NICU Parent and Staff Advocacy to Address Parental Mental Health

Abstract

Parents of infants requiring neonatal intensive care unit (NICU) hospitalization often experience increased rates of distress, trauma, and perinatal mood disorders. Untreated parental mental health conditions have short- and long-term effects for infants and families. While some NICUs provide varying degrees of mental health supports for NICU families, these services are not universally or systematically integrated in US NICUs. Multiple factors contribute to this gap in care, including mental health stigma, funding constraints, and lack of staff training and capacity. In an effort to address this gap, we used a participatory action research approach, guided by a Patient and Stakeholder Engagement model, to partner with graduate NICU parents and patient-facing NICU staff to identify parental mental health needs and ideas to address them. Through efforts to mitigate power differentials and engage parents as research and program development partners, our work shaped NICU practices, programming, and subsequent research.