{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T16:36:04Z","timestamp":1787243764658,"version":"build-2736575974"},"reference-count":42,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2023,6,2]],"date-time":"2023-06-02T00:00:00Z","timestamp":1685664000000},"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":["J Palliat Care"],"published-print":{"date-parts":[[2023,7]]},"abstract":"<jats:p>Objective(s): Deaf American Sign Language (ASL) users are subject to health care disparities resulting from communication and language barriers. Currently, few resources on advance care planning and end-of-life care exist in ASL. This study explores Deaf ASL users\u2019 perceptions and experiences with end-of-life care and advance care planning. Methods: Semi-structured 1:1 interviews with Deaf signers were translated, and transcribed into English by a bilingual researcher. Investigators inductively coded transcripts and identified themes of barriers, facilitators, knowledge, and sources of information regarding end-of-life care. Participants\u2019 knowledge of advance care planning and completion of advance care planning documents were evaluated using a brief assessment. Results: Eleven Deaf ASL users participated in the study with two deaf interviewers. Participants reported barriers to end-of-life care including poor provider communication, inaccessible sources, and inadequate provision of accommodations, leading to patient distrust. Participants\u2019 understanding of advance care planning was facilitated by accessible forms of communication and their social networks, such as family, friends, and Deaf peers. Participants primarily gained information on end-of-life care from first-hand familial experience, peers, and media. Participants\u2019 mean advance care planning knowledge was 4.6 out of 15 (SD\u2009\u2009=\u2009\u20092.6). Conclusions: Deaf ASL users face scarce accessible resources around end-of-life care, lowering their ability to understand and proceed with advance care planning. Implementation of ASL accessible advance care planning educational tools in health care settings is needed.<\/jats:p>","DOI":"10.1177\/08258597231179763","type":"journal-article","created":{"date-parts":[[2023,6,2]],"date-time":"2023-06-02T07:50:43Z","timestamp":1685692243000},"page":"372-380","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":7,"title":["\u201cThere is No Communication\u201d: A Qualitative Examination of Deaf Signers\u2019 Experiences With Advance Care Planning"],"prefix":"10.1177","volume":"38","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0892-2515","authenticated-orcid":false,"given":"Caroline","family":"Cerilli","sequence":"first","affiliation":[{"name":"Johns Hopkins Disability Health Research Center, Johns Hopkins University, Baltimore, MD, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9233-5654","authenticated-orcid":false,"given":"Gabrielle","family":"Katz","sequence":"additional","affiliation":[{"name":"The Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University, Waltham, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angelo E.","family":"Volandes","sequence":"additional","affiliation":[{"name":"ACP Decisions Non-Profit Foundation, Waban, MA, USA"},{"name":"Section of General Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aretha Delight","family":"Davis","sequence":"additional","affiliation":[{"name":"ACP Decisions Non-Profit Foundation, Waban, MA, USA"},{"name":"Section of General Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael K.","family":"Paasche-Orlow","sequence":"additional","affiliation":[{"name":"Department of Medicine, Tufts Medical Center, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0694-4702","authenticated-orcid":false,"given":"Tyler G.","family":"James","sequence":"additional","affiliation":[{"name":"Department of Family Medicine, University of Michigan Medical School, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael M.","family":"McKee","sequence":"additional","affiliation":[{"name":"Department of Family Medicine, University of Michigan Medical School, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2023,6,2]]},"reference":[{"key":"bibr1-08258597231179763","doi-asserted-by":"publisher","DOI":"10.1177\/0269216318784474"},{"key":"bibr2-08258597231179763","unstructured":"Perumalswami C, Burke J, Singer D, et al. 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