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

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 investigato...

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7650909/
https://www.ncbi.nlm.nih.gov/pubmed/33165551
http://dx.doi.org/10.1093/inthealth/ihaa067
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author 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
author_facet 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
author_sort Peay, Holly L
collection PubMed
description 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.
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spelling pubmed-76509092020-11-16 Recommendations from Thai stakeholders about protecting HIV remission (‘cure’) trial participants: report from a participatory workshop 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 Int Health Original Article 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. Oxford University Press 2020-11-09 /pmc/articles/PMC7650909/ /pubmed/33165551 http://dx.doi.org/10.1093/inthealth/ihaa067 Text en © The Author(s) 2020. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. http://creativecommons.org/licenses/by/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Article
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
Recommendations from Thai stakeholders about protecting HIV remission (‘cure’) trial participants: report from a participatory workshop
title Recommendations from Thai stakeholders about protecting HIV remission (‘cure’) trial participants: report from a participatory workshop
title_full Recommendations from Thai stakeholders about protecting HIV remission (‘cure’) trial participants: report from a participatory workshop
title_fullStr Recommendations from Thai stakeholders about protecting HIV remission (‘cure’) trial participants: report from a participatory workshop
title_full_unstemmed Recommendations from Thai stakeholders about protecting HIV remission (‘cure’) trial participants: report from a participatory workshop
title_short Recommendations from Thai stakeholders about protecting HIV remission (‘cure’) trial participants: report from a participatory workshop
title_sort recommendations from thai stakeholders about protecting hiv remission (‘cure’) trial participants: report from a participatory workshop
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7650909/
https://www.ncbi.nlm.nih.gov/pubmed/33165551
http://dx.doi.org/10.1093/inthealth/ihaa067
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