Moms in the NICU: developing a pilot to engage and empower women who have delivered a prematurely born infant

BACKGROUND: Mothers spend long hours at their preterm infant’s bedside in the Neonatal Intensive Care Unit (NICU), giving clinicians the opportunity to engage mothers in caring for their own health. OBJECTIVE: To develop a NICU based intervention to reduce the risk of a future premature birth by engaging and empowering mothers to improve their own health and identify barriers to implementing their improvement. DESIGN: Development based on a framework of narrative discourse refined by the Quality Improvement Plan Do Study Act Approach. SETTING: Level II Stepdown Neonatal Intensive Care Unit. PARTICIPANTS: 14 mothers of preterm infants, ages 24–39 years. METHODS: A team of Maternal Fetal Medicine Physicians, obstetricians, neonatologists, neonatal nurses, and parents developed guidelines to elicit the mother’s birth story, review the story with a clinical expert to fill in knowledge gaps, identify strategies to improve health to reduce the risk of future preterm birth, and facilitate mother developing an action plan with specific six week goals. A phone interview was designed to assess success and identify barriers to implementing their health plan. The protocol was modified as needed after each intervention to improve the interventions. RESULTS: “Moms in the NICU” toolkit is effective to guide any clinical facilitator to engage, identify health improvement strategies, and co-develop an individualized health plan and its take home summary reached stability after the 5th mother. Mothers reported experiencing reassurance, understanding, and in some cases, relief. Participants were enthusiastic to inform future quality improvement activities by sharing the six week barriers faced implementing their health plan. CONCLUSION: Engaging in the NICU provides an opportunity to improve mothers’ understanding of potential factors that may be linked to preterm birth, and promote personally selected actions to improve their health and reduce the risk of a future preterm birth. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12884-023-05738-8.