Original Articles

Journal of General Internal Medicine

, Volume 15, Issue 12, pp 848-858

First online:

Taking antiretroviral therapy for HIV infection

Learning from patients’ stories
  • M. Barton LawsAffiliated withthe Latino Health Institute Center for Research on Culture and Health and the Department of Family Medicine and Community Health, Tufts University School of Medicine Email author 
  • , Ira B. WilsonAffiliated withDepartment of Medicine, New England Medical Center and Tufts University School of Medicine
  • , Diana M. BowserAffiliated withHarvard School of Public Health, Case Western Reserve University
  • , Sarah E. KerrAffiliated withthe Department of Anthropology, Case Western Reserve University

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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 indepth 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.

CONCLUSIONS: Many people rationalize their difficulty in adhering to HIV treatment by deciding that the standard of adherence they can readily achieve is appropriate. Physicians should inquire about adherence-related behavior in specific detail, and ensure that patients understand the consequences of not meeting an appropriate standard.

Key words

antiretroviral therapy adherence HIV