"Not Taking it Will Just be Like a Sin": Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy

Sarah Bernays, Sara Paparini, Janet Seeley & Tim Rhodes Medical Anthropology, 2017; Read full paper online

More than seven million young people are living with HIV worldwide, most of whom have acquired HIV through vertical transmission. Global HIV treatment coverage with antiretroviral therapy (ART) currently reaches about 23% of children and adolescents who need it. Yet young people who do have access to care face a host of complex challenges. Recognising the interplay of social and relational factors that characterise youth in the epidemic more broadly is key to understanding what adherence and non-adherence may look like, day-to-day, for young people living with HIV and on ART.

This article presents findings from a longitudinal qualitative study with young people (age 10-22) living with HIV in Uganda, US, UK and Ireland embedded within an international HIV clinical trial. The study analysed young people's narratives of treatment adherence negotiations and revelations in clinical encounters.

Key emerging themes:

  • For most study partcipants the clinic and the household were the only places where their HIV status was known to others.
  • For many the HIV experience was reduced to pills and blood counts, while the other social aspects of their illness remained unfathomable.
  • Participants felt a moral reposnsibility to adhere to ART which was underpinned by the relationship held with their clinicians and caregivers.
  • Participants relied on monitoring to pick up problems rather than initiating a conversation about it.
  • When talking about non-adherence may participants sought to align their stories with legitimate scripts that could help rationalise their "personal deviation" from expected ART behaviour.

In all cases and settings, young people's narratives were shaped by understandings of treatment-taking as "right" and not taking treatment as "wrong", not only in a medical sense in terms of their health, but also in the moral sense whereby non-adherence was tantamount to a "sin"


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