作为“中间地带”的社交媒介:罕见病患者在网络空间的体验与连接

蒋锐 王佳丽

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国际新闻界 ›› 2023, Vol. 45 ›› Issue (2) : 107-126.
研究论文

作为“中间地带”的社交媒介:罕见病患者在网络空间的体验与连接

  • 蒋锐 王佳丽
作者信息 +

Social media as the “Intermediate Area”: An investigation on the Internet experience of rare disease patients

  • JIANG Rui WANG Jiali
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摘要

本文采用深度访谈与非参与式观察的研究方法,以精神分析理论的“中间地带”为 抓手,经由罕见病患者群体来讨论社交媒介在生命体验中的意义表现与内在逻辑。研究发现,社交媒介是一个在内在感受与外在现实之间缓冲与包容的“中间地带”,它在一定程度上鼓励着罕见病患者全面接纳自身经验,以完成自我的确定与发展。此外,“中 间地带”的体验通过个体程度不同的“自愿性分离”“内外部协商”等来实现,并伴随着象征性的文化生活与幻想对个体经验的拓展,映射并维系着患者的个人价值与尊严。

Abstract

From the perspective of “Intermediate Area” of psychoanalytic theory, this paper adopted the in-depth interview method and non-participatory observation, and discussed the significance and internal logic of social media in life experience through rare disease patients. The study found that social media is an “Intermediate Area” between internal feelings and external reality, which encourages patients to fully accept their own experience in order to complete self-determination and development. In addition, the experience of “Intermediate Area” is realized through “voluntary separation” and “internal and external negotiation” at different levels of individuals, and accompanied by symbolic cultural life and the expansion of individual experience by illusion, it reflects and maintains the personal value and dignity of patients.

关键词

罕见病患者 / 社交媒介 / 精神分析理论 / “中间地带”

Key words

Rare disease patients / social media / psychoanalytic theory / “Intermediate Area”

引用本文

导出引用
蒋锐 王佳丽. 作为“中间地带”的社交媒介:罕见病患者在网络空间的体验与连接. 国际新闻界. 2023, 45(2): 107-126
JIANG Rui WANG Jiali. Social media as the “Intermediate Area”: An investigation on the Internet experience of rare disease patients. Chinese Journal of Journalism & Communication. 2023, 45(2): 107-126

参考文献

基金

本文为2021年度海南大学人文社会科学青年学者扶持项目“罕见病患者群体社交网络支持研究”(项目编号:21QNXZ5)成果。
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