Dataset Information

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

ABSTRACT:

Background

Achieving meaningful consent can be challenging, particularly in contexts of diminished literacy, yet is a vital part of participant protection in global health research.

Method

We explored the challenges and potential solutions of achieving meaningful consent through a qualitative study in a predominantly hill tribe ethnic minority population in northern Thailand, a culturally distinctive population with low literacy. Semi-structured interviews were conducted with 37 respondents who had participated in scrub typhus clinical research, their family members, researchers and other key informants. A thematic analysis was conducted.

Results

Our analysis identified four interrelated themes surrounding participants' ability to give consent: varying degrees of research understanding, limitations of using informal translators, issues impacting decisions to join research, and voluntariness of consent. Suggestions for achieving more meaningful consent included the use of formal translators and community engagement with research populations.

Conclusions

Participant's agency in decision making to join research should be supported, but research information needs to be communicated to potential participants in a way that they can understand. We found that improved understanding about the study and its potential benefits and harms goes beyond literacy or translation and requires attention to social and cultural factors.

SUBMITTER: Greer RC

PROVIDER: S-EPMC10729394 | biostudies-literature | 2023 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Greer Rachel C RC Kanthawang Nipaphan N Roest Jennifer J Perrone Carlo C Wangrangsimakul Tri T Parker Michael M Kelley Maureen M Cheah Phaik Yeong PY

BMC medical ethics 20231219 1

<h4>Background</h4>Achieving meaningful consent can be challenging, particularly in contexts of diminished literacy, yet is a vital part of participant protection in global health research.<h4>Method</h4>We explored the challenges and potential solutions of achieving meaningful consent through a qualitative study in a predominantly hill tribe ethnic minority population in northern Thailand, a culturally distinctive population with low literacy. Semi-structured interviews were conducted with 37 r ...[more]

PMID: 38115021

Similar Datasets

Project description:BackgroundResearchers 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.MethodsA 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.ResultsThe 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.ConclusionsOur 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.

Project description:BackgroundCanadians are increasingly gaining web-based access to digital health services, and they expect to access their data from these services through a central patient access channel. Implementing data sharing between these services will require patient trust that is fostered through meaningful consent and consent management. Understanding user consent requirements and information needs is necessary for developing a trustworthy and transparent consent management system.ObjectiveThe objective of this study is to explore consent management preferences and information needs to support meaningful consent.MethodsA secondary analysis of a national survey was conducted using a retrospective descriptive study design. The 2019 cross-sectional survey used a series of vignettes and consent scenarios to explore Canadians' privacy perspectives and preferences regarding consent management. Nonparametric tests and logistic regression analyses were conducted to identify the differences and associations between various factors.ResultsOf the 1017 total responses, 716 (70.4%) participants self-identified as potential users. Of the potential users, almost all (672/716, 93.8%) felt that the ability to control their data was important, whereas some (385/716, 53.8%) believed that an all or none control at the data source level was adequate. Most potential users preferred new data sources to be accessible by health care providers (546/716, 76.3%) and delegated parties (389/716, 54.3%) by default. Prior digital health use was associated with greater odds of granting default access when compared with no prior use, with the greatest odds of granting default access to digital health service providers (odds ratio 2.17, 95% CI 1.36-3.46). From a list of 9 information elements found in consent forms, potential users selected an average of 5.64 (SD 2.68) and 5.54 (SD 2.85) items to feel informed in consenting to data access by care partners and commercial digital health service providers, respectively. There was no significant difference in the number of items selected between the 2 scenarios (P>.05); however, there were significant differences (P<.05) in information types that were selected between the scenarios.ConclusionsA majority of survey participants reported that they would register and use a patient access channel and believed that the ability to control data access was important, especially as it pertains to access by those outside their care. These findings suggest that a broad all or none approach based on data source may be accepted; however, approximately one-fifth of potential users were unable to decide. Although vignettes were used to introduce the questions, this study showed that more context is required for potential users to make informed consent decisions. Understanding their information needs will be critical, as these needs vary with the use case, highlighting the importance of prioritizing and tailoring information to enable meaningful consent.

Project description:IntroductionPrevious studies suggest that young adults who vape nicotine experience difficulty when answering survey items assessing the quantity of vaping. The current study asked young adults who vape to provide suggestions for improving the scientific measurement of vaping.Aims and methodsWe conducted semi-structured qualitative interviews with 62 young adults who vape in Los Angeles, California between June 2018 and June 2019. We analyzed participants' responses to the following question: "What do you think is the best way for us to understand how much people vape?" using thematic content analysis.ResultsWe identified two major themes: (1) challenges stemming from differences between the way researchers query about vaping and how individuals self-monitor vaping frequency, and (2) insights for future measurement of vaping. Participants reported that challenges of accurately quantifying vaping were due to inherently hard-to-answer questions (eg, puffs per day), lack of awareness of or not actively monitoring consumption of vaping products, or because vaping behaviors vary considerably between and within individuals over time, making "on-average" questions challenging. Participants discussed ideas for improving survey measures that could accurately assess vaping quantity, including querying about the type of device used, and frequency of replenishment of nicotine solutions.ConclusionsExisting vaping behavior survey measures may not accurately capture the quantity of vaping as they differ from how (or if) participants track their own vaping consumption patterns. While continued research is needed to optimally refine survey measures on vaping consumption, future measures may better align with vapers' self-monitoring by including questions on device-type and replenishment frequency.ImplicationsThe present study provides insights regarding the variability that exists between vaping quantity measurements utilized by researchers and individuals who consume e-cigarettes. The qualitative data analyzed for this study support previous reports of difficulties faced by vapers when asked questions by researchers related to their vaping behavior. Furthermore, the present findings suggest the direction for the future development of accurate measurements of vaping frequency.

Dataset Information

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

Background

Method

Results

Conclusions

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets