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Recommendations from Thai stakeholders about protecting HIV remission ('cure') trial participants
Report from a participatory workshop
Peay, H. L., Ormsby, N. Q., Henderson, G. E., Jupimai, T., Rennie, S., Siripassorn, K., Kanchawee, K., Isaacson, S., Cadigan, R. J., Kuczynski, K., & Likhitwonnawut, U. (2020). Recommendations from Thai stakeholders about protecting HIV remission ('cure') trial participants: Report from a participatory workshop. International Health, 12(6), 567-574. https://doi.org/10.1093/inthealth/ihaa067
BACKGROUND: The social/behavioral HIV Decision-Making Study (DMS) assesses informed consent and trial experiences of individuals in HIV remission trials in Thailand. We convened a 1-d multi-stakeholder participatory workshop in Bangkok. We provide a meeting summary and reactions from DMS investigators.
METHODS: Workshop members viewed de-identified interview excerpts from DMS participants. They deliberated on the findings and made recommendations regarding informed choice for remission trials. Notes and recordings were used to create a summary report, which was reviewed by members and refined.
RESULTS: Workshop members' recommendations included HIV education and psychosocial support to establish the basis for informed choice, key trial information to be provided in everyday language, supportive decision-making processes and psychosocial care during and after the trial. Concerns included participant willingness to restart antiretrovirals after trial-mandated treatment interruption, unintended influence of the research team on decision-making and seemingly altruistic motivations for trial participation that may signal attempts to atone for stigmatized behavior.
CONCLUSIONS: The workshop highlighted community perspectives and resulted in recommendations for supporting informed choice and psychosocial and physical health. These are the first such recommendations arising from a deliberative process. Although some elements are rooted in the Thai context, most are applicable across remission trials.