Suffering in Relation: Hidden Hospice Work

关系中的痛苦：隐藏的临终关怀工作

• 批准号: ES/X006662/1
• 负责人: Natalie Richardson
• 金额: $ 11.98万
• 依托单位: University of York
• 依托单位国家: 英国
• 项目类别: Fellowship
• 财政年份: 2022
• 资助国家: 英国
• 起止时间: 2022 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FX006662%2F1
• 关键词: Suffering; Relation; Hidden; Hospice; Work

Hospices are grounded in providing care and support to people reaching the end of life, as well as to their families and loved ones. We know that such care is pivotal in relieving physical symptoms, emotional pain, and distress. As such, those working in hospices are intimately involved, either in fleeting moments of crisis or through prolonged periods, in illness, pain, and suffering. Hospice workers are therefore routinely exposed to physical and emotional suffering, as well as death, in their everyday work. There is a lack of research that focuses on how hospice workers cope, the types of emotions they feel, and how they experience relationships with patients and families. My PhD research placed the experiences and accounts of those providing end-of-life care at the centre of its focus. The findings extend our understanding about who provides care. It explores day-to-day work in a hospice for the whole range of workers there, from doctors and nurses to care assistants, cleaners, housekeepers, cooks, and therapists. In the fellowship, I will offer a unique contribution by illuminating the experiences of non-medical staff. Their important accounts will sit alongside that of their medical counterparts. This sector of the workforce is currently overlooked, both within academia and public understanding. This research shifts understandings of who provides care, and the forms that this adopts. In this fellowship, I will share findings and further this research agenda. My findings offer insights to moments of care that engage with the different senses: the touch of a housekeeper's hand on a patient's arm as they mop the floors, the careful preparation of a sausage sandwich as a patient's requested 'final' meal, and the use of essential oils to ease a patient's physical and emotional pain. As relationships often alter and fade towards the end of life, hospice workers are nearby figures of support. In the findings that will be shared during the fellowship, I argue that hospice workers, in all their different roles, sometimes suffer with and alongside patients and their families. The research reveals the reciprocal and relational suffering that unfolds in hospice work, as well as the enjoyment the staff gain from their close relationships and bonds with those they meet. These findings are important for hospice staff, patients, healthcare organisations, as well as for all of us, as they tell us about the provision of care at the end of life, and the needs of those that care for us. My PhD findings advance understandings about how those who care for us at the margins of life need emotional support to continue to give support to patients and families. This comes at a time where healthcare systems are increasingly stretched and as death tolls have been thrust into our daily lives through the pandemic. The fellowship builds on the PhD research by sharing the everyday experiences of hospice workers, which were gathered through six months of observations and eighteen in-depth interviews. I will contribute original findings to academic audiences through journal articles and blogs. I will also conduct consultation work with hospice staff to further understand their work and support needs, and, in collaboration with Hospice UK (which has 210 member organisations), communicate this work and PhD findings to initiate national change in how hospice staff are supported in doing their work. Sharing their voices through a video and booklet, the fellowship will emphasise the hidden work of the overlooked non-medical workforce. The training and support needs of this group are particularly neglected, and I will begin to address how they are perceived as providers of care, ensuring recognition for this group. I will develop a research agenda drawing on emergent findings from the PhD to focus specifically on hidden groups of non-medical staff in different sectors to broaden the focus.

临终关怀院的宗旨是为临终之人以及他们的家人和亲人提供关怀和支持。我们知道，这种护理对于缓解身体症状、情感痛苦和痛苦至关重要。因此，那些在临终关怀院工作的人，无论是在短暂的危机时刻，还是在长期的疾病、痛苦和苦难中，都与他们密切相关。因此，临终关怀工作者在他们的日常工作中，经常面临身体和情感上的痛苦，以及死亡。关于临终关怀工作者如何应对，他们感受到的情绪类型，以及他们如何体验与病人和家属的关系，缺乏研究。我的博士研究将那些提供临终关怀的人的经历和叙述放在了研究的中心。这些发现扩展了我们对谁提供护理的理解。它探讨了在临终关怀医院工作的所有员工的日常工作，从医生、护士到护理助理、清洁工、管家、厨师和治疗师。在研究金中，我将通过阐明非医务人员的经验来提供独特的贡献。他们的重要账户将与医疗同行的账户放在一起。这部分劳动力目前在学术界和公众的理解中都被忽视了。这项研究改变了人们对谁提供护理以及护理采取的形式的理解。在这个奖学金项目中，我将分享我的研究成果并进一步推进这一研究议程。我的研究结果让我们对护理中涉及不同感官的时刻有了深刻的认识：清洁工在拖地板时用手触摸病人的手臂，精心准备病人要求的“最后一餐”香肠三明治，以及使用精油来缓解病人身体和情感上的痛苦。随着人们的关系在生命的尽头经常发生改变和消退，临终关怀工作者是在他们身边提供支持的人。在研究期间将与大家分享的研究结果中，我认为，从事各种不同工作的临终关怀工作者，有时与病人及其家属一起承受痛苦。研究揭示了在安宁疗护工作中相互的和关系的痛苦，以及员工从他们与他们遇到的人的亲密关系和联系中获得的快乐。这些发现对临终关怀工作人员、病人、医疗机构以及我们所有人都很重要，因为它们告诉我们临终关怀的提供，以及照顾我们的人的需求。我的博士研究结果促进了人们对那些在生命边缘照顾我们的人如何需要情感支持来继续为病人和家属提供支持的理解。目前，卫生保健系统日益捉襟见肘，死亡人数因疫情而进入我们的日常生活。该奖学金建立在博士研究的基础上，通过分享临终关怀工作者的日常经验，这些经验是通过六个月的观察和18次深度访谈收集的。我将通过期刊文章和博客向学术读者贡献原创发现。我还将与安宁疗护人员进行咨询工作，以进一步了解他们的工作和支持需求，并与英国安宁疗护组织（拥有210个成员组织）合作，沟通这项工作和博士研究结果，以启动如何支持安宁疗护人员工作的国家变革。通过视频和小册子分享他们的声音，该奖学金将强调被忽视的非医疗劳动力的隐藏工作。这一群体的培训和支持需求尤其被忽视，我将开始讨论他们如何被视为护理提供者，以确保对这一群体的认可。我将根据博士的新发现制定一项研究议程，特别关注不同部门的非医务人员的隐藏群体，以扩大关注范围。