When a baby is born, so is a parent: Understanding the effects of preterm birth on Black parents through the lens of the NIMHD Framework

Abstract

The rate of preterm birth is high in the United States and Black infants remain disproportionately affected. Although infant death rates overall have drastically declined since the 19th century, the disparity between Black and White infant deaths today is greater than it was under antebellum slavery. The National Institute on Minority Health and Disparities Research Framework reflects a unique set of determinants relevant to any health disparity. We have applied this framework to better understand the effects of preterm birth on Black parents and the distribution of the social determinants of health, including structural determinants and root causes of inequities. It is our hopes that this framework will be considered in developing future approaches to advance upstream structural solutions that can remediate and eliminate inequalities in preterm birth.

In this article, we aim to briefly describe how the experience of preterm birth (PTB) affects Black parents using the biological, behavioral, physical/built environment, sociocultural environment, and health care domains of influence. We will use the National Institute of Minority Health and Health Disparities (NIMHD) Research Framework (NIMHD, 2017) to conceptualize and illustrate the complex experience of Black mothers who have a preterm infant, to include structural racism as a determinant of maternal health, and to present a brief overview of policies and practices to address structural and social determinants of maternal and infant health. We will consider multiple factors across generations and their intersecting influence over a lifetime. Consequences of PTB extend to survivors in the form of chronic morbidities, which inevitably impact the life trajectory of the infant and their family and cause downstream effects throughout the community and society. Future interventions must recognize that genetic, environmental, social, and behavioral factors interact in complex pathogeneses and multiple pathways leading to PTB and ultimately shaping population health. There is an ongoing need for innovative research methods and new approaches for identifying aspects of structural discrimination and its association with health disparities and health outcomes. This article supports the National Institute of Nursing Research’s (NINR) mission of leading nursing research to solve pressing health challenges and inform practice and policy-optimizing health and advancing health equity into the future (NINR, 2022).

1. Definitions

health disparity	Healthy People 2030 defines a health disparity as a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion (Office of Disease Prevention and Health Promotion [ODPHP], 2020; Whyte et al., 2015).
health equity	Health equity is the state in which everyone has a fair and just opportunity to attain their highest level of health and well-being - a fundamental human right (CDC, n.d.; World Health Organization [WHO], 2023). Achieving this requires focused and ongoing societal efforts to address historical and contemporary injustices; overcome economic, social, and other obstacles to health and healthcare; and eliminate preventable health disparities (CDC, n.d.). Given that racism shapes the lives of people of color, Lee and Ford ascertain that it seems not only reasonable but necessary to study the hypothesis that racism influences health inequities (Gee & Ford, 2011). Our focus should turn to the multiple dimensions of racism, particularly structural racism, as racial minorities bear a disproportionate burden of morbidity and mortality (Gee & Ford, 2011).
social determinants of health (SDOH)	The World Health Organization (WHO) defines social determinants of health (SDOH) as conditions in which people are born, grow, work, live, and age (Commission on Social Determinants of Health, 2008). They are grouped into five categories: economic stability, education access and quality, healthcare access and quality, neighborhood and built environment, and social and community contexts (Department of Health and Human Services, 2020). SDOH affect people's health, well-being, and quality of life and can contribute to health disparities and inequities (ODPHP, 2020).
preterm birth (PTB)	WHO defines preterm birth (PTB) as a birth occurring before 37 completed weeks of gestation, or fewer than 259 days from the first date of a woman’s last menstrual period (Dbstet, 1977). PTB is one of the most important contributors to infant survival and subsequent health (Mathews et al., 2015).
structural racism	Structural racism refers to a systematic approach used by societies to influence laws and processes to foster racial discrimination through normalizing and unequally allocating systems of housing, education, employment, earnings, benefits, credit, media, health care, and criminal justice; and in turn reinforcing discriminatory beliefs, values, and distribution of resources (Bailey et al., 2017; Chambers et al., 2020; Ncube, Enquobahrie, Albert, Herrick, & Burke, 2016).
structural determinants of health	Structural determinants of health address the broader issues and include all cultural/societal norms, social/health policies, governing processes, institutions and systems of power that define the equal or unjust distribution of or access to SDOH in society (Crear-Perry et al., 2021; WHO, 2010).

2. Background

Preterm infants are born at a higher rate in the United States (US) than in 130 other countries of the world, including many poorer nations (WHO, 2012). Despite medical advancements, the PTB rate rose 4% in 2021 (Hamilton et al., 2022), resulting in 7,384 infants born preterm every week in the US (March of Dimes [MOD], 2022). Infants born prematurely are among those at highest risk for infant death. Black infants remain disproportionately affected, with 14.7% of births being preterm, compared to 10.2% Hispanic and 9.5% non-Hispanic White (Hamilton et al., 2022). Chronic stressors, such as racism, have been strongly associated with PTB and low birthweight (Braveman et al., 2017; Dominguez, 2008; Hudson et al., 2013). In the US, these persistent rates of PTB with profound Black–White disparities in PTB have persisted for decades, insinuating that not all racial and ethnic groups have benefited equally from social and medical advances (MacDorman & Mathews, 2011). Black infant PTB rates are highest in the southeastern region of the US, with South Carolina (SC) placing fourth in the country, only behind Alabama, Mississippi, and Louisiana (MOD, 2022). PTB is the leading cause of infant morbidity and mortality (Shapiro-Mendoza et al., 2016) and presents an emotional burden for families. PTB requiring neonatal transport is marked by sudden and unexpected events and is frequently associated with increased parental stress, anxiety, and depression during and after admission to a Neonatal Intensive Care Unit (NICU) (Cyr-Alves et al., 2018; Garfield et al., 2021; Hall et al., 2020; Pichler-Stachl et al., 2011; Simon et al., 2021). Given that PTB is associated with long-term cognitive developmental child and adult health issues, it is imperative to understand factors associated with these disparities (Farooqi et al., 2016). Structural racism through health care, both in quality and access, can also produce adverse health effects (Hardeman et al., 2016; Krieger, 2014). Many social determinants result from structural determinants and play a fundamental causal role in poor health outcomes. Social inequality is linked to health inequality and has persisted over time (Phelan et al., 2010). A deeper understanding of the distribution of the SDOH, including the structural determinants of health and root causes of inequities are needed as disparate health outcomes remain (Crear-Perry et al., 2021).

South Carolina, which is the location of our research team, serves as a case study for examining the excess burden of death and quality of life experienced by Black women and infants when compared to the rest of the nation; making this an ideal population for studying racial health disparities. SC has abysmal rates of maternal mortality, the eighth highest in the country, with 32.7 per 100,000 live births resulting in maternal loss (Ely & Driscoll, 2024). Comparisons among races show 42.3 mortalities (per 100,000 live births) among Black mothers compared to 18.0 among White mothers (SC Maternal Morbidity and Mortality Review Committee, 2021). SC has a high infant mortality rate (7.3 per 1,000 live births), where 415 infants will die before reaching their first birthday (MOD, 2022). Clear disparities exist here as well, where Black infants are almost two and a half times as likely to die during their first year of life (during 2019–2021) as White infants (MOD, 2022). The greater distance a woman travels to access high-quality maternity care, the greater the risk of adverse outcomes, in both mother and infant-especially in the case of emergencies (Minion et al., 2022). In SC, 0% of providers giving maternity care practice in rural counties, yet there were almost 1,500 babies born in these maternity care deserts in 2022 (Fontenot et al., 2023). To adequately study health disparities in Black mothers with preterm infants, a comprehensive theoretical framework is needed.

3. Framework for Health Equity

3.1. National Institute of Minority Health and Health Disparities Framework

Although SDOH are critical components, scientific advances suggest additional determinants need to be considered in multilevel analyses to fully understand the contributors of health disparities. The NIMHD Research Framework (NIMHD, 2017) was developed in 2015 as part of the “NIMHD science visioning process”. It reveals an evolving conceptualization of factors relevant to the understanding and promotion of minority health and the understanding and reduction of health disparities (Alvidrez et al., 2019). NIMHD defines minority health as “all aspects of health and disease in one or more racial/ ethnic minority populations” (NIMHD, 2017). The National Institute on Aging (NIA) health disparities research framework (Hill et al., 2015) was coupled with the socioecological model (Bronfenbrenner, 1977) to cast the Framework. It ultimately expands the NIA framework by considering and depicting the vast array of determinants according to levels of the socioecological model that may cause, sustain, or reduce health disparities. The socioecological model assumes that health and human development are influenced by factors from the individual to the societal level (Bronfenbrenner, 1977), and focuses on the nature of people’s transactions with their physical and sociocultural environment (Stokols, 1992). Environmental and policy levels of influence consider the broader community, organizational, and policy influences on health behaviors (Sallis et al.,2015). The health care system is an additional domain that was added due to its role in shaping the SDOH (Alvidrez et al., 2019). This combination results in five domains of influence among four levels (in 20 cells) that each reflects a unique set of determinants shaping any minority health outcome or health disparity (Alvidrez et al., 2019). See Table 1.

Table 1.

Adapted Framework

NIMHD FRAMEWORK ADAPTED FOR PARENTS OF BLACK PRETERM INFANTS
		LEVELS OF INFLUENCE
		Individual	Interpersonal	Community	Societal
		RACISM & DISCRIMINATION
DOMAINS OF INFLUENCE	Biological	Life exposure to risks Age Gender Race/Ethnicity Morbidities Delivery Stress/Anxiety/Depression	Bonding Breastfeeding Perceived needs	Illness exposure (HSV, CMV, HIV, Rubella) Prenatal access	Immunization Exposure to pathogens Sanitation
	Behavioral	Beliefs regarding medical care Prenatal care Coping strategies Substance use Health-promoting behaviors	Caregiver identities Counseling Family stress Family functioning School & work functioning	Social support Community norms	Mental health laws Societal norms/Values/Traditions
	Physical/Built Environment	Transportation Employment Home stability External environment	Household environment School/work environment Family dynamics Single motherhood	Ronald McDonald House Public transportation Rural status Segregation/deprivation	Paid maternity leave Workforce structure Societal structure Redlining
	Sociocultural Environment	Income Education Occupation status Social support Discrimination response	Social networks Social cohesion School/work functioning Family role expectations	Community resources Religion Cultural trends	Health education policies Structural discrimination
	Health Care System	Insurance coverage Lack of access Treatment preferences Health care literacy Past experiences	Patient-clinician relationship Medical decision making Clinician bias	Transport regulations Unjust distribution Hospital Outreach Referral services Availability of services	Quality of care State investment Advocacy programs State perinatal laws Insurance programs American Rescue Plan Act of 2021 Blueprint for Addressing the Maternal Health Crisis
Health Outcomes		Individual Health	Family Health	Community Health	Population Health

Reconstructed from: National Institute on Minority Health and Health Disparities (2017).

NIMHD research framework. https://nimhd.nih.gov/researchFramework and extended with data from Hinton, E., & Diana, A. (2024). Medicaid authorities and options to address social determinants of health. KFF. https://www.kff.org/medicaid/issue-brief/medicaid-authorities-and-options-to-address-social-determinants-of-health-sdoh/

The NIMHD framework offers a rich and layered understanding of how health develops, focusing on health equity and underscoring the magnitude of a life course perspective (Fine & Kotelchuck, 2010). There is a distinct understanding that SDOH can influence health at multiple levels throughout the life course. It is the combination and accumulation of variables on health in dimensions of both time (critical stages in the life course and the effects of cumulative exposure) and place (multiple levels of exposure) (Blazer & Hernandez, 2006).

3.2. Application of the NIMHD Framework on the Experience of Mothers Who Have Black Preterm Infants

Health results from not only our biological composition but also our mental and social well-being and behaviors. These are largely shaped by access to resources, social connectedness, societal norms and prevailing social perceptions, policies and laws, the natural environment, and even historical policies and practices (Crear-Perry et al., 2021; Hardeman et al., 2016; Hodgkinson et al., 2017; Roach, 2016). Health disparities are an embodiment of our circumstances.

Racism shapes the lives of people of color, and it is therefore necessary to study the hypothesis that racism influences health inequities (Gee & Ford, 2011). The deleterious psychological effects systemic racism and discrimination have exerted have been well documented (Bailey et al., 2017; Braveman et al., 2017; Chambers et al., 2020). Research into racism as a psychosocial stressor suggests that, over time, such stress can lead to physiological changes that make the body more susceptible to disease (Geronimus, 1992) and accelerate biological aging (Simons et al., 2021). During pregnancy, mothers may pass on stress-related symptomatology to the fetus in utero (Yehuda & Bierer, 2009).

PTB is complex, multifactorial, and determined by multiple environmental and genetic factors (Hodgson & Lockwood, 2010). Individual-level risk factors cannot fully explain the persistent racial disparities in PTB. Numerous maternal health factors across the framework domains and levels of influence intersect and overlap with infant individual health factors. By their very nature, each cell in the NIMHD framework interacts with at least one other cell to precipitate adverse health outcomes. A number of factors have been hypothesized to explain the persistent disparity in Black infant PTB and mortality, including underlying genetic variations, stress, and many of the SDOH, such as lack of access or inadequate healthcare, neighborhood contexts, and even the father’s educational status (Braveman, 2008; Collins et al., 2004; Green & Hamilton, 2019; Hilmert et al., 2014; Howell, 2018; Scott et al., 2020). Most Americans live in built environments that do not encourage physical activity and often live in racially segregated communities. Black women are more likely to live in disadvantaged neighborhoods (Zuberi et al., 2016), have lower earnings per year, experience higher poverty rates, and are more likely to be the head of household than their White counterparts (Chinn et al., 2021).

Beyond interpersonal discrimination, exposure to structural racism and discrimination via residential segregation and neighborhood-level poverty has been suggested as an explanation for the high rates of PTB among Black women in the US, with studies showing a twofold higher risk (95% CI [1.48, 2.54]) for adverse birth outcomes among Black compared to White mothers (Mehra et al., 2017). An exploratory study on mortgage discrimination, known as redlining, found that PTB rates were higher for Black women in redlined areas, identifying living in these areas as a risk factor for PTB (Matoba et al., 2019). Recent studies have shown associations between higher instances of police contact and PTB (Hardeman et al., 2021; Jahn et al., 2023). These same studies found a greater exposure to police presence in predominantly Black neighborhoods, suggesting disproportionate targeting and racialized police patterns born from a history of structural racism in the US.

Although social determinants may be a contributing factor, the underlying mechanism for these disparities is poorly understood. Research findings demonstrate that health disparities exist even in studies that control for socioeconomic factors, without poverty, and with high education and adequate access to care and insurance coverage (Kistka et al., 2007; Nepomnyaschy, 2009; Newman et al., 2006).

Environmental justice researchers and advocates have brought attention to environmental pollution at the neighborhood level, where most marginalized and minoritized communities experience a disproportionate burden of pollution-related disease and adverse health effects. For instance, although overall public health harm attributed to ambient nitrogen dioxide and fine particulate matter has decreased in the last decade, racial and ethnic disparities have widened- as the least white communities in the US faced higher concentrations, which were attributable to pediatric asthma and premature mortality (Kerr et al., 2024). The Environmental Protection Agency (EPA) has identified more than 1,300 sites around the nation that pose a health risk because they have been so contaminated by hazardous waste that they have been deemed a national cleanup priority (US Environmental Protection Agency [EPA], 2023). The EPA has taken charge of site cleanup under law with the nickname “Superfund” since 1980, using federal, state, or responsible party funds to clean up the worst of these sites. The National Priorities List (NPL) ranks these hazards according to how toxic the site is- if it poses profound human health and environmental implications, and includes 28 sites in the state of SC (EPA, 2024). The program has raised suspicions due to the disproportionate number of Non-White and low-income populations that may not be benefiting from cleanup efforts. A study conducted in SC showed that minorities, people experiencing poverty, and those who have less than a high school education may have a greater risk of being exposed to Superfund-related contamination (Burwell-Naney et al., 2013).

3.2.1. Structural Racism Considerations as a Determinant of Maternal Health

Past efforts to identify root causes of maternal health inequity have focused on Black mothers and families compared to those of their White counterparts and their everyday social and economic circumstances, and experienced risk factors which reflect actions of the individual typically adopting narratives of personal responsibility and blame. The truth is that individuals are unable to directly control many of the upstream determinants of health: social disadvantage, governance, health policy, and the cultural or societal norms and values that shape access to health-promoting resources and opportunities. Due to a growing interest in understanding how social factors drive poor health outcomes, there have been recent efforts to examine the broader historical context, and the systematic, structural and political forces that created them to identify root causes of maternal health inequities.

Many of the social and political structures and policies in the US were born out of racism, classism, and gender oppression. Structural racism through health care, both in quality and access, can also produce adverse health effects (Hardeman et al., 2016; Krieger, 2014). The “foundation of institutional policies and practices that create and reinforce inequalities” was visible in the 1800s when gynecology was born as a medical specialty, without consent or any protection of human subjects in research, where Black women were actively harmed in unethical experimentation and forced sterilization (Chinn et al., 2020). They faced discriminatory treatment and unequal access to care which led to a system where their reproductive lives were not their own, resulting in a lack of trust in the provider-patient relationship. Deirdre Cooper Owens, a historian a reproductive justice advocate, posits “Pioneering medical men…were heirs to a legacy left by a long line of older southern physicians and scientific researchers who relied on enslaved black bodies to find cures for ailments that afflicted all races” (Owens, 2017, p. 25).

In a recent Web of Causation framework developed by Roach in 2016, SDOH are identified as being influenced by structural determinants of health—such as slavery, Jim Crow laws, the 13th Amendment, the GI Bill and “redlining” (Roach, 2016). This unique socio-structural relationship has interconnected pathways and grounding of racialized norms that are a key determinant of disparate outcomes in Black maternal and infant mortality rates (Crear-Perry et al., 2021; Roach, 2016). Disadvantage begins in the earliest points in life, which is exemplified by the inequities in Black infant mortality rates (Dominguez, 2008). Although infant death rates overall have drastically declined since the 19th century, the disparity between Black and White infant deaths today is greater than it was under antebellum slavery. Historical estimates from 1850, calculate that enslaved infants (before one year of age) died at a rate 1.6 times higher than that of White infants (340 vs 217 deaths per 1000 live births) (Haines, 2008). In comparison, Centers for Disease Control and Prevention figures from 2021 show that today Black infants die at a rate 2.4 times higher than that of White infants (10.55 vs 4.36 deaths per 1000 live births) (Ely & Driscoll, 2023). See Figure 1. Past and present experiences with racial discrimination shape Black patients’ interactions with their medical providers, and stereotypes, implicit bias, and mistrust continue to interfere with care. This disadvantage is compounded by poor treatment and negative experiences within the healthcare system (Chinn et al., 2020). Research that seeks to further clarify the web of causation with a focus on structural racism (Roach, 2016) is essential to advance health equity and improve population health.

Figure 1.

Infant Deaths in 1850 vs 2021 SOURCE: Haines, M. (2008). Fertility and mortality in the United States. In R. Whaples (Ed.), Net Encyclopedia, Economic History Association.

SOURCE: Ely, D. M., & Driscoll, A. K. (2023). Infant mortality in the United States, 2021: Data from the period linked birth/infant death file. National Vital Statistics Reports: From the Centers for Disease Control and Prevention, National Center for Health Statistics, National Vital Statistics System, 72(11), 1–19.

4. Special Considerations for Neonatal Transport

Many preterm infants born at a local community hospital will require transport to another hospital with a NICU after birth for optimal care and survival. NICUs are classified based on their capabilities into levels by the American Academy of Pediatrics (AAP) (AAP, 2012). Sometimes known as Newborn Nurseries, Level I centers provide basic care for infants born at >35 weeks’ gestation. Level II centers are frequently known as Special Care Nurseries and provide specialty care to infants born ≥32 weeks’ gestation and weighing ≥1500 g. Level III and IV NICUs provide critical, comprehensive care for infants born <32 weeks’ gestation and weighing <1500 g, as well as infants born with any critical illness. These NICUs also facilitate transport and provide outreach education. Research consistently shows improved outcomes for VLBW infants and infants <32 weeks’ gestational age that are born in level III centers (Barfield et al., 2012; Chang et al., 2021).

In the US, more than 9 percent of all live births are admitted to a NICU (Kim et al., 2021) and with the regionalization of perinatal care, almost 70,000 infants a year require transport to these NICUs (Gisondo & Stanley, 2020). Neonatal transport can put preterm neonates at risk for complications compared to being inborn at a hospital able to provide the appropriate level of delivery and immediate care (Helenius et al., 2019; Shipley et al., 2019). The gamut of scholarly research on neonatal transport has focused primarily on procedural interventions or practices and stabilization time (Bellini et al., 2019; Diehl, 2018; Hu et al., 2018; Japp, 2019; Kunz et al., 2020; McNellis et al.,2019; Moody et al., 2019; Whyte & Jefferies, 2015), with fewer studies focused on infant outcomes (Redpath et al., 2020; Tette et al., 2020). There has been a scant amount of research focused on understanding the effects of transport on parents (Sommer & Cook, 2015; Yui & October, 2021).

The state of SC is divided into five perinatal regions, allowing no more than one Regional Perinatal Center in each region (Department of Health and Environmental Control, 2018). See Figure 2. While the regionalization of care has resulted in improved neonatal outcomes, the consequence is an infant may be hospitalized in a NICU over one and a half hours distance from a parent’s home. Parents of a preterm infant are at risk of experiencing adverse outcomes partly because of the delayed initiation of the caregiver identity due to their infants’ hospitalization (Burnham et al., 2013; Chen et al., 2016). The separation of mother or father and infant may impact infant attachment and have emotional and psychological consequences affecting long-term well-being (Mosher, 2013). High levels of stress can manifest as anxiety, postpartum depression, sleep disturbances, or feelings of grief or helplessness (Al Maghaireh et al., 2016). These consequences can be exacerbated when compounded with other SDOH. Many people face barriers that prevent or limit access to needed health care services, which may increase the risk of poor health outcomes and health disparities (Byrd & Clayton, 2003). These same barriers also prevent parents from visiting and interacting with their child in the NICU, which may be of some distance due to the transport. Inconvenient or unreliable transportation itself has been shown to contribute to adverse health outcomes (Syed et al., 2013). A holistic understanding of the major sources of stress may suggest where interventions affecting parent-child interactions could lead to better long-term outcomes.

Figure 2.

SC Perinatal Regions Map. Reconstructed from South Carolina Area Health Education Consortium (2021). 2021 South Carolina Health Professions Data Book, 77–81. https://www.scahec.net/scohw/data/reports/136-SCOHW-Data-Book-2021.pdf

Racial and ethnic disparities have been reported for in-hospital care practices among preterm infants (Boghossian et al., 2020; Boghossian et al., 2019; Gulersen et al., 2020; Profit et al., 2017). Recent studies have also exposed segregation across NICUs in the US for racial groups and regional variation (Boghossian et al., 2019; Horbar et al., 2019; Howell et al., 2019). Furthermore, in a recent study, Witt et al. found Black mothers of preterm infants experienced racism during NICU hospitalization that impacted the quality of care their infant received (Witt et al., 2022). Racism leads to disparate quality of NICU care contributing to disparities in preterm infant health outcomes. These inequities alter the lifetime trajectory of infants’ and their families’ well-being and create widespread ripple effects within their communities (Reichman et al., 2021). Racial differences in outcomes of transported infants has not been explored extensively but may be an area of future consideration as we seek to better understand racial disparities in preterm infants.

5. Overview of Policies and Practices to Address Structural and Social Determinants of Infant and Maternal Health

Paid parental leave policies have the potential to influence health over the life course. Previous cross-national studies that examine the effects of paid parental leave indicate that it contributes to fewer low birthweight infants (Stearns, 2015) and lowered rates of infant mortality, largely in the post neonatal period (Shim, 2016; Tanaka, 2005) and a lower child mortality measured in the first 5 years of life (Tanaka, 2005). Studies also cite a longer parental lifespan (Månsdotter et al., 2006) as well as improved mental health for those with family-friendly leave policies as compared to those without parental leave (Aitken et al., 2015), associating longer leaves with reductions in depressive symptoms (Chatterji & Markowitz, 2012).

Today in the US, no federal law mandates a single paid day off for parental leave. The 1993 Family Medical and Leave Act only provides for unpaid leave (Liang, 1993) to workers and that is dependent upon eligibility criteria. The Bureau of Labor Statistics shows that more than three in four (76 percent) of private sector workforce employees do not have access to paid family leave (U.S. Department of Labor, 2022). In the absence of a federal policy, states have enacted paid family leave, sick time, and paid time off policies. Currently, eleven states plus the District of Columbia have policies in place for paid family and medical leave (Boyens et al., 2022). South Carolina is not one of these states. However, on May 13, 2022, the Governor of SC signed into law an amendment which provides six weeks of paid leave for full time state employees for the birth or adoption of a child (SC Department of Administration [SCDOA], 2022). This leave is also guaranteed for part-time state employees on a prorated basis corresponding to the percentage of hours they are normally scheduled to work (SCDOA, 2022). This victory makes SC is only one of three southern states to guarantee paid parental leave for state employees. As of 2019, public sector workers receiving state benefits make up 16.4% of SC’s workforce population (U.S. Burea of Labor Statistics, 2024).

Racial and ethnic inequities in access to paid parental leave has received little attention, where only a small body of examining research exists. A recent study in the San Francisco Bay area found that compared to their White counterparts, Black and Hispanic women may be less likely to be eligible for paid leave programs, which exacerbates racial inequities at birth (Goodman et al., 2021).

Importantly, leave policies can also be a barrier for the provision of breastmilk. Research has consistently shown provision of human milk is critical for very low birth weight (VLBW; ≤1,500 grams) infants and represents a modifiable factor that can offset many adverse health outcomes and confer numerous health benefits (Carome et al., 2021; Corpeleijn et al., 2012; Parker et al., 2021). However, substantial regional and racial/ethnic disparities in the provision of human milk exist. VLBW infants born in the South have the lowest prevalence of human milk provision at discharge and were least likely to provide any human milk at hospital discharge, even when accounting for demographic factors such as race/ethnicity, and medical vulnerabilities, such as birthweight and gestational age (Parker et al., 2019). When accounting for regional variations by race/ethnicity, the study found that of those infants born in the South, human milk provision was lowest among Black and American Indian/Alaska Native populations. This finding is particularly alarming given that PTB is highest in the South compared with other US regions (MOD, 2018). Another study of over 13,000 infants who were receiving human milk also found that among the extremely preterm age group (20–27 weeks’) human milk provision was lowest among Black infants compared with other racial/ethnic groups (Chiang, 2019).

In SC, about 46% of infants received any human milk, and only 19% received human milk exclusively, which is 20% lower than the national average (CDC, 2022). When we consider disparities by race, only 66.0% of Black infants initiate breastfeeding compared with 82.8% and 90.6% of white and Asian infants (Chiang et al., 2019). Researchers found evidence showing that parental leave policies can positively increase breastfeeding and/or access to breastmilk in California after the state implemented the nation’s first partially Paid Family Leave program. Here, exclusive rates of breastfeeding increased, as well as breastfeeding or pumping at several important markers of early infancy (Huang & Yang, 2015), supporting the recommendation of the Surgeon General to establish paid leave policies as a strategy for promoting breastfeeding (U.S. Department of Health and Human Services, 2011).

The AAP recommends donor human milk based on medical necessity for high-risk (including VLBW) infants when mother’s milk is insufficient in quantity (Abrams et al., 2017), less than half of US states have passed regulations addressing donor human milk for Medicaid or commercial insurance coverage (Rose et al., 2022). In 2021, SC advocated for and introduced legislation for donor human milk coverage, but at the time of publication, it has yet to be enacted (Newborn Health Insurance Coverage Requirements, 2021). However, some individual Medicaid programs in the state have developed clinical policies to cover donor human milk for children with certain health conditions (Select Health of SC, 2018).

The US Agency for International Development cites breastfeeding with one of the highest returns on investment with every dollar invested in breastfeeding yielding an estimated $35 in economic gains (US Agency for International Development, n.d.). In the US, breast pumps provided by government programs are impractical and typically do not meet minimum criteria of effectiveness, efficiency and comfort required for breast pump dependency (Johnson et al., 2022). High-quality, hospital-grade electric breast pumps that do meet these criteria are available, but the mother is often required to pay out-of-pocket for the rental costs (Johnson et al., 2022). Additional costs are incurred to transport maternal breastmilk pumped in the home to the NICU, and transported infants can be of a far distance from home. This may pose transportation barriers, as Black mothers are less likely to have access to a car than non-Black mothers (Duque et al., 2018; Riley et al., 2016). Variations in racial/ethnic disparities at the regional and state level suggest that public health initiatives and policies focused within these units may represent optimal strategies to address this important issue (Parker et al., 2019).

5.1. Recent Legislation to Improve Outcomes

Expanding access to health services is an essential step toward reducing health disparities. According to the SC Maternal Morbidity and Mortality Review Committee, 80% of pregnancy-related deaths occur between the mother giving birth and one-year postpartum, with 66% occurring between birth and 43 days (SC State Documents Depository, 2022). The SC Department of Health and Human Services Medicaid program provides health care benefits to more than 1.2 million South Carolinians (SC Department of Health and Human Services [SCDHHS], 2022a).

In June 2022, the Biden Administration released the Blueprint for Addressing the Maternal Health Crisis, recognizing the higher death rates from pregnancy-related causes than in any other developed nation and the disparities among Black women (White House, 2022). The Blueprint contains five goals and 50 corresponding actions for agencies to undertake to help improve maternal care, recognizing that this could only be achieved if we dismantle systemic racism in our health care system. Two of these goals include increasing access to and coverage of comprehensive, high-quality maternal health services and strengthening economic and social support for people before, during, and after pregnancy.

Recent federal legislation via the American Rescue Plan Act of 2021 has expanded access to and helped stabilize Medicaid coverage during the postpartum period. SC has created a spending plan for implementation, which includes extending full Medicaid benefits from 60 days to 12-months postpartum (SCDHHS, 2022b). The state has also expanded eligibility and increased access to waivers for home care-based services, including the medically complex children program, which serves children up to 18 with chronic health conditions (SCDHHS, 2022b). Despite recent coverage gains, there still exist areas for improvement. Medicaid has a long history of serving pregnant women, but many women are not eligible for Medicaid before pregnancy or after the postpartum period. A study published in 2021 found that despite recent coverage gains, 26.8 percent of new mothers with Medicaid-covered prenatal care were uninsured before pregnancy (Johnston et al., 2021). Better health coverage is important as it has been established that the strong connection between the health of a mother and her baby begins well before pregnancy and continues well after childbirth (Dubay et al., 2020). Preconception coverage can help women prevent unintended pregnancies and may improve management of chronic conditions before women become pregnant. After delivery, postpartum coverage can also improve chronic condition management and increase access to care needed to recover from birth, potentially preventing late maternal deaths and improving overall health and well-being for mothers and their children (McKinney et al., 2018).

6. Conclusion

The NIMHD Health Disparities Framework posits how health trajectories are affected during critical or sensitive periods in time and over the life course with pathways and processes that are modifiable (Fine & Kotelchuck, 2010). In maternal and infant health specifically, the factors driving disparities are complex and multifactorial. There is an intersection between maternal health and experiences that shapes infant outcomes. Moreover, disparities often have racism or its downstream logistical consequences as a root cause of poor health outcomes (Bailey et al., 2017; David & Collins Jr, 2021).

We have used the NIMHD framework to present a broad, yet not exhaustive representation of the many factors relevant to understanding and promoting the health of Black mothers who have a preterm infant. In our efforts to eliminate disparities in PTB, it is imperative that we take a holistic and integrative approach to continue to study the underlying mechanisms and develop targeted interventions where socio-economic policies and cultural patterns are also taken into consideration. We adapted the preexisting domains of influence to fit our population while further considering the interplay between the structural and SDOH over the life course. The adapted framework offers a rich and layered understanding of how health develops across the life course and in more extensive interconnected societal resources, community networks, and at all levels of governance, while considering the root causes of health inequities. It is our hopes that this framework will be considered in developing future approaches to advance upstream structural solutions and better delineate causal pathways for the analysis and development of interventions that can remediate and eliminate inequalities in PTB and promote health equity to protect present and future generations.

Highlights.

• Black infants remain disproportionately affected by preterm birth

• SDOH influences health at multiple levels throughout the life course

• Structural racism in quality/access of health care produces adverse health effects

• Upstream structural solutions are needed to eliminate inequalities