{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T16:56:39Z","timestamp":1787590599347,"version":"build-2736575974"},"reference-count":46,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T00:00:00Z","timestamp":1779235200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T00:00:00Z","timestamp":1779235200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"University of Southampton Annual Adventures in Research scheme","award":["NA"],"award-info":[{"award-number":["NA"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Palliat Care"],"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>The prevalence of children needing palliative or end-of-life care is increasing. However, no comprehensive tool exists to assess the experiences of such care. We describe the development and testing of VOICES-Children (VOICES-C): the first questionnaire to assess care experiences of palliative and end-of-life services for children aged 0 to 18 years in the last 3 months of life.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>VOICES-Children was developed in 3 phases: (1) a literature review of care quality domains, parent interviews, healthcare professional (HCP) focus-groups\/interviews, data integration, and prototype development; (2) prototype testing through HCP and parent interviews; and (3) completion of VOICES-C. In phase 1, 24 parents were interviewed, 38 HCPs (critical care nurses, physicians, palliative care staff, and specialist palliative care service staff) participated in focus groups, and 3 took part in an interview. Participants were recruited from 2 neonatal intensive care units, 2 pediatric intensive care units, 1 cardiac intensive care unit, and a children's specialist palliative care service. In phase 2, 10 HCPs and 14 parents were interviewed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Data integration identified 19 meta-themes, including the importance of space, and the timing and amount of information. Testing demonstrated that VOICES-C captured parent experiences effectively. The final questionnaire comprised 83 questions about home care, the pediatric setting, and experiences of the last 2 days of life.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>VOICES-Children uses literature, experience data, and parental insights to produce a robust questionnaire of pediatric end-of-life care experience, administered postbereavement, that can be applied across healthcare settings. By assessing quality, services can be improved and inequities in delivery reduced.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/08258597261449531","type":"journal-article","created":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T12:25:21Z","timestamp":1779279921000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["Development and Testing of VOICES-C: A Questionnaire for Assessing the Quality and Experiences of End-of-Life Care for Children and Their Families"],"prefix":"10.1177","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6173-7319","authenticated-orcid":false,"given":"Katherine","family":"Hunt","sequence":"first","affiliation":[{"name":"University of Southampton"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4857-5084","authenticated-orcid":false,"given":"David","family":"Wright","sequence":"additional","affiliation":[{"name":"University of Southampton"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1758-3156","authenticated-orcid":false,"given":"Rawnaq","family":"Almahadeen","sequence":"additional","affiliation":[{"name":"University of Southampton"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-6405-5181","authenticated-orcid":false,"given":"Jitske","family":"Dijkstra","sequence":"additional","affiliation":[{"name":"University of Southampton"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1825-7587","authenticated-orcid":false,"given":"Richard","family":"Wagland","sequence":"additional","affiliation":[{"name":"University of Southampton"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8356-7373","authenticated-orcid":false,"given":"Duncan","family":"Randall","sequence":"additional","affiliation":[{"name":"Bournemouth University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9847-8381","authenticated-orcid":false,"given":"Seilin","family":"Uhm","sequence":"additional","affiliation":[{"name":"University of Southampton"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3127-5755","authenticated-orcid":false,"given":"Alison","family":"Richardson","sequence":"additional","affiliation":[{"name":"University of Southampton"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne-Sophie","family":"Darlington","sequence":"additional","affiliation":[{"name":"University of Southampton"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,5,20]]},"reference":[{"key":"e_1_3_3_2_2","unstructured":"Eurostat. 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