"Supposed to Make You Better but It Doesn't Really": HIV-Positive Youths' Perceptions of HIV Treatment

Worldwide, half of all new HIV infections occur among young people. In the current study, the authors investigated HIV-positive youths' perceptions of and experiences with antiretroviral treatment.

The researchers employed a community-based, participatory approach to conduct a mixed-methods research study. They conducted 34 qualitative, in-depth, semi-structured interviews with HIV-positive people ages 12-24 in Ontario, and they administered brief structured demographic surveys.

To identify emerging themes, the data collected were analyzed by a team comprising professionals, researchers and HIV-positive youths. The chief themes that emerged were:

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• Treatment knowledge: confusion and skepticism. Many participants neither believed in nor understood antiretroviral therapy. Some of the youths did not understand why they were taking medications.

• Treatment decision-making: lack of choice and feeling emotionally unprepared. Some of the young participants said they did not feel they had choices about their treatment; others said they felt unready to make such choices.

• Difficulties taking medications. Side effects, disruptions of socials routines, and "feeling different" were all identified as problems.

• Inconsistent treatment adherence and treatment interruptions. These were common among the youths.

The researchers concluded that youths may benefit from support around such issues as side effects, social impact and adherence. "Developmentally appropriate, empowerment-based treatment education may be helpful for HIV-positive youth." Special outreach targeting youths may be needed to make the young patients aware of the availability of support programs.

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