This is the second blog in this series and based on the first blog post, readers should have a better understanding of the nuances of vulnerable populations, we can examine barriers  to recruiting these populations and best practices for recruitment and ethical work.

Barriers to recruitment:

Barriers to the recruitment of vulnerable populations exist at both the researcher and participant levels. At the researcher level, common barriers include time constraints and multicultural differences. At the participant level, common barriers include distrust of research (or researchers), lack of confidentiality, fear of safety, schedule conflicts, finding childcare, lack of knowledge, language, cultural differences, and forgetting about or deprioritizing research in the face of other commitments and stresses of daily life (UyBico, Pavel, & Gross, 2007; Ellard-Gray, Jeffrey, Choubak, & Crann, 2015).

Minority or vulnerable groups pose access challenges especially when researchers use traditional sampling methods. Obstacles, like a group’s social or physical location, vulnerability, or otherwise hidden nature, can complicate recruitment methods. When a population is difficult to access, researchers typically describe them as hard to reach and/or hidden. One example of such populations is victims of interpersonal violence. Recruitment of interpersonal violence (IPV) survivors may be difficult because of factors related to social location, such as being restricted from communication with outsiders (e.g., researchers). IPV survivors are potentially at greater risk for harm if they identify their experiences through official means (e.g., law enforcement or other authority) since no record of their experience may exist if they do not report their abuse. Researchers can keep IPV data private and confidential by de-identifying the data or collecting no record of their identity on study materials.

Researchers have historically mistreated ethnic minorities, immigrants, and indigenous populations. As a result, these individuals may mistrust the research process due to breaches of confidentiality and a tendency to pathologize their behavior. Suspicious participants feel less willing to disclose their identities to researchers. Ethnic/immigrant minority groups are particularly concerned that the research findings may not benefit their community. Mistrust may also be compounded by intersectionality. For example, ethnic minorities living in rural communities may be hard to reach since some of these communities uphold a cultural climate of mistrust of outsiders (Ellard-Gray et al., 2015).

Recognizing the potential barriers to recruitment at both the participant and researcher levels can aid researchers in deciding on the best recruitment strategies to employ. Beyond potential barriers, vulnerable populations face risks that can dissuade them from participating discussed below.    

Risks Hindering Participation

  • Vulnerable groups typically face increased social, psychological, and physical risks when identified as a member of a particular social group. Individuals in vulnerable groups may hesitate to self-identify themselves to researchers.
  • Social risks such as loss of privacy, status, or reputation are at stake if one’s identity is publicized in study findings.
    • For example, individuals who identify as LGBTQIA+ may face discrimination, harassment, and violence in their lives, and these experiences may prevent them from participating in a study that would identify them. In addition, undocumented immigrants may avoid participating in research out of fear that their identification will lead to hardship.
  • Individuals who underwent traumatic experiences may decline to participate due to the sensitive subject matter to avoid psychological distress from recalling painful or frightening stories.

Dr. Christa Labouliere, Counseling & Clinical Psychology

Adjunct Assistant Professor

Dr. Christina smiling

In a 15-30 minute interview, Jona Avdiu, an IRB Research Writing & Ethics Intern, interviewed Dr. Christa Labouliere, Project Administrator of the Suicide Prevention – Training, Implementation, & Evaluation (SP-TIE) Program at the New York State Psychiatric Institute and adjunct professor at Teachers College, an expert in suicide prevention and intervention programs. Dr. Labouliere’s area of research broadly focuses on self-destructive behaviors across etiology, phenomenology, and treatment. Throughout her impressive career, she has worked with providers across New York state in various clinics. 

During the interview, topics included instances of exclusion for at-risk populations in research. Dr. Labouliere explained that some researchers are reluctant to include suicidal patients in research, since they are high-risk to work with. However, they cross the entire spectrum of mental health concerns. Suicidality is a common presenting feature in an array of mental health disorders, so excluding them becomes an issue of justice. If research does not study this populations, then when working with them, we do not know how our interventions will perform, which poses a serious problem when devising treatment plans for this population. Dr. Labouliere advises that, in order to account for the lack of representation in literature, more suicide prevention studies are needed and that studies of other mental health conditions should include suicidal individuals with safeguards in place so that it is safe to do so.

Vulnerability may become nuanced when working with intersectional populations. Dr. Labouliere illustrates the significant issue with high rates of suicide among marginalized communities, particularly among LGBTQIA+, indigenous and African American youths. Many researchers are not from these communities, which can lead to a lack of understanding of the specific needs and challenges faced by these populations. There is a need to develop new interventions to address these high rates of suicide and to work in partnership with communities to devise evidence-based interventions that are responsive to their needs. The field of psychology must also work to diversify and include more researchers from marginalized communities to better serve these populations.

When asked about how to remain sensitive to participants’ emotional life and keep participants motivated, Dr. Labouliere shared the following advice:

  • Motivation to participate in suicidal research can come from a variety of sources. Some people are naturally motivated to participate and may see it as a way to give back or make meaning of their experiences. Others may be motivated by the opportunity to receive innovative treatment for their condition, particularly if there are long waiting lists for treatment in their community. 
  • Safety is a central concern in this type of research, and researchers must take steps to ensure that participants are not placed at risk during the study. This includes frequent check-ins with participants and using true informed consent to respect participants' autonomy and ensure that they understand the risks and benefits of participation. Suicide-specific interventions, such as safety planning, means reduction counseling, or follow-up monitoring may be indicated to help participants stay safe during and after research procedures.
  • Researchers also often include the perspectives of people with lived experience in suicidal research and may use advisory boards to make the research process more comfortable for participants. 
  • The ultimate goal of clinical research in this area is to keep participants safe and to give them back some control and autonomy over their lives.

Labouliere also shared a vignette about a specific suicide prevention mission. An Arizona high school reached out to her research team after a cluster of students died by suicide in the span of one year. The majority of the student body spoke Spanish and Navajo, while each faculty member was English-speaking and white. The research team partnered with the school and began conducting community outreach to better understand the needs of the community and develop interventions to address the issue of suicide. The researchers immersed themselves in the native community by speaking to and learning from elders at reservations to find leaders in the community to help. The team found that many community members did not feel that existing research programs were designed for them, and they worked to integrate cultural beliefs and ensure that their methods were translated properly. In an ideal world, the team would have included community members and elders at the table from the beginning of the research process. The team emphasized the importance of getting to know the community and learning from the people they respect to develop effective interventions.

Throughout this suicide prevention mission and her research experience, Dr. Labouliere found that researchers should involve community members early in the research process, whether as advisory panel members or co-partners in the research. By doing so, researchers can ensure that the research is responsive to the community's concerns and that protocols are in place to keep participants safe. Researchers should be mindful of the feasibility and acceptability of their research for participants and should build multiple layers of protocols to identify distress and levels of risk. Staff should be trained in de-escalation and in conducting clinical risk assessments, and follow-up and monitoring participants to ensure their safety. By taking a more nuanced approach to research and protocols, researchers can do a better job of keeping participants safe and conducting research that is responsive to the needs of the community.


“If we purport to be wanting to help the communities we live in, are we doing the work to bring them in and integrate their perspectives and needs as to how they wanna be approached?” - Dr. Labouliere

By acknowledging the various barriers to recruiting vulnerable populations, researchers can tailor their recruitment efforts to yield maximum population participation. Since vulnerable populations face additional risks from participation, researchers should take additional measures to ensure their confidentiality and safety throughout the research process.

Sources

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

Gordon, B. G. (2020). Vulnerability in Research: Basic Ethical Concepts and General Approach to Review. The Ochsner Journal, 20(1), 34–38. https://doi.org/10.31486/toj.19.0079

Lake, M., Majic, S., & Maxwell, R. (2019). Research on Vulnerable and Marginalized Populations (SSRN Scholarly Paper No. 3333511). https://doi.org/10.2139/ssrn.3333511

Sutton, L. B., Erlen, J. A., Glad, J. M., & Siminoff, L. A. (2003). Recruiting vulnerable populations for research: Revisiting the ethical issues. Journal of Professional Nursing, 19(2), 106–112. https://doi.org/10.1053/jpnu.2003.16

Park, S. S., & Grayson, M. H. (2008). Clinical research: Protection of the “vulnerable”? Journal of Allergy and Clinical Immunology, 121(5), 1103–1107. https://doi.org/10.1016/j.jaci.2008.01.014

UyBico, S. J., Pavel, S., & Gross, C. P. (2007). Recruiting Vulnerable Populations into Research: A Systematic Review of Recruitment Interventions. Journal of General Internal Medicine, 22(6), 852–863. https://doi.org/10.1007/s11606-007-0126-3

Van Wijk, E. (2014). Recruitment and Retention of Vulnerable Populations: Lessons Learned from a Longitudinal Qualitative Study. The Qualitative Report, 19, 1–21.

 

— Jona Avdiu

Tags: New to IRB Submitting to IRB Multicultural Considerations. Ethics Tips for Success

Published Tuesday, Feb 14, 2023