Dissemination of trial results to study participants in Cambodia, Ethiopia and Pakistan: a qualitative study
Sarah A Cassidy-Seyoum, Bipin Adhikari, Muthoni Mwaura, Asia Khan, Shan-E- Zehra Zaidi, Zahida Azizullah, Bushra Qurashi, Kansite Gellebo, Samuel Alemu Bamboro, Mom Ean, Rupam Tripura, Hem Vattanak, Thy Vanda, Kem Sovann, Ou Simvieng, Phal Chanpheakdey, Hellen Mnjala, Grant Lee, Najia Ghanchi, Phaik Yeong Cheah, Ric N Price, M. Asim Beg, Tamiru Shibiru Degaga, Lek Dysoley, Kamala ThriemerObjectives
Dissemination of study results to research participants is an ethical imperative, yet it is rarely implemented in resource-limited settings partly due to a lack of clear guidance. The purpose of this study was to evaluate and explore dissemination activities that were conducted as part of a multi-site clinical trial of Plasmodium vivax treatment options, informing future dissemination strategies in similar resource-limited settings.
Design
Qualitative study using focus group discussions (FGDs) and an inductive–deductive thematic analysis approach.
Setting
Clinical trial study site catchment areas in Cambodia, Ethiopia and Pakistan.
Participants
Dissemination attendees were invited to participate in FGDs, a subset agreeing and able to participate. There were 25 participants in Cambodia, 34 in Ethiopia and 23 in Pakistan.
Results
The dissemination activities were well accepted by participants despite some expectations in receiving individual results rather than only aggregated trial results and suggestions for broader community dissemination. Dissemination participants perceived having learnt from the dissemination, demonstrating their knowledge of the trial and its results and attributing it to the dissemination. Dissemination activities may have failed to correct certain misconceptions, including the blurred distinction between clinical care and trial-related care; however, the dissemination had positive impacts, including making participants feel part of a larger endeavour.
Conclusion
Contributing to the limited data on dissemination in resource-limited settings, our findings provide context-informed recommendations that can be applied to similar settings. Our recommendations underscore the importance of tailoring activities according to participant preferences, such as potentially providing individual results and implementing broader community dissemination.
Trial registration number