Experiências comunicacionais em efeito borboleta: elaborações da doença e de si na ambiência da midiatização

Abstract

This thesis investigates the communication experiences of patients with Turner Syndrome (TS) and their relatives on digital platforms in the context of mediatization. TS is a rare chromosomal disorder that just affects women, and which, due its low frequency, undergoes a media and medical invisibility. In view of the above, an uneasiness arose about which media spaces the women with the disease and their families occupy and how they interact, thereby the research problem of this theses is configured in this way: How the interactional process of meaning production and self-elaboration develops and is modified through the communication experiences about TS on digital platforms in the context of mediatization? Therefore, through the tracks left in circulation, this study aims to comprehend the self-elaboration and the elaboration of the illness that emerge from this communication experiences and what operations are within them. So, from the evidentiary paradigm, a methodological arrangement was built with a course that involves an ethnographic inspiration and the discursive circulation analysis. In this way, posts and comments from the Turner Syndrome Global Alliance Facebook page, from a YouTube channel called Brooke TV/ Butterfly TV and from the Turner & Eu Instagram profile were analyzed, besides, interviews with the responsible for producing content on these digital platforms were conducted. The analysis was divided in two moments: the first was focused on the specific production and recognition grammars of each set of observables, the second was intended for the operations that emerged both from these grammars and from the communicational and social actions of these girls and women with the syndrome and their families. Thus, articulating the analysis with the theoretical discussions regarding mediatization, circulation, meaning production, as well as the communication and health interface, it was possible to comprehend the actions of the patients on digital platforms, such as extimacy, testimony, and self-narration. From that, it was learned that the elaborations of the disease and of the self – that emerged from the communication experiences – are responsible for a reorganization, a reframing, a self-understanding and an empowerment of the patients. Through the process of exacerbated circulation, both TS and the individuality of what it is to learn with the illness gain new outlines, because the syndrome starts to be elaborated collectively, becoming sociable.