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

Abstract

Background 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. Methods 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. Results 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. Conclusions 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.

The challenges and potential solutions of achieving meaningful consent amongst research participants in northern Thailand: a qualitative study

“…All interviews were recorded, transcribed verbatim and translated into English as required. Interview guides [ 6 ], were created and piloted for each respondent group. In relation to the findings reported in this manuscript, Group 1 respondents were asked about their experiences of participating in the clinical studies, including their recruitment, consent and understanding of the research.…”

“…Without Thai citizenship, hill tribe members are not entitled to free healthcare, cannot own land and have restricted mobility [ 3 – 5 ]. They may have less access to education and limited employment opportunities with many working in daily labour jobs or agriculture [ 3 – 6 ]. Other vulnerabilities include social and geographical isolation, poverty and Thai language barriers [ 3 , 4 , 6 , 7 ].…”

“…They may have less access to education and limited employment opportunities with many working in daily labour jobs or agriculture [ 3 – 6 ]. Other vulnerabilities include social and geographical isolation, poverty and Thai language barriers [ 3 , 4 , 6 , 7 ]. All of these challenges can affect hill tribe members’ ability to access healthcare, which can result in poorer health outcomes and measures such as vaccination coverage [ 7 , 8 ].…”

“…In a previous paper we have described how challenges in daily living, faced by hill tribe members, can impact their experiences of taking part in research, including their perceived benefits, burdens and hidden burdens of participation [ 6 ]. In this analysis, we examine the specific challenges around consent to help inform improvements in more supportive engagement of hill tribes in health research.…”

“…It is a bacterial infection, transmitted through the bite of infected mites which are commonly found in rural areas placing those living and working there at increased risk [ 23 , 24 ]. Descriptions of the clinical studies are provided in Table 1 [ 6 ]. Of the two studies we looked at, one is a randomised controlled trial (RCT) evaluating the optimum treatment for scrub typhus.…”