Palliative & Supportive Services, Flinders University, Adelaide, SA, Australia.
Southern Adelaide Palliative Services, Southern Adelaide Local Health Network, Bedford Park, SA, Australia.
Health Soc Care Community. 2020 Jan;28(1):12-21. doi: 10.1111/hsc.12833. Epub 2019 Aug 25.
'Death Doulas' have emerged as a relatively new role supporting dying people and their family members; however there is a lack of clarity around how the role is enacted, and around the death doula role within health and social care systems. This study aimed to explore the ambiguity of the role of death doulas in end-of-life care including the skills, training and experience of death doulas; how the role is communicated to the community; and the relationships to palliative care providers and other health professionals. People identifying as death doulas were invited to participate in an online survey between April and June 2018. Ethical approval was obtained. A descriptive cross-sectional study was conducted, and purposive sampling was used to survey death doulas registered with death doula training organisations, newsletters and email distribution lists. Questions were based on the researchers' previous findings about the role. One hundred and ninety completed or partially completed surveys were received. Results showed diversity within, and some commonalities across the sample in terms of: training, experience and skills; Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals (including palliative care) at the end-of-life. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don't have responsibility for. However, the roles and scope of practice of death doulas is not clear-cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation.
“死亡指导师”是一个相对较新的角色，旨在为临终者及其家属提供支持；然而，人们对于该角色的具体履行方式以及其在卫生和社会保健系统中的角色定位并不明确。本研究旨在探讨死亡指导师在临终关怀中的角色模糊性，包括死亡指导师的技能、培训和经验；该角色如何向社区传达；以及与姑息治疗提供者和其他卫生专业人员的关系。邀请自称为死亡指导师的人在 2018 年 4 月至 6 月期间参加在线调查。本研究获得了伦理批准。进行了描述性横断面研究，并采用目的抽样法对死亡指导师培训组织、通讯和电子邮件分发列表中的死亡指导师进行调查。问题基于研究人员之前关于该角色的发现。共收到 190 份完整或部分完成的调查。结果显示，在培训、经验和技能方面，样本内存在多样性，也存在一些共性；死亡指导师的出现不仅是对家庭和护理人员的巨大需求的回应，也是对临终期卫生保健专业人员（包括姑息治疗）的需求的回应。他们发现卫生和社会保健服务提供方面存在差距，可能承担了卫生专业人员没有责任的任务。然而，即使在他们的群体中，死亡指导师的角色和实践范围也不明确，这使得患者和家属在选择死亡指导师时感到困难，尤其是由于缺乏监管和标准化培训，指导师在没有监督的情况下工作，而且往往孤立无援。
