Recruiting Hard-to-Reach or Vulnerable Participants

by Janet Salmons, Ph.D., Research Community Manager for SAGE Methodspace

---

What Kinds of Participants Are Considered Vulnerable in Research?

100 Questions (and Answers) About Research Ethics describes vulnerability in the research context:

Some people may be particularly vulnerable to exploitation and harm in the context of research. Most researchers, scholars, and institutional review board (IRB) [or ethics review board] members agree that special efforts should be made to protect vulnerable individuals.

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. Research activities that pose minimal risk to healthy adults may be riskier for children, individuals with certain physical or mental illnesses, or individuals engaged in illegal behavior. For example, it may cause more social harm if private information about a child’s sexual identity or behavior becomes known outside of research as compared with that of an adult. The topic of the research also matters. Individuals who use illegal drugs and participate in surveys about drug use are obviously at greater risk of harm from a breach of confidentiality than vegetarians who participate in surveys about fruit and vegetable intake.

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; andwhom 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.

Some scholars reject a categorical approach to vulnerability based on demographics (DuBois et al., 2012; Kipnis, 2001). That is, group membership should not automatically deem one to be vulnerable. Vulnerability is not something that resides within the person. Rather, vulnerability arises within particular situations. In reality, because of the inherent power differential between researchers and participants, any participant may be vulnerable to exploitation or to physical, psychological, social, or dignitary harm. The particular risks, benefits, and requirements of a given study also affect the potential vulnerability of participants and the requirement for additional protections. However, a categorical approach to vulnerability is still useful in that involvement of individuals generally considered vulnerable can alert novice researchers to the need for special considerations. (pp. 50-51)

Protection of vulnerable populations, or those who are vulnerable in particular situations, needs to begin with the first stage of the process: recruitment of participants. At the same time, the very reasons why someone might be considered vulnerable are reasons why typical approaches to recruitment might not work. This multidisciplinary collection of research articles offers examples and success strategies.

Anderson, E., & Corneli, A. (2018). What Kinds of Participants Are Considered Vulnerable in Research, and What Are Some Ways to Protect Vulnerable Participants?. SAGE Publications, Inc, https://doi.org/10.4135/9781506348681

---

Learn from these researchers’ efforts to recruit vulnerable and hard-to-reach participants

Bredal, A., Stefansen, K., & Bjørnholt, M. Why do people participate in research interviews? Participant orientations and ethical contracts in interviews with victims of interpersonal violence. Qualitative Research, 0(0), 14687941221138409. https://doi.org/10.1177/14687941221138409

Abstract. Researchers are increasingly interested in why people want to participate in qualitative interview studies, particularly what they hope to gain from participating. The present paper contributes to this research agenda by analysing the motivations of victims of interpersonal violence: a group that is considered ethically challenging to involve in research, given their history of being intruded upon. The analysis is based on 174 qualitative interviews from three separate studies: two on intimate partner violence and one on sexual assault. A key finding is that many victims welcome the opportunity to participate and often use the interviews for their own purposes. We identified three different ‘participant orientations’, or ways victims relate to the interview and the research, including ‘telling for oneself’, ‘telling for others’ and ‘telling for the researcher’. We discuss how these orientations imply different ethical contracts between the participant and researcher and their links to recruitment methods.

Eide, P., & Allen, C. B. (2005). Recruiting Transcultural Qualitative Research Participants: A Conceptual Model. International Journal of Qualitative Methods, 4(2), 44-56. https://doi.org/10.1177/160940690500400204

Abstract. Working with diverse populations poses many challenges to the qualitative researcher who is a member of the dominant culture. Traditional methods of recruitment and selection (such as flyers and advertisements) are often unproductive, leading to missed contributions from potential participants who were not recruited and researcher frustration. In this article, the authors explore recruitment issues related to the concept of personal knowing based on experiences with Aboriginal Hawai'ian and Micronesian populations, wherein knowing and being known are crucial to successful recruitment of participants. They present a conceptual model that incorporates key concepts of knowing the other, cultural context, and trust to guide other qualitative transcultural researchers. They also describe challenges, implications, and concrete suggestions for recruitment of participants.

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, 14(5), 1609406915621420. 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.

Garcia-Quiroga, M., & Agoglia, I. S. (2020). Too Vulnerable to Participate? Challenges for Meaningful Participation in Research With Children in Alternative Care and Adoption. International Journal of Qualitative Methods, 19, 1609406920958965. https://doi.org/10.1177/1609406920958965

Abstract. In recent years, a significant amount of research has been conducted with children from a rights perspective, especially concerning the right to be heard and participate. However, children living in alternative care and adoption have often been excluded from participating in research because they are viewed as vulnerable children who lack agency and also due to an adult-centric perspective of protection. In this article, we challenge this idea under the view that participation is a main component of protection, children are experts in their own experiences, and their views should be considered through participative research design and methods. Particular challenges that protection contexts impose for research are analyzed and several ways in which these challenges can be faced are outlined. We provide principles and examples that can be implemented to ensure that children who live in alternative care or adoption have the right as any child to be informed, be listened to, and have their views considered regarding topics that affect them.

Haines, D. (2017). Ethical considerations in qualitative case study research recruiting participants with profound intellectual disabilities. Research Ethics, 13(3-4), 219-232. https://doi.org/10.1177/1747016117711971

Abstract. Drawing on the author’s experience carrying out qualitative research in the field of occupational therapy with people with intellectual disabilities, this article explores ethical issues inherent in ethnographic and case study research, where study designs can evolve over time. Such qualitative methodologies can enable deep understanding of research topics, but detailed description of methods and of the range of potential experiences participants may have is necessary to ensure that they are fully informed and ethics committees satisfied. Thorough consideration is required of ethical issues related to topic relevance and design, recruitment, collection of data and portrayal of participants in the eventual case report. The article illustrates a way in which research of this type can be explained and justified, including how recruitment can be achieved of participants likely to lack capacity to consent to participation themselves.

Hansen, L. (2019). Motherhood muzzled: The challenges in recruiting mothers of preschool-aged children. Methodological Innovations, 12(3), 2059799119889576. https://doi.org/10.1177/2059799119889576

Abstract. This reflective process paper outlines the challenges encountered in trying to access mothers of preschool-aged children in a child-focused setting. Two recruitment approaches were implemented yielding eight respondents. Three key themes for recruitment challenges emerged at societal, service, and personal levels—no time, no money, and a lack of priority given to the well-being of mothers in a child-focused setting. This article also outlines the methodological rationale for the chosen approach and explores alternatives based on previous research into hard-to-reach and hidden populations. The data support questions as to the agency of mothers, and the validity of the voices we do hear from most—the vocal Internet minority. Through this study, questions arise as to the lack of importance placed on the well-being of mothers by early childhood services and mothers themselves, and how this may affect research, education, and service delivery.

Law, C. (2019). Men on the margins? Reflections on recruiting and engaging men in reproduction research. Methodological Innovations, 12(1), 2059799119829425. https://doi.org/10.1177/2059799119829425

Abstract. While social science research into reproduction is a vibrant and growing field of scholarly activity, the majority of research is conducted with women and focuses on women’s lives. Reproduction research which does focus on men tends to overlook aspects such as pre-conception desires for parenthood and planning. Scholars have argued for a greater inclusion of men in reproduction research, yet there is a paucity of methodological literature addressing how best to do so. This article reports methodological reflections from a qualitative study into men’s perceptions and intentions regarding the ‘right time’ to have children. It does this in reference to Critical Studies of Men and Masculinities – which foregrounds men as gendered beings and comprises the study of the gendered nature of men’s lives – as both a theoretical position influencing study conception and design and as an explanatory framework for enhancing understanding of the research encounter. The first part of the article describes the Critical Studies of Men and Masculinities–informed study conceptualisation and design, specifically the decisions to include unpartnered men in the sample and to address the absence of men in reproduction research in recruitment materials. It then goes on to discuss the most effective recruitment strategy employed, recruiting through informal gatekeepers, and to consider the consequences of this. The second part of the article presents data from the male participants pertaining to their stated motivations for participating, which relate to interest, helpfulness, and in response to perceived marginalisation, as well as their reflections on the interview encounter as enabling them to construct a narrative. It aims to extend knowledge and understanding regarding engaging men in reproduction research and to illustrate the utility of Critical Studies of Men and Masculinities for doing so, and in doing so to advance both reproduction research and discussions of Critical Studies of Men and Masculinities and methodology more broadly.

Pettinger, C., Letherby, G., Parsons, J. M., Withers, L., Cunningham, M., Whiteford, A., D’Aprano, G., Ayres, R., & Sutton, C. (2018). Employing participatory methods to engage an under-researched group: Opportunities and challenges. Methodological Innovations, 11(1), 2059799118769820. https://doi.org/10.1177/2059799118769820

Abstract. In this article, we report on our experience of working on an exploratory project where the primary objective was to involve homeless service users with food-based participatory qualitative approaches. The project FLM aimed to explore food experiences and behaviours in a sample of users of homelessness services in a south west UK coastal city, in order to create solutions to improve their wellbeing. A mixture of qualitative methods was used, including observations, photo-elicitation and focus group discussions. We aimed to be participatory and ‘creative’ in our approach and in our analysis. Here, we focus on detailing and critiquing our approach to the collection and analysis of data.

Stevenson, J., Keogh, P., Smith, J., & West, E. (2018). Reaching the Right People: Reflexive Practice to Support Effective Recruitment, Participation, and Engagement in Research With Communities Affected by Stigma. International Journal of Qualitative Methods, 17(1), 1609406918819376. https://doi.org/10.1177/1609406918819376

Abstract. Recruiting participants to qualitative studies is often a challenge—reaching the right people, and the right people choosing to participate, is a primary consideration for researchers. For research on HIV, as a condition which continues to be stigmatized, this can be magnified. However, being part of the HIV voluntary sector and occupying a role of “HIV advocate” can provide routes to overcome this challenge. Using the example of the researcher’s transition from voluntary sector worker to academic PhD researcher, this article explores how recruitment can be facilitated by utilizing personal and professional networks and how, in turn, this can present new challenges in reaching participants who are not “research regulars,” who are experienced in participating in qualitative research. It further explores reflexive methodologies as applied to participatory research on HIV and aging as it affects women in the UK and asks how the roles of “advocate” and “researcher” complement and challenge one another. Reflexive practice and an analysis of the researcher’s motives and how this impacts on recruitment, participation, and dissemination are considered. A three-part approach to reflexively engaging with participants’ questions is put forward. This provides a new perspective on participatory approaches in relation to research recruitment specifically.

Tchouankam, T., Estabrooks, P., Cloyd, A., Notice, M., Teel-Williams, M., Smolsky, A., Burnett, P., Alexis, G., Conley, T., Partridge, E., Hogan, P., Thorpe, R., & King, K. M. (2021). Recruiting Low-Income African American Men in Mental Health Research: A Community-Based Participatory Research Feasibility Study. American Journal of Men's Health, 15(3), 15579883211018418. https://doi.org/10.1177/15579883211018418

Abstract. African Americans (AAs) are 20% more likely to develop serious psychological distress compared to Whites but are less likely to use mental health services. The study objective was to evaluate the effectiveness of recruitment strategies to engage AA fathers in a mental health intervention. Using the community-based participatory research (CBPR) approach, a community-academic partnership (CAP) developed and implemented direct and indirect referral strategies to engage AA fathers in a mental health intervention. Direct referral strategies focused on community partner identification of potentially eligible participants, providing information about the study (i.e., study flyer), and referring potential participants to the study. Indirect referrals included posting flyers in local businesses frequented by AA men, radio advertisements, and social media posts from community organizations.

---

More Methodspace posts about research on sensitive issues