2019冠状病毒病大流行期间罕见癌症和对权威的数字化追求

Karine Berthelot Guiet, J. Charbonneaux
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摘要

在前所未有的大流行及其传播后果,“信息流行病”和假新闻的背景下,本文旨在调查对罕见癌症患者及其家属的在线信息搜索和支持。通过动员内容和话语分析的工具,我们在在线论坛上质疑专家父母形象的构建,重点关注一种非常特殊的癌症:胶质母细胞瘤。这是一种罕见的晚期诊断的脑癌,预后非常差,在发现疾病时存在巨大的致残性神经损伤,因此分析主要集中在患者家属的话上。自2020年以来,持续的大流行在多大程度上改变了这种诊断和获取信息的困难?在大流行时期对信息的处理产生了强调交流的效果,损害了某些疾病;就像医院危机需要对进入重症监护病房的病人进行分类一样。在大流行之前和期间对双重语料库进行比较分析,将使我们能够处理网上权威声明可能发生的变化。当一个网络病人聊天室碰巧处理胶质母细胞瘤时,讨论大多发生在近亲之间。因此,本文探讨以下问题:这些话语是如何表现父母建立权威的?在多大程度上,他们对权威的在线追求也是一种尝试,通过要求一种“从未说过”,将自己从医学“已经说过”中解放出来?通过对网络论坛特定语料库的半通信分析,本文强调了父母如何相对于其他参与者定位自己,以及他们如何产生自己的“授权过程”。这里进行的研究旨在了解,在胶质母细胞瘤的情况下,数字书写的中介如何能够促进权威地位,并将父母视为这种罕见疾病的潜在专家。在强加“话语秩序”的限制性在线话语框架内,真正的“补偿性”信息被部署,以填补人们感到的空白,特别是在大流行期间。这些信息是家庭在特定于论坛的数字对话形式的话语间为家庭拼凑的结构,这是一种双重逃避,强调了合法话语的不足,并从根本上质疑权威问题,而权威本身似乎缺乏知识。
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Rare cancers and digital quest for authority during Covid 19 Pandemic
In the unprecedented context of the pandemic and its communicational corollaries, the "infodemic" and fake news, This paper aims to investigate the search for online information and support for rare cancer patients and their families.By mobilizing the tools of content and discourse analysis, we question the construction of the expert parent figure, in online forums, focusing on a very specific type of cancer: glioblastoma. It is a rare brain cancer more than often diagnosed at a late stage, with a very poor prognosis and huge and disabling neurological impairments at the time of identification of the disease therefore the analysis conducted focuses on the words of the patients' families. To what extent has this diagnosis and the difficulties in accessing information been modified by the ongoing pandemic since 2020? The treatment of information in times of pandemic produces communicative emphasis to the detriment of certain pathologies; in the same way that the hospital crisis required the sorting of patients accessing the intensive care units. The comparative analysis of a double corpus, before and during the pandemic, will allow us to address the possible transformations of the enunciations of authority online.When a web patient chat room happens to deal with glioblastoma, the discussion happens most of the time between close relatives. Therefore, this paper deals with the following questions: how do these discourses show the parents’ building of authority? To what extent is their on-line quest for authority also a try to free themselves from the medical « already-said », by requesting a kind of « never-said »? Through the semio-communicational analysis of a specific corpus of web forums, the paper underlines how parents position themselves relative to other actors and how they produce their own « authorization process ».The study conducted here aims to understand how, in the case of glioblastoma, the mediation of digital writing can promote the position of authority and the recognition of the parent as a potential expert in this disease characterized by its rarity.It is within the restrictive online discourses frameworks that impose their "order of discourse" that truly "compensatory" information is deployed insofar as it fills what is felt to be a void, especially during the pandemic. This information is a construction cobbled together by families for families in the inter-discourse of the forms of digital dialogism specific to forums, a double escape that underlines the inadequacies of legitimate words and fundamentally questions the question of authority when authority itself seems to lack knowledge.
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