Speaking One’s Truth: Centering Real-World Experiences in Qualitative Research to Foster Professional Discourse

Abstract

Health care in the United States is complex and inequitable, with prominent disparities by race, gender, and culture recently laid bare by the COVID-19 pandemic. These injustices in medicine have become challenging to discuss and address in the current sociopolitical climate. One approach to fostering healthier scientific discourse is to improve transparency, rigor, and authenticity in the methods used to address health disparities. In this commentary, we share observations on qualitative research that authentically retains participant voices to showcase how centering real-world participant voices can be a powerful tool to facilitate scientific discourse on health disparities.

One of the fundamental ethical responsibilities of a researcher is to accurately and authentically represent the voices of research participants. In qualitative research, investigators frequently face difficult decisions about which quotes to select and present that represent the holistic experiences of their participants. When studies include a diverse group of participants with varied lived experiences, occasionally, the most significant of these quotes can be uncomfortable to read, at once a validation of a participant’s reality, tumultuously thought-provoking for the reader, and potentially traumatizing and triggering to readers. One instinct is to omit these quotes to avoid provoking or challenging dominant societal views. However, this omission negates the experiences of marginalized individuals whose stories are often less featured or underrepresented and risks preserving a power imbalance between researchers and the community. ¹ In these moments, researchers have a compelling opportunity to address issues of health equity by carefully including a diverse set of perspectives. To illustrate these scenarios, we discuss three examples from the literature.

Our first example comes from an article from our group in JAMA Network Open about Black Veterans’ experiences of racism. ² Racism is “a system of structuring opportunity and assigning value based on the social interpretation of how one looks (which is what we call “race”), that unfairly disadvantages some individuals and communities.” ³ Participants illustrated the deep and enduring trauma of racism:

Where I got to worry about—I’ll give you an example. A young Black man goes to jail; he does 13 years in jail. Now he got a felon, but the Constitution says that by right, he paid his debt to society; 13 years you gave him for that, but yet, you stigmatized him with a felon. Now he comes out, I can get a job pay your taxes, but I can’t vote. So, the stresses that’s in my community, the stress that I feel? I’m stressing for my people. Damn. I hate to say that, but it makes my heart cry, man.”

“When I came back [from serving in the military], we were called nigger, and they threw dog shit on us… And then, I had to get over that. And it’s like, hey, just stay in the house and do what you got to do. And then my PTSD flared up on me, and—so, I’m too old to go to jail. So, my surrounding is like this table, very small.” “We’re under pressure all the time; it’s where the stress comes in.

As one of the most volatile words in the English language, the n-word is a polarizing racial slur that might derail conversations about race and racism. ³ Its history is inseparably linked to the violence and brutality of slavery and discrimination. It carries so much controversy that it has become unspeakable among some circles, ⁴ rooted in shame about America’s history of violence and oppression against Black people. There is little research that focuses on the impact of the n-word as a racial slur, but many Black people consider it a verbal assault. While the n-word may represent and contribute to cumulative racial trauma, Black people may use the n-word in qualitative research to share their experiences of discrimination and racism. When this occurs, it can be an empowering act of resistance and a potent opportunity to be heard. ⁵

Our second example comes from the world of immigration and xenophobia. A qualitative study in JAMA Internal Medicine highlighted the illness experiences of undocumented immigrants. ⁶ The study documented the discrimination and psychosocial distress experienced by undocumented individuals. This is powerfully illustrated by quotes stating,

“Did you know that in Colorado and in the rest of the US, people that are undocumented are not allowed to donate a kidney if they are living? If an undocumented person dies, though, and if they have the little heart on their license, they don’t have a problem taking every organ. So, you cannot donate to your loved one when you are alive, but they will take all your organs when you die.”

“When you arrive at a hospital without documents and health insurance, sadly, they treat you as if your life is worthless.”

Due to shifting and volatile global political climates, the world has recently faced one of its largest crises of displacement and mass migration of refugees. While racism primarily disempowers individuals based on physical traits, xenophobia further excludes people from society due to differences in immigration status and culture. Social exclusion and discrimination in their host country is one of the most significant obstacles to health and well-being for migrants. Understanding how discrimination intersects with immigrants’ identities is essential to supporting the health of marginalized people.

Our final example relates to sexual trauma in the context of military service. A study published in the American Journal of Public Health explored deployment dynamics, military culture, and perpetration of military sexual trauma. ⁷ In the article, women discussed the dynamics of sexual assault in the military:

“You train people to be tough, invincible, on top of the world, in charge of everything, but at the same time there’s no mechanism for taking that away when you’re talking about sexual conquest.”

“Really punishing people who do this stuff would help, probably. Not treating rape victims like they’re on trial would probably help.”

In the military, historical gender cultural norms and power dynamics contribute to an environment of pervasive sexual harassment and assault. Thirty-eight percent of servicewomen report military sexual trauma, ⁸ increasing their risks of a myriad of poor mental and physical health outcomes. Sharing stories of sexual trauma can be a form of resistance in a culture that enforces silence on survivors.

There are several accepted strategies used to achieve rigor and validity in qualitative research, including prolonged engagement, peer review, identifying and acknowledging researcher bias, member checking, triangulation, and inter-coder reliability. ⁹ Importantly, methods that promote rigor don’t always align well with preserving and fostering safety. For example, member checking is a method that requires participants to review transcripts or other study data to verify its accuracy. However, having to review and relive descriptions of potentially traumatic events can be stressful for some participants. Rather than treating these methods as a checklist, it is important for researchers to leverage strategies that allow participants to tell their stories and feel safe and understood.^10,11 This may require engaging with communities and individuals by building trust and fostering a relationship of mutual respect through cultural humility.

Rigor in qualitative research calls for reflexivity, whereby researchers pause to reflect on how their own socialization, biases, and identities influence their interactions and interpretations in the research process. ¹² Theory is a critical element in advancing reflexivity in qualitative methodology. Theories can encourage researchers to reflect on power dynamics and center marginalized voices. Some qualitative paradigms can also drive reflexivity. For example, phenomenological theory preserves the essence of participants’ experiences, while the grounded theory approach emphasizes how findings can be informed and theories can emerge from the words of the participants. There are many tools and frameworks for conceptualizing and practicing positionality in the research process. One such tool is the Social Identity Map, which invites researchers to reflect on three tiers of positionality: identifying their social identities, how these impact their life, and recognizing emotions that may be tied to the details of their identities. ¹³

There is much to be done to enable productive discourse on health disparities and several ways in which the academic publishing community can demonstrate this commitment. First, academic journals can ensure patients and underrepresented individuals have a fair and balanced opportunity to join editorial boards and roles. Doing so can help ensure diverse viewpoints are represented and can reduce power imbalances. Second, journals should continually evolve criteria for “fit” and “rigor” to be inclusive of research that elevates and addresses the needs of both traditionally represented and underrepresented communities. This is already being done by some editorial boards through the development of guidelines for authors, reviewers, and editors, promoting the use of a health equity lens informed by inclusive principles, and encouraging positionality as part of the review process. Lastly, journals can solicit and foster research that explores structural and historical inequities in academic publishing with an eye toward addressing health disparities. As more qualitative researchers delve into studying diverse viewpoints and traumatizing participant experiences, we urge academic journals to partner with researchers and the community to include diverse real-world participant experiences in published literature, even if it may feel uncomfortable.