Chapter 1 – Research with Diverse Populations

Research with Diverse Populations: Who is “Vulnerable”?
By
Esther Okang and Rebecca Doughty

Defining Vulnerability

It is difficult to define the concept of vulnerability or assign meaning to the state of being vulnerable. Liamputtong (2007) identified the reason for this struggle—vulnerability is a social construct. People have long been considered vulnerable for reasons such as socioeconomic status, race, religion, sexual orientation, disability, age, or gender. Lack of autonomy, choices, and self-determination are all considered potential contributing factors of vulnerability. However, simply being a member of a group does not make a person vulnerable. Vulnerability can befall any person or group at any point in time under certain circumstances. It cannot be assumed that all people who identify with a particular group are vulnerable, or consider themselves to be vulnerable. Nor can it be assumed that those who are not vulnerable will never be considered so.

According to the Oxford Dictionary, when used as an adjective, vulnerability is being susceptible to physical or emotional attack or harm. A person who is need of special care, protection because of age, support, disability, or risk of abuse and neglect is vulnerable. We have all been in situations where we have found ourselves vulnerable. As humans, we all have the tendency to feel vulnerable at some point. As researchers, we are not an exception to that rule; we find ourselves in situation that makes us vulnerable. Being able to walk in the shoes of those that we research is very important. It is only when vulnerable groups receive research consideration that care and quality of life can be improved. Conducting research with vulnerable populations often presents unique challenges for the investigators.

The U.S. Department of Health and Human Services, in their policy for protecting human research subjects, cautions researchers to be especially vigilant when researching vulnerable populations. Also known as the Common Rule, the HHS document notes that potential vulnerability exists for children, prisoners, pregnant women, mentally disabled persons, and economically or educationally disadvantaged people (U.S. Department of Health and Human Services, 2010).

The importance of understanding vulnerability cannot be overstated for researchers. After all, research is sometimes responsible for creating vulnerability. Knowing who is considered vulnerable is necessary to afford the appropriate protections.

Vulnerability and Sensitive Research

Inquiry that increases vulnerability in the focus population, and also puts the researcher at risk, is sometimes called sensitive research. Sensitive research involves subject matter that is usually deemed extraordinarily private—for example sexual conduct, illegal activities, or medical issues (Liamputtong, 2007).

An example of sensitive research gone awry is Boston College’s oral history of Northern Ireland (Phillips, 2012). Interviews that detailed the viciousness of conflict were recorded by Anthony McIntyre, a former IRA member (see video link below). Tapes of the conversations were to stay under lock and key until the interviewees were deceased. Protection of the parties involved in the interview process was never sought, and the result has been traumatic. Northern Ireland police have sued to release the remainder of the tapes to authorities, and the request was granted. If the recordings become public, all those who spoke out, and sought information, will be vulnerable to retribution.

Exemplar, Becky Doughty

“At the medical respite program where I give care to recently hospitalized homeless patients, I am familiar with the intricacies of sensitive research. I am currently undertaking a pilot study that focuses on patient engagement in the homeless population. Homeless people have long been considered vulnerable. They are marginalized and have very limited choices. When a research lens is trained on homeless individuals, it becomes apparent how quickly a simple study can assume sensitive research status, and can expose the participants’ vulnerabilities. I have to consider that I might be made privy to illegal activity, some of which I must report as part of my mandated reporter status. One of the respite interviewees was unable to engage in his own health care because he was undocumented. Another was in hiding to avoid prosecution. After formally interviewing these men, I had information that could be used against them, and that could be used against me.”

Exemplar, Esther Okang

“Growing up, I saw what wars could do to people and their nation. Being able to see people give their time and money to volunteer because of their affiliation with organizations or position within communities brings me hope. People are able to give assistance to medical professionals, and organizational teams give aid people who have being misplaced as a result of war. Contrary to popular belief, Africa’s civil wars are not due to its ethnic and religious diversity. Victims of war have been considered vulnerable. They are ostracized and have very limited choices or freedoms. Once a research lens is trained on war victims, it becomes apparent how quickly a simply study can assume sensitive research status, and can expose the participants’ vulnerabilities. Most of these individuals who have to start life all over again find it very hard to trust people with power even if the intention is to help. Often times these individuals are going through situations that only they understand. There is always the fear of being neglected or being held captive. Most women fear for their lives and the lives of their children. Boys as young as 6-years-old are being trained to use weapons. Do our circumstances make us vulnerable? To me the answer is YES, our circumstance make us vulnerable. Sometimes reading about these people gives me a different perspective on how women were treated in other parts of the country.”

Theoretical Frameworks for Researching the Vulnerable

To understand the relationship between vulnerability and research, it is useful to view the concept through the lens of a theoretical framework. Feminist frameworks seek to empower and reveal androcentric biases in research, seek to create social change, and seek to represent human diversity. When exposing androcentric biases, as researchers, we must make sure that our methods involve women (not men alone) as our participants. A researcher might want to look at the experiences of women in social hierarchies. For example a researcher must conduct in-depth interviews with women that reveal women’s understanding of power structures in the workplace, family, and elsewhere.

When conducting research using the feminist approach, each method must involve and respect participants as agents of change. As with all methodologies, it is crucial to acknowledge the positionality of the researcher and how this shapes the research process. For example what she or he views as important topics of study, how participants respond to face-to-face interviews, and how he or she interprets data gives it more depth. Feminist methodologies and methods assume that knowledge is socially constructed. Developing the most accurate and complete “knowledge” requires use of methods that reveal and embrace the diversity of social experience.

Martha Rogers postulated that humans are energy fields, and that when there is dissonance within this realm, vulnerability is created. Vulnerability can be viewed as the opposite of power, and can take root when people are unable to, or choose not to, engage in the processes that lead to change. Those people are then left without a voice, leading to marginalization and vulnerability. Stigmatization of groups such as single mothers or people who are homeless—who may lack resources or find it challenging to move freely about—creates vulnerability. Rogerian Theory was founded on the principle that the purpose of nursing is to promote health and well-being for all (DeChesnay & Anderson, 2008).

Conclusion

Anyone can be considered vulnerable–vulnerability is not determined by belonging to a particular group. While there is no universally accepted definition of vulnerability, researchers are able to identify situations and characteristics that increase the likelihood of being vulnerable. This awareness is necessary to ensure the safety of all those who are involved in the research process. Research must be undertaken carefully when working with the vulnerable, and it is our responsibility as researchers to utilize methods that will not exploit that vulnerability.

The following two videos were produced for Chapter 1:

Esther Okang on vulnerability:

Rebecca Doughty on vulnerability:

Northern Ireland:

http://www.npr.org/2011/06/15/137196876/a-fight-to-keep-northern-ireland-interviews-secret

References

DeChesnay, M., & Anderson, B. A. (2008). Caring for the vulnerable: Perspectives in nursing theory, practice, and research. Sudbury, Mass: Jones and Bartlett Publishers.

Liamputtong, P. (2007). Researching the Vulnerable. Thousand Oaks: Sage.

Phillips, M. (2012). Oral history of N. Ireland strife raises dilemma. Retrieved from http://www.cbsnews.com/8301-18563_162-57374314/oral-history-of-n-ireland-strife-raises-dilemma/

U.S. Department of Health and Human Services. (2010). Basic HHS Policy for Protection of Human Research Subjects. Code of Federal Regulations. Retrieved from http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html#subparta.