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

每年有60万英国人死亡。这一数字将继续增长。许多生活在英国的人来自不同种族的社区。到2051年，将有近4000万人达到65岁及以上。许多人将经历导致死亡的疾病。姑息治疗改善了对患有限制生命的疾病的人及其家人的护理体验和结果。探索种族和姑息治疗之间关系的研究表明，治疗往往不公平，这意味着来自不同种族群体的患者及其家人的护理体验和结果很差。研究人员在探索这些问题时经常使用不同的方法，因此结果不容易比较；提出的研究问题并不总是反映来自不同种族社区的人的需求，研究结果写得不清楚或不受尊重。我们的目标是为研究人员提供指导，指导他们如何改进方法，以了解英国种族和姑息治疗之间的关系。这样我们就可以减少不平等，改善姑息治疗的体验和结果。其中一种方法是德尔福的一项研究，研究人员找到感兴趣领域的专家，找出他们在重要问题上的共识或分歧。有了这些信息，我们就可以达成共识。我们将寻找居住在英国的不同种族社区的人，以前在这一领域做过工作的专家研究人员，以及来自不同种族社区和慈善机构(如玛丽·居里和麦克米伦癌症支持等)照顾患者的医疗专业人员。在德尔福研究的第一阶段，我们将使用开放式问题来获取这些专家参与者对如何开发研究问题、回答问题所需的方法以及如何报告研究结果的意见。我们将研究他们的所有答案。在阶段2中，我们将发送阶段1中所有问题的列表，并要求专家对每个问题进行评分，从0=不重要到5=非常重要。如果他们认为清单中仍然缺少问题，将鼓励他们增加问题。然后每个专家都会把他们的分数发回给我们。然后，我们将总结与会者的整体意见。在阶段3中，我们将把摘要发回给参与者。在这个阶段，他们将被提醒他们以前是如何评分的，以及小组的得分范围。使用这些信息，每个参与者将被要求仔细考虑他们的分数。他们可以决定是坚持自己的分数，还是改变分数。在整个过程中，如果不想，没有人必须改变自己的分数。然后我们将组织第三阶段的所有分数，这样我们就可以达成共识。我们还将能够看到，在探索种族和姑息治疗时所使用的方法是否因专业群体或跨种族群体而有所不同。我们将邀请所有参与者参加一次会议，在那里我们将讨论德尔菲的结果，以及研究种族和姑息治疗的最佳方法，以及如何报告结果。会议的讨论和Delphi的结果将导致对未来进行更好研究所需方法的指导。我们是一个由研究人员、卫生和社会护理专业人员组成的多种族、多专业团体，其中包括来自不同种族社区的两名患者和公众参与专家，他们将参与这项重要研究的所有阶段。我们将在必要时为他们提供全面的培训和支持。我们将分享我们在一本名为《姑息医学》的期刊上的发现。这是为照顾病人及其家人的研究人员和卫生及社会护理专业人员撰写的领先期刊。我们还将分享我们在欧洲姑息治疗协会的发现。

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.