The impact of racism at the end-of-life has not been well researched. Yet we are all affected by death, dying and grief, and our cultural background plays an important role at these times. In the UK, ethnic diversity is expected to continue to rise. As will the number of people dying each year and the cost of these deaths to the NHS. For these reasons, addressing unfairness (inequalities) at the end-of-life is a research priority for the NIHR in 2023.
Aims
This study aims to develop practical tools to address racism at the end-of-life, so everyone gets the care they need, including carers and those grieving.
The tools include:
- A clear guide (called a framework) that explains what fair end-of-life care, that addresses racism, should look like. This framework will allow services and service users to identify areas for improvement.
- A series of actions (called an intervention) that deliver a key part of the framework.
- A toolkit that explains how to deliver the actions, so this is done as well as possible so real change can happen.
All tools will be developed with key people involved in end-of-life care (called stakeholders). These include people with personal experience of end-of-life care and grief, carers, service providers and decision-makers.
Study design
There are four parts to the study:
1. We will bring together information from across the world on frameworks and guides for tackling racism in end-of-life care.
2. We will explore the experience of racism at the end-of-life, and possible solutions, in an area of the UK with many different ethnic groups (Bradford). We will run workshops and interviews and observe day-to-day interactions, especially in areas where people have fewer opportunities.
The stakeholders will then use the findings from parts 1 and 2 to produce a framework to address racism in end-of-life care in the UK.
3. Stakeholders will then choose one part of the framework to put into practice as soon as possible. They will identify the series of actions (the intervention) needed to deliver this. Two different organisations will then test out these actions and keep refining them during testing, so they work as well as possible.
4.Throughout the study, the people involved and the researchers will reflect on how fair and open the study has been. These findings will be used to develop a guide on how to work in partnership with community members to develop actions to address racism.
Patient and Public Involvement
Ethnic minority patients, community members and community researchers have informed the study’s design. Three ethnic minority community researchers will be part of the research team.
Sharing findings
There will be a dedicated group of community members and local and national decision-makers who will ensure the tools and findings are relevant and shared in an understandable way with all key stakeholders.