A total of 16 people, including 8 staff and 8 parents, participated across 4 focus groups. Table 1 describes participant demographics. There was similar representation of females (n = 9, 56.3%) and males (n = 7 43.8%). Participants were racially and ethnically diverse with most participants identifying as Black (n = 6, 37.5%) or Latinx (n = 5, 31.3%). Participating staff represented a diverse multidisciplinary group of clinicians and clinician leaders, and family social support staff (n = 4, n = 4). Most participants attended one session (n = 9, 56.3%) although many attended multiple sessions (n = 7, 43.8%). Six audio diaries were completed by staff and parents. Six themes emerged from the data, including 3 themes describing mechanisms by which racial inequities occurred (Table 2) and 3 themes of recommendations to address them, summarized below (Table 3). Racial inequities occurred through power dynamics, dehumanization and racism (interpersonal and institutional), and societal inequities. Recommendations included redistributing power by treating parents as true care partners, transforming space and staff to promote humanism and inclusion, and mitigating harm through peer support and resource allocation.

Table 1 Focus group participant demographics.Table 2 Mechanisms of racial inequities themes and exemplar quotes.Table 3 Recommendations to address racial inequities and exemplar quotes.THEME 1: Mechanism: complex power dynamics

Racial inequities occur through multiple and complex power dynamics between parents and staff. Parents enter the NICU space with little power compared to staff who have both medical knowledge and the ability to initiate disciplinary action. In response, parents engaged in self-advocacy or silence for fear of retribution. Both parents and staff acknowledged power dynamics and hierarchy within the medical system as contributors to racial inequities in healthcare. While all parents stated their general gratitude for healthcare professionals and their care, they also highlighted the power to make medical decisions for hospitalized children that impact their health and wellbeing as inherent to the role. The severity and consequence of the power dynamic was articulated by a Black parent to staff, “We’re all humans but your hands are instruments of life and death and your mind and the way you communicate with us is either going to put us at peace or at hell.” A staff member also acknowledged this shared understanding of an inherent power dynamic in the medical system from their interactions with parents, “I [hear from] Latina moms feeling like they can’t speak up. They don’t have a voice and they just kind of have to whatever the medical team says. Like just kind of follow their recommendations because they’re the ones that are in power and have authority.” In addition to making medical decisions, parents also noted staff member’s power to exercise an extensive range of disciplinary action, “You all got the right to call CPS. You all got the right to call security. You got the right to stop us from coming up here. You all got so many rights.”

Yet another power dynamic often begins as parents first enter the NICU is a medical knowledge differential. As the hospital stay lengthens and medical complications arise, this knowledge gap can widen rather than close, depending on the extent of shared communication. Parents all expressed a strong desire to close the knowledge gap throughout their hospital stay. When one Black parent sensed the knowledge gap widening, she met her medical team with self-advocacy, making her needs clear: “I need to know. I want to be informed. I want to be on top of it. I need your number, your number, your number. I’m going to email you. I’m going to text you. I want to be in it because and for me to be in it I need a team behind me. And I’m working with over 20 people from physical therapy, doctors, specialists, the list goes on. But essentially I need my team because my team is going to help me with my son. At first I didn’t have a team. I was still navigating who was who at rounds, talking to different doctors, putting my plan together and what I felt like my son needed, and I was heard.” Here she redistributes the power imbalance by painting a clear picture of the child’s health and well-being team with herself centered in the middle as the child’s primary parent and the medical providers surrounding her.

Other families were silenced by fear of retribution. One staff member said, “That’s something that I often hear from families. They’ll come to me and they’ll express concerns about the nursing care or not agreeing with the doctors as something was said or done that they were really unhappy about and I’m like, ‘Okay, what can we do? Can we talk to the charge nurse or the [nurse manager]’ and oftentimes a lot of the moms will say, ‘No, I just want to tell you but I don’t want anyone else to know, because … what if they don’t take care of my baby.’” One Latinx parent said, “I did talk a lot about it [unequal care] with my social worker. But also there exists this, like … fear that he would be left alone, and because I complained they are going to neglect him. Or, they are going to treat me like – ‘ah, she complains a lot; she doesn’t like what we do.’”

THEME 2: Recommendation: redistribute power by treating families as true care partners through orientation, education, and support without disciplinary action

There was unanimous desire among the participants for a complete transfer of knowledge from medical providers to parents throughout the hospital stay regarding their infant’s condition, future milestones, potential complications, and how to care for their complex medical needs at home. This starts with a timely and thorough orientation of the NICU, including what resources and personnel are available and how to access them. Different families may need different modes of orientation and all should be available, from an informational sheet of resources and phone numbers in each hospital room to a video and/or in-person orientation. A Black parent asks that parents be shown compassion and given the benefit of the doubt with a plan and therefore future to hope for, “So… acknowledge the people that is trying, that is caring, that wants their child to be healthy. Give them parents plans. Give them goals. ‘Hey, we wanna do this. In six months, this should happen,’ or, ‘three months, we can be here.’” Parents desired to be true care partners during the hospitalization in anticipation of becoming the primary parents at home. Participants emphasized the importance of training for hospital discharge and a life at home when the hospital staff are no longer there. Families described their efforts navigating complex systems, including outpatient medical and therapy appointments, equipment companies, and nursing support.

Participants also recommended providing added layers of support when a parent presents in crisis and strongly recommended against disciplinary actions. One Black parent imagined what families are experiencing when presented with disciplinary action: “Rather than giving you the support that you’re longing for. What do we say when a child acts out? They need attention. They just want to be heard. Same thing on an adult when they act out. Something’s lacking. They need something … Let’s get to the root of the problem. Let’s sit this family down. Maybe this family needs some extra support. Maybe this family isn’t being heard. Maybe this family is lacking something outside of what’s wrong with the child.” By delivering trauma-informed and responsive care, staff can provide holistic care while supporting the family unit, and avoid restrictions or disciplinary action.

THEME 3: Mechanism: dehumanization and racism

Dehumanization is the denial of recognizing and/or respecting the humanity of other people, whereas racism is a form of dehumanization that denies the humanity of other people based on their race, ethnicity, or color. Racist dehumanization can be practiced by individual people (interpersonal) or by institutions or systems (institutional) [27].

Subtheme: interpersonal dehumanization and racism

Parents experienced the NICU as a primarily white space in which they needed to change their behavior to assimilate accordingly. Black and Latinx parents both felt racialized by staff, although the ways in which they were racialized were unique. Black parents described being racialized as incompetent, angry, or difficult rather than competent, inquisitive, or an advocate. Parents described times when they asked thoughtful questions or presented their own research and opinions to staff regarding their child’s care and were met with surprise or praise. The assumption and impact on the parent of the staff’s response was that the parent was “not educated or smart”. In situations of parent advocacy accompanied by a display of their emotion, participants recalled instances where white parents were praised as strong advocates, whereas Black parents were labeled as problematic or difficult. In response, Black parents kept their true identities and feelings close and private, and changed their behavior to assimilate to avoid hyper-surveillance, disciplinary action, or other policing. This extra cognitive burden was additive to those intrinsic to having a hospitalized child: One Black parent likened the feeling of limiting who you are in fear of policing similar to the feeling of “a caged animal”. Another Black parent said, “I had to be this quiet, humble, speak like you got some sense type person when I should have had an open space to express how I felt …So that kind of like, I guess you say scared me straight with the way I was interacting with doctors and nurses.” The fear of retaliation was shared and power dynamics described above are evident here, as described by another Black parent, “When I was in the NICU I was trying hard not to be the angry Black woman because I was like, ‘Dang, if I come up there crazy, then I might not get back up there’”.

Latinx parents described strong gratitude for high quality care throughout the sessions and rarely named racism or the experience of being racialized. However, despite rarely attributing instances to discrimination, they described many instances of suboptimal quality of care. In cases of suboptimal care, they were rendered as invisible or erased, and described instances of staff taking care of their child without greeting the parent, introducing themself, or making eye contact. One Latinx parent said “On some occasions, with some nurses, they saw me differently because of my language, because perhaps because they didn’t understand me, it complicates things for them. [It’s] not so bad, but, well, one feels it.” They recounted several distressing medical errors including a medication administered in error, inadequate administration of pain medications due to a line malfunction, and the loss of parent supplied breastmilk. Language discordance on its own was not identified as a primary barrier to high quality care, as Latinx parents described that compassion can supersede language discordance, evidenced by strong bonds with language discordant primary nurses. At the same time, they recounted experiences where language concordance strengthened interpersonal bonding and facilitated easier communication with staff.

Subtheme: institutional dehumanization and racism

Healthcare systems are structured in a way that perpetuates dehumanization rather than humanism. Staff collectively acknowledged internal motivation for entering the healthcare profession and their daily motivation: to care for others. Staff surmised that systemic pressures on healthcare professionals to perform to meet demands, including time constraints and task workload, can detract staff from providing humanism. One staff member reflected, “The way the healthcare system is set up in this country does not promote human interaction in the healthiest way. Everybody is overworked and everybody is worried about getting to the next thing… And just everybody being so busy all the time…It’s so gigantic and so regulated that it removes a lot of the humanity from it.”

Parents also perceived staff as understaffed and overworked during their time in the NICU. Throughout the focus group sessions, parents found meaning in recognizing staff as real people who have real emotions working within the system. Furthermore, despite the perceived traditional power dynamics, staff did not always have the power to change a system that may be failing a family. A Latinx parent reflected on the 3:1 patient to nurse ratios for less medically complex infants, “Because as a mom, I wish I had just one nurse to take care of him all the time. The nurses, they tell me, ‘there aren’t many of us nurses, we have to divide ourselves in three, almost,’ and that sometimes they have to care for three babies at a time.” When resources are strained they are diverted to privileged groups, a Latinx parent said “Well, in this area they always take care of two or three babies. And, well … what I have observed, when he is there, it’s that … they – they pay more attention to the American babies, than for me – for my baby.” A staff member agreed, “But then in reality, what happens is actually the people who already have a lot get the most.”

Parents also noted the grief, stress, and trauma that healthcare professionals experience regularly as a part of their job and that removing themselves from the emotion, compartmentalizing, and avoiding reflection can be coping tactics. As experiences were shared, parents learned about the shared emotional impact of caring for their children which parents had not previously deeply considered. In a touching sharing of worry, parents expressed concern for staff working conditions and mental health, as perception of the power dynamics shifted towards the center, “You all do a lot. That’s traumatizing to you all. I never even thought about it until right now what that must be like for you all.”

THEME 4: Recommendation: transform space and staff to promote humanism and inclusion through diversification of staff, minimum criteria for parent-staff interactions, and reduced workload for staff

Improving humanism was a consistent recommendation identified by participants with the core objective of combating instances of lack of humanism broadly and more specifically avoiding racialized experiences. Mechanisms by which to improve humanism in NICU spaces was to change the demographic composition of the staff, institute minimum criteria for interactions with parents by staff, and to increase humanity towards staff to increase their capacity to show humanism by reducing their workload.

Racial and cultural concordance of staff and parents were identified as potentially protective against racialized experiences. Participants described psychological safety and reduced identity threat when conversing with racially and culturally concordant individuals, although a lack of workforce diversity was noted to be a significant barrier to those experiences. Specifically Black and Latinx parents requested more Black and Latinx staff, and staff who spoke Spanish.

In addition to substantively changing staff demographics, participants recommended setting minimum criteria for basic humanism from staff, including making eye contact, greeting, and introducing themselves when staff enter patient spaces, everyday, for every encounter. Beyond minimum criteria, one Black parent explained showing humanism also requires showing humility: “Acknowledge you messed up. Acknowledge you read that paper wrong. Acknowledge you miscalculated those numbers. Acknowledge it because when we find it, and we find an error and you don’t acknowledge it, it makes us feel like you’re just doing your job with no compassion and no care in the world.” Staff workload was identified as a systemic barrier to humanism; when staff seemed busy, sleep-deprived, or fatigued, with numerous competing tasks for their attention, the amount of time and compassion toward parents was reduced. In a setting as important as healthcare for children, any capacity taken from workers to provide high quality care was deemed unacceptable, one parent articulated, “Every child deserves that extra lift of care. Every child deserves that extra minute of research. Every child deserves that extra thought of, ‘maybe this can work.’”

THEME 5: Mechanism: societal inequities exacerbate the process of dehumanization

The NICU can be a traumatizing space, which is compounded onto other struggles families may face secondary to structural racism. Throughout the sessions, parents shared experiences of racism and discrimination in other medical settings within the hospital, including labor and delivery and other pediatric floors, as well as in other hospitals prior to and after their NICU hospitalization. Navigating racism in the NICU was not an insular event, but rather an addition to their multitude of everyday experiences with racism. Parents also met significant social challenges outside of the hospital, including but not limited to: immigration agency conflicts, difficulty paying rent and providing childcare for their other children, and housing insecurity. One Black parent said, “Because I know with my son, I had rent due, I had Christmas around the corner, I had other stressors that made it harder for me to jump up, get to the hospital and just worry about my son. That could have played a part into my anger. That could have played a part into my sadness. It could have played a part into depression.”

Parents were grateful to the social work team who helped them navigate several of these challenges while they were hospitalized and emphasized the absence and therefore need for more social work support and services after hospital discharge. For families, social services were life lines when their family’s basic needs were threatened. Importantly, despite social work support and connections to resources, there were insurmountable social barriers and parents did have residual needs that were not met. One Latinx parent described this situation as particularly dire at hospital discharge, “Well, yes, it is very hard. Because you have a baby that is sick, right? And it is a lot of stress, it is a lot of problems. You have the other things that you are thinking about, more problems. When I am in the hospital, I have everything, they take care of me… but what am I going to do when I go home? And nobody protects you.”

THEME 6: Recommendation: mitigate harm experienced within and outside of the NICU through peer support and SDH (social drivers of health) resource allocation for families

As a group, participants immensely appreciated the social work team, and found the team to be understaffed and overworked. Their recommendations included more staff and more social services to meet their social and mental health needs. In addition to social work support, families identified the need for mental health providers and a family liaison, who would serve several functions, including as a near peer parent with lived experience in the NICU who can orient families, provide them with knowledge of available local supports and resources including mental health and lactation support, and function as a third party advocate for families.

Focus groups as peer group experiences were described as “therapeutic” themselves, noting peer support, relationship, and community building between parents and staff. During sessions, participants shared both racialized and traumatic experiences and validated each other’s experiences. Participants recommend that parents and staff participate in these experiences given the personal growth that they themselves experienced. One Black parent shared feelings of validation, bidirectional shared empathy, and self-reflection stating, “It was good to know that there was a lot of other families that went through the same things that I went through and that I wasn’t crazy. It was just nice to hear. I felt it very therapeutic and kind of relieving. It felt good to listen to other moms talk about their journeys and what they experienced in the ICN. It took me a while to reflect on them [my emotions]. I had a day to myself the day after to kind of work on them just because it brought up a lot of old trauma I guess from the ICN that I hadn’t worked on yet but it helped. It helped a lot.” The audio diaries and focus group sessions themselves held a significant amount of hope for the future which appeared to be further fueled by productive tough conversations and relationship building between parents and providers during the sessions, despite the challenging topics of discussion. One family support staff member summarized the general feeling of the importance of dialog within the focus group and hope for the future, “There’s radical optimism in that we’re in a different time and we’re not doing it alone”.