When neonatologist and epidemiologist Henry Lee looks at data about the quality of care babies receive in California’s neonatal intensive care units (NICUs), one thing sticks out: fewer Black and Hispanic babies survive and thrive than white babies in the same hospitals. With support from Stanford Impact Labs and the Haas Center for Public Service, Lee is spending time this year as a scholar in service with the California Perinatal Quality Care Collaborative and dozens of NICUs across the state. Together, they are identifying how race and wealth affect care for vulnerable infants and their families. So far, conversations are raising common challenges—and opportunities to close gaps—related to language accessibility, visitation, and paid family leave.
Welcoming a new baby to a family, Lee says, is such a special and exciting thing, “but if the baby is born very early or very sick, it can take such a toll.” He says he wasn’t initially focused on disparities in care, but as an epidemiologist, there comes a point when you look at neonatal outcomes—including mortality rates and the quality of care—and the thing that sticks out is racial disparity. “There’s no biological reason these disparities exist,” says Lee. “We recognize that even as we’ve advanced medical care, we need to address the social determinants of health and our own process of care.”
"There’s no biological reason these disparities exist. We recognize that even as we’ve advanced medical care, we need to address the social determinants of health and our own process of care."
The California Perinatal Quality Care Collaborative is a statewide network of 140 NICUs, housed at Stanford’s School of Medicine. Lee is their chief medical officer. With support from the Scholars in Service program, he and Caroline Toney-Noland, a program manager at the collaborative, have conducted virtual site visits with 39 NICUs across the state. While the collaborative has collected health equity data for many years, this is the first time they have been able to spend dedicated time meeting with NICUs across the state to focus together on what is driving disparities and how to improve care for newborns that spend time in NICUs.
Courtney Breault, associate director of quality for the collaborative, says the data they collect drives many quality improvement efforts but isn’t enough on its own. “What Caroline and Henry have done through the Scholars in Service program,” Breault says, “is sit down and connect with leaders in these teams and the NICUs.” It lets them hear directly from clinicians, respond directly with insights from conversations they have with other NICUs, and work together to do what is best for all patients and families.
Most NICU teams have been eager to understand where families receive lower quality care and why. Sometimes, however, staff think they don’t have a health equity problem in their NICU. Those conversations are changing, however, as the United States confronts systemic racism in policing, schools, employment, and health care. The collaborative’s annual meeting this year was an “improvement palooza” focused on “advancing anti-racism in the NICU through teamwork and family-centeredness.” The meeting drew 450 participants from across the state–three times the usual number. Toney-Noland says it included conversations with families who shared “harrowing tales of racism and prejudice” during their time in the NICU. She said these, and other powerful first-hand stories—like those shared on the podcast NATAL about having a baby while Black in the United States—are driving a bigger response. “It’s one thing to see it on paper,” adds Breault, “and it’s another to have parents share first-hand experiences so we see and understand it happens everywhere and responding is a ‘must do’ for all of us.”
Language barriers and communication
“The overwhelming response we got when we asked about challenges,” Toney-Noland says, “was about language barrier issues.” Many families don’t have English as their primary language or have limited English proficiency. Lee says a little more than half of the birth population in California is Hispanic and roughly half of those speak Spanish as their primary language. He says quite a few families in the Central Valley speak other indigenous dialects or languages for which there are limited interpretive services. Interpreters are not always available for families in the NICU; without them, families with limited English proficiency aren’t getting the same information.
“Effective communication,” Lee says, “is important as a primary goal, but also affects clinical care while in the NICU and what happens afterwards if families don’t have all the information about what their baby went through and what to expect going home.” Lee and care teams say that when there are communication barriers, it is easy for clinicians to focus on immediate clinical care needs—like checking a baby’s intravenous line or monitors—instead of taking that extra time to make sure families are receiving good and full communication.
During the California Perinatal Quality Care Collaborative’s annual meeting, Lee and Toney-Noland helped organize a session on language barriers with three clinicians from across the state to describe the experiences of Spanish-speaking families in the NICU. Lee and Toney-Noland have also created a language workgroup with NICU staff from across the state and Marina Persoglia Bell, an interpreter from Lucile Packard Children’s Hospital, to do better. This could include prioritizing resources so NICUs have full-time, dedicated interpreters. It could also include changing workflows or training to ensure all families are receiving full communications.
There are also differences in how often families can visit newborns in the NICU and what happens when they do. Kangaroo care, or skin-to-skin contact with newborns, is a beneficial intervention for premature infants. Colleagues at Lucile Packard Children’s Hospital found even when families were visiting the same number of times, families with limited English proficiency were holding their babies half as much. “That was a real wake up call,” Lee says. He speculates sometimes language barriers may lead to clinicians not asking families as frequently, if they would like to hold their babies. Other times, he says, it may be the families who feel more empowered that will ask their care teams “is it time for me to hold my baby?” The combination of language barriers and overall comfort in the NICU affects which families are benefiting from interventions everyone knows are beneficial.
"Even when families were visiting the same number of times, families with limited English proficiency were holding their babies half as much."
Restrictions on visitation during the COVID-19 pandemic raised new and different issues. For example, limited visitation hours from seven in the morning until seven in the evening excludes families who work during the day. Some additional COVID restrictions limited visitation to only one parent (though the California Department of Public Health reaffirmed its recommendation that two designated support persons be allowed to visit NICU patients).
In a recently published paper, Lee and co-authors from the Watsonville Community Hospital, Sharp Mary Birch Hospital for Women and Newborns in San Diego, and Mattel Children’s Hospital at the University of California Los Angeles, say the rapid introduction and adjustment of visitation policies in the wake of COVID-19 risked exacerbating disparities. The authors say COVID-19 policy and public health responses disproportionately affect Black, Indigenous, people of color communities, patients with limited English proficiency, and families who are financially strained. Seemingly strict visitation policies that can make exceptions case-by-case could “introduce inherent bias in patient care, and may largely benefit parents with greater privilege.” They recommend equitable policies to allow—and advocate for—all families to spend time with their infants during NICU hospitalization “not simply those who have the privilege to do so.”
Whether or not family members can take leave from work also affects how often and how long they can visit infants in the NICU. “There has always been a disparity in mid-day visitation by families,” Lee says. “Those with more resources and privilege can visit more.” It tends to be the case, he says, that people who have jobs with leave policies and families with more financial resources can visit more. He notes the differences between families where adults have private sector jobs as compared to those who work in the service sector and are afraid they can easily be replaced or lose their job if they take leave.
California’s paid family leave is better than most other states. Those eligible can receive 60 to 70 percent of wages for up to 8 weeks in any 12-month period. That said, many babies are in the NICU for a matter of months, not weeks. Lee says those processes are already hard to navigate, especially during a family health crisis. They are learning “it’s a lot harder to navigate for someone that isn’t in a good job situation and has limited English-proficiency.”
He says clinicians are not always aware of how these policies affect what happens in the NICU. He has talked with colleagues at Legal Aid at Work which advocates for family leave, to think about the research that would help understand what is going on, who is and isn’t benefiting from leave policies, and how it can inform advocacy efforts. There are opportunities to join forces with other Stanford colleagues like Maya Rossin-Slater whose research, recently shared by the National Bureau of Economic Research, shows family leave does not hurt employers.
Strong desire for connection and learning across NICUs
As part of their conversations, Lee and Toney-Noland have connected people informally across NICUs. They have been struck, though, by the strong desire from NICU teams to learn from each other about what is working and how to address gaps in care. Lee and Toney-Noland are exploring ways to build these networks and relationships.
"It’s not a technological problem; it’s a human one. And so it needs a human solution. Just getting people in the same room to listen to each other’s stories can change the response."
Toney-Noland says the more clinicians hear directly from their colleagues in other NICUs and from families, the more hope there is for empathy, learning, and progress. “It’s not a technological problem; it’s a human one. And so it needs a human solution. Just getting people in the same room to listen to each other’s stories can change the response.”
What we all want, Lee says, is not just to help babies survive and get out of the hospital, but “we want to create the optimal environment for them to succeed and reach their full potential. We see how much the social environment affects their care in the NICU and what happens afterwards. Learning how we can do better across all our units is something I’d like to continue to work on, even after this year.”