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就好像我是一艘返回地球大气层的宇宙飞船。通过唤起式自传体民族志,深入了解疾病叙事和儿童癌症。

As if I was a spacecraft returning to Earth's atmosphere. Expanding insights into illness narratives and childhood cancer through evocative autoethnography.

机构信息

University of Oslo, Norway.

出版信息

Health (London). 2024 Nov;28(6):797-811. doi: 10.1177/13634593231200123. Epub 2023 Sep 20.

DOI:10.1177/13634593231200123
PMID:37727064
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11520256/
Abstract

Today, a majority of children diagnosed with cancer are expected to grow up and live-hopefully until old age. Still, knowledge of the lived experience of childhood cancer survivors is sparse. In pursuit of knowledge expansion, by combining my intersecting roles as an academic, educational counselor, and childhood cancer survivor, I approach my personal illness narrative. By means of evocative autoethnography, I write intentionally vulnerably about my experiences and make them available for consideration. I explore my narrative through archives, artifacts, memories of the past, and conversations evoked in the present. I re-visit the cultural landscape of a southern Norwegian girl growing up in the 00s with cancer. Through this, my illness narrative presents as positioned, tangled, and interwoven with a developmental trajectory. Specific educational experiences seem to linger, and many are related to being absent from or re-entering school after the onset of illness. To grasp the intersecting and conflicting experiences of being very ill while also young, I suggest Erik Erikson's moratorium as a key concept. To complement Arthur Frank's illness narratives of restitution, chaos, and quest, I establish the moratorium narrative. As a fresh resource, the moratorium narrative underlines the need to make sensitive our academic community's gaze on illness trajectories unfolding in formative phases and illness narratives defined by growing up. By providing a point of recognition that prompts elaboration, this could also provide the young and very ill with a much-needed narrative space of opportunity, of which more narratives are invited and insisted upon.

摘要

如今,大多数被诊断出患有癌症的儿童都有望长大并健康地生活,直至老年。尽管如此,儿童癌症幸存者的生活经历仍然知之甚少。为了寻求知识的拓展,我结合了自己作为学者、教育顾问和儿童癌症幸存者的角色,来探讨我个人的癌症经历。通过运用情感自传的方法,我有意以脆弱的方式来描述自己的经历,并将其呈现出来供人思考。我通过档案、文物、对过去的记忆以及现在引发的对话来探索我的叙述。我重新审视了一位在 21 世纪 00 年代患有癌症的挪威南方女孩的文化背景。通过这种方式,我的疾病叙述呈现出一种定位、纠结和交织的轨迹。特定的教育经历似乎挥之不去,其中许多与疾病发作后缺课或重返学校有关。为了理解在年幼时同时身患重病的复杂和矛盾的经历,我建议将埃里克·埃里克森的暂停期作为一个关键概念。为了补充亚瑟·弗兰克关于康复、混乱和探索的疾病叙述,我确立了暂停期叙述。作为一种新的资源,暂停期叙述强调了我们的学术界需要敏锐地关注在形成阶段展开的疾病轨迹和成长定义的疾病叙述。通过提供一个引发阐述的认知点,这也可以为年轻和重病患者提供一个急需的机会叙事空间,邀请并坚持更多的叙事。

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本文引用的文献

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Growing up after childhood cancer: maturity and life satisfaction in young adulthood.儿童癌症后成长:青年期的成熟和生活满意度。
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