"There is No Communication": A Qualitative Examination of Deaf Signers' Experiences With Advance Care Planning.

IF 1.3 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES
Caroline Cerilli, Gabrielle Katz, Angelo E Volandes, Aretha Delight Davis, Michael K Paasche-Orlow, Tyler G James, Michael M McKee
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Abstract

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' 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' 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' 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' mean advance care planning knowledge was 4.6 out of 15 (SD  =  2.6). 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.

“没有沟通”:聋人手语者预先照护计划经验的质性检验。
目的:美国聋人手语(ASL)使用者由于沟通和语言障碍而受到医疗保健差异的影响。目前,关于美国手语的预先护理计划和临终关怀的资源很少。本研究探讨聋人美国手语使用者对临终照护及事前照护计划的认知与经验。方法:由双语研究者对聋哑人进行半结构化的1:1访谈,并将其翻译成英文。研究者归纳编码转录本和确定主题的障碍,促进因素,知识,以及有关临终关怀的信息来源。参与者的知识提前护理计划和完成提前护理计划文件进行了评估,使用简短的评估。结果:11名聋人美国手语使用者与2名聋人访谈者参与了本研究。参与者报告了临终关怀的障碍,包括提供者沟通不畅,无法获得资源和住宿供应不足,导致患者不信任。通过无障碍的交流形式和他们的社会网络,如家庭、朋友和聋人同伴,促进了参与者对预先护理计划的理解。参与者主要从第一手的家庭经验、同伴和媒体中获得关于临终关怀的信息。参与者的平均提前护理计划知识为4.6 / 15 (SD = 2.6)。结论:聋人美国手语使用者在临终关怀方面缺乏可获得的资源,降低了他们理解和进行预先护理计划的能力。需要在卫生保健机构中实施无障碍的美国手语预先护理计划教育工具。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Journal of Palliative Care
Journal of Palliative Care 医学-卫生保健
CiteScore
3.20
自引率
5.90%
发文量
63
审稿时长
>12 weeks
期刊介绍: The Journal of Palliative Care is a quarterly, peer-reviewed, international and interdisciplinary forum for practical, critical thought on palliative care and palliative medicine. JPC publishes high-quality original research, opinion papers/commentaries, narrative and humanities works, case reports/case series, and reports on international activities and comparative palliative care.
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