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 unde...

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Main Authors: Khirikoekkong, N, Jatupornpimol, N, Nosten, S, Asarath, S-A, Hanboonkunupakarn, B, McGready, R, Nosten, F, Roest, J, Parker, M, Kelley, M, Cheah, PY
Format: Journal article
Language:English
Published: Oxford University Press 2020
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author Khirikoekkong, N
Jatupornpimol, N
Nosten, S
Asarath, S-A
Hanboonkunupakarn, B
McGready, R
Nosten, F
Roest, J
Parker, M
Kelley, M
Cheah, PY
author_facet Khirikoekkong, N
Jatupornpimol, N
Nosten, S
Asarath, S-A
Hanboonkunupakarn, B
McGready, R
Nosten, F
Roest, J
Parker, M
Kelley, M
Cheah, PY
author_sort Khirikoekkong, N
collection OXFORD
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.
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spelling oxford-uuid:0e03dc75-c3d2-4b00-8b41-f277b105794c2022-03-26T09:43:35ZResearch ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai-Myanmar borderJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:0e03dc75-c3d2-4b00-8b41-f277b105794cEnglishSymplectic ElementsOxford University Press2020Khirikoekkong, NJatupornpimol, NNosten, SAsarath, S-AHanboonkunupakarn, BMcGready, RNosten, FRoest, JParker, MKelley, MCheah, PYBackground 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.
spellingShingle Khirikoekkong, N
Jatupornpimol, N
Nosten, S
Asarath, S-A
Hanboonkunupakarn, B
McGready, R
Nosten, F
Roest, J
Parker, M
Kelley, M
Cheah, PY
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
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