By Shameka Poetry Thomas, Ph.D.
NIH Intramural Research Program
Health Disparities Unit
Social and Behavioral Research Branch
National Human Genome Research Institute
My grandmother was a traditional healer and a medicine-woman in Georgia’s rural South. Although I grew up in Miami’s Opa-Locka (a small urban neighborhood tucked between Miami-Gardens and the cusp of Hialeah / Little Havana), I spent most summers near middle Georgia’s farmland, listening to my grandmother. I observed how grandmother, who did not have a Ph.D., gathered Black women in circles. She described the process of listening to Black women’s pregnancies, births, and wellness experiences as “chitchatting and holding space.”
Learning how to ‘hold space’ is what draws me to narrative medicine. My first dose of learning how to conduct narrative medicine, I suppose, came from my grandmother. This methodology (before I knew it was such) was simply understood as the process of sitting in kitchens and beauty salons in the South—just listening. During childhood, I was merely curious about how Black women described their pregnancies, births, and reproductive health—from their side of the story. Thus, when it came to reproductive health, my grandmother taught me a powerful tool: how to “hold space” for people’s narratives.
What is narrative medicine and holding space?
As an early-career scientific investigator and medical sociologist, my prior work focused on holding space for the lived-experience of Black women’s pregnancy and birth at the clinical encounter via narrative medicine. Holding space, the keystone of my approach to narrative medicine, is defined as the ability to center the lived-experience via the practice of compassion and stillness, without blame, shame, or judgement. Narrative medicine1, thus, focuses on the experiential worlds of patients and operates from the basic principle that patients are individuals, rather than cases or variables. Patients, in this sense, can 1) interpret their own health (and illness) experiences; 2) define their own approaches of wellness, 3) communicate their perceptions of treatment, and 4) evaluate their own perspectives of outcomes inside and outside of clinical encounters. Researchers who employ narrative medicine aim to resurrect the stories of patients who have been marginalized by centering the lived-experience as legitimate data and findings.
Using narrative medicine to investigate sickle cell disease in Black women’s pregnancy
My current research, as a postdoctoral fellow in the National Human Genome Research Institute’s intramural research program (and a program contributor to NIMHD’s Centers of Excellence on Environmental Health Disparities Research), focuses on two aspects: 1) utilizing narrative medicine to examine the reproductive health experiences among Black women with genetic disorders, such as sickle cell disease (SCD); and 2) integrating social scientific frameworks across clinical approaches to contextualize the ethical, legal, and social implications of non-invasive prenatal testing (NIPT) among Black women with and without genetic conditions. My goal is thus to contextualize and measure how implicit and explicit racial bias manifests at the clinical encounter using narrative medicine approaches, concentrating on the lived-experiences of Black women’s health in the U.S.
Why is narrative medicine critical for investigating Black women’s reproductive health?
Adverse pregnancy and birthing outcomes among Black women have been well documented3 however, biomedical research has not explained why maternal mortality among Black women has steadily increased. In the U.S., for example, maternal mortality among Black women is 243% higher than in White women, and despite advances in reproductive health care4, detrimental birthing outcomes among Black women persist. Since Black women are three to four times more likely to die from preventable prenatal complications disproportionate to White women in the U.S.3,4, understanding the narrative behind the numbers2 is critical.
Reproductive health disparities has been correlated with lack of access to quality health care services, racial discrimination, implicit and explicit bias at clinical encounters, and residential segregation3,4,5. Black women’s bodies have also been historically and ongoingly stigmatized, stereotyped, and objectified across medical institutions. Developments in reproductive healthcare, furthermore, benefited historically from the commodification of Black women’s bodies5 during the enslavement era.
Black women’s reproductive health experiences are ultimately impacted by structural racism through racial discrimination. Although racial discrimination in the U.S. has demonstrably changed over time, it is still consequential. Implicit bias and unconscious racism, for example, are social products of structural racism that show how the complexities of racism operate during clinical encounters.
Seeking to understand Black women’s perceptions of reproductive health as it relates to sickle cell disease, in turn, can help us to identify potential areas for intervention and improvements in health care for historically vulnerable populations. My research agenda integrates sociological frameworks with public health and clinical practices to center Black women’s reproductive health experiences in genetic technology and prenatal care.
Synergizing the lived experience by integrating social science
Now more than ever, it is important to integrate social scientific frameworks in biomedical research. I have identified four motivations for this integration, which we all should consider:
- We can see from the COVID-19 pandemic, the lived experience of race and racism is real. Therefore,, lived-experiences among both patients and physicians are also real because they belong to the ever-changing social stock of knowledge.
- The social stock of knowledge influences how individuals internalize, navigate, negotiate, and process the clinical encounter in making decisions.
- Narrative medicine challenges researchers to examine how patient perceptions are personally or collectively constituted, rather than merely appealing to the empirically based, objectified features of social life.
- Everyday lived-experiences, therefore, are impacted by top-down processes that are, in turn, shaped by historical structures, that continue to shape patient perspectives at the micro-level.
Social scientific research, particularly qualitative methods, challenges us to grapple with reality at the micro level, and how lived-experience is perpetually shaped by the macro-level. Narrative medicine’s goal is to illustrate how a phenomenon appears before, during, and after the clinical encounter. Acknowledging and valuing the synergy of these integrations, in my perspective, is a step toward alleviating health disparities. By confronting what it means to eradicate the root of the structural problems, we have an opportunity to increase health equity that truly pushes our bold predictions to the forefront.
Without the synergy of social science methods in biomedical research, we will continue to neglect the everyday experiences of many minority populations, regardless of scientific innovation. Equitable scientific innovation must consider how the social experience impacts health care outcomes. To do this, we need social scientists, clinical and basic researchers across disciplines to work in transdisciplinary teams, combining their strengths, using their methodologies to establish interventions to reduce and end health disparities. If not, we will only continue to perpetuate gaps in health outcomes. Ultimately, narrative medicine shows me how to hold space to reduce maternal mortality and improve health, by listening to the narratives of patients.
Narrative medicine, a methodology that I hope to continue to bring to my research as a medical sociologist, is our opportunity in the field. It is in the forefront because it encourages us to value the synergy of trusting and listening. Ultimately, beyond the canon of biomedical knowledge, as well as my own advanced training as a Ph.D., I reflect on my first lessons of holding space. My grandmother comes to mind, as she may not have been a scientific researcher or clinician, but she taught me there is something to be said about the ability to simply hold space for the human story.
- Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press: NY.
- Thomas, Shameka Poetry. 2021. “Street-Race in Reproductive Health: A Qualitative Study on the Pregnancy and Birthing Experiences among Black and Afro-Latina Women.” Journal of Maternal and Child Health. DOI: 10.1007/s10995-021-03188-2
- Adams, Crystal, and Shameka Poetry Thomas. 2018. “Alternative Prenatal Care Interventions to Alleviate Black / White Maternal and Infant Health Disparities.” Sociology Compass. https://doi.org/10.1111/soc4.12549
- MacDorman MF, Thoma M, Declercq E, and Howell EA. Racial and ethnic disparities in maternal mortality in the United States using enhanced vital records, 2016-2017. American Journal of Public Health DOI: 10.2105/AJPH.2021.306375 (2021)
- Roberts, Dorothy. 1997. Killing the Black Body. Routledge Press: NY.