Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook

Abstract

Science advances with discoveries that allow man to extend his lifespan and, in this sense, issues of life and death are frequently under discussion, including research related to diseases, in some cases contemplating chronic diseases, which reflect a primordial human need. , an understanding of the disease and its impacts on society. Receiving a diagnosis of an Inflammatory Bowel Disease is complex. But after all, how is it possible to lead a “normal” life, exercising my old roles in society, before the diagnosis? Did this whirlwind of emotions, fears and anxieties happen to all patients? How and in which space could I be heard without prejudice and judgment about my new life? Facebook has been a platform for people residing on the network that allows for the existence of a large number of communities designed to discuss issues related to health, making it necessary to understand how they work and how the information obtained is used. Thus, the main contribution of this study was to present the basic characteristics of support groups for patients with Crohn's Disease, focusing on users and their posts. An exploratory research was carried out focused on identifying discussion groups on Facebook regarding Crohn's Disease. As they are closed communities, two groups were selected, one consisting of more than 2,700 average members by a doctor specializing in inflammatory bowel diseases and the other consisting of a high number of members, of more than 14,600, therefore, the choice was made. Based on the criteria of visibility and empirical research. Data collection corresponded to the period from December 2022 to March 2023. Discourse analysis of posts and comments from the two secret groups was used as a data collection instrument. This research includes several themes related to patients' use of Facebook that can support self-management of the disease. In both groups, the most discussed topics in the posts were medications, symptoms and exams. However, the most relevant posts and comments in the groups differ significantly, demonstrating the presence and relevance of emotional work and the “rules of feelings”.