Black Mothers’ Experiences of Having a Preterm Infant: A Scoping Review

Abstract

Black mothers with preterm infants face unique challenges during their stay in the NICU and after discharge. Racism-related barriers impact access to care for Black preterm infants. Understanding their experiences in caring for preterm infants is crucial to developing equity-focused interventions to address racism in the NICU and promote Black preterm infant health outcomes. The purpose of this scoping review is to shed light on Black mothers’ experiences of having a preterm infant. A search was conducted in CINAHL, Medline, Maternity and Infant Care, and Google Scholar. A total of 287 articles were retrieved and screened. Twelve (12) articles included in the final review were from the United States. The findings highlight the need to address racism among healthcare providers in the NICU through training and education. Gaps in understanding the experiences of Black parents with preterm infants from other Western contexts remain and require further research.

1. Introduction

1.1. Background

Preterm birth (PTB), defined as a birth occurring before 37 completed weeks of gestation, is the leading cause of neonatal morbidity and mortality around the world, accounting for approximately one million deaths per year [1,2]. Infants born preterm present with significant health issues that contribute to long-term neurocognitive and developmental delay [3,4], and these in turn placed considerable emotional and financial burden on parents, affecting their overall health and wellbeing [1]. Despite advances in prenatal and perinatal care, disparities in PTB exist across and within countries [5,6,7]. For example, the rate of PTB is higher among Black women when compared with their White counterparts [5,8]. Complex socio-environmental factors, including racial discrimination, neighbourhood disadvantage, low socio-economic status, limited social support, and stressful life circumstances, have been attributed to the increased risk of PTB among Black populations [8]. These factors continue to exist after PTB and significantly influence the well-being of families and the developmental outcomes of preterm infants.

PTB is an inherently stressful event for parents and families [9,10,11]. The sudden and unplanned nature of PTB along with the constant worry about the infant’s health, feelings of guilt, and disruption of the feeding routine, can be detrimental to mothers’ emotional state and well-being [11,12]. Uncertainties and fear of losing the preterm infant in addition to making complex decisions about infant treatment options add to the emotional toll experienced by mothers [13,14,15]. Studies from the United States have shown that existing racial disparities in the Neonatal Intensive Care Unit (NICU) adversely affect preterm infants’ health outcomes and contribute to negative experiences of Black mothers during hospitalization [16,17,18]. The experience of discrimination in accessing healthcare further undermines trust and complicates the care for a preterm infant [19,20]. Research also shows that many parents with preterm infants have limited support during their stay in the NICU and are left without access and support once they are discharged and transition home [21]. Where support is available, it does not take into consideration the social complexities and nuances that may be unique to some Black families, including experiences of stigmatization and discrimination [22,23,24].

The stress of caring for a preterm infant impacts the mother’s mental health in the postpartum period, affecting the mother’s responsiveness to infant needs and ability to engage in infant caregiving [25]. Overall, the emotional and psychosocial challenges may undermine coping and parental well-being and are likely to affect Black mothers and other caregivers disproportionally. Existing structural inequalities such as racism, classicism, and sexism are likely to exacerbate challenges for Black families with preterm infants, undermine their resilience and coping, and threaten the care and development of Black preterm infants [5,8]. Together with the lack of awareness and availability of community resources, these factors may result in fragmented follow-up care, contribute to services not meeting the social and cultural needs of Black families, and interfere with successful transition after discharge. It is therefore crucial to identify and address the unmet needs of Black mothers and other caregivers to support and promote their well-being. While research on risk factors associated with PTB among Black women is well-documented, there is limited understanding of the experiences and challenges they face following PTB, including NICU hospitalization and transition to home.

1.2. Objective and Research Question

Based on the unique challenges that some Black mothers face, this scoping review aims to synthesize and summarize current evidence about their experiences during NICU hospitalization and transition to home. Given this insight, the following research question was used to guide the scoping review: What are the experiences of Black mothers with preterm infants during NICU stay and after discharge?

2. Results

2.1. Characteristics of the Studies

Twelve studies were relevant and included in this scoping review. All 12 studies were conducted in the United States [26,27,28,29,30,31,32,33,34,35,36,37]. This highlights the significant dearth of research that focuses solely on Black parents’ experiences in other developed countries. Nearly all studies used a qualitative design, with only one study being quantitative [37]. Given the paucity of research among this population, we included two dissertations in this scoping review [28,36]. The articles included in this review focused on mothers’ experiences in the NICU, quality of care, infant feeding, transition readiness, social support, and stress.

2.2. Lack of Parental Engagement in NICU

Six studies reported that Black mothers found communication and information sharing in the NICU to be inconsistent, delayed or insufficient [26-28,30,32,37]. Inconsistent information from NICU staff threatened to compromise trust, thus necessitating NICU parents to corroborate the information or updates they received concerning their infant’s health [28]. Mothers were not informed in a timely manner of medical procedures or updated on their infants’ condition, creating tension and difficulties in parents being involved in their infants’ care [27,35]. Healthcare providers perceived Black mothers as unable to fully understand the changing medical conditions of their preterm infants and the complexities of their care, resulting in their exclusion during critical decision making [35]. Communication issues affected information sharing with mothers, which in turn created a sense of alienation and exclusion, leaving the mothers feeling unprepared to transition home [28,30,35]. Furthermore, the inherent nature of the NICU environment also served as a barrier to communication as the use of medical jargon to communicate with Black families contributed to mothers feeling overwhelmed and having unmet information needs [26,28,32,34]. The lack of communication and information sharing left Black mothers feeling powerless and compelled them to search the internet or seek support from online groups [34]. Conversely, in situations where the NICU staff encouraged and supported Black mothers’ role as partners in the care of their preterm infants, mothers reported a boost in their confidence and ability to take part in decision making in the NICU [35].

2.3. Racism in the NICU

Six studies reported that Black mothers encountered both covert and overt forms of racism during their stay in the NICU [26,28-30,34,35]. Black mothers felt that their interactions with White healthcare providers in the NICU were dominated by power relations, hindering their ability to express themselves and be involved in their infant care decisions. Reports of power imbalance and under-representation of Black healthcare providers in the NICU contributed to discriminatory and unfair treatment, which negatively affected mother–healthcare provider interaction and reinforced an atmosphere of mistrust [28,29,30]. Many felt judged and stereotyped by the NICU nurses [26,29,33]. In one study, a mother indicated that a NICU nurse made an assumption suggesting that Black baby girls are able to survive in the NICU regardless of the care [29]. Such stereotypical labelling assigned to Black babies resulted in the needs and concerns of Black babies being dismissed and ignored by healthcare providers [26,34,35]. For example, Black mothers reported facing dismissive attitudes from NICU staff when requesting pain relief treatment for their infants [34,35]. Regardless, Black mothers were motivated to fiercely and relentlessly advocate for their infants’ health in the NICU to minimize the detrimental impacts of racism on their infants [29,31,33]. An attitude of judgment, manifested in the subtle lack of empathy, was a common distressing experience for Black families while in the NICU [31]. These experiences contributed to some Black mothers resorting to transfer to another hospital where their medical concerns would be heard [33].

Four studies also reported on the lack of diversity and representation in the NICU staff, which contributed to a tense atmosphere, decreased interaction of mothers in the NICU, intensified mistrust and led to fear of being mistreated [26,28,29,34]. Conversely, having Black healthcare providers in the NICU yielded a sense of belonging, increased connection, and promoted an overall positive experience [34].

2.4. Stress of Transitioning Home

Five studies reported on the uncertainty that Black mothers faced when transitioning home [27,30,32,33,35]. Limited involvement of mothers in the care of the preterm infant during hospitalization affected maternal confidence when transitioning from the NICU to home [30]. Being the parent of a preterm infant became an overwhelming experience that involved not only meeting the physical needs of the preterm infant but also enduring the emotional aspects of the infant’s changing state and prognosis [27,33,35]. The fragility of the preterm infant provokes intense fear and complicated caregiving and mother–infant interaction [30,34,35]. For example, the susceptibility of infants to illness and implementing strict infection control measures in their attempt to duplicate a NICU environment left mothers feeling stressed and overwhelmed [27,32]. Concerns over the preterm infant’s health and prognosis, future development, safety, and survival exacerbated feelings of uncertainty and intensified mothers’ mental health vulnerability [30,32,33]. Fragmented and hasty discharge processes and information not meeting the needs and expectations of mothers resulted in feelings of being unprepared to take care of their babies at home [31]. The reality of transitioning home and becoming the sole provider for a preterm infant was also a stress-inducing experience leading to a heightened state of anxiety [28,31,37].

The stress related to parental role alteration left Black mothers feeling excluded and less involved in their infant’s care [32,33,36,37]. Balancing personal responsibilities and the needs of their preterm infants along with employment, household duties, and caring for other children was identified as particularly challenging for mothers during NICU stay and after discharge [27,31,32,34]. In instances where the mothers served as the primary caregiver for their infant, the demands of arranging and managing medical appointments for their infant, along with addressing their own health issues, added significantly to their stress [36]. Mothers also experienced stress due to navigating infant feeding techniques beyond the NICU, lack of adequate breast milk, and inability to breastfeed due to conflicting schedules [33]. Challenges related to managing preterm infant’s feeding compounded the existing struggles and the stress faced by Black mothers.

2.5. Availability of Support Systems

Five studies reported on the impact of stress on Black mothers’ mental health while in the NICU and post-discharge, and support systems available for coping [29,30,31,35,37]. Caring for preterm infants increases risk and vulnerability of mothers to mental health issues. An increased sense of isolation and the overwhelming lack of support contributed to symptoms of depression, anxiety, and stress [27,30,35,37]. These experiences, exacerbated by the mothers’ own physical and emotional vulnerability, undermined psychosocial functioning and compromised transition [29,30,31]. In the face of limited support, mothers coped with the multiple stressors by rationalizing their situations, refusing to accept the reality of their infants, engaging in prayers, and leaning into their faith [27,30-33]. Additionally, having a sense of purpose and pride, maintaining a positive outlook, and fostering resilient identities were common coping strategies described by mothers [27,29,30,32]. Mothers also discussed utilizing informal support systems, including family and friends, co-workers, and community networks to cope with their everyday stressors [30,31,33,34]. Concerns over the lack of culturally supportive care created limited opportunities to discuss mental health issues and open avenues for help-seeking [27]. While mothers felt the support from healthcare providers to be critical, the lack of integrated mental health support, even for those who requested support, exacerbated their mental health vulnerability [31,34]. The expectation to demonstrate strength, a characteristic of the Black woman archetype, contributed to their symptoms being ignored and impeded access to mental health resources [34]. Black mothers also experienced financial strain due to additional expenses associated with caring for a preterm infant [27,29]. The lack of financial and workplace support, and parental leave, in addition to job insecurity, exacerbated anxiety and depression experienced by these Black mothers [30,35].

3. Methods and Materials

A scoping review was conducted using Arksey and O’Malley’s [38] five-stage framework: identifying the research question; identifying relevant studies; selection of studies; charting the data; and collating, summarizing, and reporting the results.

3.1. Research Question

Guided by Arksey and O’Malley’s framework [38], our review aims to address the following question: What are the experiences of Black mothers with preterm infants during NICU stay and after discharge?

3.2. Searching for Relevant Studies

We conducted a comprehensive search using the following electronic databases: CINHAL, Medline, Maternity and Infant Care and Google scholar. These databases were chosen to ensure we were able to capture studies that were relevant to our review.

Table 1. Relevant search terms used in the literature search.

Concept 1		Concept 2		Concept 3		Concept 4
Black mothers OR Black parents OR Black women OR Black person OR African American mothers OR African American women OR African American Parents OR Black American mothers OR Black American parent OR Women of colour OR African Caribbean Black parent OR African Caribbean Black mothers OR African Caribbean Black women OR Black Canadian women OR Black Canadian mothers OR Black British women OR Black British mothers	AND	Preterm infant OR Preterm baby OR Preterm birth OR Premature infant OR Premature baby OR Premature birth OR Low birthweight baby OR Low birthweight infant OR Very Low birthweight baby OR Very Low birthweight infant	AND	Experiences Views Perspectives Perceptions	AND	Discharge OR Transition OR Transfer OR Readiness OR Preparedness OR Discharge planning OR Neonatal intensive care OR Neonatal intensive care unit OR NICU OR Intensive Care, Neonatal OR Intensive Care Units, Neonatal.

presents our search terms.

3.3. Selection of Studies

This scoping review included primary studies that focused solely on (1) Black mothers who had a preterm infant (born before 37 weeks of gestation) hospitalized in the NICU, (2) published in English, using quantitative or qualitative design, and (3) focusing on experiences of NICU stay, transition home, and support. These inclusion criteria ensured that we excluded studies that sampled mothers of full-term infants who required NICU hospitalization for other reasons. Given the limited number of studies focusing on this population, no year limit was applied to the initial search. However, after careful review of the initial search and to ensure we captured relevant and current evidence, we imposed year limits by including articles published between 2010 and 2024. Two hundred and eighty-seven (287) articles were retrieved and exported to Covidence for screening. After the removal of duplicates, 215 articles were screened. PB and OO independently screened the 215 articles by titles and abstracts, and subsequently by full text based on our research question and defined inclusion criteria. After the inclusion criteria were applied to the title and abstracts, 33 articles were moved to full text review and 20 articles were excluded due to the ethnically diverse nature of the sample. The two independent reviewers met to discuss any disagreement on the selection process until a consensus was reached. Figure 1 presents a flow chart of the search and screening process.

3.4. Data Extraction

A template was custom-designed by the research team and used for data extraction. The template includes the following: author(s) and study location, study purpose/objectives, research design and methods, sample characteristics, and key findings. Two of the authors (OO and VH) independently extracted and compiled the data and PB and NP further reviewed all the articles to ensure consensus was achieved. Consistent with a scoping review methodology, the articles were not subjected to critical appraisal.

Table 2. Summary of the findings.

Reference and Location	Purpose	Study Design	Sample	Summary of Findings
Discenza, 2021, United States. [26]	To understand the experience of implicit bias and racism in the NICU and how it is not always shown openly with a 3-time preemie mom.	Qualitative Study	1 Black mother	Families were not provided with valuable information and resources; racism in the NICU was pervasive and manifested in subtle and invisible ways.
Griffin & Pickler, 2011, United States [27]	To describe mothers’ experiences during the first month after their preterm infant’s hospital discharge.	Descriptive phenomenology	10 African American mothers	Financial and family support are integral to a smoother transition to the home; lack of open communication with NICU staff contributed to tension and challenges during hospitalization
Magruder, 2021, United States [28]	To explore the lived experience of African American mothers who have had a preterm infant in the NICU.	Qualitative hermeneutic phenomenological design	8 Black/African American mothers.	Diversity and representation in NICU increased connection and more positive experiences; lack of adequate information on procedures left mothers feeling unprepared.
Witt et al., 2022, United States [29]	To understand Black mothers’ perspectives of the impact of racism on quality of care for Black preterm infants in the NICU and what might be done to address it.	Qualitative design	20 Black mothers	Racism and stereotypes affected the interaction of parents at NICU; lack of Black representation in NICU staffing contributed to racism and absence of culturally informed care.
Waldron, 2022a, United States [30]	To explore perceived parental readiness to care for their Black preterm infants at home after discharge from a NICU.	Descriptive qualitative design	10 Black parents	Implicit or unconscious bias and mistrust interfered with quality and level of communication between NICU staff and parents.
Ajayi & Garney, 2023, United States [31]	To examine the existing mental health services and resources in the NICU for Black mothers with preterm infants.	Grounded Theory	11 Black Mothers	Stress from juggling multiple life demands while in the NICU and after discharge and uncertainties about their infant’s health.
Enlow et al., 2016, United Studies [32]	To understand the experiences of at-risk families during the transition from NICU to home to inform interventions.	Grounded theory	27 mothers of infants born at <35 weeks’ gestation, meeting low socioeconomic status criteria (85% were Black)	Parents felt stressed about the transition from the closely monitored environment of the NICU to the less supervised; inconsistent information from various providers threatened to compromise trust.
LoVerde et al., 2018, United States [33]	To explore supports and barriers experienced by African American mothers while providing their own (mother’s) milk to their Very Low Birth Weight infants.	Qualitative descriptive study	9 African American mothers	Mothers reported being emotionally distressed due to infant’s condition and not expressing enough breastmilk.
Ajayi et al., 2023, United States [34]	To understand Black mothers’ perceived provider communication, support needs, and overall experiences in the NICU.	Grounded Theory	12 Black mothers	Healthcare providers exhibited dismissive attitudes; balancing familial responsibilities and infant needs in NICU and during transition was challenging.
Waldron, 2022b, United States [35]	To examine how well the concept of parental readiness to care for Black preterm infants post-NICU discharge aligns with the updated Kenner Transition Model.	Qualitative descriptive research	10 parents of 8 Black preterm infants	Dismissive encounters and lack of attention and integration of mother perspective in the care of preterm infants; involvement in the NICU care environment and the decision-making process for their preterm infant was vital.
Brentley, 2019, United States [36]	To explore Black mothers’ perceptions of social support for their preterm babies.	Phenomenological design	12 Black mothers	Lack of support and challenges managing medical appointments for child, and limited mobility
Holditch-Davis et al., 2009. United States [37]	To examine the various forms of stress experienced by African American mothers of preterm infants, including infant appearance and behavior in the NICU, parental role alteration stress in the NICU, depressive symptoms, state anxiety, posttraumatic stress symptoms, and daily hassles.	Longitudinal Analysis	177 African American biological mothers of preterm infants	Stress due to infant appearance and behavior in the NICU and parental role alteration.

presents the summary of the findings.

3.5. Collating, Summarizing and Reporting the Result

A thematic analysis approach was used to organize the extracted data into four themes [39]. Thematic analysis enables researchers to make sense of textual data through a systematic process of organizing and discovering themes to generate in depth understanding on a research topic. We used the Braun and Clark six-stage process of conducting thematic analysis. After the extraction process was completed, we immersed ourselves in the data by reading through the extracts to gain an initial impression and to generate codes. We subsequently applied the codes to all the text to highlight the key ideas. Next, we identified patterns within the coded text and grouped them into categories to generate potential themes. The themes were reviewed and refined by the team. We assigned a name to each theme to reflect the shared experiences of Black mothers with preterm infants. A written narrative was generated to discuss the themes to highlight the experiences of Black mothers during their stay in the NICU and after discharge.

4. Discussion

This scoping review provides insight into the challenges faced by some Black mothers after giving birth to a preterm infant. The findings reveal that Black women with preterm infants face unique and complex challenges related to racism and discrimination while in the NICU. Reports of prejudiced and biased treatment were also common in the NICU. The findings revealed that healthcare providers undermined the capacity of Black mothers to comprehend their preterm infant’s status, and the intricacies involved around their care. Further, the stereotyping of Black babies was a common experience for Black mothers in the NICU, resulting in Black preterm infants receiving delayed or substandard medical attention. Stereotyping Black preterm babies in the NICU contributes to disparities in quality of care and causes considerable stress for Black mothers, compelling them to persistently advocate for their preterm infants despite being repeatedly ignored or disregarded [17,25,40]. This calls for attention to dismantle systemic racism in the NICU by integrating antiracism training for healthcare providers, which is urgently needed to improve the quality of care provided to Black preterm infants.

Additionally, the lack of diverse representation in the NICU is known to contribute to culturally discordant care and, as such, fails to address the needs of Black preterm infants [16,25,40]. Moreover, the lack of representation in the NICU made it challenging for Black mothers to engage with NICU staff or express their concerns due to the fear of being misunderstood or labelled as difficult. To improve the experiences of Black mothers in the NICU, it is crucial to increase diversity and representation among the NICU staff to ensure Black mothers can see themselves reflected in the healthcare staff caring for them during this vulnerable period [25,40]. Further, identifying pathways to provide culturally responsive, meaningful, and equity-focused supportive care in the NICU is crucial to prepare Black mothers as they transition home. Thus, supporting parental participation and involvement in infant caregiving activities, incorporating a holistic and integrative approach to discharge planning, and facilitating access to peer support alongside family integration are crucial to improving transition readiness. These supports are needed to promote successful transition after discharge.

Accounts of poor communication, limited information sharing, lack of support, and limited parental involvement in care planning were commonly shared by Black mothers in this scoping review. Failure to engage and prepare mothers to assume the responsibility for caring for their infants affects the confidence of mothers and increases their stress levels and mental health risks [9,10,41,42]. This can consequently lead to affected Black mothers struggling to adjust to their parental responsibilities during the transition to home. Therefore, there is a need to foster a non-judgmental and discriminatory free space for Black mothers to openly communicate and share their concerns during their NICU stay and follow-up visits.

Black mothers with preterm infants reported higher stress levels associated with parental role alteration, and socio-economic and workplace demands. Physical and emotional demands of caregiving, along with the financial burden associated with caring forpreterm infants, compromise coping and transitioning of Black mothers. Previous studies have noted that the demands of caring for preterm infants in the face of limited support were associated with an increased risk of anxiety and depression among parents of preterm infants [9,43,44]. Untreated PTB-related mental issues can compromise infant–parent attachment and relationship, the mother’s responsiveness to preterm infant needs, and undermine parental psychosocial functioning. Therefore, psychosocial screening initiatives for parents during their time in the NICU can facilitate the early detection and mitigation of mental and socioeconomic risk factors. Furthermore, interventions to support the emotional well-being of Black mothers with preterm infants should include increased access to mental health, social, and financial support.

5. Strengths and Limitations

This scoping review provides insights into the growing body of research on Black maternal health disparities and how they shape their experiences and health outcomes. Although the findings of this study shed light on the experiences of Black mothers in the NICU, it is not without limitations. First, the studies included in this review were predominantly from the United States where systemic racism may potentially influence the negative experiences of Black mothers within the NICU. As a result, the findings cannot be extrapolated to other settings with Black populations, given the differences in social and healthcare systems. Second, the studies included in this scoping review focused solely on Black mothers without a non-Black comparative group; therefore, it is unclear if the experiences were exclusive to only Black mothers. While Black mothers may have interpreted their experiences through the lens of racism, it may also have been an issue of lack of compassion among some staff within the NICU. Third, limiting the search to four databases may have missed the capture of some relevant articles. Based on the authors’ experience and in consultation with the Toronto Metropolitan University Librarian, we found these databases were appropriate given the topic of this scoping review. Additionally, limiting the search to articles published in English may have introduced some form of bias in our selection process, especially those published in other languages. The decision to exclude non-English studies was based on cost implications and the focus of this scoping review.

This scoping review provides a synthesis of existing literature focuses solely on Black mothers’ experiences in the NICU predominantly from one Western country, highlighting the paucity of research and intervention on this issue. As such, this may warrant future studies to focus on examining the experiences of Black mothers with preterm infants from other contexts such as Canada.

6. Conclusions

The findings reveal a dearth of research on the experiences of Black women with preterm infants in Western countries, including Canada. Given the disparities in PTB among Black mothers and the significant public health concerns related to PTB in mothers and infants, addressing the emotional and psychosocial needs during and after NICU hospitalization is critical to optimizing the health and well-being of Black mothers and their preterm infants. Further research is needed to develop targeted equity and culturally informed interventions and programs to support Black parents with preterm infants.