“Supposed to make you better but it doesn’t really”: HIV-positive youths’ perceptions of HIV treatment

PurposeHalf of new HIV infections worldwide occur among young people. Youth, particularly young women aged 15–29 years, represent a growing population to experience HIV. This study investigated HIV-positive youths’ perceptions of, and experiences with, antiretroviral treatment.MethodsA community-based, participatory approach was used to conduct a mixed methods research study. Thirty-four qualitative, in-depth, semi-structured interviews were conducted with HIV-positive youth (ages 12–24 years) in Ontario, Canada. Brief structured demographic surveys were also administered. A research team of HIV-positive youth, professionals, and researchers collaboratively analyzed the data for emerging themes.ResultsFour major themes emerged: Treatment knowledge: confusion and skepticism. Many participants did not understand, or believe in, antiretroviral treatment. Some youth on treatment did not understand why they were taking medications. Treatment decision-making: lack of choice and feeling emotionally unprepared. Some youth did not feel that they had choices about treatment, and others did not feel ready to make treatment decisions. Difficulties taking medications. Youth had problems with social routine disruption, feeling “different” and side effects. Many viewed costs of medications as a barrier to treatment. Inconsistent treatment adherence and treatment interruptions, which were common amongst participants.ConclusionsYouth may need support for managing difficulties with treatments, such as side effects, social impacts, and adherence. Developmentally appropriate, empowerment-based treatment education may be helpful for HIV-positive youth. The availability of social programs to provide treatment access does not guarantee that youth will be aware of them. This may indicate a need for youth-specific outreach.