Life Experiences of Youth Who Were Born with HIV Infection in Puerto Rico: The Voices of Young Survivors

Abstract

This study used interpretative phenomenological analysis (IPA) to examine life experiences of perinatally HIV-infected (pHIV-I) youth in Puerto Rico seeking to understand the meanings and implications of antiretroviral therapy (ART) in their lives, while emphasizing the interactive and dynamic processes that underlie these experiences. Twenty in-depth interviews were conducted and audio-recorded. Interviews explored the meaning, taking of and adherence to medications. The study found that ART held a very special and particular meaning for participants who attributed their survival to this treatment. Nevertheless, the meaning they constructed around adherence to, and dependence on ART for their survival was complex and continuously evolved. As expected, meaning construction changed throughout the respondents’ lives, and their various constructions evolved as they entered and exited different stages of the life course. Some questioned why they had to be medicated when they felt “good and healthy.” Throughout, they acknowledged suffering the burdens of adverse effects, multiple doses, and complex schedules and described their medication with ambivalence, as both “good and complicated.” Others associated their dependence on “medications” with disfiguring adverse events, body image distortion and interference with studies and social activities. Our findings suggest that programs serving pHIV-I young adults need to carefully craft messages highlighting the importance of adherence within a broader