Tough pill to swallow: Voices of perinatally HIV-infected youth

Background: In Puerto Rico, perinatally HIV-infected young adults are alive due to the successes in antiretroviral therapies (ART). Since a young age, they face the challenges and complexity of ART, including adherence and discipline. There is paucity in studies that explore the meaning of “medication” for this population.

Methods: In-depth interviews were conducted to fifteen perinatally HIV-infected women and men between the ages of 18 to 24. Their experiences as a young persons living with HIV were explored. Questions about medication meaning, intake, and adherence, were asked. The interviews were audio-recorded. NVIVO was used for the analysis. Responses were assessed using the Qualitative Interpretative Phenomenology Analysis.

Results: For the participants, the meaning of medication has been changing through their life. In early childhood, medications were only ‘vitamins' to be ‘strong and healthy'; and they acquired the habit of being compliant. Some questioned ‘why to take medication if I feel good and I am healthy'. At early adolescence, they become aware that ‘medication' and ‘being alive' is ‘the same thing'. They face the burden of side effects, multiple doses, and schedules; labeling the intake as ‘good and complicated at the same time'. They associate ‘medications' with body image and with interference with studying and social activities.

Conclusion: For the participants, medication means ‘life'. Adherence seems to be associated with social issues and not with being able to remember or understand the benefits of the therapy. Programs addressing the transition of childhood to adulthood should incorporate the social dimension of adherence.