Cuidados contínuos e integrais em saúde na experiências de pessoas que vivem com HIV

Abstract

Four decades after the emergence of Human Immunodeficiency Virus (HIV) infection, healthcare systems still face the challenge of implementing effective policies to reduce infection incidence, mortality, and issues such as the stigma faced by people living with HIV (PLHIV). This dissertation aims to analyze the continuity of care and the informal and popular health subsystems in the experiences of PLHIV in a large municipality in Rio de Janeiro. These aspects are considered essential to the provision of continuous and comprehensive healthcare. The qualitative study was conducted with 45 PLHIV receiving care at specialized polyclinics, which serve as reference centers for HIV care in the municipality. Data were collected through face to-face interviews, and the findings were organized into two scientific articles. The first article aimed to analyze three dimensions of care continuity—managerial, informational, and relational—in the experiences of PLHIV. In the managerial dimension, limitations were identified, such as rigid schedules for tests and result delivery, compromising the continuity of care. Additionally, the absence of an institutionalized referral and counter-referral system was noted. The need to improve service infrastructure to ensure greater user privacy was highlighted. In the informational continuity dimension, gaps were observed in integration and communication among healthcare professionals, including the lack of shared electronic medical records and direct communication channels between users and services. In the relational dimension, the central role of the bond with infectious disease specialists was evident in maintaining a regular source of care, treatment adherence, and reducing absenteeism. The second article analyzed the care pathways taken by PLHIV within the informal and popular health subsystems, which are also part of a broader health concept. The results highlighted the prevalence of beliefs associated with specific behaviors linked to HIV transmission. The diagnosis was described as a moment of suffering and difficulty in acceptance. In the informal subsystem, the support of family, friends, and communities was crucial for promoting acceptance of the diagnosis, initiating treatment, fostering adherence, and contributing to mental health. Despite this, the fear of disclosing the diagnosis persisted due to prejudice and discrimination. Social media emerged as relevant sources of complementary information to formal medical care, while personal contacts sometimes facilitated access to healthcare services. In the popular subsystem, the use of medicinal herbs, teas, and complementary practices stood out as resources to enhance overall well-being and support HIV treatment. The study concludes that person-centered care, coupled with adequate organizational conditions, integrated service flows, digitization, connectivity, and interpersonal bonds between users and professionals, is essential for establishing trust and therapeutic reciprocity. These conditions are amenable to change and intervention by public healthcare management. Understanding how informal and popular subsystems are mobilized allows for a broader analysis of the health needs of PLHIV, fostering more integrated and inclusive care.