Principles for research on ethnicity in palliative and end of life care: development of a consensus statement

Each year 600,000 UK people die. This number will continue to grow. Many people living in the UK come from ethnically diverse communities. By 2051, nearly 40 million will be aged 65 years and over. Many will experience illnesses that lead to death. Palliative care improves the experiences and outcomes of care for people with life-limiting illnesses and their families. Research that has explored the relationship between ethnicity and palliative care has shown care is often not provided fairly, meaning patients from ethnically diverse groups and their families have poor experiences and outcomes of care. Researchers have often used different methods when exploring these issues so the findings are not easy to compare; the research questions asked have not always reflected what people from ethnically diverse communities want and the findings from the research have not been written clearly or with respect. We aim to produce guidance for researchers on how methods can be improved to understand the relationship between ethnicity and palliative care in the UK. This way we can reduce inequalities and improve experiences and outcomes of palliative care.

One way of doing this is a Delphi study where researchers find people who are experts in the field of interest to work out where they agree or disagree about important issues. With this information, we can reach a consensus. We will seek out people from ethnically diverse communities living in the UK, expert researchers who have done work in the field before, and health professionals who care for patients from ethnically diverse communities and charities e.g. Marie Curie and Macmillan Cancer Support among others.

In Phase 1 of the Delphi study, we will use open-ended questions to obtain these expert participants' opinions on how research questions should be developed, the methods needed to answer questions and how research findings should be reported. We will examine all their answers. In Phase 2 we will send a list of all the issues from Phase 1 and ask the experts to score each one from 0=not important to 5=very important. If in their opinion there are still issues missing from the list, they will be encouraged to add to it. Each expert will then send back their scores to us. We will then summarise participants' views as a whole. In Phase 3 we will then send the summary back to the participants. At this stage, they will be given a reminder of how they scored items before and the range of scores of the group. Using this information each participant will then be asked to think carefully about their scores. They can decide if they want to stick with their score or change it. Throughout the whole process, no one will have to change their score if they do not want to. We will then organise all the scores from Phase 3 so we can arrive at a point of 'consensus'. We will also be able to see if views about methods used when exploring ethnicity and palliative care are different by professional group or across ethnic groups.

We will invite all participants to a meeting where we will discuss the results of the Delphi and the best methods when researching ethnicity and palliative care and how to report findings. The discussion from the meeting and the results of the Delphi will lead to guidance on the methods needed to undertake better research in future.

We are a multi-ethnic, multi-professional group of researchers and health and social care professionals including two patient and public involvement experts from ethnically diverse communities who will be involved in all stages of this important study. We will offer full training and support to them as necessary. We will share what we find in a journal called Palliative Medicine. This is the leading journal for researchers and health and social care professionals who care for patients and their families. We will also share what we find at the European Association of Palliative Care.

BACKGROUND: Palliative care experiences and outcomes vary by ethnicity. However, research into ethnicity and palliative care is often conducted using methods that lack precision, do not reflect concerns of ethnically diverse (ED) communities and do not focus on the quality of care. Guidance is required to improve methods in designing, conducting and reporting ethnicity in palliative care research to reduce inequities and improve care.
AIM: Develop a consensus statement of methods and reporting of qualitative and quantitative research relevant to ethnicity in palliative and end of life care in the UK.
METHODS: 3 phase Delphi method to organize expert opinions among palliative care researchers, social scientists, health/social care professionals and representatives from ED communities. In Phase 1 open-ended questions will elicit participants' views of methodological principles relevant to ethnicity and palliative care in addition to participants' backgrounds. Content analysis will produce a list of principles. In Phase 2 participants will be asked to score principles from 0=not important - 5=very important and add extra principles to the list if needed. We will summarise the participants' views. In Phase 3 participants will be sent a summary of scores to reconsider principles alongside those of the wider group. We will then analyse principle scores to achieve a consensus and examine if principles vary by participant profession, discipline and ethnicity. The study will end with a meeting of participants to discuss the Delphi findings leading to methodological guidance to undertake better research into ethnicity and palliative care leading to a path to patient benefit.
OUTPUTS: With our PPI colleagues, we will publish the consensus guidance in a scientific journal and develop a legacy plan to progress palliative care research among ED communities aimed at achieving equitable care provision to improve patient and family experiences and outcomes.