Background
Everyone should have access to high-quality end-of-life care, regardless of their background. However, evidence shows that people from ethnic minority communities often experience poorer access to palliative and end-of-life care and may face barriers linked to racism and wider health inequalities. The COVID-19 pandemic highlighted many of these inequities and strengthened calls for action across health and care systems. Despite growing recognition that racism can affect healthcare experiences and outcomes, its impact on end-of-life care remains under-researched. As the UK population becomes increasingly diverse and the demand for palliative care continues to grow, there is an urgent need for practical approaches that help services provide equitable care for all communities.
Aims and Objectives
This fellowship aims to develop practical tools that help health and care services address racism and improve equity in end-of-life care.
The objectives are to:
- Develop an evidence-informed cultural safety and anti-racism framework for end-of-life care.
- Explore experiences of racism and inequity in end-of-life care and identify opportunities for change.
- Co-produce practical interventions with communities, carers, healthcare professionals and decision-makers.
- Pilot and refine one priority intervention within real-world health and care settings.
- Produce implementation resources and guidance that can support wider adoption and future evaluation.
Methods
The fellowship is organised into four stages.
- Stage 1: Conduct a review of international evidence on frameworks and approaches used to address racism and improve equity in end-of-life care.
- Stage 2: Explore experiences of racism and end-of-life care in Bradford through interviews, workshops and observation, particularly in communities experiencing disadvantage. Findings will be used to co-develop a cultural safety framework for the UK context.
- Stage 3: Work with stakeholders to identify one priority area for action and develop a practical intervention. This intervention will be tested and refined within participating organisations.
- Stage 4: Evaluate how co-production and partnership working were undertaken throughout the study and develop guidance on equitable, community-centred approaches to addressing racism in health and care research.
A key feature of the study is the involvement of community researchers and people with lived experience throughout the project, from design and recruitment through to analysis and dissemination.
Further Information
This project is led by Jamilla Hussain, Consultant in Palliative Medicine and Senior Research Fellow at Bradford Institute for Health Research. The fellowship includes co-production leadership from Shahid Islam and research support from Zuneera Khurshid.
The study is funded through an NIHR Advanced Fellowship and runs from April 2025 to April 2030.
Key outputs will include:
- A cultural safety framework for end-of-life care.
- A Bradford and UK-adapted version of the framework.
- A systems-based logic model and causal loop diagram.
- A pilot intervention and implementation strategy.
- An organisational implementation toolkit.
- Guidance on participatory and place-based approaches to reducing ethnic inequalities.
The work focuses particularly on improving care for Pakistani, Bangladeshi, Black African, Black Caribbean, Eastern European and Roma communities, while recognising the impact of wider factors such as poverty, disability, gender, sexuality and migration history.
If successful, the project will help services build trust with communities, improve cultural safety in end-of-life care, strengthen community partnerships and create practical foundations for reducing ethnic inequalities in palliative and end-of-life care.
