“I Felt Like I Was a Part of Trying to Keep My Baby Alive”: Perspectives of Hispanic and Non-Hispanic Black Mothers in Providing Milk for Their Very Preterm Infants

Abstract

Background:

Compared with non-Hispanic white, Hispanic and non-Hispanic black mothers of very preterm infants are less likely to provide mother's milk at the point of hospital discharge; the perspectives of these mothers are poorly understood.

Objectives:

To examine the perceived barriers and facilitators of providing milk for very preterm infants during the hospitalization among Hispanic and non-Hispanic black mothers.

Materials and Methods:

We conducted 23 in-depth, semistructured interviews of English and Spanish-speaking Hispanic and non-Hispanic black mothers that initiated milk production for their very preterm infants, ≤1,750 g at birth. Following thematic saturation, results were validated through expert triangulation and member checking.

Results:

Twelve mothers were Hispanic, where three were English speaking and nine were Spanish speaking. Eleven mothers were non-Hispanic black and English speaking. We found themes pertaining to general experiences: (1) Breastfeeding intent impacts mothers' success in providing milk throughout the hospitalization; (2) Pumping milk for a hospitalized infant is repetitive, exhausting, and does not elicit the same emotional connection as breastfeeding; (3) Hospital providers are an important source of support, when sufficient time is spent to address ongoing issues; (4) Providing milk creates a unique sense of purpose when mothers otherwise feel a lack of control; and we found themes pertaining to the experiences of Hispanic and non-Hispanic black mothers: (1) Breastfeeding as a cultural norm influences mothers' intent to initiate and continue breastfeeding; (2) Hospital staff are viewed as more supportive when interactions and treatment are perceived as racially/ethnically unbiased and (3) when communication occurs in the primary language; and (4) Mother–infant separation creates logistical challenges that negatively impact ongoing milk production.

Conclusions:

While providing milk for a hospitalized very preterm infant is exhausting, and logistically challenging, Hispanic and non-Hispanic black mothers are inspired to do so because of their intent to breastfeed, support from hospital providers, and feelings of purpose.

Introduction

Mother's milk is the optimal feeding choice for very preterm infants because of numerous health benefits, including reduction in serious blood stream¹ and intestinal infections^2,3 and improvement in neurodevelopment.^4,5 Racial/ethnic disparities in mortality and morbidities of very preterm infants in the United States are well recognized^6–8and mother's milk use at the point of hospital discharge also varies by race/ethnicity, where Hispanic^6,9 and non-Hispanic black^6,9,10 mothers are less likely to provide mother's milk for their very preterm infants, as compared with non-Hispanic white mothers. Among a large cohort of >18,000 very preterm infants in California born in the past decade, 65% of Hispanics and 51% of non-Hispanic blacks received mother's milk at hospital discharge, compared with 71% of non-Hispanic whites.⁶ Racial/ethnic disparities of similar magnitude have been reported among mothers of term infants providing exclusive breast milk at 6 and 12 months.¹¹

While the reasons for racial/ethnic disparities in breastfeeding among healthy term infants have been well described, the reasons for these disparities among hospitalized very preterm infants are unclear. In term infants, barriers to long-term breastfeeding among Hispanic and non-Hispanic black mothers, particularly those of low income, include lack of access to information that promotes breastfeeding, acculturation, language and literacy barriers, cultural acceptance, feeding choice, employment, and medical morbidities.^12–23

Providing milk for a hospitalized very preterm infant is substantially different than providing milk for a healthy infant. Very preterm infants are hospitalized for weeks to months, during which time mothers are often separated from their infants, except for relatively brief periods when mothers are able to visit. Birth of a very preterm infant and the mother–infant separation that ensues are associated with maternal stress and anxiety,²⁴ and less time to engage in skin-to-skin care,²⁵ which are barriers to providing mother's milk.^25–28 Mothers of very preterm infants are pump dependent and unable to directly feed at the breast, as their infants' oral feeding skills are too immature for a large portion of the hospitalization. Mothers face barriers that prevent them from pumping as per onerous published guidelines; every 2–3 hours, or at least eight times per day.^29,30 Such barriers include return to work, pumping fatigue, and other time-intensive priorities.

Despite these barriers, Hispanic and non-Hispanic black mothers of very preterm infants initiate breastfeeding at extremely high rates at some centers (>95%).^31,32 This may be because these mothers are highly motivated to provide milk for their infants, as their infants are perceived as medically fragile and mother's milk is extremely beneficial; however, this has not been well studied. Mothers of hospitalized very preterm infants also interact frequently with hospital staff, exposing mothers to education and hospital practices that can facilitate successful milk production.^33,34

The perceptions of Hispanic and non-Hispanic black mothers of very preterm infants in providing milk throughout the hospitalization have not been well explored. Understanding the experiences of Hispanic and non-Hispanic black mothers is a crucial initial step toward developing interventions that may specifically address the needs of this population. The purpose of our qualitative study was to explore the perceived barriers and facilitators of providing milk for hospitalized very preterm infants among Hispanic and non-Hispanic black mothers, with the goal of identifying potential intervention targets for future study.

Materials and Methods

Setting and population

We sought to obtain a broad range of perspectives in our recruitment. We recruited participants from two hospitals: Boston Medical Center (BMC), a Boston, Massachusetts hospital with a 22-bed level 3 Neonatal Intensive Care Unit (NICU), where ∼50% of patients identify as non-Hispanic black and 25% identify as Hispanic, and Beth Israel Deaconess Medical Center (BIDMC), a 48-bed level 3 NICU in Boston, Massachusetts, where ∼14% of patients identify as non-Hispanic black and 13% identify as Hispanic. BMC is a Baby-Friendly designated hospital and has 0.7 full-time equivalent International Board-Certified Lactation Consultants (IBCLCs) specific to the NICU. From 2015 to 2017, at BMC, the rate of mother's milk initiation among very preterm infants was 94% and the rate of mother's milk use at the time of discharge was 47%. BIDMC is not a Baby-Friendly designated hospital and has no NICU-specific IBCLC coverage. From 2015 to 2017, among very preterm infants at BIDMC, the rate of mother's milk initiation was 85% and rate of mother's milk use was 63% at the time of discharge.

Mothers were included if they were ≥18 years old at the time of delivery, spoke English or Spanish, initiated milk production to any extent, and gave birth to infants that were ≤1,750 g. We approached mothers for recruitment and performed the interviews when their infants were 2–18 months old because we wanted to gain perspectives of mothers that had initiated milk production and experienced prolonged mother–infant separation during the infant hospitalization. Because an inclusion criterion was initiation of mother's milk production, only mothers eligible to make milk for their infants per hospital criteria were included (absence of maternal HIV, medications contraindicated in breastfeeding, and illicit substance use in the final weeks of pregnancy and at delivery). Infant medical records were reviewed to determine eligibility and mothers were approached in person or by phone. At the time of recruitment, we explained that we were interested in the perspectives of non-Hispanic black and Hispanic mothers. Interviews were conducted in the hospital and at mothers' homes from October 2016 until May 2018. Mothers received a $50 gift card incentive for participation. The Boston University Medical Center and Beth Israel Deaconess Medical Center Institutional Review Boards deemed this study exempt.

Development of the interview guide

At the start of the study, an interview guide was constructed with probe questions focused on uncovering barriers and supports that may serve as possible intervention targets for improvements in breastfeeding duration for non-Hispanic black and Hispanic mothers. We included questions based on previously described factors known to impact duration of breastfeeding for mothers of preterm infants, including breastfeeding intent,³⁵ initiation of breastfeeding,³⁶ and continued breastfeeding^22,23,25,37 (ongoing pumping, return-to-work, and skin-to-skin). We also included questions related to family experiences with breastfeeding and staff communication, which we hypothesized may impact breastfeeding among non-Hispanic black and Hispanic mothers of hospitalized very preterm infants. Questions were asked in an open-ended format. After analyzing transcripts and discussing results through expert triangulation, we revised the question guide, and additionally added open-ended questions about parenting in the NICU, breastfeeding in the mothers' communities, experiences exclusively pumping instead of breastfeeding, other stressful life events, interactions with other NICU parents and team, and different treatment that mothers may have faced due to their race/ethnicity (Table 1).

Table 1.

Question Guide to Assess Possible Barriers and Facilitators to Making Breast Milk

General introductory questions

Tell me about your pregnancy and birth.

What was a typical day like while your baby was in the NICU?^a

Tell me what parenting has been like since your baby was born. What has been the hardest part so far? Why?^b

What was it like to make milk for your baby?

Decisions to breastfeed

Breastfeeding intent

Before you delivered your baby, did you have any plans about providing milk for your baby?

Did people in your family breastfeed? What role did family play in your breastfeeding experience?

Tell me what breastfeeding is like in your community.^b

Breastfeeding in the NICU

Breastfeeding initiation

How did it make you feel, the first time you made breast milk for your baby?

Breastfeeding continuation—general

What was helpful for you to keep on making milk (pumping) for your baby?

What made it hard for you to keep on making milk (pumping) for your baby?

How did you feel when your milk supply started to drop? (only for relevant mothers)

Who helped you in making milk for your baby? Why was this person helpful?

Tell us what it was like to provide milk for your baby by pumping, instead of directly breastfeeding.^b

Did you have to go back to work? What was like to go back to work when your baby was still in the hospital? How did going back to work impact your experience in making breast milk?

Did you have help at home? In what ways did you get help?

Breastfeeding continuation—skin-to-skin

What was it like to hold your baby skin to skin?

How did it make you feel when you held your baby in skin-to-skin? What was helpful to you in holding your baby in skin-to-skin? What made it hard?

Communication and interactions in the NICU team

What was your interaction with the NICU team like?^b

What was your interaction with other NICU parents like?^b

(Spanish speaking mothers) What was it like to communicate with the staff in Spanish?

Do you feel like you were treated differently than other mothers in the NICU because of your race/ethnicity? Tell me more about that.^b

Other

Is there anything else in your life besides having a baby in the NICU that has been stressful for you?^b

Do you have any comments or thoughts about how the NICU team could do a better job at helping non-Hispanic black and Hispanic mothers make milk for their infants?

This question was removed during the process of the interviews, and replaced with the question below, “Tell me what parenting has been like since your baby was born. What has been the hardest part so far? Why?”

These questions were added during the course of the iterative analysis and following feedback from expert triangulation.

NICU, neonatal intensive care unit.

Data collection

The in-depth, semistructured interviews were conducted in English or Spanish by a single, bilingual investigator (A.M.L.). Interviews lasted 20–40 minutes and were audiotaped and transcribed verbatim. Interviews in Spanish were additionally translated. Basic demographic and health data were abstracted from the medical record for the purposes of describing the study population.

Data analysis

We used the Grounded Theory approach³⁸ to qualitative analysis, building theory from the data through a systematic, iterative process of data collection and analysis. Each transcript was reviewed by investigators (M.G.P., A.M.L., and N.S.K.) with expertise in neonatology and breastfeeding. To maximize the reliability of the analysis, each transcript was independently reviewed by two members of the group to identify tentative domains for coding. The group met at regular intervals to decide on a coding structure before independently coding the transcripts and meeting again to assure uniform coding of each interview. Any disagreements were resolved through discussion. An iterative approach to data analysis allowed the team to continuously refine interview questions, develop themes, and monitor for thematic saturation. Data collection ended when the group established a set of themes and no new ones were identified (thematic saturation).

To ensure data reliability,^39,40 the study team triangulated findings three times with experts in neonatal health service research and breastfeeding, whereby investigators reviewed the study's methodology, coding scheme, and results. The study team also performed member checking, whereby findings were reviewed with a subset of study participants to ensure their accuracy and intended meaning.

Results

Characteristics of the 23 Hispanic and non-Hispanic black mothers are shown in Table 2. Twelve mothers were Hispanic, three of which spoke English and nine of which spoke Spanish. Eleven mothers were non-Hispanic black, and all spoke English. Seventy percent of our mothers were still providing some milk on the day of discharge or transfer from the NICU. Four themes emerged related to the more general experiences making milk for a hospitalized very preterm infant, and four themes emerged related to the experience of being a Hispanic or non-Hispanic black mother of a hospitalized infant in the NICU. Quotes are presented in Table 3.

Table 2.

Participant Characteristics (n = 23)

	Median (range)
Maternal age, years	28 (21–40)
Infant gestational age, weeks	30 1/7 (24 4/7 to 37 0/7)
Infant birth weight, grams	1,015 (620–1,760)

	n (%)
Non-Hispanic black	11 (48%)
English speaking (all 11)
Hispanic (any race)	12 (52%)
English speaking 3 of 12
Spanish speaking 9 of 12
Mother provided milk on the day of discharge/transfer from NICU	16 (70%)
Multiples	2 (9%)
Cesarean delivery (versus vaginal)	17 (74%)

NICU, neonatal intensive care unit.

Table 3.

Themes, Subthemes, and Quotes

Theme	Subtheme	Quotes
General experiences making milk for a hospitalized very preterm infant
1. Breastfeeding intent contributes to mothers' success in providing milk throughout the hospitalization	Breast milk benefits for premature infants	• If they [the babies] weren't in the NICU, I wouldn't have breastfed. I would have just given them formula• I know it's very important for all children to have breastmilk; especially for children who are born so small, with few defenses
	Emotional connection	• I was happy because I've always liked to breastfeed my kids, to me that's a very beautiful experience
2. Pumping milk for a hospitalized infant is repetitive and exhausting, and does not elicit the same emotional connection as actual breastfeeding	Pumping is not the same as breastfeeding	• That [the pump] is not a nice thing, nobody likes to get up and pump• I think breastfeeding and pumping are two different things… like if I would have breastfed her that probably would have been a lot easier than just pumping
	Repetition, exhaustion	• I have to pump every two hours and get it done, but there is always something to do, getting the house together for the baby, moving furniture, vacuuming, sanitizing, dusting, folding and rearranging and do it all over again
	Frustration	• I felt helpless that I couldn't feed my daughter as I wanted to. When I was home and I would do it [pump] every 2–3 hours… It was frustrating for me to pump out milk because I didn't see the quantity I wanted, or that they expected me to take the hospital.• When I put him on my breasts, he started getting frustrated because it [the milk] wasn't coming out as fast or he didn't have to do as much work because he was used to the bottle. He had already been used to that bottle for a so long, so he would get frustrated. Oh my God. So I gave up.
3. Hospital providers are an important source of emotional and technical support, when sufficient time is spent to address ongoing issues	Positive staff support	• But it was very tough and I felt really bad… I didn't know how to help her. But the doctors told me everything was going to be fine. They comforted me and told me they had all the necessary equipment and specialists to help her survive• The nurses—they're like family. Because they know your name, they know your needs. They're great support. I think the staff is awesome
	Exclusive pumping was foreign to family/friends, but not NICU staff	• She [the grandmother] was like, it doesn't seem like you guys need your parents or grandparents or anybody else to help you.
	Negative staff support	• I didn't really have anybody to talk to. The lactation teacher came and spoke to me, but it was like, a five second conversation. They didn't say much to me about what to do.
4. Making milk creates a unique sense of purpose, when mothers otherwise feel a lack of control	Sense of purpose and pride in providing milk	• It was tough, it was a good experience and I felt like I was a part of trying to keep my baby alive• I feel honor within me that I'm able to do that• He got it when it was most important to help develop whatever it is that needed to be developed in his body, the breast milk definitely helped him, I feel good about that, so it kind of keeps me in this ‘I did it window’ instead of ‘I didn't do it'
	Sense of loss when unable to provide milk	• Then my milk supply decreased and I was so sad. I'm like, ‘No.’ … I woke up at like 3 in the morning, I'm like, ‘What did I do? My baby is not going to have milk. I don't have milk.’… I was so sad then
Unique perspectives making milk for hospitalized very preterm infants among Hispanic and non-Hispanic black mothers
1. Breastfeeding as a cultural norm influences mothers' intent to initiate and continue breastfeeding	Family	• Well, in my family, they all say that as long as we can produce milk, the baby won't have any problems because there's nothing better than breastmilk.• [Grandmother] was like, it doesn't seem like you guys need your parents or your grandparents or anybody else to help you because it seems like all this new technology [pump] comes with booklets on how to do it.
	Community	• Then it's not so awkward breastfeeding at my son's school's playground. There were other moms doing it, so I was like, ‘Okay. It's normal now. It's a trend.’• I'm from Haiti. I grew up in a country that for the first six months that's what they did. So when I have my baby—that's my plan to breastfeed for more than six months.
2. Hospital staff are viewed as more supportive when interactions and treatment are perceived as racially/ethnically unbiased	Bias and/or Discrimination	• The manners were bad from the moment I arrived, because I felt they treated me not like the patient I was supposed to be… they didn't treat me the way they should have. I wasn't asking to be treated differently, or to be exclusive, but to be treated like everyone else.
	Positive experiences in the absence of bias or discrimination	• They were so nice, I mean they don't discriminate because I'm black or they're white… I like the way they treat me• Being there [the NICU], I didn't even feel like color mattered. It doesn't matter, being there. I've been on other units … and color matters, you know? It's like, I don't know, like a scale, I guess, or like a place, this one comes first, and then those ones fall after, but not in the NICU. I didn't feel like that at all, not at all. I felt the same.
3. Hospital staff are viewed as more supportive when communication occurs in the primary language	Challenges and work-arounds with language barriers	• Most nurses speak English, not Spanish. So there were many times that I wanted to discuss things with them and they didn't understand me… It's quite difficult and complex. When you don't know English it's quite hard.• Yes, I used an interpreter. Well, I actually learned many everyday words from the NICU.
	Perspectives on the staff	• They make an effort, I don't speak English well, but they go the extra mile to help me understand and they support us.• I think it's also difficult for them [the nurses], to speak to us and not have us understand them.
	Fear/Shame when unable to communicate	• …sometimes, out of fear or shame, you don't tell them, okay, I need an interpreter.
4. Mother–infant separation during the prolonged hospitalization creates logistical challenges and maternal stress that negatively impact ongoing milk production	Logistical and financial challenges	• I spent so much of my money on cabs, coming back and forth to the hospital, and I had to space out times. I didn't have the money to go back and forth. I think that's the worst part of them being in the hospital, is transportation. That's it• [From a Spanish-speaking mother] I had to travel by train, because I didn't know my way around here. So I had to learn. I had to learn to ride the train… I had to go to the hospital every day and always someone different at the entrance, and having to tell them in English that I was there to see my baby, that's something quite difficult.
	Stress of mother–infant separation	• I could not skip seeing her one day, so that caused a lot of stress. Not only financially, but also physically, in my health. It was exhausting to go back and forth every day.• So it wasn't easy for me. I did get a little depressed… Sometimes I would leave the place [NICU] crying. Many people, or the nurses would say… everything is fine, but as a mom, you don't want to leave your children there. It's hard to see them there. You want to have them with you, you want to have them at home, give them love and care, not leave them somewhere else. So, it was like dividing myself. Sometimes I was with her, sometimes I was with my other daughter. And that time was very hard for me• Sometimes I think it [lack of milk production] was because of some stress, because… it was quite a complicated experience. I had just arrived here [the US]… I had him in the hospital… it was quite hard. So I think I run out of milk because of the stress

NICU, neonatal intensive care unit.

General experiences making milk for a hospitalized, very preterm infant

Theme 1: breastfeeding intent contributes to mothers' success in providing milk throughout the hospitalization

Mothers we interviewed intended to provide milk for their infants based on beliefs that breast milk was the “healthiest” nutrition source and had strong benefits for infants. Some mothers reported that they decided to breastfeed because they believed the health benefits were even more important when their infant was very preterm. Intent to provide milk was also driven by perceptions that breastfeeding was a way to emotionally connect with an infant.

Theme 2: pumping milk for a hospitalized infant is repetitive and exhausting, and does not elicit the same emotional connection as actual breastfeeding

All mothers we interviewed described feelings of joy and happiness when either direct breastfeeding or performing skin-to-skin care. In contrast, no mother enjoyed using a breast pump to make milk because pumping did not have the same emotional connection as breastfeeding. Mothers found use of a pump, cleaning the pump supplies, and packaging and storing the milk exhausting and repetitive. The process of pumping was stressful and frustrating. Even with repeated pumping, many mothers reported that the volume of milk they were able to make decreased over time. This made some mothers feel discouraged. Mothers were frustrated when their infants were unable to latch at the breast because they got “used to bottles,” in the NICU. This meant mothers were pumping and feeding their infants with bottles, which was even more time consuming.

Theme 3: hospital providers are an important source of emotional and technical support, when sufficient time is spent to address ongoing issues

Mothers described the birth of a very preterm infant as an unexpected and traumatic experience, which invoked a sense of hopelessness. Mothers felt a strong emotional connection to the doctors and nurses that cared for their very preterm infants, who were completely reliant on intensive neonatal care. The NICU staff helped with technical issues related to using breast pumps, milk supply, breast engorgement, latching, as well as motivation to keep pumping and perform skin-to-skin care as much as possible. Several mothers described the process of providing milk by exclusive pumping as foreign to family members or friends, but not hospital providers, which elevated the providers' role as sources of support. Not all mothers were positive about their experiences with hospital providers, however. Some mothers said their questions about lactation issues were not or insufficiently addressed, often because staff were too busy.

Theme 4: making milk creates a unique sense of purpose, when mothers otherwise feel a lack of control

Having a very preterm infant was overwhelming for mothers. Mothers described the NICU experience as “stressful,” “traumatic,” “depressing,” and “scary.” Many mothers felt minimal control over their situation. Providing milk for their infants gave mothers a sense of purpose and pride in contributing to the care of their infants. Even mothers that provided milk for only a short time felt fortunate that their infant received any of their own milk. In contrast, when mother's milk supply decreased or stopped, some mothers felt a sense of loss and defeat.

Unique perspectives making milk for hospitalized very preterm infants among Hispanic and non-Hispanic black mothers

Theme 1: breastfeeding as a cultural norm influences mothers' intent to initiate and continue breastfeeding

Breastfeeding as a cultural norm was an important component of breastfeeding intent for some mothers. Mothers explained that breastfeeding was a normal part of parenting among their immediate family members, within the countries they had come from, or among their current communities. Family and cultural support were not universally present for mothers, however, and mothers reported a range of individual experiences within both the Hispanic and non-Hispanic black communities. One mother described being “different from my family,” and making a choice to give her twin infants mother's milk instead of formula. For mothers that differed from the cultural norms of their families or communities, their intent to make milk and other supports by hospital providers contributed to their success in ongoing milk production.

Theme 2: hospital staff are viewed as more supportive when interactions and treatment are perceived as racially/ethnically unbiased

Non-Hispanic black and Hispanic mothers described situations when they received unfair treatment because of their race/ethnicity or because they could not speak English. Mothers expressed that they did not seek “special” treatment, but rather equal treatment. These situations led to mistrust in the medical team and one mother stated she never wanted to return to that particular area of the hospital again. Conversely, when mothers perceived equal treatment or when they felt that staff did not discriminate, they felt sincere appreciation and comfort. This led to enhanced trust in the hospital providers caring for their infants.

Theme 3: hospital staff are viewed as more supportive when communication occurs in the primary language

Communication and language preference was extremely important to the Spanish-speaking mothers we interviewed. Mothers found language barriers “difficult,” “frustrating,” and “complex.” Mothers emphasized the usefulness and importance of using Spanish interpreters by staff on a regular basis and greatly appreciated when staff made the effort. Several mothers reported that they learned a lot of English while listening to the staff, which also helped them communicate. One mother also indicated that the language barrier was frustrating to the staff, who had difficulty explaining important educational points about preterm infant care to the mothers. Getting in-person or phone interpreters took more time for the staff. Mothers also expressed fear and shame for asking for an interpreter, and subsequently would not advocate for one when they needed it.

Theme 4: mother–infant separation during the prolonged hospitalization creates logistical challenges and maternal stress that negatively impact ongoing milk production

Barriers to frequent visitation to the hospital included mothers' own return to work, their own medical care visits, and child care for siblings. Transportation issues were mentioned by nearly all mothers, and involved navigating public transportation, Uber, or rides from friends or family members, and severe weather. The Spanish-speaking mothers we interviewed expressed that navigating transportation logistics was particularly challenging and overwhelming with added language barriers. The financial burdens related to transportation and parking costs were enormous for some. Several mothers returned to work during the infants' hospital stay, due to financial reasons or short maternity leave. Finding time to pump at work was extremely difficult. These logistical issues impacted mothers' ability to maintain their milk production by frequent pumping.

Mother–infant separation was also physically exhausting and stressful. Mothers felt like they had to split their time between their hospitalized infants and their competing life priorities; this was emotionally draining. Several mothers attributed stress as an important barrier to making milk. One mother, who was a recent immigrant to Boston, expressed that the added stress from the experience of immigration, in addition to having a very preterm infant in the NICU, contributed to her inability to keep up her milk supply.

Discussion

We found that Hispanic and non-Hispanic black mothers succeeded at providing milk for their hospitalized very preterm infants because they had a strong belief that their milk was important for their infants' health and provided a sense of purpose, when mothers otherwise felt a lack of control. NICU providers played a key role in both technical and motivational support, particularly when providers communicated in the mother's preferred language and when mothers did not feel discriminated because of their race/ethnicity. The logistical challenges and stresses of frequent pumping and mother–infant separation were barriers to providing milk.

Development of effective interventions to support Hispanic and non-Hispanic black mothers in providing milk for very preterm infants in the United States is a public health priority because provision of mother's milk for this vulnerable population has robust health benefits. Findings from qualitative studies are critical for informing such interventions. Previous qualitative studies focused on understanding facilitators and barriers to breastfeeding success among Hispanic and non-Hispanic black populations have mainly focused on mothers of healthy infants^41–48 and may not be relevant to very preterm infants. Fewer studies have explored experiences of predominately non-Hispanic black^35,49,50 mothers of very preterm infants, and, to our knowledge, none have explored experiences of Hispanic mothers. Our study extends upon previous qualitative work, by exploring the perspectives of English and Spanish-speaking Hispanic and non-Hispanic black mothers of very preterm infants cared for in an urban, United States setting.

Our findings that intent to breastfeed was an important contributor to mothers' success in providing milk has been described among non-Hispanic black⁴⁴ and Hispanic⁵¹ populations in the United States. We also found that mothers of very preterm infants' decision to provide milk was strengthened by their belief that their milk was especially beneficial because of the vulnerable health of their very preterm infant, which is similar to another qualitative study.³⁵ The tremendous logistical challenges and exhaustion faced by mothers in pumping milk in the setting of maternal–infant separation has also been previously reported,^35,37,52,53 and the array of emotions felt by mothers while parenting and making milk for a hospitalized preterm infant has been explored.^35,37,52

We extend upon previous studies examining perspectives of mothers of hospitalized preterm infants by our finding that strong trust in NICU providers positively impacted mothers' success in providing milk, as family members and friends were not always aware of the unique challenges faced by these mothers. We additionally found that making milk created a sense of purpose, in a situation where mothers had minimal control over the complex medical care of their extremely vulnerable infants, a phenomenon that has not been previously well-described. Consequently, mothers felt a sense of loss when their milk supply lessened. Future intervention development may consider strategies to strengthen positive provider–mother interactions that build trust and engagement of mothers in the care of their hospitalized infants.

The Spanish-speaking Hispanic mothers indicated that the degree to which they felt supported by NICU providers was contingent upon providers communicating in Spanish. The extent that language preference impacts the effectiveness of provider–parent communication in the NICU has not been rigorously studied. Emerging studies have demonstrated that only a subset of hospitals have certified hospital-based Spanish interpreters,⁵⁴ Spanish-speaking families commonly experience communication difficulties,⁵⁵ and NICU staff believe that language barriers contribute to “neglectful care,” where NICU staff pay less attention to non-English-speaking families.⁵⁶ Our study, along with these aforementioned studies, suggest that future research should prioritize provider–parent communication among Spanish-speaking mothers.

Mothers in our study indicated that lack of perceived discrimination by race/ethnicity strengthened their relationship with NICU providers. A recent qualitative study of 324 accounts of disparities of NICU quality of care elicited by NICU providers and family members at a national conference in 2016 found that 26% of the accounts included “judgmental care,” where staff evaluated a family's moral status based on factors such as race, class, or immigration status.⁵⁶ As these data showed that discrimination by race/ethnicity among NICU providers is common,⁵⁶ and our study showed that mothers receive substantial technical and motivational support from NICU providers, addressing strategies to minimize racial/ethnic biases in future interventional work to support breastfeeding for Hispanic and non-Hispanic black mothers is critical.

Strengths of this study are the inclusion of both English- and Spanish-speaking non-Hispanic black and Hispanic mothers of very preterm infants, as this represents a highly vulnerable and disadvantaged population. Because we interviewed mothers living in an urban environment, the perspectives of mothers from rural areas, who may have even more intensive barriers with respect to mother–infant separation, may have different perspectives. Twenty-one of 23 mothers in our study were cared for at a large, safety-net hospital that serves predominately non-Hispanic black and Hispanic families. It is possible that different perspectives may have emerged among non-Hispanic black and Hispanic mothers cared for at hospitals that serve these populations less frequently. Mothers in our study may have been reluctant to criticize the support they felt from NICU providers and/or speak negatively about their experience producing milk. We tried to minimize this by using an interviewer (A.M.L.) who did not work in the NICU setting and by reviewing with mothers during recruitment that their responses were anonymous. Seventy percent of the mothers in our study continued to make milk until discharge; thus, it is possible that mothers that did not provide milk or provided milk for only a short time may have had different perspectives. Researcher bias is a possibility in qualitative research; we minimized this by using two coders, discussing discrepancies, expert triangulation, and member checking.

Conclusions

NICU providers play a critical role in the technical and emotional support of Hispanic and non-Hispanic black mothers of very preterm infants in providing milk during the NICU hospitalization. Mothers are highly motivated to provide milk for their infants, despite the tremendous logical barriers they face in visiting their infants and exhaustion of repetitive pumping. Mothers expressed that NICU provider communication in the preferred language and without perceptions of discrimination were strong facilitators of ongoing milk production. This study highlights the importance of interactions between NICU providers and mothers of Hispanic and non-Hispanic black very preterm infants in the promotion of breastfeeding.

Footnotes

Acknowledgments

The authors acknowledge the mothers who participated in this qualitative study. Funding for this study was provided by the W.K. Kellogg Foundation (P3031871).

Disclosure Statement

No competing financial interests exist.

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