Vivências relacionadas ao diabetes mellitus tipo 1: revisão narrativa e pesquisa em ambientes digitais

Abstract

This dissertation is composed of two studies that focus on experiences related to type 1 diabetes mellitus (DM1). The first study aimed, through a narrative review of the literature, to examine the scientific production concerning experiences related to DM1 in patients and their families. After carrying out procedures for locating and selecting, a set of references was subjected to an exhaustive reading that led to the delimitation of thematic categories. In summary, it was found that, according to the selected references, the experiences related to DM1 are complex, as they show how the control of the disease, being constant and endless, has repercussions on different dimensions of the lives of patients and family members. Such complexity points to care needs that transcend the therapeutic plan centered only on glycemic control. The experiences of the research participants reveal how the management of life as a whole is, in many moments, restricted by the specificities of DM1 and requires a series of adaptations. The second study aimed to understand the collective imagination of young people about DM1 and, by extension, their experiences concerning the disease, making use of posts in digital environments. For that, searches were carried out in three different digital environments, and the selection of the material obtained was supported by four criteria, as the posts published were included: (1) in Portuguese, more precisely in the Brazilian variant; (2) in the public domain; (3) by young Internet users and (4) that dealt with experiences associated with falling ill with DM1. The analysis strategy involved carrying out exhaustive readings in a state of fluctuating attention, circumscribing fields of meaning and establishing reflective interlocutions. The selection strategy led to obtaining 52 posts, from 20 different user profiles, which made it possible to capture three fields of meaning: “Very heavy routine”, encompassing as the main idea that DM1 represents a burden due, above all, to the daily care needs. “Diabetic face”, based on the belief that DM1 is an “invisible” disease and must be hidden to avoid stigma or made visible to obtain legitimacy. Finally, “Risk Disease”, capturing the idea that DM1 is more dangerous for economically disadvantaged patients, as its management would involve a high economic cost.