Disparities in Black maternal health fuel KU research project to find better ways to identify eating disorders in pregnant and postpartum individuals

Serena Williams is among the top tennis players of all time, but she’s also a cautionary example about the dangers of being Black and pregnant in the U.S. In 2017, she almost died giving birth to her daughter, as she wrote in a 2022 first-person essay for Elle magazine. 

"I know my body," Williams said about the experience. “I felt like I was dying.” 

Coughing and pain alerted her that something was wrong — a blood clot had travelled to her lungs. But when she told the medical staff, Williams reported later, no one listened to what she was saying. 

Mari Thomeczek, a graduate student working at the KU Life Span Institute’s Center for the Advancement of Research on Eating Behaviors (CARE), said Williams’ description exemplifies disparities in healthcare among Black individuals. Thomeczek recently finished an important phase of work to improve eating disorder screening questions for Black and pregnant or postpartum individuals. 

"Even Black celebrities who have a ton of resources — financial and general societal resources—experience racism and disparate care in the medical field during their labor and throughout the perinatal period,” Thomeczek said. “I think that really exemplifies that this is a big issue.” 

She said eating disorders are overlooked in both Black and pregnant or postpartum individuals. Eating disorders, which are defined as severe and persistent disturbances in eating behaviors and associated distressing thoughts and emotions, are potentially fatal mental health conditions. 

An important step for identifying individuals who have an eating disorder is through screening questions. 

A Need for Better Screening Tools 

During pregnancy, anxieties around potential medical complications, loss of bodily control, and discomfort with one’s changing appearances can contribute to the onset of eating disorders.  

You are expected to still look thin except for your baby bump, said a participant in a recent KU research study focused on pregnant and postpartum Black individuals.

Such thoughts can lead to eating disorders, but the many myths about eating disorders can lead to its underdiagnosis in underrepresented populations. Eating disorders differ among Black and pregnant or post-partum individuals, which results in this population being dramatically overlooked by providers.

Not only are they overlooked, but their healthcare may also be shaped by past experiences. In 2022, a Pew Research Center study found 55% of Black Americans have had negative experiences with doctors, including having to speak up to get proper care and feeling like the pain they were experiencing was not taken seriously. The study also found more than half of Black Americans believe the U.S. health care system was designed to hold Black people back at least a fair amount.

This mistrust is in part a result of the long history mistreatment and abuse of Black people by the medical professionals, said Thomeczek. One well-documented example is the Tuskegee Syphilis Study.

Described by the CDC, the 40-year study observed the natural progression of syphilis in hundreds of untreated Black men without their knowledge or consent. Researchers hid the men’s syphilis diagnosis and withheld penicillin even after it was readily available, leading to 128 deaths. Concerns about research intentions may contribute to the lack of diversity among research participants, Thomeczek said.

While white individuals make up as much as 60% of the U.S. population, they account for 75% of research participants, the Food and Drug Administration reported in 2020; Black individuals, who are 13% of the population, make up just 8% of research participants. 

Community Engagement 

The health disparities in maternal healthcare inspired Thomeczek to work toward developing an eating disorder screening tool for Black individuals who were pregnant or who had recently given birth.  

Her work was funded with financial support from Postpartum Support International and a 2024 grant from the Racial Equity Research, Scholarship & Creative Activity program, an internal funding award from the KU Office of Research.

For help with her study, Thomeczek reached out to Uzazi Village in Kansas City, Missouri, a nonprofit organization dedicated to eliminating race-based maternal and infant health inequities. She partnered with the organization’s Community Expert Review Board (CERB) members in the research design.  

CERB members explained how Black stereotypes resulted in blaming individuals for the increased health disparities they face rather than the systemic problems that cause them. 

“As if it's a choice and that you did something wrong, or you're not doing what you're supposed to do,” Sandra Thornhill, CERB member, said.  

The board's input led Thomeczek to overhaul her approved research materials to create more culturally aware questions and implement more transparency.  

Thornhill said the board was happy with how Thomeczek adapted her approach to reflect the larger problem surrounding Black maternal health.  

"I'm excited how her research can really draw the line between more of an institutional and structural disorder that yields the negative outcomes,” Thornhill said. “I'm excited about elevating and expanding on that, and there just being a different narrative that presently isn't out there.” 

Eating Disorders in Minority Populations 

According to a 2021 study reported by the Harvard School of Public Health, Black, Indigenous, and people of color are half as likely as white individuals to be treated for an eating disorder.  

"Because these eating disorders are being missed, that's also contributing to disparities in the healthcare system,” Thomeczek said. Meanwhile, some types of eating disorders are even more prevalent in Black populations. These tend to be the same ones that affect people during pregnancy and postpartum, Thomeczek said.

While Thomeczek said her work is likely to improve screening tools during pregnancy in general, she was driven by the desire to address the health disparities faced by Black individuals. 

“During this project, I worked to address the issue of race-based maternal health inequities because maternal mortality rates are disproportionately high among Black individuals,” Thomeczek said. “Those facts and statistics really fueled me on this project because something needs to change.”

Research Findings 

As part of developing better screening tools, Thomeczek worked to identify sources of stress, which can contribute to health problems, including eating disorders. After coding the transcripts, Thomeczek found three primary themes for stressors across the interviews:  

• "Baby Runs the Body"  
• Fear and anxiety 
• Body dissatisfaction 

In terms of feedback for improving screening tools, Thomeczek said a fourth theme was the need for cultural congruence. 

Baby Runs the Body: Lack of Bodily Control 

Previous research has found body estrangement to be a common experience during pregnancy, with high levels being associated with feelings of shame, lack of control and lower levels of self-care behaviors.  

Respondents reported to Thomeczek feeling “fat,” “weak” or “pathetic,” lacking energy to exercise as they used to or watching television on a continuous loop.  

When baby runs the body, Thomeczek explained, “things that make you feel like yourself were put aside."  

While this is a concern for many pregnant and postpartum individuals who can feel overwhelmed by the increased demand from their baby and lack of control over their bodily functions, CERB member Sandra Thornhill brought up the legacy of Black people lacking power over their bodies that could further compound this stress.  

She described how through American history, Black bodies have been objectified, put on display and used in medical experiments without consent.

Race-related myths persist in the medical fields, as evidenced by textbooks published in 2016 that repeated the debunked claim that races experienced pain differently. A study published in PNAS that same year found half of white medical students and residents surveyed believed Black patients feel less pain than White patients, leading to lower estimates of reported pain and less accurate treatment recommendations. 

“This also goes into just the how Black birthing people are ignored,” Thornhill said. "Serena Williams is a very natural example of her word not being trusted about her body experience.” 

Fear and Anxiety: Birthing While Black 

There are plenty of fears and anxieties surrounding pregnancy and postpartum. Individuals reported a variety of concerns, such as stretch marks, breastfeeding their baby, and physical changes to their body.  

The fear that connected each of them stemmed from known inequities in healthcare outcomes.  The Agency for Healthcare Research and Quality in 2023 reported Black patients received worse care than White patients on 52% of quality measures.

“Every single survey participant brought up anxiety and fear surrounding their experiences with pregnancy and postpartum related to interacting with the medical system,” Thomeczek said.  

After surviving the birth of her child, Williams has since used her experience to highlight the disproportionate risk for Black Americans, who are nearly three times as likely to die from childbirth complications than white individuals, according to the Centers for Disease Control.   

According to the CDC in 2023, the maternal mortality rate in the U.S. is 18.6 deaths per 100,000 live births. This is compared to 12.2 out of 100,000 live births in Canada that same year, according to data released by the Canadian government. For Black Americans, the CDC rate was 50.3 per 100,000 live births — higher than any other racial group. 

Put another way, 669 women died of maternal causes in the United States in 2023, reports the CDC, and 247 of them were Black — representing 37% of all deaths, while representing only 14% of all births.  

In Kansas, the rate of serious health complications that occur during or after pregnancy and childbirth for Black individuals was 103.5 per 10,000 hospitalized deliveries, according to the Kansas Department of Health and Environment which studied rates from 2016-2020.  

This chronic stress caused by exposure to racism may further increase disparities in health for people who are Black, according to Thomeczek.

"The weathering hypothesis is often discussed in the maternal health care world,” Thomeczek said. "It's those day-to-day experiences of racism — whether it's very overt and explicit racism, or more microaggressions — those experiences really accumulate in a way that's harmful to health and well-being.” 

Body Dissatisfaction 

Pregnancy is a transformative time for the body, with varying degrees of weight gain that are recorded by physicians and often commented on by family and strangers alike. 

While not uncommon, dissatisfaction with one’s body image during pregnancy is an important health concern and has been linked to adverse health outcomes for parent and child. 

Thomeczek divided this third theme of body dissatisfaction into two sub themes—dissatisfaction with how they viewed their own bodies and dissatisfaction from others, including societal pressures, about how their bodies looked.  

Individuals reported not feeling as beautiful as they did before having babies, feeling ashamed of how their bodies looked, and distressed that their body didn’t look the way it was supposed to.

In addition to weight gain, pregnant individuals can develop stretch marks or visible varicose veins, enlarged feet and ankles, skin darkening and acne. The many changes during pregnancy can be distressing to body image, Thomeczek said. 

"In terms of how they viewed themselves, the perinatal experiences really impacted their self-esteem, their confidence, whether they wanted to look at themselves in the mirror,” Thomeczek said. "There were a lot of negative thoughts about how their body looks or should look, and how it's different from how they were hoping for it to look.” 

These negative thoughts led participants to have a strong desire to return to their pre-pregnancy shape after giving birth. Reinforced by before-and-after photos of other postpartum people “snapping back” after giving birth, participants considered engaging in extreme behaviors to change their postpartum shape.

Cultural Congruence 

The interviews Thomeczek conducted informed the development of the screening tool for pregnant and postpartum Black individuals. One suggestion to improve screening was to change a question asking about losing weight to a question about being unhappy with one’s body shape.  

In other words, the question was changed to ask about “achieving a certain figure as opposed to just losing weight,” Thomeczek explained in a virtual town hall in which she shared her findings and sought feedback from participants in early December 2024. 

Another change to the assessment was to consider the emphasis in Black culture on family meals, Thomeczek said. "So, participants wanted more questions on things like, ‘Are you purposely skipping those family events to avoid eating food?’" 

Another change was to remove culturally offensive items, such as using white cultural norms to describe ideal body shape.  

“Some items specifically asked about whether they thought their hips or butt were too big,” Thomeczek said. These items reflect the thin ideal that is emphasized in white culture but does not account for the “body shapes and proportions” that are generally valued in Black culture, she added.  

CERB member Cecillia Safford said much of what Thomeczek found resonated with her experience and those of others she was aware of, and she anticipates the positive impact the survey results will have on identifying health concerns for Black and pregnant or postpartum individuals. 

“I am really looking forward to her findings as she moves forward in validating a tool for potentially assessing the presence of disordered eating in Black birthing persons,” Safford said. 

Artwork: Adobe Stock and Christina Knott