The voices of death doulas about their role in end‐of‐life care

Deb Rawlings, Caroline Litster, Lauren Miller-Lewis, Jennifer Tieman, Kate Swetenham

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    Abstract

    ‘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‐oflife. 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.
    Original languageEnglish
    Pages (from-to)12-21
    Number of pages10
    JournalHealth and Social Care in The Community
    Volume28
    Issue number1
    Early online date25 Aug 2019
    DOIs
    Publication statusPublished - 1 Jan 2020

    Bibliographical note

    This is the peer reviewed version of the following article:
    Rawlings, D., Litster, C., Miller-Lewis, L., Tieman, J., & Swetenham, K. (2019). The voices of death doulas about their role in end-of-life care. Health & Social Care in the Community, 28(1), 12–21. https://doi.org/10.1111/hsc.12833
    Copyright © 2019 John Wiley & Sons Ltd.

    Keywords

    • Death Doulas
    • palliative care
    • Community
    • end‐of‐life
    • health and social care
    • models of care
    • end-of-life
    • community
    • death doula

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