Rawlings Deb, Litster Caroline, Miller-Lewis Lauren, Tieman Jennifer, Swetenham Kate
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. 2021 Mar;29(2):574-587. doi: 10.1111/hsc.13120. Epub 2020 Aug 3.
Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.
死亡关怀师（DD）在临终阶段与患者合作，扮演着多种角色，但他们在医疗和社会护理系统中的角色及定位仍需进一步明确。这项工作的目的是从死亡关怀师的角度探索其在临终关怀中的角色。在一项规模更大的定量调查中，一个由20名死亡关怀师组成的子群体参与了半结构化电话、Skype或Zoom访谈。访谈数据采用主题分析法进行分析。定性分析得出了七个主题：死亡关怀师提供的服务、所做的工作、挑战与障碍、职业偏好、家庭支持、服务合同/费用以及监管。人们普遍认为医疗保健专业人员（HCP）不了解死亡关怀师的工作内容；因此，本研究有助于揭开死亡关怀师角色的神秘面纱，并有可能减少疑虑。由于缺乏死亡关怀师的商业模式，每个死亡关怀师提供的服务以及患者和家属的期望存在不一致之处。临终阶段对患者和家属来说复杂且令人困惑，当工作实践中存在诸多不一致时，有必要进一步探索死亡关怀师的角色及其如何发挥作用。需要更多研究来考察死亡关怀师（DD）、医疗保健专业人员（HCP）和姑息治疗志愿者之间在填补护理服务缺口方面的相互作用，以及如何更无缝地管理这些关系。
