{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T18:13:28Z","timestamp":1777918408792,"version":"3.51.4"},"reference-count":45,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2026,2,25]],"date-time":"2026-02-25T00:00:00Z","timestamp":1771977600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,2,25]],"date-time":"2026-02-25T00:00:00Z","timestamp":1771977600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100009128","name":"Research for Patient Benefit Programme","doi-asserted-by":"publisher","award":["NIHR204041"],"award-info":[{"award-number":["NIHR204041"]}],"id":[{"id":"10.13039\/501100009128","id-type":"DOI","asserted-by":"publisher"}]},{"name":"NIHR Patient Safety Research Collaboration"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"published-print":{"date-parts":[[2026,4]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>The disease trajectory for people with incurable head and neck cancer is unpredictable. This group also has high healthcare utilisation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim:<\/jats:title>\n                    <jats:p>To explore multi-perspectives views about incurable head and neck cancer healthcare experiences over time and how best to improve care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A prospective, longitudinal qualitative study was conducted involving three head and neck cancer networks in Northern England. Maximum variation sampling of incurable head and neck cancer adult patients (\u2a7e 18\u2009years) was conducted. Patients were invited to participate in up to three serial interviews (conducted every 4\u2009months); caregivers could support interviews and were \u2018proxies\u2019 if the patient became too unwell or died. Online focus groups were conducted with healthcare professionals. Picker\u2019s \u2018Principles of Patient-Centred Care\u2019 informed topic guides and framework analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Forty-nine participants (18 patients, eight caregivers and 23 healthcare professionals) were involved in 44 interviews and 4 focus groups. Participants\u2019 accounts revealed systemic variability in experiences of healthcare delivery especially in terms of medication access, caregiver preparedness and information needs. Navigating a \u2018fragmented\u2019 healthcare system was a key challenge, within both non-emergency and emergency situations and especially if living alone. Suggestions to improve healthcare experiences included improving clarity about key healthcare professional contacts and communication around prescribing, and diversifying means of healthcare team working.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Issues relating to variability in experiences and challenges in healthcare system navigation, including access to symptom-relieving medication, impact on patient-centred care. Consideration to accessible means of seeking advice and support as well as improving caregivers\u2019 preparedness are key priorities.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/02692163261416267","type":"journal-article","created":{"date-parts":[[2026,2,26]],"date-time":"2026-02-26T05:55:38Z","timestamp":1772085338000},"page":"524-534","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Multi-perspective views about healthcare experiences for those with incurable head and neck cancer: A prospective, longitudinal, qualitative study"],"prefix":"10.1177","volume":"40","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1440-9953","authenticated-orcid":false,"given":"Catriona R.","family":"Mayland","sequence":"first","affiliation":[{"name":"University of Sheffield, UK"},{"name":"Sheffield Teaching Hospitals NHS Foundation Trust, UK"},{"name":"Palliative Care Unit, University of Liverpool, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ada","family":"Achinanya","sequence":"additional","affiliation":[{"name":"University of Sheffield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9874-921X","authenticated-orcid":false,"given":"Madeleine","family":"Harrison","sequence":"additional","affiliation":[{"name":"University of Sheffield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Val","family":"Bryant","sequence":"additional","affiliation":[{"name":"CHANGE PPI Group, Sunderland, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6982-9181","authenticated-orcid":false,"given":"Sheila","family":"Payne","sequence":"additional","affiliation":[{"name":"Lancaster University, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Linda","family":"Sharp","sequence":"additional","affiliation":[{"name":"Newcastle University, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Hamilton","sequence":"additional","affiliation":[{"name":"Newcastle Hospitals NHS Foundation Trust, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4990-302X","authenticated-orcid":false,"given":"Joanne M.","family":"Patterson","sequence":"additional","affiliation":[{"name":"University of Liverpool, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2026,2,25]]},"reference":[{"key":"e_1_3_2_2_2","doi-asserted-by":"publisher","DOI":"10.3322\/caac.21660"},{"key":"e_1_3_2_3_2","doi-asserted-by":"publisher","DOI":"10.1093\/annonc\/mdx486"},{"key":"e_1_3_2_4_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216320963892"},{"key":"e_1_3_2_5_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216318775264"},{"key":"e_1_3_2_6_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216320904313"},{"key":"e_1_3_2_7_2","article-title":"Determinants for aggressive end-of-life care for oral cancer patients: a population-based study in an Asian country","volume":"94","author":"Chang TS","year":"2015","unstructured":"Chang TS, Su YC, Lee CC. 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