{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T05:15:31Z","timestamp":1777871731172,"version":"3.51.4"},"reference-count":47,"publisher":"Public Library of Science (PLoS)","issue":"1","license":[{"start":{"date-parts":[[2023,1,25]],"date-time":"2023-01-25T00:00:00Z","timestamp":1674604800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Wellcome Trust and MRC Newton Fund Collaborative Award","award":["200344\/Z\/15\/Z"],"award-info":[{"award-number":["200344\/Z\/15\/Z"]}]},{"DOI":"10.13039\/100004440","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["096527"],"award-info":[{"award-number":["096527"]}],"id":[{"id":"10.13039\/100004440","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004440","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["203132"],"award-info":[{"award-number":["203132"]}],"id":[{"id":"10.13039\/100004440","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004440","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["220211\/Z\/20\/Z"],"award-info":[{"award-number":["220211\/Z\/20\/Z"]}],"id":[{"id":"10.13039\/100004440","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec001\"><jats:title>Background<\/jats:title><jats:p>Researchers have a responsibility to protect all participants, especially vulnerable participants, from harm. Vulnerability is increasingly understood to be context specific, yet limited guidance is available regarding the vulnerability and agency of research participants in different cultural settings. This study aims to explore research participants\u2019 daily vulnerability and agency, and how these interact with participants\u2019 research experiences in their own words. Researchers\u2019 views and responses were also explored.<\/jats:p><\/jats:sec><jats:sec id=\"sec002\"><jats:title>Methods<\/jats:title><jats:p>A qualitative study was conducted around two scrub typhus research studies in northern Thailand. A thematic analysis was carried out on 42 semi-structured interviews with research participants, their families, researchers and key informants.<\/jats:p><\/jats:sec><jats:sec id=\"sec003\"><jats:title>Results<\/jats:title><jats:p>The majority of the research participants belonged to a hill tribe ethnic minority group. Common challenges were related to Thai language barriers, travel difficulties, uncertain legal status, unstable employment, lack of education and healthcare. We did not identify new vulnerabilities but we found that the extent of these vulnerabilities might be underestimated or even hidden from researchers in some cases. Despite these challenges people demonstrated agency in their daily lives and were often motivated and supported in this by family members. The majority of perceived research benefits were related to healthcare and gaining knowledge, while attending follow-up visits could be a burden for some.<\/jats:p><\/jats:sec><jats:sec id=\"sec004\"><jats:title>Conclusions<\/jats:title><jats:p>Our approach to research in culturally and socioeconomically diverse settings should be more responsive to participants\u2019 specific vulnerabilities and abilities evidenced in their daily life, rather than attributing vulnerability on the basis of membership of pre-defined \u2018vulnerable groups\u2019. Researchers need to be aware and responsive towards the challenges participants face locally in order to minimise the burdens of research participation whilst allowing participants to benefit from research.<\/jats:p><\/jats:sec>","DOI":"10.1371\/journal.pone.0280056","type":"journal-article","created":{"date-parts":[[2023,1,25]],"date-time":"2023-01-25T18:25:15Z","timestamp":1674671115000},"page":"e0280056","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":6,"title":["Vulnerability and agency in research participants\u2019 daily lives and the research encounter: A qualitative case study of participants taking part in scrub typhus research in northern Thailand"],"prefix":"10.1371","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9327-0234","authenticated-orcid":true,"given":"Rachel C.","family":"Greer","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nipaphan","family":"Kanthawang","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer","family":"Roest","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tri","family":"Wangrangsimakul","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"Parker","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maureen","family":"Kelley","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6327-3266","authenticated-orcid":true,"given":"Phaik Yeong","family":"Cheah","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2023,1,25]]},"reference":[{"key":"pone.0280056.ref001","doi-asserted-by":"crossref","first-page":"11","DOI":"10.3138\/ijfab.5.2.11","article-title":"Why bioethics needs a concept of vulnerability","volume":"5","author":"W Rogers","year":"2012","journal-title":"Int J Fem Approaches Bioeth"},{"key":"pone.0280056.ref002","unstructured":"The World Medical Association. WMA Declaration of Helsinki\u2013Ethical Principles for Medical Research Involving Human Subjects 2013. Available from: https:\/\/www.wma.net\/policies-post\/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects\/."},{"key":"pone.0280056.ref003","unstructured":"Council for International Organizations of Medical Sciences (CIOMS). International Ethical Guidelines for Health-related Research Involving Humans, Fourth Edition Geneva.2016."},{"key":"pone.0280056.ref004","unstructured":"The International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use ICH Harmonised Guideline: Integrated Appendum to ICH E6 (R1): Guideline for Good Clinical Practice E6 (R2). 2016."},{"issue":"1","key":"pone.0280056.ref005","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1186\/s12961-016-0164-6","article-title":"The concept of \u2018vulnerability\u2019 in research ethics: an in-depth analysis of policies and guidelines","volume":"15","author":"D Bracken-Roche","year":"2017","journal-title":"Health Res Policy Syst"},{"issue":"4","key":"pone.0280056.ref006","doi-asserted-by":"crossref","first-page":"191","DOI":"10.1111\/j.1467-8519.2008.00631.x","article-title":"VULNERABILITY IN RESEARCH AND HEALTH CARE; DESCRIBING THE ELEPHANT IN THE ROOM?","volume":"22","author":"SA Hurst","year":"2008","journal-title":"Bioethics"},{"issue":"3","key":"pone.0280056.ref007","doi-asserted-by":"crossref","first-page":"44","DOI":"10.1080\/15265160490497083","article-title":"The limitations of \"vulnerability\" as a protection for human research participants","volume":"4","author":"C Levine","year":"2004","journal-title":"The American journal of bioethics: AJOB"},{"key":"pone.0280056.ref008","doi-asserted-by":"crossref","first-page":"157","DOI":"10.22190\/FULP1701157Z","article-title":"WHAT VULNERABILITY? WHOSE VULNERABILITY? CONFLICT OF UNDERSTANDINGS IN THE DEBATE ON VULNERABILITY","volume":"15","author":"I. Zagorac","year":"2017","journal-title":"Facta Universitatis, Series: Law and Politics"},{"issue":"1","key":"pone.0280056.ref009","doi-asserted-by":"crossref","first-page":"121","DOI":"10.3138\/ijfab.2.1.121","article-title":"Elucidating the Concept of Vulnerability: Layers Not Labels","volume":"2","author":"F. Luna","year":"2009","journal-title":"Int J Fem Approaches Bioeth"},{"issue":"6","key":"pone.0280056.ref010","doi-asserted-by":"crossref","first-page":"325","DOI":"10.1111\/bioe.12035","article-title":"Not the Usual Suspects: Addressing Layers of Vulnerability","volume":"27","author":"F Luna","year":"2013","journal-title":"Bioethics"},{"issue":"2\u20133","key":"pone.0280056.ref011","doi-asserted-by":"crossref","first-page":"154","DOI":"10.7202\/1051280ar","article-title":"THE RELEVANCE OF THE ETHICS OF VULNERABILITY IN BIOETHICS","volume":"12","author":"J. Delgado Rodriguez","year":"2017","journal-title":"Les ateliers de l\u2019\u00e9thique \/ The Ethics Forum"},{"issue":"2","key":"pone.0280056.ref012","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1017\/S0963180109090203","article-title":"Vulnerability: Too Vague and Too Broad?","volume":"18","author":"D Schroeder","year":"2009","journal-title":"Camb Q Healthc Ethics"},{"issue":"6","key":"pone.0280056.ref013","doi-asserted-by":"crossref","first-page":"333","DOI":"10.1111\/bioe.12032","article-title":"Vulnerability in Research Ethics: a Way Forward","volume":"27","author":"MM Lange","year":"2013","journal-title":"Bioethics"},{"issue":"3","key":"pone.0280056.ref014","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3390\/socsci8030081","article-title":"Reconceptualising Children\u2019s Agency as Continuum and Interdependence","volume":"8","author":"T. Abebe","year":"2019","journal-title":"Soc Sci"},{"issue":"1\u20132","key":"pone.0280056.ref015","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1080\/17441692.2015.1109694","article-title":"Conceptualising the agency of highly marginalised women: Intimate partner violence in extreme settings","volume":"11","author":"C Campbell","year":"2016","journal-title":"Glob Public Health"},{"issue":"4","key":"pone.0280056.ref016","doi-asserted-by":"crossref","first-page":"399","DOI":"10.1080\/14733285.2012.726071","article-title":"\u2018Extraordinary survivors\u2019 or \u2018ordinary lives\u2019? Embracing \u2018everyday agency\u2019 in social interventions with child-headed households in Zambia","volume":"10","author":"R. Payne","year":"2012","journal-title":"Child Geogr"},{"issue":"1\u20132","key":"pone.0280056.ref017","doi-asserted-by":"crossref","first-page":"65","DOI":"10.1080\/17441692.2015.1013050","article-title":"Women\u2019s responses to intimate partner violence in Rwanda: Rethinking agency in constrained social contexts","volume":"11","author":"J Mannell","year":"2016","journal-title":"Glob Public Health"},{"key":"pone.0280056.ref018","unstructured":"National Statistical Office. Chiang Rai Provincial Statistical Report: 2018 Bangkok: Statistical Forecasting Bureau, National Statistical Office; 2019 [10\/08\/2020]."},{"key":"pone.0280056.ref019","unstructured":"Chiang Rai Highland People Development Center. Basic information on highland communities 2016. Accessed 2019."},{"issue":"1","key":"pone.0280056.ref020","first-page":"67","article-title":"Inequity in Accessing Health Care Service in Thailand in 2015: A Case Study of the Hill Tribe People in Mae Fah Luang District, Chiang Rai, Thailand","volume":"30","author":"T Apidechkul","year":"2016","journal-title":"J Health Res"},{"key":"pone.0280056.ref021","unstructured":"The Mirror Foundation. Thai citizenship [cited 2021 27\/01\/2021]. Available from: https:\/\/www.themirrorfoundation.org\/themirrorfoundation\/index.php\/9-current-projects\/thai-citizenship."},{"issue":"1","key":"pone.0280056.ref022","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1080\/1464936052000335955","article-title":"(Im)Mobilization and hegemony: \u2018hill tribe\u2019 subjects and the \u2018Thai\u2019 state","volume":"6","author":"K. McKinnon","year":"2005","journal-title":"Soc Cult Geogr"},{"key":"pone.0280056.ref023","unstructured":"National Statistical Office. Household Income\/Household Debt Thailand: National Statistical Office; [cited 2020 08\/12\/2020]. Available from: http:\/\/statbbi.nso.go.th\/staticreport\/page\/sector\/en\/08.aspx."},{"key":"pone.0280056.ref024","unstructured":"World Health Organization Regional Office for South-East Asia. WHO Country Cooperation Strategy, Thailand, 2017\u20132021: World Health Organization. Regional Office for South-East Asia.; 2017. Available from: https:\/\/apps.who.int\/iris\/handle\/10665\/255510."},{"key":"pone.0280056.ref025","unstructured":"United Nations Country Team in Thailand. Thailand Common Country Assessment Bangkok, Thailand: United Nations; 2016. Available from: www.undp.org\u203arbap\u203adocs\u203acca\u203aTH-CCA-2016."},{"issue":"1","key":"pone.0280056.ref026","doi-asserted-by":"crossref","first-page":"190","DOI":"10.1186\/s12939-016-0479-5","article-title":"Post universal health coverage trend and geographical inequalities of mortality in Thailand","volume":"15","author":"S Aungkulanon","year":"2016","journal-title":"Int J Equity Health"},{"issue":"3","key":"pone.0280056.ref027","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1017\/S1744133114000334","article-title":"The impact of Universal Health Coverage on health care consumption and risky behaviours: evidence from Thailand","volume":"10","author":"S Ghislandi","year":"2015","journal-title":"Health Econ Policy Law"},{"issue":"10126","key":"pone.0280056.ref028","doi-asserted-by":"crossref","first-page":"1205","DOI":"10.1016\/S0140-6736(18)30198-3","article-title":"Health systems development in Thailand: a solid platform for successful implementation of universal health coverage","volume":"391","author":"V Tangcharoensathien","year":"2018","journal-title":"Lancet"},{"issue":"5","key":"pone.0280056.ref029","doi-asserted-by":"crossref","first-page":"e0006477","DOI":"10.1371\/journal.pntd.0006477","article-title":"Causes of acute undifferentiated fever and the utility of biomarkers in Chiangrai, northern Thailand","volume":"12","author":"T Wangrangsimakul","year":"2018","journal-title":"PLoS Negl Trop Dis"},{"issue":"4","key":"pone.0280056.ref030","doi-asserted-by":"crossref","first-page":"363","DOI":"10.1179\/136485906X112158","article-title":"Causes of acute, undifferentiated, febrile illness in rural Thailand: results of a prospective observational study","volume":"100","author":"C Suttinont","year":"2006","journal-title":"Annals of tropical medicine and parasitology"},{"issue":"1","key":"pone.0280056.ref031","doi-asserted-by":"crossref","first-page":"577","DOI":"10.1186\/s12879-019-4185-y","article-title":"Diversity of infectious aetiologies of acute undifferentiated febrile illnesses in south and Southeast Asia: a systematic review","volume":"19","author":"K Wangdi","year":"2019","journal-title":"BMC Infect Dis"},{"issue":"2","key":"pone.0280056.ref032","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1093\/trstmh\/trx017","article-title":"Clinical manifestations of scrub typhus","volume":"111","author":"S Rajapakse","year":"2017","journal-title":"Trans R Soc Trop Med Hyg"},{"issue":"3","key":"pone.0280056.ref033","doi-asserted-by":"crossref","first-page":"391","DOI":"10.1086\/510585","article-title":"Scrub Typhus Serologic Testing with the Indirect Immunofluorescence Method as a Diagnostic Gold Standard: A Lack of Consensus Leads to a Lot of Confusion","volume":"44","author":"SD Blacksell","year":"2007","journal-title":"Clin Infect Dis"},{"issue":"4","key":"pone.0280056.ref034","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pntd.0008233","article-title":"The estimated burden of scrub typhus in Thailand from national surveillance data (2003\u20132018)","volume":"14","author":"T Wangrangsimakul","year":"2020","journal-title":"PLoS Negl Trop Dis"},{"key":"pone.0280056.ref035","article-title":"Clinical Characteristics and Outcome of Children Hospitalized With Scrub Typhus in an Area of Endemicity","author":"T Wangrangsimakul","year":"2019","journal-title":"J Pediatric Infect Dis Soc"},{"issue":"11","key":"pone.0280056.ref036","doi-asserted-by":"crossref","first-page":"2248","DOI":"10.1016\/j.socscimed.2007.08.003","article-title":"Ethnography\/ethics","volume":"65","author":"M. Parker","year":"2007","journal-title":"Soc Sci Med"},{"issue":"1","key":"pone.0280056.ref037","doi-asserted-by":"crossref","first-page":"100","DOI":"10.1186\/1471-2288-11-100","article-title":"The case study approach","volume":"11","author":"S Crowe","year":"2011","journal-title":"BMC Med Res Methodol"},{"key":"pone.0280056.ref038","first-page":"28","article-title":"The case study as a type of qualitative research","author":"A. B. Starman","year":"2013","journal-title":"Journal of Contemporary Educational Studies"},{"issue":"6","key":"pone.0280056.ref039","doi-asserted-by":"crossref","first-page":"551","DOI":"10.1093\/inthealth\/ihaa052","article-title":"Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai\u2013Myanmar border","volume":"12","author":"N Khirikoekkong","year":"2020","journal-title":"International health"},{"issue":"2","key":"pone.0280056.ref040","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"V Braun","year":"2006","journal-title":"Qual Res Psychol"},{"key":"pone.0280056.ref041","unstructured":"King N, Brooks J. The SAGE Handbook of Qualitative Business and Management Research Methods: Methods and Challenges. 2018 2022\/11\/09. 55 City Road, London: SAGE Publications Ltd. Available from: https:\/\/methods.sagepub.com\/book\/the-sage-handbook-of-qualitative-business-and-management-research-methods-v2."},{"key":"pone.0280056.ref042","unstructured":"Commission on Social Determinants of Health\u2014World Health Organization. Closing the gap in a generation: health equity through action on the social determinants of health\u2014Final report of the commission on social determinants of health. Geneva, Switzerland: World Health Organization; 2008."},{"key":"pone.0280056.ref043","doi-asserted-by":"crossref","first-page":"90","DOI":"10.1186\/1472-6939-15-90","article-title":"\"When they see us, it\u2019s like they have seen the benefits!\": experiences of study benefits negotiations in community-based studies on the Kenyan Coast","volume":"15","author":"DM Kamuya","year":"2014","journal-title":"BMC Med Ethics"},{"issue":"2","key":"pone.0280056.ref044","doi-asserted-by":"crossref","first-page":"37","DOI":"10.4314\/mmj.v20i2.10898","article-title":"Why do individuals agree to enrol in clinical trials? A qualitative study of health research participation in Blantyre, Malawi","volume":"20","author":"J Mfutso-Bengo","year":"2008","journal-title":"Malawi Med J"},{"issue":"6","key":"pone.0280056.ref045","doi-asserted-by":"crossref","first-page":"615","DOI":"10.1038\/76174","article-title":"The Declaration of Helsinki, CIOMS and the ethics of research on vulnerable populations","volume":"6","author":"D Zion","year":"2000","journal-title":"Nat Med"},{"issue":"3","key":"pone.0280056.ref046","doi-asserted-by":"crossref","first-page":"187","DOI":"10.1093\/inthealth\/ihw020","article-title":"Ethical challenges in research with orphans and vulnerable children: a qualitative study of researcher experiences","volume":"8","author":"MC Kelley","year":"2016","journal-title":"International health"},{"issue":"7","key":"pone.0280056.ref047","doi-asserted-by":"crossref","DOI":"10.1136\/bmjgh-2021-004937","article-title":"Model for developing context-sensitive responses to vulnerability in research: managing ethical dilemmas faced by frontline research staff in Kenya","volume":"6","author":"S Molyneux","year":"2021","journal-title":"BMJ Glob Health"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0280056","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,12,5]],"date-time":"2023-12-05T16:52:50Z","timestamp":1701795170000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0280056"}},"subtitle":[],"editor":[{"given":"Ahmed Mancy","family":"Mosa","sequence":"first","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2023,1,25]]},"references-count":47,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2023,1,25]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0280056","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,1,25]]}}}