疾病的意義與建構：基於疾病敘事視角的探究

The meaning and construction of disease: an exploration from the perspective of illness narrative

劉江(Jiang Liu)

指導教授 ： 紀慧君

淡江大學/文學院/大眾傳播學系碩士班/碩士(2021年)

https://doi.org/10.6846/TKU.2021.00818

摘要

人類社會看待疾病的方式，既包含了科學理性的醫學視角，又隱藏著文化脈絡的各自詮釋。自然形成的疾病被人為地賦予了不同的意涵，反過來又形塑了人們的理解與態度。隨著「敘事轉向」的興起，學者們紛紛主張站在患者立場重拾「敘事」，也就是讓患者描述自身的經驗故事，從而了解在患病的歷程當中，疾病的意義是如何建構以及如何轉變。
敘事研究並不是只能以生命故事、自傳之類的長篇口述或文字作為研究對象，微型故事、臨床訪談或對話式的文本等非典型短篇敘事同樣可以作為材料進行分析。微博上的癌症敘事，作為疾病敘事的一種新興方式，拓寬了人文社會學科研究疾病的視野，也能夠幫助我們更全面地了解當下如何形塑疾病。
本文以疾病敘事的觀點，選取微博一名癌症病患用戶作為研究對象，結合半結構式訪談和微博文本進行敘事分析，圍繞癌症對疾病意義與建構展開討論。本研究發現：罹癌者作為病患，在肉體上和精神上都受到疾病的壓力。經由應變敘事、道德敘事和核心敘事三個層次的分析，本研究發現病患如何發展出一套新的身體管理技術來適應與癌共生，並且經由罹癌反思人生價值。而罹癌者作為常人專家，在實踐當中發展了病人知識，即是醫學知識混合了地方性知識、自我的身體經驗而形成。病患結合過去健身教練的工作經驗，在體能訓練上面成為癌症病患的示範。他以圖片或影片的方式，分享自己的鍛煉過程，為他人提供有關罹癌者鍛煉的病人知識。

關鍵字

疾病敘事 ； 病患認同 ； 常人專家 ； 病人知識

並列摘要

The ways of human understanding diseases are influenced by the scientific and rational medical perspectives, as well as their own cultural context. Natural diseases are artificially given different meanings, which in turn shapes people's understanding and attitudes. With the rise of the "narrative turn", scholars have advocated regaining the "narrative" from the patient's standpoint, which means allowing patients to describe their own experience. By this way, we can find how the meaning of the disease is constructed and changes.
Narrative research is not limited to long oral narratives or texts such as life stories and autobiography. Atypical short narratives such as micro-story, clinical interviews or dialogue texts can also be used as materials for analysis. Cancer narratives on Weibo, as an emerging way of illness narratives, broaden the research horizons of humanities and social sciences about diseases, and can also help us understand more comprehensively how diseases are constructed nowadays.
From the viewpoint of illness narrative, this paper selects a cancer patient on Weibo as the research object, combines semi-structured interviews and Weibo text to conduct narrative analysis, and discusses the significance and construction of cancer. This study found that as a patient, cancer patient is physically and mentally stressed by the disease. Through the analysis of contingent narratives, moral narratives and core narratives, this study discovered how the patient developed a new set of body management techniques to adapt to living with cancer, and reflected on the values of life. As a lay expert, the patient has developed patient’s knowledge in practice which is constituted from medical knowledge, local knowledge and self-experience. Combining the work experience of a private trainer, the patient has become a model for cancer patients in physical training. He shared his exercise process in the form of pictures and videos, and provided others with patient’s knowledge about the exercise of cancer patients.

並列關鍵字

Illness narrative ； Patients’ Identity ； Lay expert ； Patients’ knowledge

參考文獻

英文文獻

Arnould E. J. & M. Wallendorf. (1994). Market-oriented ethnography: Interpretation building and marketing strategy formulation. Journal of Marketing Research, 31, 484-504.

Attai, D. J., Cowher, M. S., Al-Hamadani, M., Schoger, J. M., Staley, A. C., & Landercasper, J. (2015). Twitter social media is an effective tool for breast cancer patient education and support: patient-reported outcomes by survey. Journal of medical Internet research, 17(7), e188.

Bamberg, M. (2004). Narrative discourse and identities. In J. C. Meister, T. Kindt, & W. Schernus (Eds.), Narratology beyond literary criticism: Mediality, disciplinarity (pp. 213-237). New York, NY: Walter de Gruyter.

Bamberg, M., & Georgakopoulou, A. (2008). Small stories as a new perspective in narrative and identity analysis. Text & Talk, 28(3), 377-396.