Mahidol Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand.
Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine, University of Oxford, Oxford, United Kingdom.
PLoS One. 2023 Jan 25;18(1):e0280056. doi: 10.1371/journal.pone.0280056. eCollection 2023.
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.
研究人员有责任保护所有参与者，尤其是易受伤害的参与者，使其免受伤害。易受伤害性越来越被认为是特定于情境的，但对于不同文化背景下研究参与者的脆弱性和能动性，目前可提供的指导有限。本研究旨在从参与者自己的角度探索研究参与者的日常脆弱性和能动性，以及这些因素如何与他们的研究经历相互作用。本研究还探讨了研究人员的观点和反应。
本研究围绕泰国北部的两项恙虫病研究进行了一项定性研究。对 42 名研究参与者、他们的家人、研究人员和主要知情人进行了 42 次半结构化访谈，并对访谈内容进行了主题分析。
大多数研究参与者属于山地部落少数民族群体。常见的挑战与泰语语言障碍、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。我们没有发现新的脆弱性，但我们发现，在某些情况下，这些脆弱性的程度可能被低估，甚至被研究人员隐瞒。尽管面临这些挑战，人们在日常生活中表现出能动性，他们的家庭成员通常会给予他们支持和激励。大多数人认为研究的好处与医疗保健和知识获取有关，而对一些人来说，参加随访可能是一种负担。
我们在文化和社会经济多样化的背景下进行研究的方法，应该更加关注参与者在日常生活中表现出的特定脆弱性和能力，而不是根据预先定义的“弱势群体”成员来归因于脆弱性。研究人员需要意识到参与者在当地面临的挑战，并对此做出回应，以尽量减少研究参与带来的负担，同时让参与者从研究中受益。
