New Grant Aims to Build Family Engagement in Neonatal Intensive Care Units

PALO ALTO – Strengthening and diversifying family representation in care is the goal of a new foundation grant that will support creation of a statewide Family Advisory Council (FAC) and planning for the development of councils within neonatal intensive care units (NICUs) at individual hospitals across California.

The grantee, the California Perinatal Quality Care Collaborative (CPQCC), is a statewide network of California’s NICUs and High Risk Infant Follow-up (HRIF) clinics housed at the Stanford University School of Medicine. Collaborative members work to improve the quality and equity of health care delivery for California’s most vulnerable infants and their families, from birth and NICU stay to early childhood.

Infants who are treated in the NICU are premature or underweight at birth and/or have serious medical or surgical conditions. Their families may find the NICU stay a profoundly stressful and traumatic environment that may interfere with bonding with and caring for their new child, yet family involvement in the NICU is critical to the infant’s health and well-being. FACs work with NICUs and follow-up clinics to facilitate family participation in research, quality improvement initiatives, parent outreach and support, communications, and other projects, but two-thirds of NICUs in California do not have a FAC.

CPQCC will create a statewide FAC that represents California’s diversity. Family members will advise CPQCC, develop new family-centered projects, and help improve health care processes in NICUs across California so that families face fewer disparities and challenges in their ability to care for their infant. CPQCC also will develop plans for supporting California NICUs in establishing their own local FACs.

Through establishing channels for family feedback and engagement with CPQCC leadership, the project aims to shape systems of care within NICUs and their associated HRIF clinics to improve infant outcomes, particularly for marginalized populations over the long term. Read more about the grant.

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The Lucile Packard Foundation for Children’s Health unlocks philanthropy to transform health for all children and families – in our community and our world. Support for this work was provided by the Foundation’s Program for Children with Special Health Care Needs. We invest in creating a more efficient and equitable system that ensures high-quality, coordinated, family-centered care to improve health outcomes for children and enhance quality of life for families. Learn more at lpfch.org/CSHCN.