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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...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2020
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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. |
format | Online Article Text |
id | pubmed-7650909 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
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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