HIV diagnosis disclosure: searching for its meaning and how it is perceived by a group of vertically infected adolescents / young adults – a qualitative perspective

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ABSTRACT We conducted a qualitative study aiming to understand the process of diagnosis disclosure in a group of HIV-infected adolescents/young adults, aware of their serological ‘status’, and among their caretakers, as well as its possible consequences. Data collection were carried out through semi-structured interviews with 40 adolescents/young adults, and with the caretakers of the patients under 18 years old, in a referral hospital in Rio de Janeiro, Brazil, in 2016. Results signalized that the HIV diagnosis disclosure was made usually by a close relative. Most of the adolescents/young adults claimed that they feel ‘normal’, despite the difficulties in sharing the diagnosis outside the family, and report feelings of rejection and social prejudice. The caretakers’ points of view coincided with the adolescents’ observations. We suggest that the diagnosis disclosure should not be postponed, since patients who underwent an adequate process of disclosure may more likely complied to treatment and experienced a better social insertion.