Ugandan Study Participants Experience Electronic Monitoring of Antiretroviral Therapy Adherence as Welcomed Pressure to Adhere

Abstract

Many new technologies monitor patients' and study participants' medical adherence. Some have cautioned that these devices transgress personal autonomy and ethics. But do they? This qualitative study explored how Ugandan study participants perceive the effect of electronic monitoring of their adherence to antiretroviral therapy (ART) on their freedoms to be non-adherent and pursue other activities that monitoring may inadvertently expose. Between August 2014 and June 2015, we interviewed 60 Ugandans living with HIV and enrolled in the Uganda AIDS Rural Treatment Outcomes (UARTO) study, a longitudinal, observational study involving electronic adherence monitors (EAMs) to assess ART adherence. We also interviewed 6 UARTO research assistants. Both direct and indirect content analysis were used to interpret interview transcripts. We found that monitoring created a sense of pressure to adhere to ART, which some participants described as "forcing" them to adhere. However, even participants who felt that monitoring forced them to take medications perceived using the EAM as conducive to their fundamental goal of high ART adherence. Overall, even if monitoring may have limited participants' effective freedom to be non-adherent, participants welcomed any such effect. No participant rejected the EAM on the grounds that it would limit that effective freedom. Reports that monitoring altered behaviors unrelated to pill-taking were rare. Researchers should continue to be vigilant about the ways in which behavioral health monitoring affects autonomy, but should also recognize that even autonomy-limiting monitoring strategies may enable participants to achieve their own goals.

Adherence to antiretroviral treatment among children and adolescents in Tanzania: Comparison between pill count and viral load outcomes in a rural context of Mwanza region

“…The most widely adopted methods, such as self/caregiver reported or pill count, are often not consistent with the viral load determination measurement. The existing methods should be better validated, and the agreement between viral suppression and other methods, such drug concentration in biologic samples or electronic drug monitoring, considering patient autonomy while being conducive to reach fundamental goals of high ART adherence [ 50 ]. Such methods should be further investigated in order to better define an accurate and uniform approach to evaluate adherence among young populations in low resource settings.…”

Super learner analysis of real‐time electronically monitored adherence to antiretroviral therapy under constrained optimization and comparison to non‐differentiated care approaches for persons living with HIV in rural Uganda

“…Furthermore, interruptions in events could trigger additional tests during real-time but not standard monitoring; thus, both the reference "observed" testing regime differed and the extra tests themselves may have changed adherence. Indeed, average adherence appeared to increase when participants were switched from standard to real-time monitoring [10], and qualitative work supports a possible motivational effect of "being watched" [38,39]. However, the number of >24 hour interruptions was similar if not higher during real-time monitoring.…”

“The research assistants kept coming to follow me up; I counted myself as a lucky person”: Social support arising from a longitudinal HIV cohort study in Uganda

“…We conducted a qualitative study of participants enrolled in a longitudinal cohort study that monitored adherence to ART in southwest Uganda, and of research assistants (RAs) for the study. Our primary aim was to understand ethical considerations related to adherence monitoring, which we have described elsewhere [16][17][18]. In this manuscript, we analyze social support that participants derived from study participation, which was an emergent and unexpected finding of our study.…”