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Dying in the Margins: uncovering the reasons for unequal access to home dying for the socio-economically deprived

死于边缘：揭示社会经济贫困者无法平等进入家庭的原因

基本信息

批准号：
ES/S014373/1
负责人：
Naomi Margaret Alice Richards
金额：
$ 49.65万
依托单位：
University of Glasgow
依托单位国家：
英国
项目类别：
Research Grant
财政年份：
2019
资助国家：
英国
起止时间：
2019 至无数据
项目状态：
已结题

来源：
https://gtr.ukri.org/projects?ref=ES%2FS014373%2F1
关键词：
Dying Margins uncovering reasons unequal

项目摘要

There is consistent evidence that most people would prefer to die at home and that this is seen as a marker of a 'good death'. Whilst there has been recent success in some countries, including the UK, in reducing hospital deaths and increasing deaths at home, these gains have not benefitted everyone. Notably, people from more socio-economically deprived areas in the UK have been shown to be less likely to die at home compared to patients from higher socio-economic areas, and this gap is widening. People from socio-economically deprived areas are also less likely to die in a hospice and to access specialist palliative care. However, the reasons for this are not known. Interviews with stakeholders in the consultation phase of this application suggested there is a pressing need for research which furthers understanding of the effects of poverty both on people's opportunities to die at home and their overall end of life experiences. In particular, there is a need for people with direct experience of deprivation and marginalisation to articulate, on their own terms, gaps in current support and potential strategies to improve end of life care for their communities.Our project responds directly to the calls within the literature for socio-economically deprived groups to become an explicit focus for end of life care improvement. We will examine barriers to, and experiences of, home death for people living in poverty in both urban and rural locations. Specifically, we aim to discover: 1) what the specific needs, wants and experiences of people dying in socio-economic deprivation are with regards end of life; 2) the influence of housing type, tenure, and suitability on enabling home dying for people living in socio-economic deprivation; 3) the health and social care innovations which might reduce inequalities, and 4) whether and how far our chosen research methods - participatory visual methods - can generate fresh insights into the dying worlds of the socio-economically deprived and support the translation of findings into practice and policy change. We will use photo-voice, digital storytelling, and the skills of a professional photographic artist, alongside more traditional word-based interview, focus group and observational methods to access the life-worlds and day-to-day experiences of people who are dying in poverty. Both the PI and Co-I (MG) have prior experience deploying these methods and witnessed the multiple ways in which they empower participants to take ownership of the process and the findings. In our previous research they have also generated reusable learning objects and impactful imagery which has shaped public and political opinion. We are therefore confident our choice of methods will enable the project to contribute to a political agenda which recognises the specific health and social care needs of poorer families.This ambitious project will result in multiple interlinked datasets which will be used in a rigorous and self-reflexive way by the project team. High-quality outputs will be developed to help educators, healthcare commissioners, politicians, professionals, and the general public, to reflect critically on the end of life care needs of everyone in society. Ultimately, this project will pioneer creative and ethically sensitive methods of working with those who have lived experience of socio-economic deprivation at the end of life, and harness their expert knowledge and insights, to propose innovative solutions to address structural and material inequalities.

有一致的证据表明，大多数人更愿意在家里死去，这被视为“善终”的标志。虽然包括英国在内的一些国家最近在减少医院死亡和增加家庭死亡方面取得了成功，但这些成果并没有惠及所有人。值得注意的是，与来自社会经济水平较高地区的患者相比，来自英国社会经济水平较低地区的患者在家中死亡的可能性较小，而且这种差距正在扩大。来自社会经济贫困地区的人也不太可能死于临终关怀和获得专业姑息治疗。然而，其原因尚不清楚。在本申请的咨询阶段对利益相关者的采访表明，迫切需要进行研究，进一步了解贫困对人们在家中死亡的机会和他们整体生命结束经历的影响。特别是，有直接贫困和边缘化经历的人有必要以自己的方式阐明当前支持方面的差距和改善社区临终关怀的潜在战略。我们的项目直接回应了文献中对社会经济贫困群体的呼吁，使其成为改善临终关怀的明确焦点。我们将审查城市和农村地区生活贫困的人在家中死亡的障碍和经历。具体来说，我们的目标是发现：1)在社会经济剥夺中死亡的人在生命结束方面的具体需求，愿望和经历是什么；2)住房类型、权属和适宜性对社会经济剥夺人群住房死亡的影响；3)可能减少不平等的卫生和社会保健创新，以及4)我们选择的研究方法-参与式视觉方法-是否以及在多大程度上能够对社会经济上被剥夺的垂死世界产生新的见解，并支持将研究结果转化为实践和政策变革。我们将使用照片声音、数字叙事和专业摄影艺术家的技能，以及更传统的基于文字的采访、焦点小组和观察方法，来接触那些在贫困中死去的人的生活世界和日常经历。PI和Co-I （MG）都有部署这些方法的经验，并见证了他们授权参与者对过程和结果拥有所有权的多种方式。在我们之前的研究中，他们还生成了可重复使用的学习对象和有影响力的图像，这些图像塑造了公众和政治舆论。因此，我们相信，我们选择的方法将使该项目有助于制定一个认识到较贫穷家庭的具体保健和社会护理需要的政治议程。这个雄心勃勃的项目将产生多个相互关联的数据集，这些数据集将由项目团队以严格和自我反思的方式使用。将开发高质量的产出，以帮助教育工作者、卫生保健专员、政治家、专业人员和一般公众批判性地反思社会上每个人的临终关怀需求。最终，该项目将开创创造性和道德敏感的方法，与那些在生命末期经历过社会经济剥夺的人合作，并利用他们的专业知识和见解，提出解决结构和物质不平等问题的创新解决方案。