Cargando…

Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border

BACKGROUND: Research ethics guidelines set a high bar for conducting research with vulnerable populations, often resulting in their exclusion from beneficial research. Our study aims to better characterise participants’ vulnerabilities, agency, resourcefulness and sources of support. METHODS: We und...

Descripción completa

Detalles Bibliográficos
Autores principales: Khirikoekkong, Napat, Jatupornpimol, Nattapat, Nosten, Suphak, Asarath, Supa-at, Hanboonkunupakarn, Borimas, McGready, Rose, Nosten, Francois, Roest, Jennifer, Parker, Michael, Kelley, Maureen, Cheah, Phaik Yeong
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7651704/
https://www.ncbi.nlm.nih.gov/pubmed/33165549
http://dx.doi.org/10.1093/inthealth/ihaa052
_version_ 1783607585006419968
author Khirikoekkong, Napat
Jatupornpimol, Nattapat
Nosten, Suphak
Asarath, Supa-at
Hanboonkunupakarn, Borimas
McGready, Rose
Nosten, Francois
Roest, Jennifer
Parker, Michael
Kelley, Maureen
Cheah, Phaik Yeong
author_facet Khirikoekkong, Napat
Jatupornpimol, Nattapat
Nosten, Suphak
Asarath, Supa-at
Hanboonkunupakarn, Borimas
McGready, Rose
Nosten, Francois
Roest, Jennifer
Parker, Michael
Kelley, Maureen
Cheah, Phaik Yeong
author_sort Khirikoekkong, Napat
collection PubMed
description BACKGROUND: Research ethics guidelines set a high bar for conducting research with vulnerable populations, often resulting in their exclusion from beneficial research. Our study aims to better characterise participants’ vulnerabilities, agency, resourcefulness and sources of support. METHODS: We undertook qualitative research around two clinical studies involving migrant women living along the Thai–Myanmar border. We conducted 32 in-depth interviews and 10 focus group discussions with research participants, families, researchers and key informants. RESULTS: We found that being ‘undocumented’ is at the core of many structural vulnerabilities, reflecting political, economic, social and health needs. Although migrant women lead challenging lives, they have a support network that includes family, employers, community leaders, non-governmental organisations and research networks. Migrant women choose to participate in research to access quality healthcare, gain knowledge and obtain extra money. However, research has the potential to exacerbate existing vulnerabilities, such as the burdens of cross-border travel, foregoing work and being more visible as migrants. CONCLUSIONS: Our study confirms that research is important to provide evidence-based care and was viewed by participants as offering many benefits, but it also has hidden burdens. Migrant women exercised agency and resourcefulness when navigating challenges in their lives and research participation.
format Online
Article
Text
id pubmed-7651704
institution National Center for Biotechnology Information
language English
publishDate 2020
publisher Oxford University Press
record_format MEDLINE/PubMed
spelling pubmed-76517042020-11-17 Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border Khirikoekkong, Napat Jatupornpimol, Nattapat Nosten, Suphak Asarath, Supa-at Hanboonkunupakarn, Borimas McGready, Rose Nosten, Francois Roest, Jennifer Parker, Michael Kelley, Maureen Cheah, Phaik Yeong Int Health Original Article BACKGROUND: Research ethics guidelines set a high bar for conducting research with vulnerable populations, often resulting in their exclusion from beneficial research. Our study aims to better characterise participants’ vulnerabilities, agency, resourcefulness and sources of support. METHODS: We undertook qualitative research around two clinical studies involving migrant women living along the Thai–Myanmar border. We conducted 32 in-depth interviews and 10 focus group discussions with research participants, families, researchers and key informants. RESULTS: We found that being ‘undocumented’ is at the core of many structural vulnerabilities, reflecting political, economic, social and health needs. Although migrant women lead challenging lives, they have a support network that includes family, employers, community leaders, non-governmental organisations and research networks. Migrant women choose to participate in research to access quality healthcare, gain knowledge and obtain extra money. However, research has the potential to exacerbate existing vulnerabilities, such as the burdens of cross-border travel, foregoing work and being more visible as migrants. CONCLUSIONS: Our study confirms that research is important to provide evidence-based care and was viewed by participants as offering many benefits, but it also has hidden burdens. Migrant women exercised agency and resourcefulness when navigating challenges in their lives and research participation. Oxford University Press 2020-11-09 /pmc/articles/PMC7651704/ /pubmed/33165549 http://dx.doi.org/10.1093/inthealth/ihaa052 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
Khirikoekkong, Napat
Jatupornpimol, Nattapat
Nosten, Suphak
Asarath, Supa-at
Hanboonkunupakarn, Borimas
McGready, Rose
Nosten, Francois
Roest, Jennifer
Parker, Michael
Kelley, Maureen
Cheah, Phaik Yeong
Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border
title Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border
title_full Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border
title_fullStr Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border
title_full_unstemmed Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border
title_short Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border
title_sort research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the thai–myanmar border
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7651704/
https://www.ncbi.nlm.nih.gov/pubmed/33165549
http://dx.doi.org/10.1093/inthealth/ihaa052
work_keys_str_mv AT khirikoekkongnapat researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT jatupornpimolnattapat researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT nostensuphak researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT asarathsupaat researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT hanboonkunupakarnborimas researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT mcgreadyrose researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT nostenfrancois researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT roestjennifer researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT parkermichael researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT kelleymaureen researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder
AT cheahphaikyeong researchethicsincontextunderstandingthevulnerabilitiesagencyandresourcefulnessofresearchparticipantslivingalongthethaimyanmarborder