Co-designing a financial navigator program in the neonatal neurodevelopmental follow-up clinic: a formative mixed-methods study

Families of infants requiring neonatal intensive care often experience substantial financial hardship due to income loss and out-of-pocket costs during hospitalization and after discharge. Hospitals currently lack dedicated, structured support to help families navigate these financial challenges. This formative study aimed to characterize caregivers’ financial experiences and co-design specifications for a Financial Navigator Program for families followed in the Neonatal Neurodevelopmental Follow-Up (NNFU) clinic at a tertiary pediatric academic hospital. We conducted a sequential mixed-methods study at a tertiary pediatric hospital’s NNFU clinic. First, we completed in-depth interviews with purposively selected caregivers about financial experiences during neonatal intensive care admission and the follow-up period; these findings informed the subsequent survey and co-design process. Second, caregivers were invited to complete a cross-sectional survey assessing financial strain (such as out-of-pocket costs and income loss), practical problems (such as problems with transportation, finances/insurance and childcare) and access to financial support. Third, caregivers, healthcare providers, and researchers participated in a co-design workshop to interpret the findings and to collaboratively design and develop program specifications of the Financial Navigator Program. Interview participants included 9 caregivers; themes highlighted income loss, high out-of-pocket costs, complex benefit and tax processes, limited hospital-based financial support, and interest in a hospital-based financial navigator. Survey respondents ( n = 110) were predominantly female (94/109, 86.2%) and from two-parent households (96/109, 88.1%); 43/106 (40.6%) reported difficulty making ends meet, and 31/107 (29.0%) screened positive for household food insecurity. More than half (58/108, 53.7%) had no assistance navigating financial programs, and 39/108 (36.1%) reported a financial problem over the past week. Co-design workshop participants identified six design themes and prioritized universal access, flexible communication, timely post-discharge engagement, and key services for the Financial Navigator Program. Financial hardship and unmet navigation needs were common in this NNFU sample. Many caregivers lacked guidance in accessing financial support. The integration of interview, survey, and workshop findings generated specifications for an NNFU-adapted Financial Navigator Program. The next step is to pilot and implement the co-designed program and formally evaluate its impact on improving equitable access to financial resources. Not applicable.