A recently published qualitative study, Center and Care, examines the obstacles that Black families with preterm infants face after leaving the Newborn Intensive Care Unit (NICU). Funded partly by the California Preterm Birth Initiative (PTBi), the study found significant gaps in support systems and opportunities for meaningful change in healthcare and policy.
Led by Principal Investigator, Dr. Kayla Karvonen, Assistant Professor of Pediatrics at UCSF, the study interviewed 20 Black caregivers with diverse educational, professional, and socioeconomic backgrounds. The study focused on having families prioritize the types of help and changes that would have improved their experiences raising a preemie the most.
Understanding the Journey
The short-term and long-term needs of families of premature infants (born before 37 weeks) are entirely different from those of babies born at term. Yet policies and systems don’t consider those needs, even though the average preterm birth rate is 10% nationally, and 14.7% for Black babies.
“Families in our study wanted more awareness and action, recognizing that having a baby in the NICU means you could use more financial support,” says Karvonen. “We also wanted to understand how families are screened for social needs during their hospital stay and primary care physician appointments to inform the practices in NICUs or primary care clinics in the Bay Area. How would families like to be screened, referred, and connected with community-based organizations that could help support them?”
Key Findings
These are the five areas that Black families with preterm infants identified as circumstances with the most significant challenges:
- Financial Security: Difficulty accessing basic needs, including housing, transportation to appointments, childcare, and food, was consistently identified by families. Respectful screening and referrals to connect families with organizations that can help were highlighted.
- Provider Trust: A personal connection with a provider that could be confided in with sensitive information to address financial and social needs is necessary in medical settings. Creating a safe space for honest conversations was noted, especially around basic needs like food, housing, and financial insecurity.
- NICU Transition Process: Graduating from the NICU creates a sudden loss of access to resources, going from an all-in-one support system to starting all over again with a whole new care team. The study participants recommended an ability to cluster in-person clinic visits together to limit the number of trips, continued lactation and mental health services, check-ins with home nursing, postpartum doula access, and peer support with other NICU parents.
- Community Support: Black-centered community-based organizations (CBOs) that provide holistic postpartum support were noted as a vital source for basic needs, emotional support, childcare, and connectedness. Various CBOs were specifically named as champions for families in the study.
- Policy Improvements: State and federal legislation, policies, and programs were identified as critical opportunities to address the unique needs of families with preterm babies. Some examples were improved parental leave policies for caregivers with preterm infants and infants with extended NICU stays, and financial help like a universal basic income and specific financial support for NICU grads.
“The most effective ways to support families begin by listening and hearing from them on what's most important,” says Karvonen. “We're so excited to get our work out there to highlight the family voices to changemakers, like policymakers, medical systems, and community-based organizations.”
