HIV/AIDS patients’ perspectives on adhering to regimens containing protease inhibitors
OBJECTIVE: To gather qualitative data regarding HIV/AIDS patients’ perspectives about HIV-1 protease inhibitors (PIs), and about their experiences taking and adhering to regimens containing PIs.
DESIGN: Six focus groups of persons under care for HIV were conducted between September and November 1996 regarding participants’ knowledge, awareness, experiences when taking, and adherence to antiretroviral regimens containing PIs. An identical discussion guide was used to facilitate all six groups. Focus group proceedings were audiotaped, transcribed, coded for themes, and analyzed qualitatively.
SETTING: HIV/AIDS practices of three teaching hospitals and two community health centers.
PATIENTS/PARTICIPANTS: Fifty-six patients with HIV disease: 28 men and 28 women.
MEASUREMENTS AND MAIN RESULTS: Knowledge and positive impressions of PIs were prevalent among this diverse group of persons with HIV, and did not differ by race/ethnicity or gender. Most knew that these were new, potent medications for treating HIV/AIDS. Networks of persons with HIV and medical providers were the most important information sources. Those taking PIs were aware that adherence to the regimen is important, and most were using special strategies to maximize their own adherence, but expressed considerable frustration about the central role these medication regimens had assumed in their life. A subset who did not believe they would adhere to these regimens had declined treatment with them. Motivating factors for taking and adhering to these complex regimens were improving CD4 counts and viral loads and the patient-provider relationship.
CONCLUSIONS: Among those with HIV/AIDS, awareness of PIs and their effectiveness is substantial, owing to the impact of informal networks and medical providers. This early positive “reputation” of PIs may enhance motivation for adherence. Those who are taking PIs invest substantial effort adhering to these complex regimens, but resent the need to make medications the focus of their lives.
Key wordsHIV/AIDS adherence compliance protease inhibitors antiretroviral therapy
Unable to display preview. Download preview PDF.
- 7.Centers for Disease Control and Prevention. Update: trends in AIDS incidence—United States, 1996. MMWR. 1997;46:861–7.Google Scholar
- 10.Panel on Clinical Practices for Treatment of HIV Infection. Guidelines for the Use of Antiretroviral Agents in HIV-Infected Adults and Adolescents. Draft document. Washington, DC: Department of Health and Human Services; June 19, 1997.Google Scholar
- 11.Report of the NIH Panel to Define Principles of HIV Infection. Draft document. Bethesda, Md: National Institutes of Health; June 19, 1997.Google Scholar
- 17.Meichenbaum D, Turk DC. Facilitating Treatment Adherence: A Practitioner’s Guidebook. New York, NY: Plenum Press; 1987:20.Google Scholar
- 20.Mostashari F, Blankenship K, Altice FL. “Trust” and HIV medication use among HIV+ inmates in Connecticut. Presented at the XIth International Conference on AIDS. Vancouver, BC, Canada, July 1996. Abstract Th.D.5189.Google Scholar
- 21.Shapiro J, Wolfe H, Sharp V. Patient attitudes toward zidovudine treatment as a function of behavioral, social, and demographic characteristics. Presented at the XIth International Conference on AIDS. Vancouver, BC, Canada, July 1996. Abstract Th.D.5188.Google Scholar
- 22.Samuels JE, Hendrix J, Hilton M, et al. Zidovudine therapy in an inner city population. J AIDS. 1990;3:877–83.Google Scholar
- 27.Morgan DL. Focus Groups as Qualitative Research. Beverly Hills, Calif: Sage Publications; 1988:53–70.Google Scholar
- 28.Glaser BG. Theoretical Sensitivity: Advances in the Methodology of Grounded Theory. Mills Valley, Calif: The Sociology Press; 1978.Google Scholar
- 29.Mullins PD, Reynolds R. The potential of grounded theory for health education research: linking theory and practice. Health Educ Monthly. 1978;6:280.Google Scholar
- 30.Centers for Disease Control and Prevention. HIV/AIDS Surveill Rep. 1996;8(2):1–22.Google Scholar
- 31.Mostashari F, Riley E, Selwyn PL, Altice FL. Acceptance and adherence with antiretroviral therapy among HIV-infected women in a correctional facility. J AIDS. 1998;18. In press.Google Scholar