Gordon Wexler, Samara and Walshe, Catherine (2025) Exploring and understanding different perspectives on the experience of engaging with death doulas and those in activity-aligned roles towards the end of life : An integrative review. Palliative Care and Social Practice. ISSN 2632-3524
Full text not available from this repository.Abstract
Background: The death doula movement is expanding due to dissatisfaction with the medicalization of death and dying. Existing reviews focus on exploring and defining the death doula’s role in providing care. However, the experiences of death doulas or those performing aligned activities for the dying person, families, and healthcare professionals have not been synthesized. Objective: To explore the experiences of engaging with death doulas and those performing aligned activities from multiple perspectives (including the dying person, their families, health and social care professionals, and death doulas or those in activity-aligned roles themselves). Design: A systematically constructed integrative review. Data sources and methods: Medline, CINAHL, Scopus, and Lens.org (searched September 2024) for concepts related to death doula and palliative care. Inclusion criteria: discussion of death doula or aligned activities; dying persons, families, doulas, or healthcare workers’ experiences with death doulas; any study type; any year; in English. Exclusion criteria: birthing, labor, or maternal doulas/midwives. Non-human death, life-limiting illnesses in people who are not in the end-of-life phase, or healthcare professionals or social workers, reviews, protocols, and abstracts. Papers were coded iteratively and synthesized into final themes. Quality appraisal was done using Mixed Method Appraisal Tool scoring. Results: Papers (n = 33) from six countries. Careful analysis and synthesis resulted in the creation of six themes: emotions before and after the engagement, transforming fear through knowledge and literacy, objective companionship, the death doula as a mediator, the death doula “cycle,” and the tension between flexibility and regulation. Conclusion: The limited evidence from literature, including experiential perspectives outside of reports from death doulas or those in aligned-activities roles, indicates that research should continue to explore the benefits of adding these roles to end-of-life care. Positive experiences of engaging a doula or with those performing aligned activities appear related to role flexibility, which seems to facilitate other favorable experiences. However, flexibility also seems to be a cause of role confusion and boundary issues, shedding light on the need to develop regulation that protects both death doulas or those performing similar activities and those they engage with.