Using journey mapping to capture parents' experiences across phases of neonatal care: a qualitative study

Neonatal admissions are often lengthy and traumatic for parents, affecting parental and child outcomes. Parents' care experiences are shaped by emotional, informational, and practical factors. Understanding these factors is essential to improve support and outcome.

We used a mixed-methods approach to develop a parental journey map, including: (1) conceptualizing a parental journey map (exploratory research), (2) developing the map (six interviews), (3) iteration (with eight parents), and (4) exploring transfer experiences (eight additional parents).

The journey map illustrated parents' transition from feeling powerless to confident caregivers at home. Early phases were dominated by emotional overload and limited cognitive capacity, highlighting the need for dosed, timely and consistent communication, practical information and acknowledgement of their parenting role. As the journey progressed, parents' needs shifted toward continuity of care, trust-building and individualized participation in caregiving, with inconsistencies emerging as key stressors. Transfers between units were a particularly vulnerable phase. Preparations, clear expectations and acknowledgement of prior experiences by all healthcare providers were essential. Parents' experiences varied widely, highlighting the importance of individualized care.

This study demonstrates the value of journey mapping in capturing the diverse and evolving needs of parents during the different phases of their neonatal care journey. By highlighting when and how communication, psychosocial support, and parental role acknowledgement are most impactful, these findings provide a structured foundation for designing phase-specific, parent-centered interventions. Our results underline the need for future research across diverse parental backgrounds and time points to inform equitable improvements in neonatal care.