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终末期患者在生命末期纪录片中代表性和声音的多样性。

Diversity in Representations and Voices of Terminally Ill People in End-of-Life Documentaries.

机构信息

Area and Cultural Studies, University of Helsinki, Helsinki, Finland.

出版信息

J Palliat Care. 2022 Apr;37(2):190-196. doi: 10.1177/08258597211013961. Epub 2021 May 3.

Abstract

The 21st century has seen a proliferation of end-of-life documentary films and television documentaries that contribute to building a public image of hospice and palliative care. The way in which terminally ill patients are represented in these documentaries creates impressions of who is welcomed to receive end-of-life care. These documentary representations have not been previously mapped. Using quantitative content analysis, I analyzed 35 contemporary Western documentaries and studied their diversity in the representations. I focused on terminally ill patients who are given time and space in the narration to voice their views about the end-of-life process. I paid attention to such elements as gender, race and ethnicity, age, class, religion and sexuality. The documentaries welcomed the representations and voices of terminally ill people. Class, religion and sexuality often had a marginal role in narration. The gender diversity of the representations was quite balanced. Regarding age, the documentaries preferred stories about working age patients for dramatic purposes, yet all age groups were represented. However, the documentaries had an identifiable racial and ethnic bias. With a few exceptions, terminally ill who had a personal voice in the narrations were white. In comparison, racial and ethnic minorities were either absent from most of the documentaries, or their role was limited to illustrations of the general story. End-of-life documentaries provide identifiable access to the patients' experiences and as such they provide emotionally and personally engaging knowledge about hospice and palliative care. While these representations are people-oriented, they include racial disparities and they focus mostly on the experiences of white terminally ill patients. This bias reinforces the misleading image of hospice and palliative care as a racialized healthcare service.

摘要

21 世纪出现了大量的临终纪录片和电视纪录片,这些作品有助于塑造临终关怀和姑息治疗的公众形象。这些纪录片中对绝症患者的呈现方式,塑造了人们对谁可以接受临终关怀的印象。这些纪录片的呈现方式以前从未被绘制过。

我使用定量内容分析方法,分析了 35 部当代西方纪录片,并研究了它们在呈现方式上的多样性。我关注的是那些在叙述中有时间和空间表达自己对临终过程看法的绝症患者。我关注的元素包括性别、种族和民族、年龄、阶级、宗教和性取向。

这些纪录片欢迎绝症患者的呈现和声音。阶级、宗教和性取向在叙述中往往处于边缘地位。呈现的性别多样性相当平衡。关于年龄,纪录片出于戏剧目的更喜欢讲述工作年龄患者的故事,但所有年龄组都有代表。然而,这些纪录片存在可识别的种族和民族偏见。除了少数例外,在叙述中有个人声音的绝症患者都是白人。相比之下,少数民族在大多数纪录片中要么缺席,要么他们的角色仅限于讲述故事的一般插图。

临终纪录片可以让人们了解患者的经历,因此提供了有关临终关怀和姑息治疗的情感和个人吸引力的知识。虽然这些呈现方式以人为导向,但它们包含种族差异,并且主要关注白人绝症患者的经历。这种偏见强化了临终关怀和姑息治疗作为一种种族化医疗服务的误导形象。

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