Vulnerability and agency in research participants' daily lives and the research encounter: A qualitative case study of participants taking part in scrub typhus research in northern Thailand.
Vulnerability and agency in research participants' daily lives and the research encounter: A qualitative case study of participants taking part in scrub typhus research in northern Thailand.
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DOI：
10.1371/journal.pone.0280056
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发表时间：
2023
期刊：
影响因子：
3.7
通讯作者：
Cheah, Phaik Yeong
中科院分区：
文献类型：
--
作者：
Greer, Rachel;Kanthawang, Nipaphan;Roest, Jennifer;Wangrangsimakul, Tri;Parker, Michael;Kelley, Maureen;Cheah, Phaik Yeong
研究人员有责任保护所有参与者，特别是脆弱的参与者，使其免受伤害。脆弱性越来越多地被理解为与具体情况有关，但关于不同文化背景下研究参与者的脆弱性和机构的指导有限。本研究旨在探索研究参与者的日常脆弱性和代理，以及这些与参与者用自己的语言表达的研究经历之间的相互作用。研究人员的观点和反应也被探讨了。一项定性研究围绕泰国北部的两项丛林斑疹伤寒研究进行。对42名研究参与者、他们的家人、研究人员和关键信息提供者进行了主题分析。大多数研究参与者属于丘陵部落少数民族。共同的挑战与泰语障碍、旅行困难、不确定的法律地位、不稳定的就业、缺乏教育和医疗保健有关。我们没有发现新的漏洞，但我们发现，在某些情况下，这些漏洞的程度可能被低估，甚至对研究人员隐瞒。尽管有这些挑战，人们在日常生活中表现出了主动性，在这方面往往受到家庭成员的激励和支持。大多数被认为的研究好处与医疗保健和获得知识有关，而参加后续访问对一些人来说可能是一种负担。我们在文化和社会经济多元化背景下进行研究的方法应该更多地回应参与者在日常生活中所表现出的特定脆弱性和能力，而不是将脆弱性归因于预先定义的“弱势群体”的成员资格。研究人员需要意识到并对参与者在当地面临的挑战做出反应，以便将参与研究的负担降至最低，同时允许参与者从研究中受益。
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’ daily vulnerability and agency, and how these interact with participants’ research experiences in their own words. Researchers’ views and responses were also explored. 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. 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. Our approach to research in culturally and socioeconomically diverse settings should be more responsive to participants’ specific vulnerabilities and abilities evidenced in their daily life, rather than attributing vulnerability on the basis of membership of pre-defined ‘vulnerable groups’. 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.
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