Taking Antiretroviral Therapy for HIV Infection: Learning from Patients' Stories


Address correspondence and reprint requests to Dr. Laws: Senior Investigator in Social Science and Policy, Center for Research on Culture and Health, Latino Health Institute, 95 Berkeley St., Boston, MA 02116 (e-mail bart@lhi.org).


OBJECTIVE: To describe how people with HIV understand and experience the problem of adhering to antiretroviral medication regimens.

DESIGN: We performed a qualitative study based on interviews with HIV-infected patients, including 46 clients of AIDS service organizations, who were sampled according to age, ethnicity, and injection drug use history, and a convenience sample of 15 patients. Interviews were conducted in English or Spanish and were audiotaped and transcribed.

PARTICIPANTS: Of 52 respondents who had prescriptions for antiretroviral therapy, 25 were randomly selected for in-depth analysis. Of these, 5 reported having an AIDS diagnosis, 15 reported symptoms they attributed to HIV, and 5 reported having no symptoms of HIV disease.

MEASUREMENTS AND MAIN RESULTS: Investigators prepared structured abstracts of interviews to extract adherence-related data. One investigator compared the abstracts with the original transcripts to confirm the interpretations, and used the abstracts to organize and classify the findings. Most subjects (84%) reported recent nonadherent behavior, including ceasing treatment, medication “holidays,” sleeping through doses, forgetting doses, skipping doses due to side effects, and following highly asymmetric schedules. Initially, most reported that they were not significantly nonadherent, and many did not consider their behavior nonadherent. Only a minority clearly understood the possible consequences of missing doses. Most said they had not discussed their nonadherence with their physicians.