Itinerário terapêutico e a experiência do adoecimento de pessoas acometidas por doença de Chagas na rede de atenção do SUS em município do sudoeste da Bahia

Abstract

Introduction: The 115-year history of Chagas disease (CD) in Brazil has not been enough to overcome illness and death, which remain critical challenges for millions of people. The persistence of endemicity reflects contexts of social inequality and neglect, including operational weaknesses in health services. Limited access to diagnosis and treatment remains critical barriers that contribute to maintaining the high morbidity and mortality burden of the disease. Objective: This study aims to analyse the therapeutic pathway and disease experience of people with CD in the care network of the Unified Health System (SUS) in a municipality in south-western Bahia. Methods: This is a cross-sectional, qualitative-quantitative study conducted in the municipality of Vitória da Conquista, the third largest city in Bahia, including people affected by CD as research subjects. Interviews with these people were analysed according to thematic categories proposed by Minayo, with interpretation based on Deleuze and Guattari's production of subjectivities. In addition, a semi-structured instrument was applied to managers at different levels of the health network, analysing simple and relative frequencies of actions and services offered in the local health network in 2024. Results: Managers' lack of knowledge about the structure and operationalisation process of the SUS care network reinforces contexts of operational vulnerability which, together with the clinicalepidemiological characteristics of people affected by CD, also demarcate a complex social vulnerability. This scenario limits access to timely diagnosis, aetiological treatment, and comprehensive care, as well as surveillance measures, such as those aimed at preventing the vertical transmission of CD. The systematization of the narratives of those affected brought into perspective the following categories: 1) health conditions, diagnosis, treatment, and care; 2) perceptions of the health system; and 3) the experience of illness of those affected by CD. Conditions of illness were identified that can perpetuate cycles of vulnerability, represented by contexts of low schooling, loss of employment, lack of knowledge about the disease and barriers to accessing health services. The SUS is perceived as incapable of responding to the real health needs felt in the light of the recognition of the therapeutic itineraries experienced, leading people to give up seeking care. The experience of falling ill with CD along the trajectories was characterized by (dis)encounters that increased feelings of anxiety, hopelessness, physical and psychosocial compromises, and reduced self-esteem and vitality. Conclusion: There are critical issues that emerge from the translated therapeutic itinerary and the experiences of CD in a community in the interior of Bahia. There are great challenges for the SUS to promote the visibility of the needs of these people, to guarantee the right to a full and dignified life, to promote care based on the framework of comprehensive care and equity of care proposed by the Brazilian Health Reform. Thus, the way in which the health network is organized in this municipality points to the need to build lines of care for CD, to open up democratic spaces for a path capable of making life the protagonist in all its dimensions, from the perspective of the human right to access. For this to happen, the encounters that take place at the different Lines of Care must be imbued with intentions that lead the people concerned towards a full, powerful and dignified life.