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Borgstrom, Erica; Bashir, Kirsten; Clare, Emma; Pestano, Catherine and Ramsey-Jones, Esther
(2024).
Abstract
Background:
Delivery of consistent patient-centred care at the end-of-life care continues to challenge healthcare providers and research continues to suggest that peoples’ needs are not being reliably met. Consequently, healthcare services are looking to innovate how support is provided, such as commissioning doulas to support dying people and those close to them.
Objective:
Within the UK, there is little existing research about peoples’ experience of receiving end-of-life doula support. This paper outlines the design of a survey for the family or friends of a person who received end-of-life doula support.
Design:
To evaluate the role of an end-of-life doula in supporting the dying person and those who care for them, we designed a post-bereavement survey as part of a wider evaluation strategy of doula services. Following multiple literature reviews and an iterative process of consulting with the professional organisation and previous service users, a questionnaire was developed to collect this data. This survey is hosted online, with paper copies available to widen accessibility.
Conclusion:
End of life doula support is a relatively new area of provision for dying people and those important to them, such as family and friends. It is even more innovative to have doula support commissioned as part of a locality's healthcare service. There is a dire need for empirical research to understand the impact of this further. The process of researching the area and designing the evaluation survey for this service was revealing of the complexity of the role and the difficulty of capturing what was found to be helpful for the dying person and those around them.
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