{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T14:36:40Z","timestamp":1787841400618,"version":"build-2784847793"},"reference-count":36,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2026,3,16]],"date-time":"2026-03-16T00:00:00Z","timestamp":1773619200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Huntington's Disease"],"published-print":{"date-parts":[[2026,8]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>People with Huntington's disease (HD) are encouraged to consider end-of-life planning early on to mitigate future challenges. Initial evidence shows that undertaking planning discussions around this subject presents various barriers; however, a comprehensive evidence synthesis has not been completed to date. Accordingly, we here synthesise evidence regarding experiences of end-of-life planning discussions (EOLPD) among people with HD, their families and familial caregivers, and healthcare professionals supporting them.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Five databases were systematically searched for peer-reviewed articles addressing the research question. After screening, eight articles meeting the inclusion criteria were identified, and a narrative synthesis undertaken to develop key themes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Four themes were developed. \u201cThe value of EOLPD\u201d details the perceived effectiveness of such discussions. \u201cTo talk or not to talk\u201d reflect motivations to seek out or avoid EOLPD. \u201cA clear vision of the future\u201d encapsulates how EOLPD may provide comfort for some but fear and anxiety for others. The final theme highlights the importance of those engaging in EOLPD accessing \u201cThe right people at the right time\u201d.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>End-of-life planning in HD remains inconsistently implemented and often process-focused, with a need for more holistic and patient-centred discussions. Further research is necessary to explore needs, expectations and experiences among HD families, and to support healthcare professionals to successfully lead on introducing these discussions. Additionally, much of the literature addressed euthanasia rather than natural death, highlighting a need for more research in the context of natural death.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/18796397261428341","type":"journal-article","created":{"date-parts":[[2026,3,16]],"date-time":"2026-03-16T08:56:36Z","timestamp":1773651396000},"page":"317-331","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Experiences and perceptions of affected individuals, families, caregivers and healthcare professionals regarding end-of-life planning in Huntington's disease: A narrative synthesis"],"prefix":"10.1177","volume":"15","author":[{"given":"Catherine","family":"Lyon","sequence":"first","affiliation":[{"name":"School of Psychology and Vision Sciences, University of Leicester, Leicester, UK"},{"name":"Leicester Medical School, University of Leicester, Leicester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6036-5157","authenticated-orcid":false,"given":"Chris","family":"Williams","sequence":"additional","affiliation":[{"name":"Huntington's Disease Association, Huntington, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-6520-8793","authenticated-orcid":false,"given":"Suzanne","family":"Buswell","sequence":"additional","affiliation":[{"name":"School of Psychology and Vision Sciences, University of Leicester, Leicester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1090-1529","authenticated-orcid":false,"given":"Selina","family":"Lock","sequence":"additional","affiliation":[{"name":"Library and Learning Services, University of Leicester, Leicester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8492-060X","authenticated-orcid":false,"given":"Sarah","family":"Gunn","sequence":"additional","affiliation":[{"name":"School of Psychology and Vision Sciences, University of Leicester, Leicester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,3,16]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.29228"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp-2012-304636"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1111\/ene.13413"},{"key":"e_1_3_3_5_2","first-page":"1","volume-title":"The palgrave encyclopedia of disability","author":"Buswell S","year":"2024","unstructured":"Buswell S, Lindo P, Gunn S. 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