Addressing Black Maternal Mortality Rates Starts with Listening to Black Women
In New York State (NYS), Black women are more than three times as likely to die from pregnancy or giving birth as white women. This disparity has persisted alongside the U.S.’s rising maternal mortality rate, which has doubled in the past 15 years. Recognizing the urgent need for change both within their state and across the nation, NYS launched an initiative to engage women of color in identifying sustainable solutions for improvement.
“Black women across the nation are at risk, and there’s a need to find out what is going on,” says Nevillene White, a public health representative from the NYS Department of Health (NYSDOH) Bureau of Women, Infant, and Adolescent Health. “We need to talk to women—to hear from them about their thoughts on the solutions and strategies that can help combat this.”
In response, NYS developed a series of community listening sessions where women from high-risk areas across the state shared stories about their birth experiences and their thoughts on NYS’s maternal mortality rate. NYSDOH sought to create an atmosphere of trust and community that empowered women to openly share their experiences and come together to address the problems affecting their lives.
The sessions brought together several key stakeholders—pregnant women, women who had recently given birth, women who had a negative birth experience, family members of someone who had died during child birth, community-based organizations, and NYSDOH representatives—as equal partners seeking improvement. “This is a problem the State can’t handle by themselves, community-based organizations can’t handle by themselves, and nor can women,” says White. “We needed to come together, to sit at the table together, with equal power together and really address the issue.”
Over a six-week period, NYSDOH led seven listening sessions in seven communities experiencing disproportionate rates of poor birth outcomes, especially among Black women giving birth. Between 27 and 43 women were present at each, engaging in inquiry, dialogue and solutions-building.
The listening sessions revealed that women in these communities were facing significant barriers to optimal health. Participants often felt they were not being listened to by providers. They also expressed feeling that judgement, disrespect, bias and racism affected the care they received. They said they were given very little information and education during maternity care and there were too few social supports in place in their communities. Everything they shared was collected in a comprehensive report, which NYSDOH is now using to inform its efforts to eliminate disparities in maternal mortality across the state. By listening to women of color, they’re developing relevant, culturally competent solutions.
Strategies to Support Successful Listening Sessions
Executive leadership prompts statewide change
On April 23, 2018, NYS Governor Andrew M. Cuomo announced a comprehensive initiative to target maternal mortality and reduce racial disparities across the state. The listening sessions are a vital component of this initiative. NYS Health Commissioner, Howard Zucker, MD, JD, attended most listening sessions and shared the State’s commitment to improving systems based on what attendees shared. Before the discussions began, he explained that he was there to listen and helped frame each conversation by sharing data about maternal mortality in attendees’ communities. The Commissioner’s presence at the listening sessions affirmed the State’s commitment to having community voices guide statewide change.
Identify who you want in the room
The people most impacted by the problem need to be in the room. That’s why NYSDOH specifically sought out women from communities with poor birth outcomes, with an emphasis on Black women who have experienced an adverse birth outcome. Attendees were either women who were pregnant or had recently given birth and had a negative birth experience, or a friend or family member of someone who had died giving birth. Some listening sessions also included partners/family members who answered the same questions but were gathered at a table separate from women.
To invite these participants, the NYSDOH relied on community partners, specifically those working on the NYSDOH Maternal and Infant Community Health Collaborative Initiative. These partners already had deep roots in the community and could reach out to families who had stories to share.
Make attendance as easy as possible
Addressing potential barriers to attendance helped NYS consistently fill their sessions. They talked to community partners about where to hold each session, and typically chose a site in the communities where prospective participants lived. They offered transportation through subway cards or taxi services, and a meal; and they provided childcare so that mothers could fully engage in conversations knowing that their children were safe. In recognition of the participant’s time and expertise shared, NYSDOH also provided $50 gift cards to all attendees.
Create an environment that encourages honest conversation
Most listening sessions began with a welcome and introduction from Commissioner Zucker and the sponsoring CBO. Then, participants jumped into the heart of the session: the table discussions. These were organized around four core conversation topics: planning for pregnancy, pregnancy, giving birth and birth outcomes.
To optimize the table discussions, NYSDOH developed a structure that encouraged honest, open dialogue from all participants. First, each table had no more than eight individuals, which gave everyone a chance to share. Each table also had two scribes and a facilitator. The scribes wrote down exactly what they heard, without judgment, and the facilitator raised discussion questions while being careful not to interject personal thoughts into the conversation. It was also important to give all organizers a job during the sessions, such as helping with childcare or organizing food, so that participants didn’t feel like someone was watching them. Together, this structure promoted a safe and trusting environment for honest conversation.
Have a mental health professional present
During the listening sessions, women shared experiences that were very personal and sometimes traumatic. Since talking about these experiences can be triggering, NYSDOH made sure each host organization provided a mental health professional at each session to provide support, if needed.
Make sure attendees know they were heard
After the table discussions, Commissioner Zucker participated in a “table speak back” allowing each table to share their most important takeaway; the commissioner listened and then spoke back what he heard to ensure accuracy. And at each session’s close, the Commissioner thanked participants and assured them he would bring what he learned back to the Governor, so it would inform State-level action.
“It was really empowering,” says White. “Women said they were excited that someone who could really make change was there and listening to them.”
New York State’s work reflects the vital need to elevate the voices of families most affected by persistent health disparities. Interested in learning more about engaging families and communities? This archived webinar from NYS focuses on the critical importance of engaging and learning from community voices to better understand and address racial and ethnic disparities. Or, read this recent article on developing authentic community engagement.
NICHQ Employee Spotlight: Nathaniel Ray Pickett, Ph.D.
Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. This month, NICHQ Web & Product Manager Nathanial Ray Pickett, Ph.D., shares his untraditional path to working in MCH, while highlighting his passion for equity, resisting oppression, and giving voice to the voiceless.
TRANSCRIPT | Connecting Infant and Maternal Health Outcomes – Prematurity Awareness Month
Our main story this episode highlights he links between maternal and infant health, and the impacts of preterm birth on health outcomes for mothers, birthing people, and babies. Hear from NICHQ VP of Equity and Innovation Dr. Stacy Scott, Ph.D. D, MPA, who shares some equity considerations regarding disparate rates of preterm birth, infant mortality, and maternal mortality. Dr. Zsakeba Henderson, MD, FACOG, NICHQ’s senior health advisor, also connects the impact of maternal health on infant health outcomes while shining a light on the U.S. maternal mortality crisis and current policy initiatives that can help reverse maternal mortality trends.
NICHQ Employee Spotlight: Callie Rowland
Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. This month, NICHQ Project Manager Callie Rowland, MPH, shares her passion for working to affect change in the system, serving all mothers and children, and working for an organization that aims to help create more equitable systems.
4 Strategies for Transitioning from Pediatric to Adult Care for People Living with Sickle Cell Disease
Whether transitioning to college or a full-time job, it's a time when young adults are going to be establishing their independence from their nuclear family and taking responsibility for their own needs. For a young person with special healthcare needs such as SCD, the responsibilities are compounded by the additional need to begin transitioning from pediatric to adult care. Read more for four helpful strategies for transitioning from pediatric to adult care for people living with sickle cell disease and other special health conditions.
TRANSCRIPT | Sickle Cell Awareness Month: Transitioning to College, Equity Considerations, and Resource Sharing
Our main story this episode highlights the need for resources for people living with sickle cell disease and strategies for transitioning from pediatric to adult care. We also reflect on National Infant Mortality Awareness Month and hear from NICHQ team member about connecting their personal and professional passion for equity. Thanks for joining us!
For our main story in this episode we are joined by Summer 2023 NICHQ Communications & Digital Strategy interns Amalia Hirschhorn-Martinez and Katie McCormick. They speak with members of the NICHQ team about our upcoming webinar focused on infant safe sleep and breastfeeding messaging and NICHQ’s continued work to ensure health professionals and the communities they serve are supported with the necessary tools and resources to create safe sleeping environments and improve breastfeeding and chestfeeding rates.