{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T08:08:40Z","timestamp":1777882120105,"version":"3.51.4"},"reference-count":47,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2024,1,1]],"date-time":"2024-01-01T00:00:00Z","timestamp":1704067200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat\ufffdCare"],"published-print":{"date-parts":[[2024,1]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Delivery of consistent patient-centred care at end-of-life care continues to challenge healthcare providers and research continues to suggest that peoples\u2019 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>Within the United Kingdom, there is little existing research about peoples\u2019 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>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\u2019s 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 revealed the complexity of the role and the difficulty of capturing what was found to be helpful for the dying person and those around them.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/26323524241273489","type":"journal-article","created":{"date-parts":[[2024,10,17]],"date-time":"2024-10-17T14:25:51Z","timestamp":1729175151000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Understanding end-of-life doula care provision: reporting on the design of a bereavement survey to evaluate doula support"],"prefix":"10.1177","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-6955-246X","authenticated-orcid":false,"given":"Kirsten","family":"Bashir","sequence":"first","affiliation":[{"name":"The Open University, Milton Keynes, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5610-9732","authenticated-orcid":false,"given":"Emma","family":"Clare","sequence":"additional","affiliation":[{"name":"End of Life Doula UK, Derby, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Pestano","sequence":"additional","affiliation":[{"name":"The Open University, Milton Keynes, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Esther","family":"Ramsey-Jones","sequence":"additional","affiliation":[{"name":"The Open University, Milton Keynes, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1009-2928","authenticated-orcid":false,"given":"Erica","family":"Borgstrom","sequence":"additional","affiliation":[{"name":"The Open University, Walton Hall, Milton Keynes MK7 6AA, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2024,10,17]]},"reference":[{"key":"bibr1-26323524241273489","volume-title":"End of Life Care Strategy: promoting high quality care for all adults at the end of life","author":"Department of Health","year":"2008"},{"key":"bibr2-26323524241273489","unstructured":"National Palliative and End of Life Care Partnership. Ambitions for palliative care and end of life care, https:\/\/www.england.nhs.uk\/wp-content\/uploads\/2022\/02\/ambitions-for-palliative-and-end-of-life-care-2nd-edition.pdf (2021, accessed 13 May 2024)."},{"key":"bibr3-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(21)02314-X"},{"key":"bibr4-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1093\/acprof:oso\/9780198569695.001.0001"},{"key":"bibr5-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaging.2020.100878"},{"key":"bibr6-26323524241273489","unstructured":"Care Quality Commission. Priorities for care part of new approach to care for dying people, https:\/\/www.cqc.org.uk\/news\/stories\/priorities-care-part-new-approach-care-dying-people (2014, accessed 13 May 2024)."},{"key":"bibr7-26323524241273489","unstructured":"National Institute for Clinical Excellence. End of life care for adults: service delivery, https:\/\/www.nice.org.uk\/guidance\/ng142 (2019, accessed 10 May 2024)"},{"key":"bibr8-26323524241273489","unstructured":"Addams E. Why I don\u2019t use the word \u2018Doula\u2019, https:\/\/eskeaddams.medium.com\/why-I-dont-use-the-word-doula-9d42d9e4a241 (2023, accessed 30 October 2023)"},{"key":"bibr9-26323524241273489","volume":"27","author":"Rawlings D","year":"2018","journal-title":"Health Soc Care Community"},{"key":"bibr10-26323524241273489","volume-title":"The Birth Partner; A complete guide to childbirth for dads, partners, doulas and other labour companions","author":"Simkin R","year":"2018","edition":"5"},{"key":"bibr11-26323524241273489","unstructured":"End of Life Doula UK. Working in our communities to support each person to experience end of life and death that they choose, https:\/\/eol-doula.uk (2022, accessed 13 May 2024)."},{"key":"bibr12-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1177\/2632352420973226"},{"key":"bibr13-26323524241273489","first-page":"612","volume":"23","author":"Kukuzawa RK","year":"2017","journal-title":"Int J Palliat Care"},{"key":"bibr14-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1177\/00302228221133436"},{"key":"bibr15-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1111\/hsc.12833"},{"key":"bibr16-26323524241273489","doi-asserted-by":"publisher","DOI":"10.12968\/bjcn.2021.26.7.334"},{"key":"bibr17-26323524241273489","first-page":"318","volume":"4","author":"Corporon K","year":"2011","journal-title":"Proc (Bayl Univ Med Cent)"},{"key":"bibr18-26323524241273489","volume-title":"Finding peace at the end of life: a death doula\u2019s guide for families and caregivers","author":"Fersko-Weiss H","year":"2020"},{"key":"bibr19-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1177\/00302228231160900"},{"key":"bibr20-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1177\/14777509211057250"},{"key":"bibr21-26323524241273489","doi-asserted-by":"publisher","DOI":"10.36399\/gla.pubs.281490"},{"key":"bibr22-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1177\/02692163221080659"},{"key":"bibr23-26323524241273489","unstructured":"Health and Care Act 2022, c. 31, https:\/\/www.legislation.gov.uk\/ukpga\/2022\/31\/contents\/enacted (2022, accessed 28 April 2022)."},{"key":"bibr24-26323524241273489","volume-title":"Essentials of nursing research","author":"Polit D","year":"2021","edition":"10"},{"key":"bibr25-26323524241273489","volume-title":"Research methods for nurses and midwives theory and practice","author":"Harvey M","year":"2022","edition":"2"},{"key":"bibr26-26323524241273489","doi-asserted-by":"publisher","DOI":"10.1503\/cmaj.080372"},{"key":"bibr27-26323524241273489","unstructured":"Kasunic M. 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