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，65岁及以上的人口将接近4000万。许多人会患上导致死亡的疾病。姑息治疗改善了患有限制生命的疾病的人及其家属的护理经历和结果。探索种族与姑息治疗之间关系的研究表明，护理往往不公平，这意味着来自不同种族群体的患者及其家庭的护理经历和结果都很差。研究人员在探索这些问题时经常使用不同的方法，因此研究结果不容易比较；所提出的研究问题并不总是反映出来自不同种族社区的人们想要什么，研究结果也没有写得清楚或尊重。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菲研究，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一致意见或不一致意见。有了这些信息，我们可以达成共识。我们将寻找居住在英国的多种族社区的人，以前在该领域做过工作的专家研究人员，以及照顾来自多种族社区和慈善机构（如玛丽居里和麦克米伦癌症支持组织）的患者的卫生专业人员。在德尔菲研究的第一阶段，我们将使用开放式问题来获得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。我们将检查他们所有的答案。在第二阶段，我们将发送一份第一阶段所有问题的列表，并请专家从0=不重要到5=非常重要的范围内对每个问题进行评分。如果他们认为仍有问题未列入清单，将鼓励他们补充。然后，每位专家将把他们的分数发回给我们。然后，我们将从整体上总结与会者的观点。在第三阶段，我们将把总结发送给参与者。在这个阶段，他们会被提醒他们之前是如何得分的，以及小组的得分范围。利用这些信息，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它。在整个过程中，没有人会改变他们的分数，如果他们不想。然后我们将整理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使用的方法是否因专业群体或种族群体而不同。我们将邀请所有参与者参加会议，讨论德尔菲的结果，以及研究种族和姑息治疗的最佳方法，以及如何报告研究结果。会议的讨论和德尔菲的结果将为今后开展更好的研究所需的方法提供指导。我们是一个多种族，多专业的研究人员和健康和社会护理专业人员组成的团队，包括两名来自不同种族社区的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。我们将根据需要为他们提供全面的培训和支持。我们将分享我们在《姑息医学》杂志上的发现。这是研究人员和关心病人及其家属的健康和社会护理专业人员的主要期刊。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.