of home care clients and family/friend carers, and other health and social care staff about the homecare worker role, including identification of good practice.
We interviewed 133 participants (41 homecare workers, 22 managers, 18 clients, 20 carers, 29 health and social care practitioners and 3 commissioners) in the three areas. Interview participants also had the option to use a visual method called Pictor where they made a diagrammatic representation of care provided (homecare workers) or received (clients and carers) and of their support network, and then ‘telling the story’ behind their diagram. All participants could participate in a conventional interview if preferred.
We also identified and analysed national policy and strategy documents relating to homecare provision as part of end-of-life care.
We also identified and analysed national policy and strategy documents relating to homecare provision as part of end-of-life care.
Work packages 2 and 3 involved
· Mapping the training and education for end-of-life care already available for homecare workers, noting what topics were already covered and were freely available
· Co-producing with homecare workers and managers recommendations for training and education for end-of-life care
· Co-created training resources for use by homecare workers, their managers, and other personnel providing training and education for this workforce relating to end-of-life care, and
· Co-developed recommendations for communities of support available for homecare workers, to enhance the delivery of care and reduce isolation and burnout.
Twelve workshops were held with 77 stakeholders.
Advisory groups
We had two advisory groups, one with service users and carers and another with homecare workers. Members of these groups were involved in developing the study proposal, and the design and development of the study, including participant documents. They were also involved in sense-checking and dissemination of findings.
Dying at home gives people a more controlled sense of death, in a less clinical environment and surrounded by loved ones. Knowing I can honour someone's last wishes as they peacefully pass away at home is a privilege.Michelle Dale
Homecare Worker and member of the Homecare Worker Advisory Group for SUPPORTED Study
The Impact
Work Package 1
Policy document review
We showed that few policy documents recognised the role homecare workers have in the provision of end-of-life (EoL) homecare.
· In general, highly relevant and detailed policy recommendations from 2010 have not been included in current policy or translated into practice.
· There was some recognition that homecare workers need to receive education and training in end-of-life care, but there are few details given about the minimum content and standards, or delivery models.
Interview study
Homecare workers told us the following about their experience of providing end-of-life homecare:
· Homecare workers provide skilled, flexible support which is carefully tailored and adjusted as individuals’ needs change, ensuring the delivery of personalised and responsive care.
· They work with multiple practitioners to support people at end-of-life but are often marginalised and isolated within the wider care team. Their role is often poorly understood, recognised and undervalued by healthcare practitioners; perceived as ‘just a homecare worker’.
· However, they often develop close relationships and in-depth knowledge of individuals; well placed to observe early signs of deterioration and change, and can inform the care provided by the wider care team.
· Homecare workers view supporting people at end-of-life as a privilege, but experience substantial emotional demands including grief when those they support die.
· Many homecare workers are unseen and unheard; not included in communication or collaborative working with other health and social care practitioners.
· Homecare workers routinely have no access to NHS or adult social care colleagues, and can’t access patient records, notes or assessments.
We identified the following training and support needs for homecare workers:
· Preparation and support to deal with death and dying in their practice, including practical (what to do), emotional and psychological aspects of caring for people who are dying.
· Understand what to expect, and changes in care priorities as someone approaches the end of life.
· Know how to access appropriate and timely support in changing situations, and how to manage problems commonly seen at end of life such as pain, breathlessness, or delirium.
· Have skills for specific tasks commonly seen at end of life such as mouth care.
· Understand how religion, culture and death may impact on the care they provide.
· Communication skills for challenging conversations.
Messages for policy and practice
1. National policy guidance around end-of-life care needs should:
o include the social homecare workforce
o stipulate minimum end-of-life care training requirements (formalised and accredited training)
o integrate this support and training into routine job descriptions and as part of the working day
2. Homecare workers are crucial providers of end-of-life homecare, providing the bulk of day-to-day care, and holding important information about their health status
o The homecare workforce should be recognised within end-of-life care policy and amongst the wider multidisciplinary team
o The emotional demands on homecare workers should be recognised in policy and practice and supported.
3. Homecare workers need training and education to provide quality end-of-life care
o Homecare workers should be given mandated time during their usual working hours to access high quality end-of-life training
o End of life training and support of homecare workers should be recognised in policy and guidance
o There should be better inclusion of homecare workforce in the health and social community network of care providing end-of-life care
4. Homecare workers need to be better integrated into the wider social and healthcare workforce team
o People dying at home are not receiving the best care available because those involved are not working together; this division within end-of-life care provision needs to be addressed
o We need change within institutions, organisations, and working cultures so practitioners are trained to know the benefits of working alongside homecare workers and have the structures (e.g., common documentation) in place to do so
o We need everyone involved in end-of-life care to understand the crucial role of homecare workers, how their knowledge and expertise can improve care when we all work together
To find out more about the study, please take a look at our study newsletters:
Newsletter 1, Newsletter 2, Newsletter 3, Newsletter 4, Newsletter 5, Newsletter 6
Publication
Forward, C. et al. (2024) ‘Needs and experiences of homecare workers when supporting people to live at home at the end of life: a rapid review’, BMJ supportive & palliative care (Print), p. spcare-004737.
Elliott-Button, HL. et al. (2025) ‘Policy gaps regarding social homecare in the context of end-of-life; a policy document analysis’ medRxiv 2025.07.14.25331508 (preprint); doi: https://doi.org/10.1101/2025.07.14.25331508
White, C. et al. (2025) ‘Experiences of delivering social homecare at end-of-life: insights from a qualitative study drawing on multiple perspectives’ medRxiv 2025.07.11.25331358 (preprint); doi: https://doi.org/10.1101/2025.07.11.25331358
Bayley, Z. et al. (2025)’ Addressing Barriers to Interprofessional Working with Homecare Workers in Community Palliative Care: Insights from a Multi-site Qualitative Case Study in England’ medRxiv 2025.08.14.25333668(preprint); https://doi.org/10.1101/2025.08.14.25333668
Bayley, Z. et al. (2024) Correction: Supported: Supporting, enabling, and sustaining homecare workers to deliver end-of-life care: A qualitative study protocol. PLoS ONE 19(2): e0298925. https://doi.org/10.1371/journal.pone.0298925
This study will give us the level of evidence with regard to the quality and skill of social care, but also be instrumental in supporting the spread and implementation of quality end-of-life care and training within the sector.Joan Bothma
Head, Care at Carepoint Services Ltd & SUPPORTED Study Management Committee Member