Aza Nedhari, M.S., is executive director and cofounder of Mamatoto Village, a Washington, D.C.–based nonprofit that trains and deploys community health workers to support women through pregnancy, childbirth, and the first months of parenting. Nearly 90 percent of Mamatoto Village’s clients are African American women, who as a group suffer dramatically worse maternal health outcomes than other women, including higher death rates and more complications during pregnancy and postpartum. Four Medicaid managed care plans offer Mamatoto’s services to their members. Transforming Care spoke with Nedhari about her program and her efforts to address what she sees as the root causes of these disparities.
Transforming Care: Where did the idea for Mamatoto Village come from?
Nedhari: I started thinking about creating a wellness center and space for families when I was an undergrad at Temple University. The idea for it evolved as I began training as a doula and then a midwife. I was shocked by how inadequate doula training was generally and in particular for meeting the needs of women of color. I wanted to develop a culturally specific training program that looked at women not just in the context of a birth experience but through the life cycle. My cofounder and I initially planned to train people to provide supportive services to women who could not afford it or maybe just wanted care from women of color.
Transforming Care: You refer to your employees as perinatal health workers. How does their job differ from doulas?
Nedhari: Coaching a woman through a birth is a small component of what they do. Our employees help women with domestic violence, housing, and complex mental health issues — with a goal of creating stability so women can they can take care of themselves and their families. That’s why the community health worker model works well. They get two years of training with a perinatal health focus. Once they start working with us, they specialize: one may focus on lactation, while another focuses on health and wellness including helping more high-risk women manage preexisting morbidity. Having these defined roles helps to prevent burnout among staff and creates a sense of shared responsibility.
Transforming Care: There have been a number of theories as to why African American women have dramatically worse outcomes than white women and women who have recently immigrated from Africa, including theories about toxic stress, untreated chronic disease, and provider bias. What’s your sense of the problem?
Nedhari: It’s all of the above. For many women, pregnancy is the first time they have consistent engagement with the health system. It’s a tipping point by which all decisions we’ve made along the way come to a head. If at that point they encounter a system that doesn’t value them as people, they may disengage. Structural racism also plays a central role. It translates into stress because it creates a system in which people are oppressed — economically, through education, through the food that’s available in their communities. When you layer these things together, it sometimes makes an already challenging situation like childbirth tragic. When we meet with women we want to understand all of these dimensions: What kind of schooling did this woman actually get? What type of stress is she experiencing? What kind of trauma is she holding in her body? What is her support system?
Transforming Care: What have you learned from the surveys you conduct about women’s experiences with their obstetric care providers?
Nedhari: Most women report having a positive experience with their providers, but among those who are dissatisfied, the most common complaint is lack of respect. Many say they don’t have enough time during medical visits or don’t feel things were adequately explained. Another thing that comes up often is the feeling of being pressured into procedures like labor inductions or cesarean sections. They feel they aren’t being told what their options are or given an opportunity to consider them.
Transforming Care: In news stories describing black women’s birth experiences, many women including Serena Williams describe having raised serious concerns only to have them ignored.
Nedhari: We hear that over and over. Most of our clients feel like they are not being heard when they present with symptoms. Or the symptoms are dismissed as a normal part of pregnancy or birth. We often have to step in and say these symptoms are abnormal. We may have to get other people involved in that woman’s care to make something happen for her. We’re often the first responder, observing what is happening, and can work with the provider to make sure the plan of care is realistic for the mom and is something she is interested in adhering to. We also can help reach out to moms who have missed appointments. Our goal is to partner with the provider. The providers can’t do our job and we aren’t attempting to do the provider’s job.
Transforming Care: To what extent are the women you work with distrustful of providers based on recent experiences vs. their awareness of historical injustices?
Nedhari: It’s really a combination of her own experiences and all the stories she’s heard and is carrying with her. Our goal is to help women advocate for themselves. Some women in our program who have been through domestic violence or sexual abuse don’t feel they have a voice to speak up. We help her find her own voice. Sometimes it’s asking about her priorities or it is role-playing communications with a provider, helping the mom learn how to have a collaborative relationship. We’ll say “You hired a person to have a service. What kind of customer experience do you want to have?”
Transforming Care: Where do you think we’d have the biggest impact in addressing maternal health disparities? People have mentioned instituting mandatory maternal mortality review boards, changing medical education, spreading models like yours. Where would you start?
Nedhari: I think it is complex because every community has a different need. At a macro level, we need more of what is already working. Spreading models like this would help because you are not only tapping into resources in the community, you are creating jobs where people don’t have the resources they need to access better food choices, better education, better housing, better everything.
Transforming Care: How would you change provider education?
Nedhari: There needs to be a course in medical school on the history of obstetrics and gynecology so providers have an awareness of eugenics and experiments based on race. People’s assumptions, stereotypes, biases, and racism also need to be challenged at the outset. Cultural humility can’t be taught through a cultural competency class you take online. If you are going to deliver care, you have to have a positive regard for the people you serve and the fundamental knowledge and skills to build a rapport with them. Medical schools need to make sure this is cultivated and nurtured. When we start to look at it from that light, we will change the people we send out in the world who are charged with holding life in their hands.
Transforming Care: What advice would you give others interested in replicating this model?
Nedhari: Ensure everything is equitable, down to the technology you use and make sure the model works for all of your staff — from the person who has a high school diploma to the person with a Ph.D. When we started we thought we could just provide education for our perinatal health workers and everyone would be well on their way. We soon realized we were a workforce development program as much as a perinatal support program. Not everyone has life skills like time management or budgeting. We now go over everything our staff need to be successful, including childcare and banking.
Transforming Care: What are your plans for the future?
Nedhari: Our goal is to apply for funding to scale. I want this to become a home visitation model that can be replicated by going into spaces where economic security is bleak, providing jobs, and really starting to build the wealth of the community. It’s not just financial wealth but a wealth of knowledge and access. We are continuing to evaluate the impact of our program and hope to use these data to move toward billing a capitated rate and sharing savings with the managed care companies we serve.