众声喧哗:通过病人、护理人员和医生的叙述探讨临终关怀。

IF 1.2 3区 社会学 0 HUMANITIES, MULTIDISCIPLINARY
Tracy Moniz, Carolyn Melro, Chris Watling
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引用次数: 0

摘要

随着人们对临终关怀的关注不断加强,我们也需要更好地了解病人、护理人员和医生的经历。提供感同身受的护理需要对疾病及其意义和影响有共同的理解。患者、护理人员和医生的叙述都为临床经验提供了独特的视角,但比较研究并不常见。通过搜索加拿大的公共领域(如全国性报纸)、个人博客以及学术和文学期刊,我们建立了一个档案库,其中包含2010年1月1日至2019年12月31日期间发表的332篇关于生命末期的第一人称书面叙述(患者=65篇,护理者=156篇,医生=111篇)。我们对叙事内容(如主题)和策略(如人物描写)的模式进行了比较分析。患者还强调了应对变化和继续生活。护理人员进一步强调了对失去亲人的悲痛,而医生最常写的是对人文精神的珍视。医生最有可能将代理权赋予自己以外的人(即患者)或事(即死亡),并在故事中为自己正名。病人和医生最常把病人作为故事的主角,而护理人员则可能把故事的中心放在自己身上,而不是病人身上。医生最有可能将死亡描述为紧张的根源,而病人和护理人员在描述疾病经历时往往将其比作战斗。医生和护理人员倾向于写见证,而病人则写追求。虽然死亡是一种共同的经历,但每个群体对待死亡的方式却不尽相同。这种脱节可能会影响生命末期的体验方式--患者的价值观是否得到尊重、照护者是否得到支持以及医生是否会产生职业倦怠。我们需要促进学习体验,将这些独特的视角融入医学教育和实践中,包括为此利用研究书面叙事的优势。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
In many voices: exploring end-of-life care through patient, caregiver and physician narratives.

As the focus on end-of-life care intensifies, so too does the need to better understand the experiences of patients, caregivers and physicians. Delivering empathetic care requires a shared understanding of illness and its meaning and impact. The narratives of patients, caregivers and physicians each offer a distinct perspective on clinical experiences, yet comparative research is uncommon. This study compares written narratives about end-of-life illness and care by these groups.We created an archive of 332 first-person written narratives about end of life (patient=65, caregiver=156, physician=111) published between 1 January 2010 and 31 December 2019 through searching public domains (eg, national newspapers), personal blogs, and academic and literary journals in Canada. A comparative narrative analysis was conducted for patterns of content (eg, theme) and strategy (eg, characterisation).All three groups wrote about feeling gratitude. Patients also emphasised coping with change and carrying on. Caregivers further focused on grieving loss, and physicians most often wrote about valuing humanism. Physicians were most likely to ascribe agency to someone (ie, patients) or something (ie, death) other than themselves and to decentre themselves in the story. Patients and physicians most often made the patient the main character of their stories, while caregivers were as likely to centre the story on themselves as on the patient. Physicians were most likely to describe death as a source of tension, while patients and caregivers described the illness experience, often comparing it to battle. Physicians and caregivers tended to write testimonies, while patients wrote quests.Narrative research can illuminate unique aspects of end-of-life care. While death is a shared experience, each group approaches it differently. The disconnects have potential consequences for how end of life is experienced-whether patients' values are honoured, whether caregivers receive support, and whether physicians experience burn-out. We need to foster learning experiences that integrate these unique perspectives into medical education and practice, including leveraging the affordances of studying written narratives towards this end.

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来源期刊
Medical Humanities
Medical Humanities HUMANITIES, MULTIDISCIPLINARY-
CiteScore
2.60
自引率
8.30%
发文量
59
期刊介绍: Occupational and Environmental Medicine (OEM) is an international peer reviewed journal concerned with areas of current importance in occupational medicine and environmental health issues throughout the world. Original contributions include epidemiological, physiological and psychological studies of occupational and environmental health hazards as well as toxicological studies of materials posing human health risks. A CPD/CME series aims to help visitors in continuing their professional development. A World at Work series describes workplace hazards and protetctive measures in different workplaces worldwide. A correspondence section provides a forum for debate and notification of preliminary findings.
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