{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T08:09:49Z","timestamp":1777882189766,"version":"3.51.4"},"reference-count":33,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T00:00:00Z","timestamp":1775001600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T00:00:00Z","timestamp":1775001600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100003509","name":"\u00d6rebro Universitet","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100003509","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat\ufffdCare"],"published-print":{"date-parts":[[2026,4]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Cancer and circulatory diseases are overrepresented among the annual deaths in Sweden. Specialized palliative care (SPC) is considered complex, especially by cancer patients who have undergone long-term treatment. Relatives caring for a person with cancer within the home are faced with many demanding tasks.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Purpose:<\/jats:title>\n                    <jats:p>To describe and map relatives\u2019 experiences of the end-of-life care given in specialized palliative home care from a Swedish national perspective.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>\n                      A register study was conducted with a mixed-method design using qualitative and quantitative descriptive data from relatives (\n                      <jats:italic toggle=\"yes\">n<\/jats:italic>\n                      \u2009=\u2009563). Reflexive thematic analysis was used for the qualitative data, followed by a quantifying process inspired by Sandelowski.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Findings:<\/jats:title>\n                    <jats:p>Two main themes were identified, with related themes and subthemes: \u201cHome\u2014a safe, dignified, and good place for dying\u201d and \u201cHome\u2014a challenging, lonely, and unworthy place for dying.\u201d As a place of dying during SPC, home provided both security and challenging events. It offered security for the family and upheld their dignity with the presence and support of competent healthcare professionals (HCPs). Conversely, challenging events emphasized how the relatives were unprepared for their loved one\u2019s death and struggled to cope with the end-of-life situation. Some relatives felt that too much of the responsibility was left to them. However, the quantitative data showed that 99.1% of the relatives knew where to find urgent help during the last week of life, and the quantified qualitative data showed that HCPs were often available and supportive.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Specialized palliative home care must strive to minimize challenging events that relatives experience during their loved one\u2019s end of life and reinforce protective factors such as the presence of HCPs. As the end-of-life period is challenging for families, adequate support and competencies must be secured. Otherwise, there is a risk of increased family suffering and relatives having difficulties with grief after the death.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/26323524261434624","type":"journal-article","created":{"date-parts":[[2026,4,4]],"date-time":"2026-04-04T06:28:35Z","timestamp":1775284115000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["A caring safety net or a broken shelter\u2014Relatives\u2019 experiences of specialized palliative home care: A national registry study"],"prefix":"10.1177","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8661-004X","authenticated-orcid":false,"given":"Annika","family":"S\u00f6derman","sequence":"first","affiliation":[{"name":"School of Health Sciences, Faculty of Medicine and Health, \u00d6rebro University, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fredrik","family":"Alm","sequence":"additional","affiliation":[{"name":"School of Health Sciences, Faculty of Medicine and Health, \u00d6rebro University, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karin","family":"Blomberg","sequence":"additional","affiliation":[{"name":"School of Health Sciences, Faculty of Medicine and Health, \u00d6rebro University, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Helena","family":"Sj\u00f6lin","sequence":"additional","affiliation":[{"name":"School of Health Sciences, Faculty of Medicine and Health, \u00d6rebro University, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Camilla","family":"Wall","sequence":"additional","affiliation":[{"name":"School of Health Sciences, Faculty of Medicine and Health, \u00d6rebro University, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elisabeth","family":"Bergdahl","sequence":"additional","affiliation":[{"name":"School of Health Sciences, Faculty of Medicine and Health, \u00d6rebro University, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2026,4,3]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2020.04.027"},{"key":"e_1_3_3_3_2","unstructured":"National Board of Health and Welfare. Cause of death registry https:\/\/www.socialstyrelsen.se\/statistik-och-data\/register\/alla-register\/dodsorsaksregistret\/ (2025 accessed 18 June 2025)."},{"key":"e_1_3_3_4_2","unstructured":"Regional Cancer Centres in Collaboration. National care program for palliative care https:\/\/cancercentrum.se\/samverkan\/ (2023 accessed 15 August 2025)."},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2024.11.013"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-021-06655-2"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-024-01350-5"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951523001013"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-025-01664-y"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-024-01614-0"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-024-01549-6"},{"key":"e_1_3_3_12_2","doi-asserted-by":"publisher","DOI":"10.1002\/1098-240X(200006)23:3<246::AID-NUR9>3.0.CO;2-H"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1002\/nur.20176"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.1177\/02692163241234800"},{"key":"e_1_3_3_15_2","unstructured":"Swedish Palliative Registry. A quality register for end-of-life care [Internet]. Kalmar: Swedish Palliative Registry http:\/\/www.palliativregistret.se\/ (2021 accessed 16 January 2026) [Swedish]."},{"key":"e_1_3_3_16_2","doi-asserted-by":"publisher","DOI":"10.1177\/1558689811427913"},{"key":"e_1_3_3_17_2","unstructured":"World Medical Association (WMA). WMA Declaration of Helsinki\u2014Ethical principles for medical research involving human participants https:\/\/www.wma.net\/what-we-do\/medical-ethics\/declaration-of-helsinki\/ (2024 accessed 10 July 2025)."},{"key":"e_1_3_3_18_2","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph19074229"},{"key":"e_1_3_3_19_2","doi-asserted-by":"publisher","DOI":"10.1177\/02692163211019881"},{"key":"e_1_3_3_20_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2021.113974"},{"issue":"3","key":"e_1_3_3_21_2","first-page":"43","article-title":"Current advances in palliative & hospice care: problems and needs of relatives and family caregivers during palliative and hospice care\u2014an overview of current literature","volume":"7","author":"Oechsle K.","year":"2019","unstructured":"Oechsle K. Current advances in palliative & hospice care: problems and needs of relatives and family caregivers during palliative and hospice care\u2014an overview of current literature. 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