Care pathways in informal and popular health subsystems in the experience of people living with HIV, Rio de Janeiro, Brazil, between 2021 and 2022

Four decades after the emergence of the Human Immunodeficiency Virus (HIV) infection, health systems still face the challenge of implementing effective policies to reduce the incidence of infection, mortality and problems such as stigma faced by people living with HIV (PLHIV). The objective of the study is to analyze the care pathways followed by PLHIV in the informal and popular health subsystems.

Qualitative study of 45 PLHIV treated at specialized Polyclinics in a city in the state of Rio de Janeiro, Brazil. Individual interviews were conducted from December 2021 to June 2022 using a guide that addressed the socioeconomic profile and perceptions about living with HIV.

There was a predominance of beliefs related to behaviors that expose individuals to HIV infection. For all participants, the diagnosis brought suffering and difficulty in accepting. In the informal subsystem, support from family and friends and participation in communities were essential to favor acceptance of the diagnosis and support the initiation and adherence to treatment, in addition to contributing to mental health. However, because of the prejudice and discrimination, the fear of sharing the diagnosis persisted. Social media emerged as an important source of information about HIV, complemented by medical guidance from the formal subsystem. In some cases, access to health services was facilitated by personal contacts. In the popular subsystem, the use of medicinal herbs, teas and complementary practices stood out to improve the general state of health and complement HIV treatment.

Understanding the activation of the informal and popular subsystems allows us to analyze the factors that guide the search for alternative care, expanding the understanding of the health needs of PLHIV and enabling more integrated care.