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Post-bereavement outcomes are largely unknown.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim:<\/jats:title>\n                    <jats:p>To better understand long-term outcomes of a brain tumour diagnosis on families, we aimed to describe caregiver experiences during the end-of-life phase and beyond.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>In this sequential mixed-methods study designed together with bereaved caregivers, we used an online survey. This comprised end-of-life experiences, and post-bereavement outcomes (family functioning: Family APGAR; resilience: CD-RISC-10; mood: HADS; prolonged grief: PG-13-R; post-traumatic stress: TSQ).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting\/Participants:<\/jats:title>\n                    <jats:p>Caregivers of patients with brain tumours who were bereaved \u2a7e6\u2009months ago were invited through social media and charities.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>105 bereaved neuro-oncology caregivers participated. The end-of-life phase was marked by high symptom burden and disruption to family life, compounded by often unsatisfactory information provision and support. Forty-three percent did not describe the patient\u2019s death as dignified. Most caregivers were not well-supported post-bereavement, and current functioning was impacted by notable rates of prolonged grief disorder (64%), post-traumatic stress disorder (42%), depression (35%), anxiety (61%), disruption to family life (53%) and low levels of resilience. Multivariable regressions found better resilience and family functioning to be protective factors for both post-traumatic stress disorder and prolonged grief disorder symptoms, with a dignified death additionally linked to caregivers\u2019 prolonged grief scores, explaining 23.8% and 51.0% of variance, respectively.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Bereaved neuro-oncology caregivers have high rates of adverse mental health outcomes, highlighting a pressing need for improvements in palliative, end-of-life and post-bereavement services.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/02692163251344164","type":"journal-article","created":{"date-parts":[[2025,6,14]],"date-time":"2025-06-14T05:22:43Z","timestamp":1749878563000},"page":"814-826","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":12,"title":["End-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers: A cross-sectional survey"],"prefix":"10.1177","volume":"39","author":[{"given":"Shaista","family":"Meer","sequence":"first","affiliation":[{"name":"Leeds Institute of Medical Research at St James\u2019s, St James\u2019s University Hospital, University of Leeds, Leeds, UK"},{"name":"Leeds Institute of Health Sciences, Faculty of Medicine and Health, University of Leeds, Leeds, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter","family":"Buckle","sequence":"additional","affiliation":[{"name":"Glioblastoma widower and patient research advocate"}],"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"},{"name":"Oncology &amp; Haematology, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louise","family":"Murray","sequence":"additional","affiliation":[{"name":"Leeds Institute of Medical Research at St James\u2019s, St James\u2019s University Hospital, University of Leeds, Leeds, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9563-5014","authenticated-orcid":false,"given":"Lucy","family":"Ziegler","sequence":"additional","affiliation":[{"name":"Leeds Institute of Health Sciences, Faculty of Medicine and Health, University of Leeds, Leeds, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7972-4674","authenticated-orcid":false,"given":"Karin","family":"Piil","sequence":"additional","affiliation":[{"name":"Department of Oncology, Centre for Cancer and Organ Diseases, Copenhagen University Hospital, Denmark"},{"name":"Rigshospitalet, Copenhagen \u00d8 and Dept. of People and Technology, Roskilde University, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0409-7949","authenticated-orcid":false,"given":"Florien","family":"Boele","sequence":"additional","affiliation":[{"name":"Leeds Institute of Medical Research at St James\u2019s, St James\u2019s University Hospital, University of Leeds, Leeds, UK"},{"name":"Leeds Institute of Health Sciences, Faculty of Medicine and Health, University of Leeds, Leeds, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,6,14]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1093\/neuonc\/noab200"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11060-020-03650-1"},{"key":"e_1_3_3_4_2","article-title":"Long-term health-related quality of life in meningioma survivors: a mixed-methods systematic review","volume":"6","author":"Frances SM","year":"2024","unstructured":"Frances SM, Murray L, Nicklin E, et al. 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