{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T08:43:53Z","timestamp":1782981833119,"version":"3.54.5"},"reference-count":46,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T00:00:00Z","timestamp":1780272000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T00:00:00Z","timestamp":1780272000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100000777","name":"University of Leeds","doi-asserted-by":"crossref","award":["Academic Development Grant"],"award-info":[{"award-number":["Academic Development Grant"]}],"id":[{"id":"10.13039\/501100000777","id-type":"DOI","asserted-by":"crossref"}]},{"name":"Yorkshire Cancer Research","award":["L389FB"],"award-info":[{"award-number":["L389FB"]}]},{"name":"Yorkshire Cancer Research","award":["L389LM"],"award-info":[{"award-number":["L389LM"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat&amp;#65533;Care"],"published-print":{"date-parts":[[2026,6]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>The disease burden of malignant brain tumours poses significant challenges to both patients and their family caregivers. Even years post-bereavement, neuro-oncology caregivers can suffer serious and long-lasting adverse outcomes. A previous quantitative survey (reported separately) highlighted significant challenges experienced by bereaved neuro-oncology caregivers. This current work explored these issues further through focus groups.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To identify opportunities to enhance support, we investigated caregiver experiences during the patient\u2019s end-of-life phase, the dying process, and post-bereavement outcomes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Focus groups as a component of a sequential mixed-methods study designed together with bereaved caregivers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We performed online focus groups covering the end-of-life phase, the period surrounding the patient\u2019s death, and their post-bereavement outcomes. Sampled from survey respondents, caregivers who were \u22656 months post-bereavement were invited to take part in online focus groups. Following audio transcription, data were analysed using reflexive thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>In three groups, 7 female (64%) and 4 male (36%) caregivers (55% partners of patients) of deceased patients diagnosed with glioblastoma were interviewed. Themes covered 1) care experiences in the end-of-life phase (covering communication, information, support needs, and balancing family dynamics), 2) caregiver experiences surrounding patient death, and 3) immediate and longer-term post-bereavement outcomes (covering complex and conflicting emotional responses, expectations and strategies to cope with grief, and the value of formal and informal support).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Findings highlight ongoing significant and unmet emotional support needs of bereaved neuro-oncology caregivers. Caregivers want and deserve to be proactively offered adequate and timely support which could limit the long-lasting adverse impact of providing care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/26323524261465679","type":"journal-article","created":{"date-parts":[[2026,6,29]],"date-time":"2026-06-29T10:03:41Z","timestamp":1782727421000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["\u201cIt\u2019s a club nobody wanted to join, but we\u2019re there\u201d: Focus groups on end-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers"],"prefix":"10.1177","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5628-7018","authenticated-orcid":false,"given":"Shaista","family":"Meer","sequence":"first","affiliation":[{"name":"University of Leeds"},{"name":"University of Leeds"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-2060-7545","authenticated-orcid":false,"given":"Rosanna","family":"Miller","sequence":"additional","affiliation":[{"name":"Expert by experience, Leeds, United Kingdom"},{"name":"Norfolk and Norwich University Hospitals NHS Foundation Trust"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter","family":"Buckle","sequence":"additional","affiliation":[{"name":"Expert by experience, Leeds, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louise","family":"Murray","sequence":"additional","affiliation":[{"name":"University of Leeds"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Lewis-Smith","sequence":"additional","affiliation":[{"name":"Leeds Teaching Hospitals NHS Trust, St James\u2019s University Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lucy","family":"Ziegler","sequence":"additional","affiliation":[{"name":"University of Leeds"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7972-4674","authenticated-orcid":false,"given":"Karin","family":"Piil","sequence":"additional","affiliation":[{"name":"Copenhagen University Hospital; Rigshospitalet, Copenhagen, Denmark"},{"name":"Roskilde University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0409-7949","authenticated-orcid":false,"given":"Florien","family":"Boele","sequence":"additional","affiliation":[{"name":"University of Leeds"},{"name":"University of Leeds"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,6,29]]},"reference":[{"key":"e_1_3_8_2_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-013-2088-9"},{"key":"e_1_3_8_3_2","doi-asserted-by":"publisher","DOI":"10.1093\/nop\/npae056"},{"key":"e_1_3_8_4_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2017-001386"},{"key":"e_1_3_8_5_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11060-014-1591-2"},{"key":"e_1_3_8_6_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000013057"},{"key":"e_1_3_8_7_2","doi-asserted-by":"publisher","DOI":"10.1186\/1472-684X-6-7"},{"key":"e_1_3_8_8_2","doi-asserted-by":"publisher","DOI":"10.1097\/JNN.0000000000000348"},{"key":"e_1_3_8_9_2","doi-asserted-by":"publisher","DOI":"10.1177\/02692163251344164"},{"key":"e_1_3_8_10_2","doi-asserted-by":"publisher","DOI":"10.1007\/s12028-016-0372-5"},{"key":"e_1_3_8_11_2","doi-asserted-by":"publisher","DOI":"10.1080\/15325024.2012.665304"},{"key":"e_1_3_8_12_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.comppsych.2015.12.001"},{"key":"e_1_3_8_13_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951518001013"},{"key":"e_1_3_8_14_2","doi-asserted-by":"publisher","DOI":"10.1080\/2159676X.2019.1628806"},{"key":"e_1_3_8_15_2","first-page":"19","article-title":"Doing reflexive thematic analysis","author":"Braun V","year":"2023","unstructured":"Braun V, Clarke V, Hayfield N, et al. 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