The establishment of a Maternal and Infant Health Innovation and Research Center is one of nine recommendations outlined by the 2021 Nurture NJ Strategic Plan to reduce maternal and infant mortality and morbidity and ensure equity in care and in outcomes for mothers and infants of all ethnic groups. The purpose of this environmental scan is to provide input for the design of a Maternal and Infant Health Innovation and Research Center within Trenton.
Building on the Nurture NJ Initiative, this project is a deeper dive in its focus on Black and Latina women living in Trenton and surrounding areas. Black and Latina women are the experts on their bodies and the environments that shape them. This study is a preliminary step in legitimizing Black women’s rights to autonomy over their bodies, building on a long history of existing knowledge and networks that exist within Black and Brown families and communities. Furthermore, it represents a step toward the long-term goal of creating, supporting and sustaining fully built, equity-promoting community health ecosystems in Trenton.
Our work was grounded in addressing the social and structural determinants of health in Trenton, including sexism and racism. We paid special attention to safe and equitable housing, food stability, and economic security, and to working against discriminatory practices and policies embedded in social and health institutions statewide.
Furthermore, we sought to understand local needs, existing supports and networks from the perspectives of service providers within Trenton and surrounding areas. In addition to recruiting a diverse population of Black women who participated in focus groups, we interviewed a wide range of entities and agencies identified by key informants committed to the health and well-being of Trenton residents. Across all wards of Trenton, we conducted interviews with individuals such as health care system administrators, clinicians, local business leaders, city officials, social service providers, and grassroots community-based organizations led by Black women and doulas who have left and come back to Trenton. As a way to maintain the anonymity and confidentiality of participants, the names of individuals and organizations have been removed or altered for this report.
Several culturally inclusive frameworks were used to design the project, and a mixed methods approach was implemented to assess social and structural determinants of health (i.e., economic stability, education access and quality, health care access and quality, neighborhood and built environment, and social and community context) by focusing on the needs and challenges, as well as the resources and assets within Trenton identified by Black women and their service providers.
The framework articulated by The Black Mamas Matter Alliance Research Working Group (BMMA 2019) was utilized to make recommendations based on the voices and stories shared by women in this environmental scan. The BMMA approach centers the ways in which Black and Brown women make meaning of their experiences, and importantly addresses system-level and structural challenges to providing optimal care for Black women. The framework centers its approach to applied research, evaluation, and practice in Birth Justice, Reproductive Justice, Human Rights, Black Feminism, Womanism and Research Justice. The authors assert that six domains comprise the best practices and guidelines for the conduct of research as well as implications for practice, that centers Black Mamas.
The MIH team based its recommendations for research and practice on findings from focus groups, interviews, and survey data and organized them using the BMMA’s six domains as a framework.
1: Recognize and Respect the Rights of Black Mamas
Foundational to respecting the rights of Black women is centering the skills, expertise, voices, and strengths they bring to the care of their health and their infant’s health as highlighted by a focus group participant:
“I don't feel like I've been listened to, like, I don't really get taken seriously when I say something's wrong. Like it's my body? How can you tell me when I'm not in pain? Or how can you tell me when I don't feel something like that? That Something's off? How can you tell me oh, it's just fine? It's my body. I know when something is wrong. So like, that's like, for me, that's the issue. Like I just get brushed off.”
Black women are the experts on their bodies and should be active participants in their own care.
• Make Black women’s personal experiences and perspectives the starting place for defining and providing access and quality care
• Engage Black women’s experiences/skills by hiring them on boards and steering committees
• Provide Black women, pregnant people and families care with dignity; giving them autonomy must become a standard of practice
• Include Black women’s experiences/skills at the decision-making level and in research design/implementation for broader knowledge and awareness
• Involve Black women and their communities/designated spokespersons in community/systems-level shifts in health care services
• Support Black women in advocating for themselves with groups of legislators and engaging with universities affecting policy at the societal and personal levels
2: Understand the Historical, Sociocultural, Political and Economic Contexts in which Black Mamas Live their Lives
A clear understanding of the multiple and intersecting identities of Black women should inform the approach and practice of care. As one example shared by a service provider, Trenton’s history as a hub for industries including clinical care services has significantly shifted over the past decade. These changes influence where women seek out care and develop trusted relationships with providers.
“In 2010, when there was a great layoff in Trenton…so we now rely on [Healthcare Provider 1] a lot for their services. After that layoff…it’s kind of hard to bring some of the programs back because we used to have [more] staff...”
Black women want to be accurately reflected in the care they receive from the images, cultural approaches and compassionate styles of care. The social, economic, and health challenges and needs identified by Black women, particularly trauma, also exist for service providers that are on the ground providing care. There are unique needs for women of color in Trenton, who include Spanish- speaking women, homeless women, teenagers and trans women.
• Build culturally responsive practices and accountability into local care systems
• Increase the number of culturally competent providers to help buffer the insensitivity and inequitable norms experienced in the Black community
• Offer long-term family mental health support
• Sustain supports for both Black women living in Trenton and the (primarily) Black women on the ground leading community-based organizations often using their own resources
• Integrate opportunities for groups with distinct needs (youth-led, spiritual leaders, male- focused)
• Provide trauma-aware and responsive care (both historical and personal/direct trauma)
• Create a space for community conversations to address needs with stakeholders
• Require anti-racist and cultural training programs for clinical providers and administrators
• Hold providers and systems accountable for biased and racist care
3: Invest in Black Women as Researchers
This entails the inclusion and investment of skilled and compassionate Black women in the practice of care, and the implementation of programs and research to improve optimal care.
“…it's I don't think that it's just the issue of race. I think it's an issue with compassion. It's just not there and it's just not there anymore. They need to teach them compassion in the same way that they teach anatomy, but they don't.”
Black women want to be actively engaged in creating and implementing solutions. Respondents in our focus groups and surveys were happy to be asked for their input and to be provided with information about reproductive health and other resources. They would like to hear more and be heard. Both Black women and service providers described a lack of empathy and compassion, reflected in the quality of and access to care. The social and economic challenges and needs, particularly trauma associated with economics and mental health, were expressed by both women and service providers.
• Engage Black women within the Trenton community in creating and implementing solutions
• Include youth and teens as advocates
• Ensure cultural representation of compassionate physicians and staff
• Include new technological approaches to communication through social media engagements
• Integrate community-based doulas and midwives to improve information access, advocacy and access to care as well as improve outcomes
• Include long-term involvement with trusted community-based providers in the advising, designing and implementing of locally responsive systems going forward
4: Fund and Conduct Ethical Research that Benefits Black Mamas
Sustainable infrastructures and processes are needed to fund and conduct ethical and asset-based research and practice of care. Residents are aware of inconsistencies in what service providers say and what residents see reflected in their community to support their health.
“I just don't think when you look at our world and look at all the structures that are in place, there's really a lack of consistency, right? You say you care about us, but you do something different. You say that you want things to be better for us or for our community. But there's not a lot around me that says that that matches what you're saying. So I think to me, that means it's not sincere it's not authentic.”
“It's like having all of these supports and having all these programs, and we don't have access to it, then what's the point?”
Not all supports provided are accessible and affordable.
• Create transparent decision-making processes that require accountability and sustainability
• Ensure third-party reimbursement for services through insurance/Medicaid
• Provide access to affordable and quality healthcare services including prenatal care, delivery services and postnatal care
• Support services for families including parents, other caregivers (like grandparents), partners, and children
• Offer free and sliding scale services
• Respect the village mentality, in part by including programs and training for extended families
• Provide financial and personal assistance through training and micro loans to launch and sustain businesses started by Black women and women of color (for example, assisting them in cases with high-interest debt, opening a business, and alleviating medical expenses)
• Integrate non-hospital based maternal and infant health services
• Offer integrated multiservice care in a single location
• Improve access to services through better options (cost, accessibility, proximity, safety, cleanliness) for transportation
• Address economic determinants of health by offering financial training to help families budget and amass wealth
• Conduct job training to help diversify the workforce and help community residents gain the skills needed to be competitive (including careers in healthcare)
• Explore options for free birth centers
5: Honor and Commit to Community Engagements through the Entire Research Process
Community engagement should be integrated into the approach to care. Black women are not seeking care even when it is offered by trusted Black sources. Similar to many community and health care providers, it was challenging to obtain participation in our focus groups. The COVID pandemic may have contributed to hesitancy on the part of Black women to engage in health-care related community engagement efforts.
They are also not coming in for services and care, likely due to the many challenges and needs that exist involving food insecurity, housing, transportation, racial discrimination and inequality.
• Build community capacity by addressing social, economic needs through - STEM education, job training and safe homes
• Start with priorities of basic needs, safety and security identified by focus group respondents
• Ensure continuity of funding streams that ensure ease in qualifying for support
• Utilize community ambassadors to engage the community and build trust
• Normalize the inclusion of community residents in the process of planning and design of the MIH Center programs from the beginning and make it very easy for them to attend by providing childcare, dinner and other incentives
• Increase support of existing programs that have positive relationships with women
• Support sustainable lifelong practices of culturally responsive care in Trenton by those familiar with and trusted by Black women and their communities
• Increase sustainable, Community-based Doula and Midwifery Care
• Include CBOs/grassroots groups at the beginning and not after the decisions and system changes have occurred
• Engage and empower women through active participation in CBOs
• Provide healthy incentives for women, children and infant for food and transportation
• Ensure ongoing support for providers who offer on-the-ground support to Black women
• Commit to transforming planning and decision-making processes to require community leadership input
• Build on women’s/communities’ networks of trusted resources
Although the scope of this study did not permit hearing from all communities and service providers in the Trenton reproductive health landscape, those we did hear from made it clear that a wealth of experience and knowledge exists in the Trenton community regarding birth equity and care needs.
6: Include Health Equity and Social Justice as Key Themes in Research
“It's almost like they're not trying to save our lives.”
Not all support provided is experienced as support. Service providers identify a wide range of services, resources, and supports throughout Trenton and surrounding areas, but Black women do not use or are unaware of them. This is at least in part due to a lack of continuity of care by trusted providers.
• Implement approaches and interventions that focus specifically on the experiences and challenges of Black women and women of color
• Provide communities with access to medically accurate reproductive health education, knowledge and information
• Support interactions that communicate trauma related to mental health and its stigma
Increase access to mental health support through telehealth options and health visits by providers
Provide continuity of funding for sustainable and integrated services
• Offer prenatal incentives and group practices to address postpartum depression
Spencer, Tirzah R. PhD, MPH; George Johnson, Barbara MPH, J.D.; and Bonillas, Consuelo, "Voices, Stories and Experiences of Black Women: Informing the Establishment of a Trenton-Based Maternal and Infant Health Innovation and Research Center" (2022). Center for Health Policy Development. 1.