Recommendations from Thai stakeholders about protecting HIV remission (‘cure’) trial participants: report from a participatory workshop

Abstract 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 inv...

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Bibliographic Details
Published in:International health 2020-11, Vol.12 (6), p.567-574
Main Authors: Peay, Holly L, Ormsby, Nuchanart Q, Henderson, Gail E, Jupimai, Thidarat, Rennie, Stuart, Siripassorn, Krittaecho, Kanchawee, Kunakorn, Isaacson, Sinéad, Cadigan, R Jean, Kuczynski, Kriste, Likhitwonnawut, Udom
Format: Article
Language:English
Subjects:
Clinical Trials as Topic
HIV Infections - drug therapy
HIV Infections - prevention & control
Humans
Informed Consent
Language
Original
Research Report
Thailand
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Summary:Abstract 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.
ISSN:1876-3413
1876-3405
DOI:10.1093/inthealth/ihaa067