The importance of how research participants think they are perceived: results from an electronic monitoring study of antiretroviral therapy in Uganda
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Date
2018
Journal Title
Journal ISSN
Volume Title
Publisher
AIDS Care
Abstract
Novel monitoring technologies in HIV research, such as electronic adherence monitors (EAMs), have
changed the nature of researcher-participant interactions. Yet little is known about how EAMs and
the resulting interaction between researchers and participants affect research participation and the
data gathered. We interviewed participants and research assistants (RAs) in an observational cohort
study involving EAMs for HIV antiretroviral therapy (ART) in Uganda. We qualitatively explored
interviewees’ views about ethical issues surrounding EAMs and assessed data with conventional
and directed content analysis. Participants valued their relationships with RAs and were
preoccupied with RAs’ perceptions of them. Participants were pleased when the EAM revealed
regular adherence, and annoyed when it revealed non-adherence that contradicted self-reported
pill-taking behavior. For many, the desire to maintain a good impression incentivized adherence.
But some sought to creatively conceal non-adherence, or refused to use the EAM to avoid
revealing non-adherence to RAs. These findings show that participants’ perceptions of the study
staff’s perceptions of them affected the experience of being monitored, study participation, and
ultimately the data gathered in the study. Investigators in monitoring-based research should be
aware that social interactions between participants and study staff could affect both the practical
and ethical conduct of that research.
Description
Keywords
Social desirability bias, HIV/ AIDS, Adherence, Privacy, Trust, Human subjects research
Citation
Jeffrey I. Campbell, Angella Musiimenta, Bridget Burns, Sylvia Natukunda, Nicholas Musinguzi, Jessica E. Haberer & Nir Eyal (2018): The importance of how research participants think they are perceived: results from an electronic monitoring study of antiretroviral therapy in Uganda, AIDS Care, DOI: 10.1080/09540121.2018.1556381