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Changing symptoms and parents\u2019 distress cannot wait for \u2018opening hours\u2019. Yet in the UK, 24\/7 children\u2019s end-of-life care remains a significant postcode lottery. To inform equitable service development this study explored parents\u2019 experiences accessing 24\/7 paediatric palliative care, their expectations and needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Qualitative study using in-depth interviews, analysed using thematic analysis. Parents in one region of England, were eligible if their child had a life-limiting condition and end-of-life care was planned, or if they were bereaved parents whose child had died within the previous 3\u201336 months.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Twenty-six parents were interviewed, 13 currently caring for their child and 13 bereaved parents. Two themes were developed: \u201cScaffolded for uncertainty and crisis\u201d and \u201cFalling through the service gaps\u201d. Most parents want seamless 24\/7 end-of-life care for their child at home and to avoid hospital admissions. Despite being desperate to be home and feeling unsafe in hospital, service gaps mean, for some families, there is no option other than their child dying as an inpatient.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The study found marked inequity in parent\u2019s experiences. Parents are confident when supported by a trusted 24\/7 team with experience delivering palliative care, that provides phone support, face-to-face nursing and access to specialist advice. Hospital staff need improved training and consistent support from specialist palliative care teams. Further research with professionals is needed to understand the local and regional barriers that are preventing this support being available to all families.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s12904-025-01927-8","type":"journal-article","created":{"date-parts":[[2025,11,12]],"date-time":"2025-11-12T15:04:19Z","timestamp":1762959859000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["\u201cWe\u2019re teetering on unsteady ground\u201d parents\u2019 experiences of accessing 24\/7 paediatric end-of-life care: a qualitative study"],"prefix":"10.1186","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8721-8886","authenticated-orcid":false,"given":"Laura","family":"Barrett","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1360-4191","authenticated-orcid":false,"given":"Lorna","family":"Fraser","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9563-5014","authenticated-orcid":false,"given":"Lucy","family":"Ziegler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8447-0306","authenticated-orcid":false,"given":"Stuart","family":"Jarvis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan","family":"Picton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1720-6665","authenticated-orcid":false,"given":"Julia","family":"Hackett","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,11,12]]},"reference":[{"key":"1927_CR1","doi-asserted-by":"publisher","first-page":"1641","DOI":"10.1177\/0269216320975308","volume":"35","author":"LK Fraser","year":"2021","unstructured":"Fraser LK, Gibson-Smith D, Jarvis S, et al. 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