Online research with vulnerable populations
By Janet Salmons, Ph.D.
Dr. Salmons is the author of Doing Qualitative Research Online, and Gather Your Data Online. Use the code COMMUNIT24 for 25% off through December 31, 2024 if you purchase research books from Sage.
Do you have concerns about how to carry out data collection with vulnerable populations online?
Some kinds of online research depend on responses from human participants, including qualitative interviews and focus groups, or quantitative surveys and experiments. Questions about online research with vulnerable people include:
How can we build rapport and trust with participants?
Is it more difficult for vulnerable people to feel safe when participating remotely?
What extra safeguarding should be considered when collecting data remotely about sensitive issues, such as interviews about participants’ mental health?
What does it mean to be vulnerable?
In the book Researching the Vulnerable Liamputtong draws on multiple definitions:
Silva (1995: 15) suggests that a vulnerable person is an individual who experiences ‘diminished autonomy due to physiological/psychological factors or status inequalities’. Based on Silva's definition, Moore and Miller (1999: 1034) contend that vulnerable individuals are people who ‘lack the ability to make personal life choices, to make personal decisions, to maintain independence, and to self-determine’. Therefore, vulnerable individuals may ‘experience real or potential harm and require special safeguards to ensure that their welfare and rights are protected’.
Aldridge (2022) points out the challenges involved with defining vulnerability:
it is perhaps more helpful to understand vulnerability as a mutable concept, as well as a condition or circumstance to which people can become susceptible at any given time, depending on their circumstances and needs, which may be individual, unique, or occur as a result of structural or systemic influences. … It is also the case that self-perceptions of vulnerability may not always accord with those of others or align with external identifiers or classifications.
Labeling individuals or groups of people is risky. Here, we do so not in a derogatory manner, but with the intention to be inclusive. We are looking for the most respectful way to proceed with a research project. Indeed, without such understanding , important voices will be left out. As Aldridge (2022) points out, “their unique insight, perspectives, and contributions to knowledge and understanding will be overlooked.”
Online research with vulnerable people.
Aldridge (2022) suggests that we understand the nature of the particular vulnerability when we choose the types (and appropriateness) of methods used in research. Given their advice that methods “should be flexible and, where possible, ‘bespoke,’ that is, designed with the needs of vulnerable participants in mind,” online research has some advantages. Participants can complete interviews or surveys from their own homes or other comfortable locations.
In Qualitative Online Interviews (2015) and Doing Qualitative Research Online (2022), I suggested that when working with vulnerable populations, privacy and trust are essential. Allow extra time to cultivate rapport and trust. Select digital communications tools that the participant finds comfortable-- and respect their choices about whether they prefer to use a webcam or audio, versus a written form like a questionnaire or email exchange.
Another option is to partner with agencies or centers that offer services to the target population. This means going beyond simply contacting a gatekeeper. Such partners might be actively involved with recruitment. They might set up a computer with a survey or log into a videoconference link, so the participant simply comes into the designated space and interacts with the researcher, without the need for organizational or technical skills. This collection of open access articles might offer some approaches you can adapt, depending on the nature of your study and the kinds of participants you hope to engage.
Research Articles
Cadet-Taïrou, A., Reynaud-Maurupt, C., Costes, J.-M., & Palle, C. (2010). Quantitative Surveys in Hard-to-Reach Populations: The Experience of the ‘Observatoire Français Des Drogues Et Des Toxicomanies.’ Methodological Innovations Online, 5(2), 76–92. https://doi.org/10.4256/mio.2010.0020
Abstract. This article presents a research device (drawn up by the ‘Observatoire français des drogues et des toxicomanies' or OFDT) for exploring drug consumption practices among ‘hard-to-reach users’. The OFDT's aim is to put forward a coherent and precise understanding of phenomena relating to drug use and to monitor developments from a national perspective, despite regional differences. The scope of observation focusses on the primary areas of drug use in France. The analysis over time of quantitative and qualitative data also made it possible to divide up the theoretical and heterogeneous unit formed by drug users (DUs) in terms of population types and sub-populations. They have different characteristics and engage in different practices, which do not always develop in the same way. Sometimes they are geographically unstable. The OFDT's experience of probability studies on DUs or populations with a high prevalence of drug use is applied in a ‘capture-recapture’ study that aims at estimating the prevalence of problematic drug use in six French cities and a quantitative survey based on a sampling plan with an ethnographically based approach in party environments with a focus on electronic music. These complex sampling studies prove indispensable, in particular in measuring the prevalence of drug use in populations not exclusively made up of drug users. However, we believe that, on their own, they cannot measure a phenomenon or monitor its developments since there are several sources of bias associated with sampling and the collection of data in surveys on hard-to-reach populations. We believe that comparing their results not only with the quantitative data from other sources, in particular the time series collected from users of centres for DUs but also with ethnographic data is indispensable in order to monitor these trends.
De Vecchi, N., Kenny, A., Dickson-Swift, V., & Kidd, S. (2017). Exploring the Process of Digital Storytelling in Mental Health Research: A Process Evaluation of Consumer and Clinician Experiences. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406917729291
Abstract. Digital storytelling is an art-based research method that has potential to engage mental health consumers and clinicians in dialogue about their lived experiences. However, few studies have examined the process of digital storytelling and people’s perspectives about making digital stories. In this article, a process evaluation framework is used to explore two digital storytelling workshops conducted with mental health consumers and clinicians. Project planning and implementation documents were collated, and interviews conducted with workshop participants thematically analyzed. Data were combined with facilitator reflections and are reported using a process evaluation framework. Findings indicate that the digital storytelling process is a useful research method that can be used to create a space where power differentials between consumers and clinicians are made visible and shared dialogue can develop. Recommendations from the study include the importance of employing skilled consumer and clinician support personnel to guide the process of participation and negotiate ethical tensions to ensure participant safety.
Dittmer, C., & Lorenz, D. (2018). Research in the Context of Vulnerability and Extreme Suffering—Ethical Issues of Social Science Disaster Research. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 19(3). doi:http://dx.doi.org/10.17169/fqs-19.3.3116
Abstract. In this article we discuss ethical questions of social science disaster research. We assume that disaster research has to confront ethical issues in a special way, since its main field of research is often extreme suffering and vulnerability. Because such studies should also contribute to alleviate this suffering and the vulnerability of the people affected, they have to be more of an applied and less of a theoretical nature. Based on the figural depiction of the heterogeneity of the field, ethical questions of social science disaster research are presented and contrasted with standardized ethical research principles, institutional review boards and guidelines in the US and Germany. In this contribution, we discuss the dual imperative with the informed consent as well as the principle do-no-harm and we critically identify underlying aporias. Based on Judith BUTLER's reflections on ethical violence and fundamental sociological reflections on the structure of societies, we propose taking a critical look at standardizations and call for a reciprocal ethic of vulnerability that can provide a foundation for research on disasters beyond all standardization.
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.
Gampell, A. V., Gaillard, J., & Parsons, M. (2019). On the use of participatory methodologies for video game research: Exploring disaster risk reduction in video games. Methodological Innovations. https://doi.org/10.1177/2059799119884277
Abstract. Video game scholars examining the shortcomings of previous video game research reference the need for new and innovative methodologies. Existing video game research seemingly inhibits organic learning experiences by setting specific research targets or providing players with gameplay instructions, hence utilising methodological approaches that study the learning process from the outside. With the increasing popularity of both serious and mainstream disaster video games, a necessity exists for innovative research to explore how video games can be used as learning tools. Based upon the researchers’ own enquiry, this article demonstrates the potential use, benefits and challenges of participatory methodologies for the conduct of video game research. This article pushes back upon traditional video game research methods, reviewing the methodological approaches of existing video game literature and demonstrates how participatory methodologies are currently being used for disaster video game research. An examination of participatory methodologies, being used in disaster video game research, reviews the strengths and challenges of each research approach. Rationalising the potential of participatory methodologies, in the context of constructivist learning theory and active participation, to foster the learning process and explore learning from the inside. As such this article provides an innovative methodological framework, which can be used as a template when considering future video game research.
Karadzhov, D. (2021). Expanding the methodological repertoire of participatory research into homelessness: The utility of the mobile phone diary. Qualitative Social Work, 20(3), 813-831. https://doi.org/10.1177/1473325020913904
Abstract. Participatory research methodologies have expanded the opportunities for critical, emancipatory and democratic health and social work research. However, their practical application in research with vulnerable participants has historically been challenging due to ethical, practical and theoretical concerns. Individuals who are homeless are typically seen as ‘hard-to-reach’, transient, ‘hidden’ and even chaotic participant populations. Unsurprisingly, examples of the use of innovative participatory research techniques with those groups have been relatively scarce. This paper aimed to address this gap by discussing the application of one such technique – the mobile phone diary in research with multiply disadvantaged homeless adults. Diary methods are situated within the qualitative research on health, illness and social marginality, and the enhanced capabilities of the mobile phone diary are highlighted. The author illustrates the application of the mobile phone diary in his participatory research on the everyday life narratives of adults with serious mental illness (SMI) who were homeless. The process of designing the mobile phone diary is detailed. Following this, participant testimonies of their use of the mobile phone diary are presented. They demonstrate the participatory and inclusive nature, as well as the cathartic and empowering potential, of this technique. The methodological contributions and challenges and the theoretical generativity of the mobile phone diary method are discussed. The mobile phone diary is a feasible approach for eliciting evocative, contextualised and nuanced accounts of the lived experience of homelessness, social isolation, coping and recovery.
Kaufmann, M., & Tzanetakis, M. (2020). Doing Internet research with hard-to-reach communities: methodological reflections on gaining meaningful access. Qualitative Research. Open access here.
Abstract. This article contributes to scholarship on digital sociology by addressing the methodological challenge of gaining access to hard-to-reach online communities. We use assemblage theory to argue how collaborative efforts of human participants, digital technologies, techniques, authorities, cultural codes and the human researcher co-determine aspects of gaining access to online subjects. In particular, we analyse how credibility and reflexivity are assembled in an online research context. This is exemplified by our own experiences of researching hackers that dispute surveillance and the social embeddedness of darknet drug market users. In this article, we demonstrate the utility of an assemblage perspective for understanding the complexities involved in negotiating access to hard-to-reach communities in digital spaces.
Legewie, N., & Nassauer, A. (2018). YouTube, Google, Facebook: 21st Century Online Video Research and Research Ethics. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 19(3). doi:http://dx.doi.org/10.17169/fqs-19.3.3130
Abstract. Since the early 2000s, the proliferation of cameras in devices such as mobile phones, closed-circuit television (CCTV), or body cameras has led to a sharp increase in video recordings of human interaction and behavior. Through websites that employ user-generated content (e.g., YouTube) and live streaming sites (e.g., GeoCam), access to such videos virtually is at the fingertips of social science researchers. Online video data offer great potential for social science research to study an array of human interaction and behavior, but they also raise ethical questions to which existing guidelines and publications only provide partial answers. In our article we address this gap, drawing on existing ethical discussions and applying them to the use of online video data. We examine five areas in which online video research raises specific questions or promises unique potentials: informed consent, analytic opportunities, privacy, transparency, and minimizing harm to participants. We discuss their interplay and how these areas can inform practitioners, reviewers, and interested readers of online video studies when evaluating the ethical standing of a study. With this study, we contribute to an informed and transparent discussion about ethics in online video research.
McDermott, E., & Roen, K. (2012). Youth on the Virtual Edge: Researching Marginalized Sexualities and Genders Online. Qualitative Health Research, 22(4), 560–570. https://doi.org/10.1177/1049732311425052 (Note, this article is not open access.)
Abstract. Research shows clear links between lesbian, gay, bisexual, and transgender (LGBT) youth and deliberate self-harm (DSH), but there is a lack of research investigating the social context of young LGBT people’s lives and helping to explain the higher DSH risk. In this article, we report on a small-scale methodological study intended to test the feasibility of online qualitative interviews for investigating young people, sexual and gender identity, and emotional distress. There are many methodological dilemmas arising from researching such sensitive issues with marginalized groups. The study reported here was designed to examine (a) sampling diversity in terms of sexuality, gender identities, and class; and (b) the type of data produced. We found that a virtual methodology was effective in recruiting young LGBT participants who might otherwise not take part in research. Online interviewing successfully produced in-depth, “immediate” data that potentially gave access to insights that might not emerge through face-to face interviews.
Schmid, E., Garrels, V., & Skåland, B. (2024). The continuum of rapport: Ethical tensions in qualitative interviews with vulnerable participants. Qualitative Research, 0(0). https://doi.org/10.1177/14687941231224600
Abstract. Rapport is generally considered an essential component of successful interviewing, where participants are willing to share and divulge information. The present paper contributes to the research on rapport in qualitative interviewing by exploring ethical tensions that researchers may experience when conducting qualitative interviews with vulnerable participants. The analysis is based on semi-structured interviews with nine researchers from various fields within social sciences who had extensive experience in doing research with diverse vulnerable groups. We identified six ethical tensions related to building rapport with people in vulnerable life situations that cover issues concerning both too little and too much rapport. Findings illustrate that rapport as the ‘ideal’ for the researcher-participant relationship may need nuancing. The study concludes that researchers undertaking qualitative interviews on sensitive topics need to have a conscious awareness of ethical tensions that may arise when building rapport with their participants
Kirsten V. Smith, Graham R. Thew & Belinda Graham (2018) Conducting ethical internet-based research with vulnerable populations: a qualitative study of bereaved participants’ experiences of online questionnaires, European Journal of Psychotraumatology, 9:sup1, DOI: 10.1080/20008198.2018.1506231
Bereavement can be considered a potentially traumatic experience, and concerns have been raised about conducting grief research responsibly online. Given that online research introduces new methodological opportunities and challenges, we aimed to develop a greater understanding of how bereaved individuals experience participation in online research. One day after participation in an online grief study, 876 participants, bereaved on average for 40 months, received a ‘check-in’ email to support well-being and offer further contact if needed. Although not explicitly asked to respond if no help was needed, 300 participants sent email replies, with only six requesting support. These responses were analysed qualitatively using content analysis.
References
Aldridge, J., (2022). Vulnerable Informants, In P. Atkinson, S. Delamont, A. Cernat, J.W. Sakshaug, & R.A. Williams (Eds.), SAGE Research Methods Foundations. https://doi.org/10.4135/9781526421036770667
Liamputtong, P. (2007). The sensitive researcher: introduction to researching vulnerable people. In Researching the Vulnerable (pp. 1-22). SAGE Publications, Ltd, https://doi.org/10.4135/9781849209861
Sage Research Methods Community posts about online research
Informed consent is the term given to the agreement between researcher and participant. In this post Janet Salmons offers suggestions about the intersections of the Internet communications, ethics and participants.