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

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A Correction to this article was published on 15 June 2020

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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.

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Change history

  • 15 June 2020

    The original version of this article unfortunately contained an error. The authors would like to correct the error with this erratum.

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Acknowledgements

We would like to thank the individuals who participated in this study. This study was supported by an NIH/NIAID grant R21 AI108329.

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Authors and Affiliations

  1. Department of Pediatrics, Boston Medical Center, and Boston Children’s Hospital, One Boston Medical Center Pl, Dowling 3rd Floor, Boston, MA, 02118, USA

    Jeffrey I. Campbell

  2. Harvard T.H. Chan School of Public Health, Boston, MA, USA

    Nir Eyal

  3. Mbarara University of Science and Technology, Mbarara, Uganda

    Angella Musiimenta, Sylvia Natukunda & Nicholas Musinguzi

  4. Massachusetts General Hospital, Boston, MA, USA

    Bridget Burns & Jessica E. Haberer

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  1. Jeffrey I. Campbell
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  2. Nir Eyal
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  7. Jessica E. Haberer
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Correspondence to Jeffrey I. Campbell.

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Ethical Approval

This study was reviewed and approved by the IRB at Partners Healthcare/Massachusetts General Hospital, the Research Ethics Committee at MUST, and the Uganda National Council of Science and Technology. Notably, one member of our study team (JEH) was also involved with UARTO; however, she was not directly involved in data collection and the interviewers for our study were not members of the UARTO study staff.

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Campbell, J.I., Eyal, N., Musiimenta, A. et al. Ugandan Study Participants Experience Electronic Monitoring of Antiretroviral Therapy Adherence as Welcomed Pressure to Adhere. AIDS Behav 22, 3363–3372 (2018). https://doi.org/10.1007/s10461-018-2200-8

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