Reframing HIV adherence as part of the experience of illness

Understanding and enhancing adherence to HIV medications has been identified as a major challenge. The purpose of this study was to explore patterns and determinants of non-adherence among individuals receiving HIV care in a medical clinic. Seven focus groups were conducted with 42 HIV+ patients, and verbatim transcripts of focus group sessions were analyzed through a combination of ethnographic and content analysis. Of the participants currently on combination therapy, 68% reported at least one recent instance of non-adherence. The most commonly cited reasons for non-adherent behavior were grouped into four categories: (1) problems with side effects; (2) conflicts with daily life activities; (3) feelings of aversion toward the medications themselves; and (4) deliberate alterations to the prescribed regimen. Findings based on structured analysis of patient responses in each category differ from past research which defines adherence as a treatment problem and emphasizes logistical characteristics of the treatment regimen itself and patients' ability or willingness to follow specific instructions. In contrast, our focus group data suggest an alternative frame for understanding barriers to adherence which focuses on: (1) the meaning that adherence/pill-taking behavior has for individuals experiencing chronic illness; and (2) the impact that this behavior has on their identity. Because adherence behavior is integral to patients' experience of their disease, non-adherence is no longer a treatment problem, but is an illness problem. Framing adherence as an illness problem rather than a treatment problem is a critical shift that can be applied to the creation of assessments and interventions designed to support patient adherence; this article ends with a series of specific recommendations for programs, policy, and research.