We followed the trajectory of a guiding user undergoing treatment for multidrug-resistant tuberculosis (MDR-TB). The narratives of Live Networks in care production showed: 1) Caring in the act of living: Overcoming stigmas and cultivating bonds that help overcome discourses fostered by fear, prejudice, exclusion and invisibility of subjects; 2) Live Networks of care: The in-betweens of the norm; and 3) Interfaces of user-health worker care: How can we demystify the judgment of health workers who, subordinated to limiting protocols, often stigmatize the user as someone who “abandons the treatment”? The guiding user perceived that caring means deterritorializing oneself, expressing one’s desires as power for transformation, and leaving the modus operandi towards creativity, with the user at the center of the process.
Keywords
Tuberculosis; Multidrug-resistant tuberculosis; Patient-centered care; Life-changing events; Community-based networks