This is a qualitative research aiming at disseminating findings of research conducted on participants treated for HIV in Uganda and describing the rewards and challenges encountered in the program. The study involved 466 adult participants living with HIV initiating antiretroviral therapy (ART) in the Uganda Antiretroviral Rural Treatment Outcomes (UARTO) cohort study.
The researchers’ main objective was to deliver the results of studies to participants sinc,e it was claimed that much research was conducted on participants without any results being communicated to them. The authors described the “preparation, logistics, confidentiality concerns, participation responses and follow up of the dissemination processes” in a six-step format which was both clear and reproducible. The first step examined the willingness of research subjects to receive their results and the best format and content to disseminate the information. During routine visits, researchers asked patients about their confidentiality concerns for example concerns of meeting with other research participants, and the type of results they wished to be communicated to them. Step two secured independent ethics review of the protocol, which involved its discussion by 4 entities namely; ‘chairs of the Mbarara University of Science and Technology Institutional Review Committee (MUST IRC); the assistant executive secretary of the Uganda National Council of Science and Technology (UNCST), and the Partners Human Research Committee’. Step three involved the preparation of the content of dissemination program and the selection of topics to be discussed in the meeting. The content included data generated during studies over a period of 7 years. Step four described the manner by which patients were invited for the meeting. Out of 540 participants, 487 were invited and 466 actually attended the meeting. Step five explained how patients were transported to the meeting and the fact that they were reimbursed for their transportation fees. Step six described the event itself, which was carried out in the local language and participants were encouraged to openly ask questions about the study results. Overall, the event respected the local culture by creating a festive atmosphere and local cuisine dinner.
The paper clearly explains the efforts exerted by the research team. It clarifies many of the challenges they faced in communicating the knowledge with the participants, which could be faced in populations of similar settings. Some of these difficulties included, the language barrier and the lack of equivalent scientific terminologies in the local language.
But the program was rewarding on many aspects. Researchers claimed that many of the participants felt more respected after the event. In addition, they identified points that could be potential for miscommunication during the translation process. Moreover, participants asked questions during the event, which were later answered by the researchers after they prepared standardized responses. Finally that dissemination program addressed critical issues like confidentiality concerns, language limitations as well as the dissemination of research findings to participants with high illiteracy rate. This program could be successfully implemented in other sub-Saharan countries.
However, the study lacks quantitative analysis that could provide more validity to the results. It could have targeted the challenges in a more comprehensive manner and tested how prevalent these challenges were. I still believe that these types of qualitative studies have the potential of probing issues in a community, which are critical from public health perspective. People often underestimate the role of patient education in the adherence to treatment. Therefore; a dissemination program like this one, not only benefits this population of research subjects but also paves the way for carrying out further research that addresses the local needs. It abridges the gap between science and community and allows the participants to be a part of the science advancement process. This was clear in the way the subjects felt recognized and respected at the end of the event. Qualitative research is often deemed “non-scientific” but this type of study proved how significant it is in provision of better health care. It also recognized the need for further research to address newly identified issues.
Baylor, A., Muzoora, C., Bwana, M., Kembabazi, A., Haberer, J. E., Matthews, L. T., … & Bangsberg, D. R. (2013). Dissemination of Research Findings to Research Participants Living with HIV in Rural Uganda: Challenges and Rewards. PLoS medicine, 10(3), e1001397.