Rare cancers and digital quest for authority during Covid 19 Pandemic

Abstract

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.

Keywords: patient expertise, social media, authority, pandemic

DOI: 10.54941/ahfe1001354