Research with Vulnerable Participants

The overarching theme for Methodspace in 2022 is Research Relevance. In these troubled times, what research matters? What problems should we study, how, why? Sometimes the most urgent problems are highly sensitive and those experiencing them are vulnerable. This collection of open-access articles explores qualitative studies with vulnerable individuals and communities.

As Anderson and Corneli explain in their 2018 book, 100 questions (and answers) about research ethics:

Some people may be particularly vulnerable to exploitation and harm in the context of research. Most researchers, scholars, and institutional review board (IRB) members agree that special efforts should be made to protect vulnerable individuals. While the US federal research regulations address some specific populations, there is no precise formula for determining who is vulnerable, and differences of opinion exist regarding appropriate protections.

The Belmont Report (1979) affirms a requirement to protect “persons with diminished autonomy,” referring to individuals who do not have the capacity for self-determination due to either young age, illness or disability that affects comprehension, or circumstances that may restrict their ability to voluntarily refuse to participate in research. Vulnerabilities may affect a person’s ability to adequately judge the potential risks involved in participation and/or to refuse participation. However, considered broadly, vulnerability in research is about more than just capacity for self-determination.

The US federal research regulations identify pregnant women, human fetuses, and neonates; prisoners; and children as particularly vulnerable. Extra protections for these populations are delineated in 45 C.F.R. § 46, Subpart B (Pregnant Women, Human Fetuses and Neonates), Subpart C (Prisoners), and Subpart D (Children). Beyond these subparts, the federal regulations also direct IRBs, during the review of a research protocol, to include individuals who are knowledgeable about and have experience in working with the proposed study population; consider the special problems of research that may be involved; and include additional safeguards to protect participants who are “vulnerable to coercion or undue influence, such as children, prisoners, individuals with impaired decision-making capacity, or economically or educationally disadvantaged persons” (45 C.F.R. § 46.107(a)). Based on other research guidelines and ethics scholarship, others who may be considered vulnerable in research might include individuals

• who are patients with limited options for treatment or cure, such as patients with terminal cancer;

• who have experienced traumatic events, such as rape survivors and refugees;

• who engage in socially stigmatized or illegal behavior or are members of historically and/or politically marginalized groups, such as drug users or members of LGBTQ communities; and

• whom the researcher has disproportionate power over, such as students or employees.

This list is certainly not exhaustive; and, as we learn more about human life and behavior, new vulnerabilities that affect research participation may emerge.

Anderson, E. & Corneli, A. (2018). What kinds of participants are considered vulnerable in research, and what are some ways to protect vulnerable participants?. In 100 questions (and answers) about research ethics (pp. 50-53). SAGE Publications, Inc, https://dx.doi.org/10.4135/9781506348681

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Altman, M. R., Kim, J., Busse, M., & Kantrowitz-Gordon, I. (2020). Community-Led Research Priority Setting for Highly Vulnerable Communities: Adaptation of the Research Prioritization by Affected Communities Protocol. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406920957508

Abstract. While community engagement can occur at all levels of research development, implementation, and dissemination, there is a great need for participation from those with lived experience in the development of research priorities to be used by stakeholders in research, funding, and policy. The Research Prioritization by Affected Communities (RPAC) protocol has successfully developed community-driven priorities for those at risk for preterm birth, but the 2-day focus group methodology may not be suitable for all vulnerable communities. For the purposes of a larger study supporting pregnant and parenting individuals with opioid use disorder (OUD) in research prioritization, we adapted the RPAC protocol to meet the needs of this highly stigmatized community. This adaptation made it possible for those who may not have been able to attend two separate sessions to successfully engage in this participatory process and produce a completed set of priorities by the end of 1 day. The objective of this article is to validate the adapted protocol for prioritizing research and service delivery needs with vulnerable and stigmatized communities.

Bragg, B. (2022). (De)constructing Refugee Vulnerability: Overcoming Institutional Barriers to Ethnographic Research With Refugee Communities://doi.org/10.1177/08912416211031645

Abstract. Drawn from 18-months of ethnographic research with resettled refugees living in a mini-enclave in one Canadian city, this article explores what ethnography offers research with resettled refugees. By interrogating the process of securing ethics approval from the Research Ethics Board (REB), I examine the figure of the refugee at the heart of liberal projects aimed at “saving” refugees. I demonstrate that the REB’s reluctance to approve this project stemmed not only from conventional bureaucratic overreach related to ethnographic research but also from an unexamined and problematic idea of what it means to be a refugee. I discuss the gaps between institutionally perceived forms of vulnerability and the actual vulnerabilities that shape life for refugee women. I argue that vulnerability and risk must be understood as contextual and contingent, rather than inherent. Second, I explore the implications of positioning refugees as always already vulnerable on research practice and the value that ethnography offers for overcoming these blind spots.

Čanigová, K. (2022). “Will You Work with Me?”: Visual Worksheets as Facilitators of Inclusive, Collaborative, and Empowering Interviews with Vulnerable Populations. International Journal of Qualitative Methods. https://doi.org/10.1177/16094069211069444

Abstract. Vulnerable populations are often excluded from research interviews, as they are considered too difficult to reach. If included, they often face barriers that obstruct active participation and collaboration among participants, such as low literacy levels, a lack of confidence, and mistrust. Based on a body of texts that deal with the inclusion of vulnerable participants, I have developed a methodology aimed at promoting substantive social impact on researched communities. I propose visually based worksheets as a tool to give voice to often silenced individuals, to contribute to social change and justice. In this article, I explore the possibilities of visual methods to facilitate interviews and encourage greater levels of participation. With the use of selected visual methods—image elicitation, drawings, diagrams, and card-based games incorporated into graphic worksheets—I demonstrate how to address low levels of participant cooperation and understanding of interview tasks. This article is based on extensive fieldwork in the form of interviews with people living in poverty in the Czech Republic. Through the example of five of the 17 worksheets I designed, I illustrate the motivations and thought processes that stand behind their creation. The worksheets are aimed at the inclusion of vulnerable populations and bringing their voices into the research while focusing on crucial topics such as housing history, debts and obligations, debt repayment, and financial distress.

Dow, B. S., & Boylan, B. M. (2020). Learning From Vulnerable Populations: Methodological Implications of Interviewing Individuals With Fetal Alcohol Spectrum Disorder. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406920931254

Abstract. Scholars face methodological challenges when conducting research about vulnerable populations, such as individuals living with fetal alcohol spectrum disorder (FASD). They often struggle to identify, sample, and interview individuals in order to learn about their life experiences and perspectives. Although some scholarship provides methodological guidance on researching vulnerable populations, scant literature addresses accessing and collecting perceptions from individuals with FASD. Based on work with adults with FASD, we offer procedures for sampling and interviewing. Our suggestions include working with agencies and gatekeepers involved with the population; ensuring voluntary and informed consent throughout the interview process; establishing rapport with interviewees and providing a comfortable interview environment for them; and adjusting interview questions according to individuals’ cognitive abilities. By following these procedures, researchers can learn from these individuals while reducing the risk of harm to them.

Ellard-Gray, A., Jeffrey, N. K., Choubak, M., & Crann, S. E. (2015). Finding the Hidden Participant: Solutions for Recruiting Hidden, Hard-to-Reach, and Vulnerable Populations. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406915621420

Abstract. Certain social groups are often difficult for researchers to access because of their social or physical location, vulnerability, or otherwise hidden nature. This unique review article based on both the small body of relevant literature and our own experiences as researchers is meant as a guide for those seeking to include hard-to-reach, hidden, and vulnerable populations in research. We make recommendations for research process starting from early stages of study design to dissemination of study results. Topics covered include participant mistrust of the research process; social, psychological, and physical risks to participation; participant resource constraints; and challenges inherent in nonprobability sampling, snowball sampling, and derived rapport. This article offers broadly accessible solutions for qualitative researchers across social science disciplines attempting to research a variety of different populations.

Krause, J. (2021). The ethics of ethnographic methods in conflict zones. Journal of Peace Research, 58(3), 329–341. https://doi.org/10.1177/0022343320971021

Abstract. This article examines the ethics of using ethnographic methods in contemporary conflict zones. Ethnographic research is an embodied research practice of immersion within a field site whereby researchers use ethnographic sensibility to study how people make sense of their world. Feminist, conflict and peacebuilding scholars who research vulnerable populations and local dynamics especially value ethnographic approaches for their emphasis on contextual understanding, human agency, egalitarian research relationships and researcher empathy. While immersion leads to knowledge that can hardly be replaced by using more formal approaches, it also elicits ethical dilemmas. These arise not only from the specific research context but also from who the researcher is and how they may navigate violent and often misogynous settings. I argue that many dilemmas may and perhaps should not be overcome by researcher skill and perseverance. Instead, ethical challenges may lead researchers to adopt limited and/or uneven immersion in their field site, not as failed or flawed ethnography but as an ethical research strategy that incorporates ethnographic sensibility to a varying extent. Examining why researchers may opt for limited and uneven immersion is important because in conflict research, stereotypes of the intrepid (male) researcher with a neutral gaze still tend to mute open discussions of how gender, race, ethnicity, nationality, class and other background factors inevitably shape immersion. This article seeks to contribute to creating discursive space for these conversations, which are vital for researchers to analyse, reflect and write from the position of a ‘vulnerable observer’ and incorporate greater transparency in the discussion of research findings.

Mertens, D. M. (2021). Transformative Research Methods to Increase Social Impact for Vulnerable Groups and Cultural Minorities. International Journal of Qualitative Methods. https://doi.org/10.1177/16094069211051563

Abstract. A transformative lens applied to research increases impact in the form of providing support for actions that increase social, economic, and environmental justice. Researchers who accept the role of supporting transformative change can enhance their abilities to do so through the use of a transformative lens that informs the design, implementation, and use of their research. The transformative ethical assumption informs methodological choices in that the research design consciously focuses on addressing inequities and providing a platform for transformative change. Engagement with members of marginalized and vulnerable communities is critical and needs to be approached in ways that value the knowledge they bring and addresses power inequities. Methodologies that are commensurate with a transformative approach include the use of mixed methods, viewing the role of the researcher as a social change agent, learning from social activism, and employing specific strategies for culturally responsive inclusion, addressing power differences, and planning for sustainability. Examples of research that increased social impact illustrate how these methodologies have been applied: social activism strategies to address structural racism for youth and for Black men in prison; culturally responsive strategies in research affecting members of sexual minorities in countries in which same-sex behaviors are prohibited by law and for incarcerated women; power inequities in research for people living in high poverty, including children in Nicaragua and Indigenous South Africans; and planning for sustainability with Indigenous youth in Canada and farmers in South Africa. The transformative approach to research asks researchers to critically examine their role in sustaining an oppressive status quo and to address the challenges of supporting increased justice.

Pacheco-Vega, R., & Parizeau, K. (2018). Doubly Engaged Ethnography: Opportunities and Challenges When Working With Vulnerable Communities. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406918790653

Abstract. Understanding the unique challenges facing vulnerable communities necessitates a scholarly approach that is profoundly embedded in the ethnographic tradition. Undertaking ethnographies of communities and populations facing huge degrees of inequality and abject poverty asks of the researcher to be able to think hard about issues of positionality (what are our multiple subjectivities as insider/outsider, knowledge holder/learner, and so on when interacting with vulnerable subjects, and how does this influence the research?), issues of engagement versus exploitation (how can we meaningfully incentivize participation in our studies without being coercive/extractive, and can we expect vulnerable subjects to become deeply in research design/data collection, and so on when they are so overburdened already?), and representation (what are the ethics of representing violence, racism, and sexism as expressed by vulnerable respondents? What about the pictures we take and the stories we tell?). Through the discussion of our research on the behavioral patterns, socialization strategies, and garbage processing methods of informal waste pickers in Argentina and Mexico, we ask ourselves, and through this exercise, seek to shed light on the broader questions of how can we engage in ethnographies of vulnerable communities while maintaining a sense of objectivity and protecting our informants? Rather than attempting to provide a definite answer, we provide a starting point for scholars of resource governance interested in using ethnographic methods for their research. We highlight the challenges we’ve faced in studying cartoneros in Buenos Aires (Argentina) and pepenadores in León (Mexico) and engage in a self-reflective discussion of what can be learned from our struggle to provide meaningful, engaged scholarship while retaining and ensuring respect and care for the communities we study.

Thummapol, O., Park, T., Jackson, M., & Barton, S. (2019). Methodological Challenges Faced in Doing Research With Vulnerable Women: Reflections From Fieldwork Experiences. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406919843022

Abstract. Methodological challenges of qualitative research involving people considered vulnerable are widely prevalent, for which many novice researchers are not well equipped or prepared for. This places great physical and emotional demands on the researchers. However, a discussion to bring to light the issues related to the researchers’ experiences and practical concerns in the field remains largely invisible in the literature. This article presents the reflective accounts of a doctoral researcher’s fieldwork experience, particularly in relation to the methodological challenges encountered in carrying out research with vulnerable women in rural and northern Thailand. Four of these challenges pertain to selecting a field site and acquiring access, recruiting and building trust, maintaining privacy and confidentiality, and being vulnerable as a researcher. Suggestions from the literature and practical strategies the researcher employed to deal with such challenges and real dilemmas are discussed. This article calls for more formal safeguards during the research process and suggests that researchers reflect upon their experiences and emotions in undertaking a field research, making the accounts of their research journey heard and beneficial to other novice and/or experienced researchers.

Winfield, T. P. (2022). Vulnerable Research: Competencies for Trauma and Justice-Informed Ethnography. Journal of Contemporary Ethnography, 51(2), 135–170. https://doi.org/10.1177/08912416211017254

Abstract. Ethnographers often work with individuals who are physically, psychologically, spiritually, and/or structurally vulnerable. The article introduces six competencies for ethnographers to be trained in and assessed on to ensure their research is trauma and justice-informed. The author builds from her own research experiences, current methodological approaches to qualitative inquiry, and an integration of sociology and psychology to detail these competencies and provide tools for training and assessment. The competencies include the following: (a) self-awareness; (b) participant-centered approach; (c) recognition of social location; (d) attention to trauma; (e) knowledge of professional limits; and (f) effective boundaries and self-care. The six competencies and Action-reflection course outlined in the article are designed to support researchers in attending to how their personal histories, embodied states, and power dynamics shape the research endeavor, as well as, learn skills for healthy boundary-keeping, risk assessment, and steps to minimize participant (re)traumatization. Although these competencies are essential for work with disempowered populations, they are beneficial for all qualitative researchers to ensure both personal and participant safety.

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