Suffering in Relation: Hidden Hospice Work

临终关怀的基础是为即将走到生命尽头的人及其家人和亲人提供护理和支持。我们知道，这样的照顾是关键，在减轻身体症状，情绪痛苦，和痛苦。因此，那些在临终关怀工作的人密切参与，无论是在短暂的危机时刻，还是通过长期的疾病，疼痛和痛苦。因此，临终关怀工作者在日常工作中经常面临身体和情感上的痛苦，以及死亡。目前缺乏研究，重点是临终关怀工作者如何科普，他们感受到的情绪类型，以及他们如何体验与病人和家人的关系。我的博士研究将那些提供临终关怀的人的经历和账户置于其关注的中心。这些发现扩展了我们对谁提供护理的理解。它探讨了一个收容所的日常工作，为那里的所有工作人员，从医生和护士到护理助理，清洁工，管家，厨师和治疗师。在奖学金，我将提供一个独特的贡献，阐明非医务人员的经验。他们的重要帐户将与他们的医疗同行一起坐在一起。这部分劳动力目前被学术界和公众所忽视。这项研究改变了对谁提供护理以及护理形式的理解。在这个奖学金中，我将分享研究结果，并进一步推动这一研究议程。我的研究结果提供了与不同感官接触的护理时刻的见解：当他们拖地板时，管家的手在病人的手臂上的触摸，精心准备的香肠三明治作为病人要求的“最后”一餐，以及使用精油来减轻病人的身体和情感痛苦。由于关系往往改变和褪色接近生命的尽头，临终关怀工作者是附近的数字支持。在研究期间将分享的发现中，我认为临终关怀工作者，在他们所有的不同角色中，有时与患者及其家属一起受苦。这项研究揭示了临终关怀工作中所展现的相互和关系上的痛苦，以及工作人员从与他们所遇到的人的密切关系和纽带中获得的享受。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，因为它们告诉我们在生命结束时提供护理，以及照顾我们的人的需求。我的博士研究结果推进了对那些在生活边缘照顾我们的人如何需要情感支持来继续为患者和家庭提供支持的理解。这是在医疗保健系统日益紧张的时候发生的，因为死亡人数已经通过流行病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十八次深入访谈收集的。我将通过期刊文章和博客向学术受众贡献原创研究成果。我还将与临终关怀工作人员进行咨询工作，以进一步了解他们的工作和支持需求，并与英国临终关怀（拥有210个成员组织）合作，传达这项工作和博士研究结果，以启动临终关怀工作人员如何支持他们的工作的国家变化。通过视频和小册子分享他们的声音，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，我将开始解决他们如何被视为护理提供者的问题，确保对这一群体的认可。我将制定一个研究议程，利用博士的新发现，专门关注不同部门的非医务人员的隐藏群体，以扩大关注范围。

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.