The importance of how research participants think they are perceived: results from an electronic monitoring study of antiretroviral therapy in Uganda
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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DOI：
10.1080/09540121.2018.1556381
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发表时间：
2019-06-03
影响因子：
1.7
通讯作者：
Eyal，Nir
中科院分区：
文献类型：
--
作者：
Campbell，Jeffrey I.;Musiimenta，Angella;Eyal，Nir
艾滋病毒研究中的新监测技术，如电子依从性监测器(EAMS)，已经改变了研究人员-参与者互动的性质。然而，人们对EAMS以及由此产生的研究人员和参与者之间的互动如何影响研究参与和收集的数据知之甚少。我们采访了乌干达艾滋病毒抗逆转录病毒治疗(ART)的EAMS观察性队列研究的参与者和研究助理(RAS)。我们定性地探讨了受访者对围绕EAMS的伦理问题的看法，并使用常规和定向内容分析评估了数据。参与者重视他们与RAS的关系，并全神贯注于RAS对他们的看法。当EAM显示定期服药时，参与者感到高兴，当EAM显示不遵守与自我报告的服药行为相矛盾时，参与者感到恼火。对许多人来说，保持良好印象的愿望会激励他们坚持下去。但一些人试图创造性地掩盖不遵守规定，或拒绝使用EAM以避免披露不遵守RAS的情况。这些发现表明，参与者对研究人员对他们的看法的看法影响了被监测的体验、研究参与，并最终影响了在研究中收集的数据。以监测为基础的研究的研究人员应该意识到，参与者和研究人员之间的社会互动可能会影响该研究的实际和道德行为。
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.