‘We are suffering. Nothing is changing.’ Black mother's experiences, communication, and support in the neonatal intensive care unit in the United States: A Qualitative Study

ABSTRACT

Objectives

Black mothers experience markedly disproportionate maternal morbidity and mortality in the United States, with racism often cited as the root cause manifesting through several pathways. The study examined Black mothers’ perceived provider communication, support needs, and overall experiences in the neonatal intensive care unit (NICU).

Design

This study used grounded theory embedded in the Black feminist theoretical (BFT) framework to generate new ideas grounded in the data. Data was collected through semi-structured interviews using videoconferencing, with questions related to the mother's overall NICU experiences, communication within the NICU, and perceived support needs. Data were analyzed using thematic analysis.

Results

Twelve mothers participated in the study; most were married (n = 10), had a cesarean birth, had a previous pregnancy complication (e.g., diabetes, hypertension), had attained a graduate degree or more (n = 9), earned an annual household income of $75,000 or more, and were between 35–44 years of age (n = 7). Three broad domains with several accompanying themes and sub-themes were identified, explicating the mother's experiences in the NICU. Specifically, factors influencing NICU hospitalization for mothers included maternal care/nursing experiences, interactions in the NICU, and the perceived support need that might attenuate negative care and birthing experiences. .

Conclusion

The study adds to the growing literature championing Black maternal health equity and multilevel quality improvement strategies to foster equitable maternal health. Our study reinforces the need for racially congruent interventions and policy reformations to protect Black birthing people regardless of socioeconomic factors and social class using life course, holistic approaches, and intersectionality mindset. Importantly, using the BFT, this study calls for culturally sensitive research to capture the nuances associated with the multiplicity of experiences of Black people.

KEYWORDS:

• Black mothers
• Health inequity
• Neonatal intensive care unit
• Prematurity
• Black Feminist Theory
• Patient-provider communication

Background

Evidence demonstrates that Black mothers account for a disproportionate share of maternal morbidity and mortality in the United States (US). Compared to non-Hispanic White women, Black women are 2–3 times as likely to die from pregnancy-related causes (Center for Disease Control and Prevention 2022a), have a higher prevalence of severe maternal morbidity (1.63% vs. 0.84%) (Leonard et al. 2019), report a higher percentage of psychosocial stressors (7% vs. 3%) (Sternthal, Slopen, and Williams 2011) and elevated mental health problems (Conteh et al. 2022), and have higher preterm birth (PTB) burden (14.8% vs.9.5%) (Center for Disease Control and Prevention 2022b). While many factors influence maternal health outcomes, scholars agree that racism, not race, is an underlying root cause of the Black–White health disparities (Akinade et al. 2022), manifesting through several pathways, including in the neonatal intensive care unit (NICU).

Consequently, Black mothers experience markedly disproportionate care across different levels of care for their infants hospitalized in the NICU (Ajayi and Garney 2022; Glazer et al. 2021; Houston and Walker 2022; Witt et al. 2022). In their comprehensive review, Sigurdson and colleagues (Sigurdson et al. 2019) found that racial disparities in the NICU existed in the structure (e.g. quality of care and geography), process (e.g. referral and patient-provider relationships), and outcomes (e.g. mortality and morbidity). Using data from 18616 very low birth weight infants (<1500g) in 134 NICUs in California, Profit and colleagues (2017) found significant variation in the mean quality of Baby-MONITOR scores (a composite indicator of NICU quality) with Hispanics (0.09 [0.7]; p < 0.023) and other races and/or ethnicities reporting lower scores than White women (0.24 [0.6]). Although African American women's scores were lower than non-Hispanic white women’s (0.2 [0.5]; P = 0.550), the results were insignificant. However, adjusting for confounders, Ondusko et al. (2020) found that African American mothers and infant dyads in Washington State had lower odds of receiving (1) antenatal corticosteroids (Adjusted odds ratio [AOR] = 0.62, confidence interval [CI]: 0.51–0.76), (2) assisted ventilation immediately after delivery and up to six hours after (AOR =   0.76, CI: 0.61–0.94 and AOR = 0.64, CI: 0.49–0.84), and surfactant therapy (AOR = 0.62, CI: 0.42–0.92) compared with White mothers. Corresponding findings of disproportionate care have been reported based on cross-sectional national survey data and qualitative studies across different health domains, including Black mothers’ communication and support needs, suggesting that overall disparities in the NICU are perpetuated by proximal and distal barriers (Nutor et al. 2018; Witt et al. 2022; Yang, Collins, and Burris 2021). For instance, Black mothers with a history of mental health problems had significantly lower levels of social support (White-Traut et al. 2017). Other examples of disproportionate care reported during and after hospitalization include poor formal and informal support, inadequate communication between NICU staff and patients, and imbalance of power dynamics between providers and patients, leading to disrespectful care (Ajayi and Garney 2022, 2023; Altman et al. 2019). Based on this premise, it is evident that the consequences of health inequities happening across diversechannels: interpersonal, internalized, institutional, and structural, are systemic and endemic in the NICU (Davis 2019; Hardeman et al. 2022). Thus, it is unsurprising that racism and other ‘isms’ that flourish in the US are significant public health problems.

Given the preponderance of the evidence of inequities in the NICU that persist, robust research undergirded in theoretical underpinnings must be conducted to understand the mechanisms underlying these experiences. The Black Feminist Theory (BFT) provides a succinct and strong theoretical framework to explicate Black mother's experiences in the healthcare sector (Brantley 2023; Collins, 2002). BFT is ideal for this study because it centers and contextualizes Black women’s healthcare experiences in the sociocultural and political narratives perpetuating discordant care while acknowledging and appreciating their diverse identities, which historically have been discounted. Indeed, BFT helps articulate the relationships and connections between systemic racism and the sociocultural environment that undergirds and perpetuates racial bias and inequity. It also centers and validates Black women's viewpoint as authentic and unique, influenced by their intersecting identities. Furthermore, using the BFT framework for this qualitative research highlights Black mothers’ experiences in the NICU from their standpoint. It draws linkages between historical oppression and contemporary prejudice underpinning these experiences (Brantley 2023; Collins et al. 2002) to offer empirical and culturally congruent obstetric care. As a result, this study lays the groundwork for future studies aimed at eliminating discordant care and outcomes in the NICU. Moreover, there is a growing need to amplify the voices of Black mothers in their care, specifically in the NICU, to characterize their lived experiences to better inform culturally responsive and inclusive programs, policies, and interventions, thereby achieving maternal health equity. To this end, this study aimed to understand Black mothers’ perceived provider communication, support needs, and overall experiences in the NICU.

Methods

Study design

This study used grounded theory (GT) methodology embedded in the BFT framework to generate new theories grounded in the data. GT was ideal because the research on the intersection of NICU experiences among Black mothers is an emerging topic (Collins 2002; Creswell and Poth 2016). The combination of these paradigms helps explicate the voices of Black mothers so that their unique views and experiences that expose them to unequal NICU care and outcomes are adequately represented.

This study is part of a larger mixed-method study aimed at developing culturally responsive NICU programs for Black mothers with PTB (Ajayi and Garney 2022; 2023). However, data for this current study were restricted to the questions related to the mother's overall NICU experiences, communication within the NICU, and perceived support needs. (see the Supplementary file containing the interview questions used for this study).

Recruitment and sampling

Participants were recruited through convenience and snowball sampling from several social media platforms singularly for Black people (e.g., Black Ladies in Public Health Facebook group). To be included in this study, mothers had to meet the following criteria (1) identify as a Black woman (we used Black vs. African American women in respect of the heterogeneity of this group), (2) 18 years or older, (3) have or had an infant in the NICU, regardless of whether the infant was born preterm or full-term in any geographical region in the United States, and (4) ability to speak English. Mothers who did not meet this criterion were excluded from this study. Participation was voluntary, and we collected written and oral consent before the interview sessions.

Data collection guide

To gather novel data about the phenomenon under investigation in this current research, elements of GT and the BFT were utilized to solicit the viewpoints of Black mothers and professionals with lived and professional experience (i.e. therapists, researchers, or community workers working in diverse capacities to address prematurity and NICU care in the Black community) to develop relevant questions to be included in the interview guide. Thus providing a holistic representation of the NICU experience from an insider (mothers) and outsider (professionals) perspective. This approach underscores the tenets of BFT in that we synthesized diverse viewpoints of Black women and used their intellect as a criterion for learning (Brantley 2023; Collins et al. 2002; Wilson et al. 2022). Moreover, face and content validity were obtained. We then triaged the feedback we received internally with the research team and the literature (Johnson et al. 2016; Parker et al. 2018) to create a final interview guide. The finalized interview guide contained sociodemographic questions and questions to elicit the NICU experience. Considering that the topic under investigation could produce emotional distress, the lead researcher consciously built rapport with the participants before and during the interview process by sharing their personal experiences as a mom of a preterm infant and communicating with participants via social network sites and email. Importantly, the lead researcher acknowledged their positionality and identity, who, though characterized as a Black woman living in the United States, has a different lived experience from study participants due to being an immigrant (Wilson et al. 2022). These approaches encouraged the participants to confidently share and recount their experiences even when some of the experiences were emotionally charged for them. In situations when recounting their stories made participants visibly shaken, emotional, or tearful, the researcher encouraged them to take breaks or to reschedule the interview if needed. The researchers reflexively ensured that the interview process was non-judgmental and dialogical – in words, mannerisms, and intonation. This approach is congruent with BFT qualitative methodological framework (Clemons 2019).

This study utilized semi-structured interviews administered via teleconferncing. Th interviews lasted approximately 60 minutes and were conducted between September and November 2021 until no new information was derived (i.e. the point when there is a rich contextualized and texturized understanding of a phenomenon) (Hennink, Kaiser, and Marconi 2017). The interviews were audio-recorded and transcribed verbatim using a secure transcription service.

Data analysis

Data analysis was performed using thematic analysis. The codebook was developed inductively based on Decuir-Gunby and colleagues’ data-driven code generation technique by reading the entire data to enable familiarity with the data (DeCuir-Gunby, Marshall, and McCulloch 2011). An inductive approach aligns with the BFT because it allows the researchers to chronologically tell the authentic stories of the mothers without being presumptive (Clemons 2019). Specifically, we labeled and reduced the data according to the ‘level of meaning’ by ‘lumping' and ‘splitting’ the data into lines, sentences, and paragraph levels. The first author then iteratively and systematically developed categories and codes in consultation with the research team until a final set of themes and sub-themes were generated. While reviewing and refining the initial themes, the researchers checked the data to ensure they did not deflect from the participant’s accounts. Once the codebook was finalized, another team member was invited to code five percent of the data to establish rigor using the codebook. Discussions were used to resolve disagreements, and a few changes were made to the codebook. Subsequently, the first author coded the data to achieve congruity throughout the coding process (Creswell and Poth 2016).

To ensure trustworthiness, the researchers applied the principles of credibility (i.e. member checks were conducted between researchers to ensure that the participant’s view was accurately represented and captured), transferability (i.e. the researchers utilized strong theoretical frameworks to ensure that the findings were applicable and transferable in similar contexts and settings); dependability (i.e. detailed information about the research process is provided to enable replicability); and confirmability (i.e. the researchers communicated and discussed the findings objectively without bias or subjectivity, to ensure the findings reflect the participant's viewpoints) (Johnson, Adkins, and Chauvin 2020).

Ethics statement

This study was approved and conducted in accordance with the Texas A&M University Institutional Review Board.

Results

Twelve mothers (n = 12) participated in this study. Most of the mothers were married (n = 10), had a cesarean birth (n = 9), had a previous pregnancy complication (e.g. diabetes, hypertension), had attained a graduate degree or more (n = 9), and earned an annual household income of $75,000 or more, and were between 35–44 years of age (n = 7). Of the mothers in this study, only one had a full-term infant (birth at 38 weeks). A detailed description of the study characteristics is in Table 1.

Table 1. Characteristics of mothers interviewed, n = 12.

	N	(%)
Age
18–24	–
25–34	5	41.6
35–44	7	58.3
Marital status
Single	2	16.6
Married	10	83.3
Income status
Less than $30,000	–
$30,000 to $49,999	2	16.6
$50,000 to $74,999	3	25
$75,000 and above	7	58.3
Educational status^a
High school or more	–
College degree	2	16.6
Graduate degree or more	9	75
Employment status
Unemployed	–
Employed	12	100
Type of delivery^a
Vaginal	2	16.6
Cesarean birth	9	75
Type of birth^a
Singleton	2	16.6
Multiples	9	75
History of preterm birth
No	9	75
Yes	3	25
Gestational weeks
27–29 weeks	3	25
30–34 weeks	3	25
35–37 weeks	5	41.6
38 weeks and above	1	8.3
Previous Pregnancy Complications^b
No	2	16.6
Yes	10	83.3
Year of birth
2008	1	8.3
2010	1	8.3
2012	2	16.6
2017	1	8.3
2019	4	33.3
2020	1	8.3
2021	2	16.6

^a Total responses = 11; ^b = diabetes, hypertension, preeclampsia, or other maternal conditions.

Overall, three broad domains with several accompanying themes and sub-themes were identified, explicating the mother's experiences in the NICU as seen in Tables 2–4. Using GT and informed by Hardeman and colleagues’ framework, we developed a conceptual framework linking the domains of care derived from this study to expound racial inequities in the NICU, as seen in Figure 1. According to Hardeman and colleagues (2022), racism is situated in the social determinants of health – the conditions wherein people are born, grow, work, live, and age that shape and determine their condition and quality of life, as seen in the figure below. Concerning this current study, the domains, themes, and sub-themes reported from the mother’s perspectives and narratives demonstrate how historical and contemporary forms of racism are situated within the social determinants of health and manifested through numerous ways in the NICU (e.g. in this study, Black mothers in the NICU were undermined and stereotyped as unknowledgeable to grasp common medical verbiages and thus consciously or unconsciously perceived as unworthy of respect and the care they and their infants deserved), ultimately leading to poorer and disproportionate outcomes. Importantly, the framework shows that the domains are not mutually exclusive to the NICU or individual domains, as reflected in the mother's collective stories and experiences. The NICU is in the continuum of prenatal and obstetric healthcare and experience.

Figure 1. Conceptual model of the pathways and results of disproportionate care in the NICU. Note: these experiences are not mutually exclusive to the NICU; they occur across the continuum of obstetric care from preconception up until after discharge. However, for this current research, we bound the manifestation of racism to the NICU to align with our research question and study aim. Adapted from Hardeman and colleague’s framework

Table 2. Domain one, maternal/nursing care experiences.

Domain	Theme	Subthemes	Exemplar Quote
Maternal/Nursing Care Experiences	Experiences during pregnancy and birth	Unprepared and unaware	‘And so I would have contractions and like thinking back on it like I was actually having contractions before I went into the hospital, but I didn’t know they were contractions. I thought it was just like the baby moving.’
		Biased provider attitudes	‘I am educated, I'm in the mental health field, but the way that I was treated, it was pretty horrible.’
		Self-advocating	‘And then I made it back to the bed and the nurse was like, we’re gonna give you some ibuprofen. And I’m like ibuprofen? Get the doctor in here right now because something is not right because baby is about to come. And so the doctor finally came and checked me and was like, Yeah, you’re gonna have to have this baby right now.’
		Emotional issues	‘I was upset again because it was just a lot of sudden choices, decisions, and I feel like I wasn’t really included in the care as I should have been.’
	Experiences post-birth	Emotional and mental toll of having a preterm birth	‘Post-partum depression is real. I think probably a year, I may even say two, parenting was really a blur particularly the adjustment from coming straight from the hospital to home.’
		Decision-making	'We went to go see the baby and the baby's not in the NICU, and I'm like, ‘Okay. Well, where's my child?’ And they’re like, ‘Oh yeah, he went down for a CT scan,’ and I was just like, ‘Why did he go for a CT scan? Like, we left and he was fine. Like why suddenly?' … ‘Oh, we wanted to make sure he had brain swelling.’ And I'm just like, ‘This is not something to be kind of flippant about.’ So I got ticked off, and when the MP came by, she kind of had the same flippant. And I was like, ‘Oh no,’ I said, ‘Ma'am, I need you to come back and talk to me a little bit.’ And she’s like, ‘Well, I have other rounds,’ and I said, ‘Well, I will sit here until you finish your rounds … So when she did her rounds and she finally came back, it was kind of like,' ‘Oh, you still here?’ I was like, ‘I told you I would wait because I need to speak with you about what's going on with my child.’
		Coping and support	‘one of the things that I could say, is they were encouraging me to breastfeed, to nurse because they were like, ‘Your baby needs it.’ And so, I had regular consultations with, with the lactation nurse, and she was – she was working with me on how to pump and how often the pump and to keep trying and how to massage my breasts, and she was very hands on. She even put her hand down my shirt and she was working with me until I was able to until my milk dropped.’
		Balancing life	‘I am single and I have two kids under the age of five now. So, I was parenting a newborn and a toddler at the time, so that was hard, and it still is hard. It’s a lot of work.’
		Concerns about the infant's future	‘ I definitely made sure that I enrolled him in, like, the – we call it first step here, and it just works on developmental issues.’
		Conflict between caring for self and infant	‘So, he would be getting his antibiotics at 10:00, and I would have to get mine at 10:00. So, I wasn’t able to stay with him during that time which also meant missing out one time where to feed him and to change him and things like that that we could participate in. I wasn’t necessarily able to stay that long when I was able to visit him, because I had to go back to my room to get my own care done. ’
		COVID-19 related factors	"And with COVID also, the only people that could visit would be me and my boyfriend. We were the only ones that could visit the baby. Nobody else could be in the hospital with us.’ Quote 20

Table 3. Domain two, interactions in the NICU.

Domain	Theme	Subtheme	Exemplar Quote
Interactions in the NICU	Discrimination	Communication and information sharing	‘They had a flyer like a poster. It was called my flight plan home to where we were supposed to check off different things to learn before going home, but nothing was ever taught.’
			‘ I got three calls from the lactation nurse, which was nice, probably over those 11 days or I would say two weeks, because like I said, that continued even a few days post departing the NICU.’
		Biased provider's attitudes (Differential treatments, dissmissive attitudes)	‘I felt like they looked down on me because I was Black and I’m probably was another statistic for it to be a preterm birth.’
			‘And one was a white woman, she had quadruplets, and the way they treated her was like – I could see it because she was right next door, so the way they treated her was royalty compared to myself. They let her do all the things, she asked questions, they spent hours in her room, they set her up with a pump for breastfeeding.'
			‘I asked for breastfeeding, there was no breastfeeding support given. I had to teach myself how to use a pump and struggled often. And their reasoning for me is like, “Oh, you don’t have to worry about it now. They’re small enough to get donor milk, so you don’t have to worry about it.” So, it was a reason as to why they didn’t provide the help despite me asking for the help explicitly.’
	Self-advocacy	Persistently questioning providers	‘I have a lot of basic knowledge of what was going on, so I understood what was going on, and I understood what questions to ask. So I had a really good picture of what was going on with the kids, and my questions were answered after we had a conversation, and I actually did have to bring up, I felt it was necessary to tell them, ‘I have a biology degree. So when I asked you a question, I need an actual answer.’
		Devising strategies to hold providers accountable	‘so I kept a journal of everything that went on in the NICU from the day he got there, including the names of everybody who touched him and his numbers, including all the numbers that they are looking for, as well as things that I just wanted to say to him at the time.’
			‘ I felt like they weren’t really listening to me again. And so, what I ended up doing was I called her [notable Black obgyn] on my cell phone and I put her on speakerphone … And so, as soon as they [care team] found out that I was one of her patients, it really switched. They started treating me differently and everything.’
	Relationships with other NICU moms		‘Yes. On the times that we even had a brief conversation [NICU moms]. It was helpful because it was hopeful to let us all know that we’re all going through something similar. It’s all different situations and diagnoses, but we were all there to embrace our children.’

Table 4. Domain three, support needs.

Domain	Theme	Subtheme	Exemplar Quote
Support Needs	Prioritizing the self	Self-care	‘I think there’s an assumption that when you have a baby, particularly among the African-American community, that you kind of give up your life – and they need – the other people need to understand, and the mother needs to understand that you still got to be healthy. You still have to rest. You still have to eat.’
		Normalizing mental health care for Black communities
	Help-seeking attitudes and influences	Types of help	‘What I think is unique is kind of like the grandma or aunties of the group, the women that are head of the families that provide a lot of support guidance, … if I needed questions answered or I had a concern about something, I went to my mom or I went to my grandma like, ‘I need to talk to you on about this thing before doing anything.’ So, I think that that piece is what sticks out the most and it’s unique, in my opinion.’
			‘Something that was helpful with my first child, I had a home visiting nurse come. And not that my daughter was unhealthy, it was just – it was nice to have that reassurance that she was progressing and doing the things that she needs to do. So, that was really helpful.’
		Barriers to receiving help	‘You know, any time that I’ve been offered any type of social services, there’s been always, um, a limit to what they can do … if you have programs that have – that are low funded, then you have people who are paid low wages and they’re not happy, then you’re just gonna get unhappy people or long wait times or attitudes. ’
			‘That stuff is important and I feel like that stuff that – I feel like the NICU only really worries about the baby, so they’re going to make sure that you had the referrals for the specialist that you need to see or that the baby needs to see, but not necessarily the parent because the parent isn’t their patient.’
	Culturally relevant care and resources	Diverse workforce	‘if we're talking about tailoring and being sensitive to this particular population on this particular issue, then it’d be nice to have, you know, a viable resource list of places within our communities where we could go. And when I say go, I mean access, pick up the phone or go online, etcetera. That would – that we know, would sort of be a safe place to reveal whatever challenge the person or persons are experiencing.'
		Understanding unique family needs	‘One of the things I was asked following back up with my OB-GYN, the male doctor, he did ask me. Did I have support at home? I thought it was a very interesting question because I had not ever been asked that by a physician, ever in my life. And he kind of tracked it. You know, he asked me, what does it look like? How do they support you? I thought that was very important.’
			‘Sometimes it’s … assessing what they really need, because sometimes we think, ‘Oh, it’s a mom and baby, I need to give them a diaper bag, wipes and all that,’ but they may just need a resource to help with getting a job.’
		Understanding Blacks as a heterogenous group
	Inclusion of social networks in care	Family and friends	‘I don't think if my family would have [not] been there, I don't know if I could have really gotten through that. Every day, I had a family member up there, checking on us … making sure that we're okay.'
	Other unique ways to support the Black community	Dispelling myths within the Black community	‘we’ve learned as black people that we need to trust each other more than the medicine and more than the medical professionals, then if we don’t have enough black medical professionals, then you’re gonna get bad information. I’m wondering if there were more blacks support, you know, would they believe them instead?..I can’t do anything about that if you just don’t trust the person because they’re white, but they’re telling you the right thing. ’

Domain one: maternal/nursing care experiences

Mothers chronologically described their experiences from pregnancy to discharge from the NICU, comprising the themes represented in this domain as seen in Table 2. Some quotes are narrated in the manuscript, while others are reported in Table 2 to provide additional insights and contexts of participants’ experiences.

Maternal and nursing care experiences during pregnancy and birth

Most participants described their experiences seeking and receiving prenatal care as unpleasant and disappointing. These were mainly related to (1) unawareness and unpreparedness for having a preterm birth, (2) biased provider attitudes, (3) self-advocating, and (3) emotional issues.

Most mothers’ pregnancy and birth experiences were negative because they had sudden and unprepared birth and, in some cases, were unaware of labor symptoms. This was exacerbated particularly for those who reported having a smooth pregnancy without needing specialized care. One mother said, ‘So I went to the emergency room thinking I was just gonna get fluids … So they [the doctor] actually did a vaginal ultrasound, and they found out that … my cervix was open.’

The sudden arrival of their babies meant they made substantial changes to their birth plans, from not having a baby shower to having an emergency cesarean delivery.

In addition, some mothers reported that they experienced discriminatory provider treatment as their pains were dismissed even when faced with severe contraction pains. As this participant mentioned, ‘I started having like really, really bad contractions, and they just were progressing, progressing, progressing. I kept telling them, and they really weren’t listening to me.’ As a result, they had to advocate for the care they thought they deserved with the help of family members, just as this mother said,

My mom, who is also a labor delivery nurse, did a lot of advocating for me because I just kind of stayed in the bed for a couple of weeks, not feeling well … But my mom, with her experience, she recognized that this is not weight; this is fluid. So her advocacy and talking back and forth with the physicians that was on my case, there was a discussion that a C-section needed to be done pretty quickly.

These experiences led to feelings of sadness throughout the pregnancy and birth period for most mothers.

Maternal and nursing care experiences post-birth

Most participants reported a myriad of experiences, which were mainly negative during and after the NICU hospitalization. The following sub-themes emerged under this category: (1) Emotional and mental toll from having a preterm infant, (2) decision-making, (3) coping and support, (4) balancing life, (5) concerns about the infant's future, (6) conflict between caring for self and infant, and (7) COVID-19 related factors.

Many mothers noted that having a PTB, whether the baby was at the NICU or at home, was an ‘excruciatingly painful’ experience because of the complexities associated with caring for a preterm infant. A participant said, ‘I mean, being in a NICU alone, even just seeing other people’s kids, it’s just hard.’ While in the NICU, these experiences were escalated by a lack of involvement in decision-making, which made most mothers feel isolated and powerless to make informed decisions about their care and those of their babies. However, one mother, in particular, reported that decision-making and communication were done through a ‘parent host,’ – a peer support NICU-based program, because she realized that her needs could only be met if it went through the parent host vs. communicating directly with her care team;

she [parent host] was the only one that helped for me to have my questions answered. It took for her to tell the medical team that I was asking questions or I needed questions answered for them to acknowledge anything I had to say.

Mothers’ reaction to support in the NICU was mixed; some mothers bemoaned a complete lack of support from the NICU providers, which was related to lactation or other specialty care, while others thought the support they received was adequate. One mother said,

Like I remember one day I was doing skin to skin, I think, and I needed help; my baby, my son, started crying, and he was very, very tiny. So, you know, it’s still – it’s still new. I’m a first-time mother. I felt like I needed help, and I asked for the nurse to help, but she wasn’t coming.

However, once discharged, most mothers reported having a positive support system from family and friends, which enhanced their ability to cope and balance their conflicting life schedules, including working and caring for their preterm infants and other family members. Some mothers, particularly those whose babies had health complications, reported being concerned and worried about the future outcomes of their infants, as this mother said about her child, ‘Your child being in there every day and like you, you don’t know what the outcome would be.’ This led them to be proactive about their child’s development by ensuring that they kept all the doctor's appointments, looked out for any anomaly in their child’s development, and invested in learning aids to boost their infant's overall development. One mother noted, ‘It was too hard to try and keep up with the work, care for him because he had specialty appointments every week, sometimes twice a week, and then making sure that he was cared for with his oxygen.’ Few mothers with lingering health issues after birth were admitted to the hospital and expressed frustration with managing their care and their baby's NICU routine. One mother said that

[she] didn’t get to go see him [infant] in the NICU … During that recovery time, between medication, between [her] trying to communicate with them [providers] about my ribs and then just being short-staffed because of the holidays, it was just very much mixed up.

Lastly, the COVID-19 mitigating strategies, such as social distancing policies, instigated negative experiences during and after the NICU.

Domain two: interactions in the NICU

As seen in Table 3, three themes were generated, namely (1) discrimination, (2) self-advocacy, and (3) relationships with other NICU moms. Generally, most of the mothers in this study reported being treated differently because of their race. Additional quotes are reported in Table 3.

Discrimination

Most mothers reported that discrimination mainly based on their race occured through the following sub-themes (1) communication and information sharing and (2) biased provider attitudes, leading to being treated differently or their concerns being outrightly dismissed – Table 3.

Specifically, mothers reported receiving inconsistent, delayed, or no communication. They were mainly ‘ordered’ on what they should do instead of having respectful communication, which they perceived could have been better. Yet few mothers reported receiving critical health information about their infant through posters or flyers on their doors. Accordingly, one mother said,

'‘So I would say that for anything that was ongoing, they posted something in the room, they didn't actually tell me specifically. And so I would see these notices on the door or on the closet door or something. And so I started to read them or take pictures of them. And then, finally, I asked, ‘Why is this information here?’ And they're like, ‘Oh, that's for you.’ And I'm like, ‘No one said anything about that.”

Worse still, the information shared did not address the specifics of preterm birth in some instances. Surprisingly, poor interactions were not only reported between Black–White interactions. One mother with Black nurses reported that her interaction with her nurses was unpleasant because she perceived the nurses wanted her to be ‘very submissive’ to whatever they said without question. However, not all the communication experiences were negative, as very few mothers rated the communication and information-sharing process in the NICU highly.

In addition, participants reported that they experienced biased provider attitudes, leading to being treated differently from White women or denied care. They noted that their concerns and questions were out rightly dismissed because the NICU staff did not think mothers would understand complex ‘medical jargon’ even though it concerned the mother’s care. Mothers noted that they felt they were looked down upon, judged, and spoken ill of behind their backs because the care team saw them as ‘too young’ or ‘another statistic’ for having a preterm birth or being a mother. One participant noted,

My age was a big factor in how they communicated to me or even about me. It was, ‘You’re so young,’ or, ‘You look so young. How old are you? Don’t worry about this thing. You shouldn’t worry about these things. It’s medical jargon you wouldn’t understand. Just worry about being their mom; that’s all you need to worry about. You don’t understand these big words anyway’.

Interestingly, one mother reported that even though her hospital had racial and gender-diverse care teams, she perceived elements of prejudice (not racial) stemming from the sociodemographic characteristics of the families they usually encounter and serve in the hospital. Furthermore, mothers reported being treated differently in the services they received.

Self-advocacy

Based on the discriminatory practices most mothers experienced, they resorted to self-advocate for the care they thought they deserved, as seen in Table 3. This was done predominantly through the following sub-themes (1) persistent and deliberate questioning of providers and (2) self-devising strategies to hold providers accountable.

Mothers who did not receive consistent information or understand information or instructions used deliberate questioning to self-advocate. Some tapped into their clinical knowledge or exposure to medical knowledge. However, those without medical knowledge engaged in in-depth research from diverse sources, including the Internet and social network, to be well-informed about the unclear information they received, which was used as a reference point when asking questions. One mother said, ‘I made them [providers] explain to me’ by asking clear and well-informed questions. Furthermore, mothers used journaling to document events, conversations with their care team, their names, and the time the conversation occurred. Similarly, one mother resorted to utilizing her network by calling a notable Black Obstetrician via telephone she knew personally to direct her care team on what to do. Sadly, in some instances, some mothers decided to be discharged and readmitted to other hospitals because their doctors refused to listen to their concerns as told by one mother,

I had to leave that hospital because I’m like, ‘We are suffering. Nothing is changing. The same thing keeps happening. We’re in a cycle.’ And they kept telling me reasons why they didn’t want to. They’re just like, ‘Well, he doesn’t qualify for that type of test, or he doesn’t qualify for this type of intervention.’ I said, ‘We’ve been doing the same thing for months now. We have to do something else.’ They’re just like, ‘No, we’re the experts. You’ll be fine. We’ll be fine. He’ll be fine. Don’t worry about it.’

Relationship with other NICU moms

Generally, almost all the mothers in this study did not interact with other NICU moms. Still, they often exchanged pleasantries anytime they met in the hallway or with the NICU nurses. Mothers who mentioned that they had brief interactions with other NICU moms thought it was very pleasant and helpful to share their experiences with others going through similar situations as they were.

And we met one of those baby’s parents, and we just talked about the importance of having good support and just leaning on the family. But we just saw them occasionally because when you come and visit your baby, –everybody came at different times during the visiting hours.

Domain three: support needs in the Black community

As seen in Table 4, five major themes were derived describing mothers’ ideas for support to bolster the NICU experience. These include (1) Prioritizing the self, (2) help-seeking attitudes, (3) culturally appropriate care and resources, (4) inclusion of social networks in care, and (5) other unique ways to support the Black community. Some quotes are reported below, and additional quotes are provided in Table 4.

Prioritizing the self

Some mothers discussed the importance of prioritizing themselves by deliberately taking care of their emotional well-being through practicing (1) self-care and (2) Normalizing mental health care for Black communities.

Participants referenced the premise that Black mothers tend to focus on caring for others even when depleted and in need of care. Furthermore, most mothers emphasized the need to destigmatize mental health problems by normalizing therapy and mental health care among Black communities, given the mental health burden of the NICU, which is influenced by racism in the NICU and society. One woman succinctly describes this

And, of course, looking at the stigma, I think, for all African-American women across the board, the stigma associated with receiving therapy from family members because of religion, some of it is goes back to being extremely religious, as a culture, and believing that you can pray a lot of what you're going through away, or you should only pray. And then the racism, the systemic racism in the society that you see the police brutality, all of the things you do on a regular daily basis and how it affects your overall health and mentally.

Help-seeking attitudes

Most participants described the factors influencing support within a help-seeking praxis geared toward formal and informal support networks, as seen in the sub-themes reported: (1) Types of support and (2) barriers to receiving support.

Most mothers endorsed informational and practical support from their formal network (e.g. care providers). These types of support include digestible health education materials such as lactation support, information on how to care for their preterm infants upon discharge from the hospital, a navigation guide (e.g. between multiple doctors’ appointments), resources, referral support, or follow-up care. For example, one mother discussed a positive experience of how her nurse helped her navigate health insurance during her pregnancy and up to three months after the birth of her baby.

I had a nurse work with me through my insurance during my whole pregnancy, and then after I had Jayden, she stayed with me three months after my pregnancy. And so she sent me like educational videos, she sent me like stuff about changing him, how to work with his temperature. All of that, like if he had a temp, when to go to the emergency room, all of that.

On the other hand, mothers endorsed receiving emotional and practical support from friends and family, such as helping to cook a meal, babysitting, and having listening ears with supportive words. They also stressed the importance of having trusted inner circle friends who genuinely empathize with them. Interestingly, some mothers noted that while they appreciate the good intentions of friends and families, they frown against when their infants are carried or swaddled, particularly because of their fragility.

In terms of the barriers to mothers’ health-seeking attitudes, stereotypical attitudes mostly from the social institutions, the lack of a familial history of preterm birth, and the idea that NICU providers only focus on caring for their patients (i.e. the baby) vs. the parents, impeded the ability of some mothers to ask for or receive support. One mother said,

That stuff is important, and I feel like that stuff that – I feel like the NICU only really worries about the baby, so they’re going to make sure that you had the referrals for the specialist that you need to see or that the baby needs to see, but not necessarily the parent because the parent isn’t their patient.

Culturally relevant care and resources

Participants revealed that access to culturally competent care and resources is instrumental in having a positive NICU and birth experience, reflected in the sub-themes captured in the analysis: (1) diverse workforce and resources, (2) understanding unique family needs, and (3) understanding Black people as a heterogeneous group.

Generally, most mothers discussed the need for a diverse workforce with more people who look like, understand, and can advocate for them. They mentioned that when Black providers, regardless of gender, provide care, they feel more seen and empowered because they are most likely to understand their specific needs. Mothers also mentioned that providing care transcends having providers of color but requires that resources and health information be tailored to meet their unique needs because of the heterogeneity of family needs, culture, beliefs, and religion of Black families. One participant reiterated,

I mean, African American community is not homogenous. The various cultures within the black community might need something different. The different religions may need something different, different understandings. The differences like – my African friends versus my Caribbean friends versus my Black American, but they might need something different or a different understanding or different comfort. But I do think, considering different cultures, different religious affiliations, even within the black community, would be very useful.

Inclusion of social networks in care

Some participants discussed the importance of including their social network (i.e. family and friends) in the care process. They noted that because the birth experience is shared with partners, they should be included in their care.

Other mothers specified that their partners struggle emotionally and that they mask their feelings to be ‘strong’ for them. One mother said,

My husband, in all his wonderfulness and everything, you know, all of his support, you know, know he struggled too, And we didn't – we didn't talk about that struggle until months later”. He was like, ‘No, I was not handling it well. And, you know, I was emotional, but I didn't know where to – where to put those emotions.

Some mothers also suggested ways to include friends and families involve providing emotional support services for dads and having family members at the NICU with them.

Other unique ways to support the Black community

Most mothers discussed that the support they receive or need, particularly from family and friends, is often not scientifically accurate because of long-held myths and misconceptions about maternal care. One sub-theme emerged related to dispelling myths within the Black communities.

Of interest, few participants discussed the issue of medical mistrust within the Black community, which has given rise to myths and misconceptions about maternal care. As a result, they disregard accurate scientific information when people from other racial/ethnic groups share it, allowing myths and misconceptions to flourish from generation to generation. As a result, mothers decried the importance of dispelling inaccurate health information within the larger Black community through education and sensitization. A participant shared additional insights

Specifics to the African-American community. Dispelling myths. I think we're still in a society where myths versus facts versus tales that have been stories that have been passed on, unfortunately, usually negative, impact the health care decisions that we take. So, how to dispel the myths, not just with the parents, but within the larger circle, you know? Whom we actually call a friend might be someone that, you know, we know – we've known for 30 or more years … we're talking about sensitizing, communicating, as well as educating maybe a little our community and our social circles because they have a very large influence in the decisions that we take.

Discussion

This study aimed to understand the birth experiences, perceived provider communication, and support needs of Black mothers in the NICU using BFT and GT. Mothers narrated salient points that influence NICU hospitalization: maternal care/nursing experiences, interactions in the NICU, and the perceived support needed that might attenuate negative care and birth experiences. Our results suggest that while multiple factors shape the NICU experience independent of race, racially-motivated care remains pervasive and latent in the NICU even among Black mothers from high socioeconomic status. The narratives gathered in this study reinforces the central tenets of BFT: Black mothers’ NICU experiences are influenced, partly by past and current prejudices in the healthcare system and society. Additionally, findings demonstrate the impetus of incorporating Black mother's viewpoints and perceptions toward promoting culturally concordant care. Consequently, our study adds to the body of knowledge calling for policies and public health strategies to dismantle racism in all its forms that perpetuate poor quality of care and outcomes for Black women and women of color in general.

Similar to previous research (Parker et al. 2018), we found that diverse encounters within the maternal and nursing care domain shaped the NICU experience. Although some experiences (e.g. being unprepared or having limited knowledge about birth) are often independent of race and ethnicity, our study spotlights the need to address health inequities that compound birth experiences and outcomes even before conception for Black birthing patients. For example, most mothers in this study decried the lack of inclusion in decision-making about their care or infant. It was unsurprising considering that there were reports of biased provider attitudes leading to receiving low-quality care. Furthermore, this study demonstrates that implicit bias is prevalent before, during, and after pregnancy and childbirth, complicating Black maternal outcomes. As such, incorporating a life course and holistic approach embedded in an intersectionality mindset may close maternal health gaps and promote health equity and outcomes for Black mothers. (Brantley 2023). Based on our findings, health practitioners should provide Black women with scientifically accurate and evidence-based health information about their sexual and reproductive health before pregnancy to empower them with skills and competencies to navigate the healthcare systems. For instance, culturally responsivive health education and promotion should be prioritized during preconception, to identify health conditions that could put Black mothers at risk of adverse birth outcomes (Dorsey et al. 2022). Additionally, considering that most PTB are spontaneous, with higher rates of PTB among Black mothers, efforts to educate mothers about the risk factors for PTB and to advocate for system-level changes to eliminate inequities in PTB and outcomes must be encouraged. Furthermore, because the NICU serves full-term infants needing specialized care, researchers, practitioners, and clinicians must consider the unique the needs of mothers with full-term infants to ensure all Black patients and families in the NICU receive quality and dignified health services and care.

Concerning interactions in the NICU, some mothers echoed similar negative sentiments. While we did not explicitly measure racism, we can infer that some experiences recounted in this study (e.g. discriminatory care leading to self-advocacy through diverse strategies, such as researching medical content to stimulate intelligent conversations to balance the patient-provider power dynamics) are unique to Black birthing people and are grounded in racially motivated care. Brantley (2023) noted that multiple and tremendous social structures inhibit the health and well-being of Black mothers. As such, research should routinely incorporate racially congruent measures to provide nuanced insights into the factors affecting Black mothers. Thus, our study supports the literature calling for quality improvement strategies to measure racial discrimination in the NICU and obstetric setting to achieve equitable care and outcomes. For example, VanGompel and colleagues (White VanGompel et al. 2022) developed the PREM-OB scale that centers on the experiences of Black mothers to evaluate obstetric racism as a driver of disparate maternal health outcomes. Moreover, because racism happens through different avenues, quality improvement strategies should adopt a socioecological approach: individual, intrapersonal, community, and societal influences (Noursi, Saluja, and Richey 2021).

Furthermore, our study found that communicating with other mothers in the NICU positively impacts the overall birth experience. The reason behind this outlook is plausible, given the impact of peer support on health outcomes. As a result, there's a need to incorporate strategies that include peer support services through a trauma-informed care lens in the NICU setting. Although there is limited research on the intersection of peer support, race, and the NICU, previous research has shown promising results that peer support in the NICU may be effective in improving mental health well being (Fratantoni et al. 2022; Rossman, Greene, and Meier 2015). Future research is thus needed in this area.

This study also sought to understand the support needs that might mitigate negative experiences in the NICU. Mothers discussed several ways the NICU hospitalization could be enhanced, such as prioritizing self, embracing positive health-seeking behaviors, culturally responsive care, including social networks in their care process, and unique needs within the Black community. These findings mirror the literature and highlight the importance of centering the voices of Black mothers in their care (Houston and Walker 2022), a core BFT principle – that is, conducting research and designing public health programs from Black women’s standpoint because in doing so, the nuances of lived, psychological, and cultural experiences that are often discounted are captured. Previous research indicates that amplifying Black voices in their care ensures culturally respectful care, influencing healthcare outcomes (Ajayi and Garney 2022; Joo and Liu 2021). Using the feedback from mothers in this study, methods incorporating culturally responsive care in the healthcare setting should include having a diverse workforce that looks like and understands them, providing follow-up or post-discharge care, and implementing family-centered care. Additionally, mothers stressed that dismantling the ‘strong Black woman’ phenomenon (Nelson, Cardemil, and Adeoye 2016) and, importantly, avenues to build trust within the Black community must be encouraged at the individual and community-level.

In conclusion, our study revealed an interesting pattern across the domains and themes shaping Black mothers’ NICU experience: Black mothers experience racially motivated care even before the NICU. Importantly, regardless of the year of birth reported in this study (between 2008 and 2021), the narratives shared were congruent, suggesting that despite emerging maternal health policies or advanced health technology, the road to Black maternal health equity is still murky. As a result, it is incumbent that deliberate and concerted multilevel strategies to eradicate racism in all forms be implemented to advance Black maternal health equity.

Strengths and limitations

Our study substantially adds to the growing body of maternal health disparity research, indicating that racism plays an important role in Black maternal health in the US. Using BFT and GT throughout this research process and a conceptually grounded model helped conceptualize our findings in the sociocultural context of perpetuating disproportionate care. By consulting Black mothers and professionals in developing the interview guide, we incorporated elements of BFT, which acknowledges the plurality of intelligence among Black mothers, notwithstanding social class or hierarchy, and puts forth the standpoint of Black mothers to ascertain that research is done with and not for Black people. In addition, our study demonstrated that experiencing racially-motivated care is not dependent on low socioeconomic status alone. Again, this research substantiates the BFT because it elucidates that racial discrimination is experienced across all social classes and structures in the Black community and that high social class alone is not a protective factor against discriminatory healthcare. Even though our sample can be characterized as having high socioeconomic status, reports of discrimination and differential treatment due to race were widely reported.

However, this study should be interpreted in light of its limitations. First, this study only captures the viewpoints of Black mothers, which may limit comprehensive knowledge of the factors shaping the NICU experience. Ideally, a balanced perspective including providers and social networks (i.e. dads, partners, or family members) would be appropriate.

Similarly, we did not include mothers from other racial groups. Including mothers from different racial/ethnic groups may have provided a basis for comparative analysis to investigate the differential patterns in NICU experiences. Another important limitation is that we cannot conclusively infer that racism was the root cause of the mother’s experiences because we did not explicitly measure racism. However, the mother's narrative supports the literature, suggesting that racially motivated care remains pervasive in the US. In addition, we used a convenience sample recruited online. Mothers were likely located across the US; given the variations in state laws or other region-specific factors, birth experiences might differ. Yet, this study did not enquire whether or how geography, type of hospital, or level of NICU facility might have impacted the birth experiences. Lastly, we recruited our sample from the internet, which comprised people from high socioeconomic status: a limitation inherent to research using online recruitment. As a result, the experiences expressed in this study may differ from those in low-income households because it is likely that they have the structural advantage and the financial wherewithal to increased array of services that can bolster their birth experiences (e.g. all the mothers in this study were employed and had private health insurance) These limitations notwithstanding, our study supports the literature calling for equitable healthcare in the US.

Conclusion

Our study adds to the growing literature championing Black maternal health equity and multilevel quality improvement interventions to end obstetric racism. While the literature often calls for public health efforts targeting women from low socioeconomic status, findings from this study suggest that policies and programs should be based on race, irrespective of the economic or financial background, while also utilizing a life course, holistic, and intersectional approach These findings demonstrate the need for holistic sexual and reproductive health education and counseling pre-and post-conception to empower Black birthing people to make an informed decision about their care and babies, adequately advocate for the care they deserve, and navigate multiple hospital appointments. Furthermore, our study highlights the imperative of situating research on Black mothers’ voices and lived experiences so that interventions, policies, and practices are culturally responsive. Providers should be trained to provide emphatic and respectful care regarding information-sharing and communication.

Similarly, community efforts and strengthening should be encouraged to support NICU programs and policies. This study also supports the need for a family-centered NICU with diverse care teams (i.e. traditional providers and peer-support staff such as midwives or doulas) recognizing that the birth experience is not singular to the mother or birthing person. Utilizing a trauma-informed lens is also crucial in the NICU to address the social determinants of health that perpetuate adverse health outcomes and should be a mainstay in healthcare delivery. Another, albeit most important, implication of this study is that it highlights the urgent need for mechanisms to end racism and all the ‘isms’ that continue to perpetuate health disparities and outcomes in the US.

Ethics approval and consent to participate

We obtained approval from the research ethics boards of the [blinded for peer-review] Institutional Review Board. All participants gave written informed consent.

Acknowledgment

The authors profoundly thank the brave Black mothers and professionals who, without their stories, this work would never have seen the light of day.

Disclosure statement

No potential conflict of interest was reported by the author(s).