Research ethics in context: Understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border
© The Author(s) 2020. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. 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 reu...
Saved in:
Main Authors: | , , , , , , , , , , |
---|---|
Other Authors: | |
Format: | Article |
Published: |
2020
|
Subjects: | |
Online Access: | https://repository.li.mahidol.ac.th/handle/123456789/60577 |
Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
Institution: | Mahidol University |
id |
th-mahidol.60577 |
---|---|
record_format |
dspace |
spelling |
th-mahidol.605772020-12-28T13:11:33Z Research ethics in context: Understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border Napat Khirikoekkong Nattapat Jatupornpimol Suphak Nosten Supa At Asarath Borimas Hanboonkunupakarn Rose McGready Francois Nosten Jennifer Roest Michael Parker Maureen Kelley Phaik Yeong Cheah Shoklo Malaria Research Unit Mahidol University Nuffield Department of Medicine University of Oxford Medical Sciences Division Medicine © The Author(s) 2020. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. 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. 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. 2020-12-28T06:11:33Z 2020-12-28T06:11:33Z 2020-11-01 Article International Health. Vol.12, No.6 (2020), 551-559 10.1093/inthealth/ihaa052 18763405 18763413 2-s2.0-85095968863 https://repository.li.mahidol.ac.th/handle/123456789/60577 Mahidol University SCOPUS https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85095968863&origin=inward |
institution |
Mahidol University |
building |
Mahidol University Library |
continent |
Asia |
country |
Thailand Thailand |
content_provider |
Mahidol University Library |
collection |
Mahidol University Institutional Repository |
topic |
Medicine |
spellingShingle |
Medicine Napat Khirikoekkong Nattapat Jatupornpimol Suphak Nosten Supa At Asarath Borimas Hanboonkunupakarn Rose McGready Francois Nosten Jennifer Roest Michael Parker Maureen Kelley Phaik Yeong Cheah Research ethics in context: Understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border |
description |
© The Author(s) 2020. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. 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. 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. |
author2 |
Shoklo Malaria Research Unit |
author_facet |
Shoklo Malaria Research Unit Napat Khirikoekkong Nattapat Jatupornpimol Suphak Nosten Supa At Asarath Borimas Hanboonkunupakarn Rose McGready Francois Nosten Jennifer Roest Michael Parker Maureen Kelley Phaik Yeong Cheah |
format |
Article |
author |
Napat Khirikoekkong Nattapat Jatupornpimol Suphak Nosten Supa At Asarath Borimas Hanboonkunupakarn Rose McGready Francois Nosten Jennifer Roest Michael Parker Maureen Kelley Phaik Yeong Cheah |
author_sort |
Napat Khirikoekkong |
title |
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_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_sort |
research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the thai–myanmar border |
publishDate |
2020 |
url |
https://repository.li.mahidol.ac.th/handle/123456789/60577 |
_version_ |
1763495475786285056 |