[Disclosure of HIV infection from the perspective of adolescents living with HIV/AIDS and their parents and caregivers]. / A revelação do diagnóstico na perspectiva dos adolescentes vivendo com HIV/AIDS e seus pais e cuidadores.

ABSTRACT

The purpose of this study was to identify relevant issues in the disclosure of HIV-positive status in children and adolescents, aiming to improve the quality of their healthcare. A qualitative study included adolescents living with HIV/ AIDS and their parents and caregivers at AIDS reference services in São Paulo and Santos, Brazil. In-depth interviews and focus group were used. The main reasons for disclosure were poor treatment adherence, sexual maturity, adolescent's request, and inadequate procedures by medical staff. Disclosure was a critical moment for adolescents, with a strong impact on their life plans and horizons. Adolescents infected through sexual transmission and drug use reported the most problematic scenes involved in disclosure. Despite its initial negative impact, disclosure resulted in improved healthcare and better dialogue among the adolescents, caregivers, and healthcare providers. The adolescents also requested clear, no-nonsense, honest information. The authors conclude that health services need to actively provide an adequate approach to facilitate disclosure of HIV-positive status to children and adolescents, realizing that it is a long-term process supported by the family and a multidisciplinary team.