{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T17:53:04Z","timestamp":1788371584791,"version":"build-2803163510"},"reference-count":64,"publisher":"Cambridge University Press (CUP)","license":[{"start":{"date-parts":[[2026,2,13]],"date-time":"2026-02-13T00:00:00Z","timestamp":1770940800000},"content-version":"unspecified","delay-in-days":43,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Pall Supp Care"],"published-print":{"date-parts":[[2026]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec id=\"S1478951526101643_sec1a\">\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>The aim of this review was to identify, review, and synthesize primary qualitative literature to answer the question \u201cwhat are the roles and experiences of informal caregivers providing care to a person with non-malignant respiratory disease at end of life from the perspectives of the caregiver and recipient of care?\u201d<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526101643_sec2b\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This qualitative systematic review was undertaken using thematic synthesis. Electronic databases (British Nursing Database, Cumulative Index to Nursing and Allied Health Literature Plus, Medline, PsycInfo, ProQuest Sociology, Allied and Complementary Medicine Database [AMED]) covering nursing, medicine, and social sciences were systematically searched from inception to October 2024. Studies were included if they reported data on the experiences and roles of caregivers in non-malignant respiratory disease at end of life, from the perspective of the caregiver or the person with non-malignant respiratory disease. Twenty-two papers met the eligibility criteria and were included in the review. Quality assessment was undertaken using the JBI Critical Appraisal Checklist for Qualitative Research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526101643_sec3c\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Thematic synthesis of the data generated five analytical themes:\n                      <jats:italic>Caregivers experience shifting identity and new roles; Adaptation is necessary to cope with loss and change; Caregivers need more information and coordinated care services; Emotional effects of caregiving<\/jats:italic>\n                      ; and\n                      <jats:italic>Future uncertainty and facing death.<\/jats:italic>\n                      The findings illustrated the complexity of the caregiving role and highlight unmet needs during the end of life stage.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526101643_sec4d\">\n                    <jats:title>Significance of results<\/jats:title>\n                    <jats:p>This evidence synthesis highlights the significant contribution caregivers make in the lives and deaths of those with non-malignant respiratory disease. Challenges of caregiving in this context increase the stress of caregivers, including unpredictable\u00a0disease progression and difficult symptoms such as breathlessness. There are persistent inequalities between malignant and non-malignant care pathways. Caregivers would welcome more recognition and information from healthcare professionals to support their role.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1017\/s1478951526101643","type":"journal-article","created":{"date-parts":[[2026,2,13]],"date-time":"2026-02-13T11:16:31Z","timestamp":1770981391000},"update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":1,"title":["The roles and experiences of informal caregivers in non-malignant respiratory disease at the end of life: A thematic synthesis of qualitative studies"],"prefix":"10.1017","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4563-355X","authenticated-orcid":false,"given":"Kathy","family":"Rogers","sequence":"first","affiliation":[{"name":"University of the West of England"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Candy","family":"McCabe","sequence":"additional","affiliation":[{"name":"University of the West of England"},{"name":"Dorothy House Hospice Care"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Natasha","family":"Bradley","sequence":"additional","affiliation":[{"name":"Division of Psychiatry, University College London and Research, Policy & Public Affairs Directorate, Marie Curie, One Embassy Gardens"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alison","family":"Llewellyn","sequence":"additional","affiliation":[{"name":"University of the West of England"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2026,2,13]]},"reference":[{"key":"S1478951526101643_ref50","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2013.0339"},{"key":"S1478951526101643_ref33","unstructured":"JBI (2020) JBI Critical Appraisal Checklist for Qualitative Research . 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Published by Cambridge University Press.","name":"copyright","label":"Copyright","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http:\/\/creativecommons.org\/licenses\/by\/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.","name":"license","label":"License","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This content has been made available to all.","name":"free","label":"Free to read"}],"article-number":"e59"}}