University of Wisconsin–Madison Medical College of Wisconsin

Listening to Black Women: The Critical Step to Eliminating Wisconsin’s Black Birth Disparities

Lisa Peyton-Caire, MSEd; Alia Stevenson, MS

WMJ. 2021;120(Suppl 1):S39-S41.

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Black women’s health is in a state of emergency in Wisconsin. The efforts of Black women-led movements have brought growing attention to the harsh realities of our nation’s deepest and most persistent health disparities, among them, the startling differences in birth outcomes between Black women and White women. Nowhere is this issue more pressing and relevant than in the state of Wisconsin, which carries the unfortunate designation as first in the nation for Black infant mortality,1 and where Black women are 5 times more likely than their White peers to die in childbirth or of pregnancy-related complications.2 Presently, babies born to Black mothers in Wisconsin are 3 times more likely than White babies to be born prematurely, placing them at increased risk of significant health and developmental challenges and of dying within the first year of life. This alarming public health crisis is mirrored in Dane County, the seat of the state’s capital, where Black babies are 2 times more likely than White babies to be born too soon and too small and to die before their 1st birthday.3

Wisconsin’s poor birth outcomes for Black mothers and their babies unfold alongside a troubling record of stubborn health disparities across the state. Though African Americans comprise roughly 6% of the total population, they are overrepresented in all major categories of disease and illness, including hypertension, heart disease, diabetes, cancer, stroke, obesity, and reproductive disorders. Black women and men are more likely than their peers to live with and die from treatable and preventable illnesses and at younger ages and, despite greater access to health care in Wisconsin than in many other states, African Americans still experience the worst overall health outcomes than any other group. Alarmingly, recent data suggests that Wisconsin is the only state in the US where the life expectancy gap between Black and White women is widening.4 These and other preexisting health inequities have been compounded by the arrival of the COVID-19 pandemic and its disproportionate impact on Black communities.

What is definitively clear is that Black women’s health in Wisconsin is in a state of emergency. The disturbing status of Black maternal and child health warrants urgent and decisive action on the part of policymakers, health care systems, medical practitioners, and communities to find solutions that turn the tide sooner than later. One such effort in Dane County, the Saving Our Babies initiative, is demonstrating promising progress by centering Black women’s voices and leadership to shape long-term solutions.

Black Women Cite Racism as Root Cause of Racial Birth Disparities

For the past 3 years, the Foundation for Black Women’s Wellness has partnered on the Saving Our Babies initiative, an unprecedented cross-sector collaboration initiated by the Dane County Health Council to improve Black mothers’ birth outcomes. The project is an extension of the Council’s work over the past 20 years to support and implement efforts that improve maternal and child health, and specifically to eliminate racial birth disparities. The Foundation was retained to design and carry out a community engagement process that centered Black women, men, and community members as key informants to identify root causes and solutions to the lingering low birthweight and infant mortality crisis.

In April 2019, after 9 months of listening and gathering input from 300 mostly Black female participants, we released the Saving Our Babies Report5 to share our findings and propose a focused set of community-informed recommendations and strategies. The report and its subsequent framework of actions represent a major departure from typical change efforts that are driven by systems rather than by community and that exclude community from the process of shaping and devising solutions. The prioritization of Black women’s voices in this work is its defining feature and has illuminated the root causes of Black birth disparities from the perspective of those most affected.

We used a comprehensive, multilayered process to collect both quantitative and qualitative data to inform the Saving Our Babies report. Our tools included a participant survey, open-ended written questionnaire, and engagement session notes. The participant survey collected standard data on personal demographics, health history, health care experiences, family planning and pregnancy, perceptions of well-being, and social determinants of health indicators (ie, housing, food, and income security and health care coverage). The participant questionnaire captured qualitative data, including health care experiences, lifestyle and living experiences in Dane County, relationships, and social emotional support. A facilitated group discussion followed the survey and questionnaire and was supported by scribed session notes to add context and clarity to participant responses and comments.

What we heard from participants in this process was strikingly clear: racism is the greatest risk factor affecting their health and birth outcomes. Their stories pointed to 3 significant realities that shape their lived experiences and exert a perpetual state of stress that deeply affects their mental and physical health: (1) stressed Black family systems, (2) generational struggle for economic stability, and (3) systemic racism and its effect on every facet of daily life. Participants cited a pattern of racialized experiences and opportunity imbalance across education, employment, health care, housing, and community life that relegates them and their families to a second-class status, leaving them susceptible to poor health outcomes and the legacy of disparity that persists in our region.

This broad analysis of the root causes of Dane County’s poor Black birth outcomes is reframing the local narrative and systemic approach to addressing racial birth inequities and has spurred the engagement of sectors beyond health care, including local and state government, business, and philanthropy, to assume greater accountability for shaping conditions that support2 Black family stability and well-being. Most importantly, the Saving Our Babies initiative has positioned Black women as critical partners in the work alongside systems to drive change.

Progress Accelerates When Black Women and Community Shape Solutions

The Saving Our Babies coalition continues to build momentum on implementing solutions shaped by the voices of Black women. Over the last year, partners have worked together to secure funding to support the creation of a care coordination system that will be implemented across each of Dane County’s 5 major health systems and will screen and link patients (with an initial focus on Black mothers) to resources that address their social determinants of health needs.6 Investments have been committed to expand the pool of African American doulas, birth workers, and neighborhood-based community health workers as critical players in the health care ecosystem for Black mothers and families. In August 2020, partners celebrated the launch of the Black Maternal and Child Health Alliance, an independent body of birth equity advocates who will advance strategies that improve the reproductive, maternal, and newborn health of the county’s Black population.7 In addition to these community investments, the Saving Our Babies report also recommends deep internal investments within health care systems and external efforts beyond health care that further favorable policies that advance economic security for Black women and families. Internal health system actions must include rooting out racial bias in health care delivery; expanding cultural competence among practitioners; building robust diversity, equity, and inclusion infrastructures; and expanding promising perinatal health initiatives. Furthermore, health systems must become active and vocal advocates in convening and driving cross-sector alliances that address the social determinants of health that lie at the root of racial health disparities.

Listen to and Believe Black Women –The Imperative That Will Turn the Tide

Building upon these and other promising developments, the Foundation for Black Women’s Wellness recently embarked on a broader engagement effort to shape a statewide policy blueprint for Black women’s health. Through a partnership with national digital story-capture organization Local Voices Network (LVN), we are convening Black women to identify and shape policy imperatives that will drive health and birth equity in our state. The emerging themes gathered thus far magnify the findings of the Saving Our Babies report and illuminate an immediate change that would save the lives of countless Black mothers and babies in Wisconsin: listen to and believe Black women.

An emerging theme among the women we are interviewing is the common experience of being unheard or not believed by health care providers.8 This phenomenon can pose potentially life-threatening consequences to all patients, and particularly to Black mothers and babies. A study released in August 2020 suggests that newborn Black babies are 3 times more likely than White babies to die in the hospital when their doctors are White, pointing to gaps in trust, communication, and levels of care.9 Quotes by 3 recent interviewees corroborate a growing body of research suggesting implicit bias on behalf of many providers who dismiss, minimize, or overlook Black women’s symptoms, pain, and knowledge of their own bodies.10 (See quotes below.)

Health systems, providers, and medical schools charged with preparing our future physician workforce bear an urgent responsibility to examine their institutional culture and individual practices to uproot bias and discrimination in the delivery of care to Black women and their families. This will require a commitment to prioritizing and cultivating cultural competence among practitioners, enabling them to deeply listen to and effectively treat Black women toward optimal health and birth outcomes. Physicians, nurses, and other providers must personally pause and reflect to examine the quality and tone of their interactions with Black women patients and consciously improve their practice of listening, believing, and responding accordingly with the absolute best care. The deep, uncomfortable work of challenging one’s own social conditioning and prejudices as practitioners is central to making health care safe and effective for Black women. Similarly, policymakers must listen to and acknowledge Black women and communities’ real concerns around structural racism and inequality and respond by championing community-informed policies that disrupt deeply entrenched racial inequities.

Conclusion

The present state of Black maternal and child health in Wisconsin is one of the most significant and urgent public health challenges we face. Turning the tide rests on our willingness to center, listen to, and position Black women and their communities as leaders and cocreators of the urgent changes we need. This work must confront racism head-on as the most dangerous public health threat affecting Black women and their families and must consciously work to unravel the structural and systemic barriers and biases, within and beyond health care, that perpetuate the cycle of racial disparity in our state. Efforts that advance Black maternal and child health specifically will be most effective and sustainable when they are community-driven and bring together synergistic coalitions of Black women, systems, community, and tangible resources that spark innovative solutions that generate a new cycle of health and social equity in Wisconsin. The lives of Black mothers and babies depend on our ability to get this right, and the next decade is our crucial window of opportunity to chart a powerful new course.

References
  1. Mathews TJ, Ely DM, Driscoll AK. State variations in infant mortality by race and Hispanic origin of mother, 2013–2015. NCHS Data Brief. 2018;(295)1-8.
  2. Schellpfeffer M, Gillespie K, Rohan A, Blackwell S. A Review of Pregnancy-Related Maternal Mortality in Wisconsin, 2006-2010. WMJ. 2015;114(5):202-207.
  3. Gibson C. Le Beau R. Dane County Maternal and Child Health Data Book, April 2019. Public Health Madison and Dane County; 2019. Accessed November 1, 2020. https://www.publichealthmdc.com/documents/MCH%20DATA%20BOOK%20FINAL3.pdf
  4. Harper S, MacLehose RF, Kaufman JS. Trends in the black-white life expectancy gap among US states, 1990-2009. Health Aff (Millwood). 2014;33(8):1375-1382. doi:10.1377/hlthaff.2013.1273
  5. Saving Our Babies Low Birthweight Engagement Final Report: Advancing Black Maternal, Child and Family Well-Being in Dane County to Improve Birth Outcomes. The Foundation for Black Women’s Wellness and EQT By Design, LLC; 2019. Accessed November 1, 2020. https://ffbww.org/wp-content/uploads/2019/04/FFBWW-DCHC-Low-Birthweight-Report_April2019.pdf
  6. ConnectRx Wisconsin: Grand Prize Winners. University of Wisconsin-Madison Institute for Research on Poverty. Posted November 25, 2019. Accessed November 1, 2020. https://www.irp.wisc.edu/connect-rx/
  7. Dane County Health Council and partners announce Black Maternal and Child Health Alliance to lead local birth equity efforts. Press release. University of Wisconsin-Madison. September 18, 2020. Accessed November 1, 2020. https://news.wisc.edu/dane-county-health-council-and-partners-announce-historic-launch-of-the-black-maternal-and-child-health-alliance-to-lead-local-birth-equity-efforts/
  8. The Foundation for Black Women’s Wellness and Local Voices Network participant interviews, audio recordings, October 2020. Accessed November 1, 2020. https://lvn.org/FFBWW
  9. Greenwood B, Hardeman RR, Huang L, Sojourner A. Physician–patient racial concordance and disparities in birthing mortality for newborns. Proc Natl Acad Sci USA. 2020;117(35):21194-21200. doi:10.1073/pnas.1913405117
  10. Why are black women at such high risk of dying from pregnancy complications? American Heart Association News. February 20, 2019. Accessed November 1, 2020. https://www.heart.org/en/news/2019/02/20/why-are-black-women-at-such-high-risk-of-dying-from-pregnancy-complications

Author Affiliations: The Foundation for Black Women’s Wellness, Madison, Wis (Peyton-Caire, Stevenson).
Corresponding Author: Lisa Peyton-Caire, MSEd, The Foundation for Black Women’s Wellness, 6601 Grand Teton Plaza, Suite A2, Madison, WI 53719, phone 301.741.6774; email Lpcaire@ffbww.org.
Funding/Support: None declared.
Financial Disclosures: None declared.

Quotes From Interviews With Black Women

“So I would say the barrier to my health and well-being at that time in my life was the medical system—the doctors—not listening or not recognizing or not acknowledging that my life was in danger despite the evidence to the contrary.” – AS

“It took me to switch my doctors, and my [new] doctor did 1 exam and sent me to a specialist and figured out what was wrong with me. Being it took so long and I was in so much pain, I had to get a partial hysterectomy. That might have not happened if my doctor actually listened to me and listened to everything that I was telling him.” – CW

“I also think there’s this misconception that in Wisconsin the reason why the infant mortality and maternal mortality rates are high is because something about lack of health care. It’s not about the lack of health care. We all have access to health care. It’s just when we go to the health care providers, we’re not listened to.” – AK

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