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《体验癌症:疾病的民族志研究》

Experiencing Cancer. An Ethnographic Study on Illness and Disease.

机构信息

Medical School Brandenburg Theodor Fontane, Institute of Social Medicine and Epidemiology, Hochstrasse 15, 14770, Brandenburg/Havel, Germany.

出版信息

Recent Results Cancer Res. 2021;218:245-257. doi: 10.1007/978-3-030-63749-1_16.

Abstract

Cancer is seen as a 'dread disease' with a long and powerful history that remains resistant to defeat. It is a byword for suffering, pain and death. An unprecedented level of research spending and biomedical engagement offering new treatment options and hopes for a cure goes hand in hand with patient-led movements disseminating widespread public narratives of hope and survivorship. A key paradigm in these public narratives of hope and cure has been early detection of disease, with breast cancer, as the most frequent cancer among women, at the forefront of early detection campaigns. This chapter investigates the experiences behind the public face of breast cancer. It interrogates what it means to have breast cancer in the light of heroic stories of survivorship and fight using the theoretical concepts of illness-the subjective experience of feeling unwell-and disease-bodily pathologies that are identified through biomedical diagnostic technologies. With early detection becoming the primary mode of practice in breast cancer, illness has  to be re-conceptualized. If a woman is to undergo treatment after a diagnosis of asymptomatic disease-without symptoms being present in her lifeworld-she has to cognitively understand the severity of the disease, and assume that she would die without treatment. The absence of bodily experiences of symptoms is irrelevant: it is the provision of information through which illness can manifest. The shock of diagnosis, as so often illustrated in cancer narratives, is therefore necessary in order to transform disease into an illness trajectory associated with biomedical treatment. The particular illness experiencehas profound and long-lasting consequences for a woman's life. Understanding the suffering associated with such disease conceptions as a necessary part of the illness experience could help us to improve health care services for those afflicted.

摘要

癌症被视为一种“可怕的疾病”,它有着悠久而强大的历史,至今仍难以攻克。它是痛苦、疼痛和死亡的代名词。前所未有的研究投入和生物医学参与,为治疗提供了新的选择,并为治愈带来了希望,与此同时,患者主导的运动也在传播着广泛的希望和生存的公众叙事。这些希望和治愈的公众叙事中的一个关键范式是疾病的早期检测,乳腺癌作为女性最常见的癌症,处于早期检测运动的前沿。本章探讨了乳腺癌公众形象背后的经历。它探讨了在生存和抗争的英勇故事的背景下,患有乳腺癌意味着什么,使用疾病的理论概念——身体病理,即通过生物医学诊断技术识别的身体病理学,来检验这一概念。由于早期检测成为乳腺癌的主要治疗模式,疾病必须重新概念化。如果一个女性在无症状疾病(生命世界中没有症状)被诊断后要接受治疗,她必须从认知上理解疾病的严重性,并假设如果不治疗,她会死亡。没有身体症状的体验是无关紧要的:正是通过提供信息,疾病才能显现出来。因此,诊断的冲击,正如癌症叙事中经常描绘的那样,对于将疾病转化为与生物医学治疗相关的疾病轨迹是必要的。这种特殊的疾病经历对女性的生活有着深远而持久的影响。理解与这种疾病概念相关的痛苦是疾病体验的必要组成部分,这可能有助于我们改善受疾病影响的人的医疗服务。

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