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Refocusing the focus on adherence to antiretroviral therapy using a community-based participatory research approach Open Access


Other title
focused ethnography
qualitative methods
community-based participatory research
knowledge translation
antiretroviral therapy
humanizing healthcare
Type of item
Degree grantor
University of Alberta
Author or creator
Lefebvre, Megan, Elizabeth
Supervisor and department
Saunders, L Duncan (School of Public Health)
Houston, Stan (Medicine & Dentistry)
Examining committee member and department
Mayan, Maria (Extension)
Flicker, Sarah (Environmental studies)
Yasui, Yutaka (School of Public Health)
Saunders, L Duncan (School of Public Health)
Hughes, Christine (Pharmacy)
Simpson, Scot (Pharmacy)
Houston, Stan (Medicine & Dentistry)
School of Public Health
Date accepted
Graduation date
Doctor of Philosophy
Degree level
Adherence to antiretroviral therapy is critical to treatment success. Using an epidemiological and community-based participatory research approach, my thesis reports on two papers related to antiretroviral therapy success (and subsequent failure). My thesis also includes a third paper which discusses an effective and appropriate knowledge translation plan. In the first paper, I used logistic regression to compare initial treatment success among treatment-naïve HIV-positive individuals cared for at the Northern Alberta HIV Program. For individuals achieving initial treatment success, I used survival analysis to determine the probability of subsequent treatment failure. Results showed that compared to Canadian-born, non-Aboriginal patients, the odds of achieving initial treatment success were similar for foreign-born patients and significantly lower for Canadian-born Aboriginal patients. Of those individuals who achieved initial treatment success, compared to Canadian-born, non-Aboriginal patients, foreign-born and Canadian-born Aboriginal patients had similar rates of treatment failure. I concluded that HIV clinicians, researchers, HIV community services organizations, and HIV-positive individuals, work together to better understand adherence to antiretroviral therapy. As such, my second study used focused ethnography to understand, from the perspective of HIV-positive individuals who maintain adherence to their antiretroviral therapy, reasons for antiretroviral therapy success. I conducted one-on-one interviews with 14 individuals with “chaotic” lives (e.g., unstable housing, substance use, involvement in the sex trade, and incarceration) but who nonetheless had demonstrated sustained adherence to antiretroviral therapy and involved a ‘grand tour question’; “what is your secret for taking your HIV medication all the time?”. My data revealed “control” as the cornerstone for maintaining adherence. Participants felt that while they had little or no control over their life circumstances they recognized that, by taking their ART, they could have control over their HIV treatment, which enabled them to make additional positive life changes. The third paper is a commentary describing my knowledge translation plan (a video and peer-educators) to move the knowledge generated from the previous project into action. My evaluation of this knowledge translation plan emphasized the importance of “humanizing” the experience of ART adherence; peer-educators became local HIV medication “celebrities” to their peers. Together, the findings from this thesis consider antiretroviral therapy in a new light by emphasizing success; clinicians must be aware of the extent to which individuals believe they can control their HIV treatment and incorporate support for this sense of control in efforts to improve adherence.
Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.
Citation for previous publication
Lefebvre M, Hughes CA, Yasui Y, Saunders LD, Houston S. Antiretroviral treatment outcomes among foreign-born and Aboriginal people living with HIV/AIDS in northern Alberta. Canadian Journal of Public Health 2014;5(4):e251-e257.

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