Financial navigator program co-designed for NICU follow-up families

When a newborn lands in the neonatal intensive care unit, the medical emergency is only the beginning. Behind the incubator glass, families face a second, quieter crisis: lost income, mounting out-of-pocket costs, and a maze of benefit programs, tax credits, and disability supports that almost nobody knows how to unlock. A new formative study published in BMC Health Services Research by a team at The Hospital for Sick Children (SickKids) in Toronto has now put hard numbers on that hidden burden and, with caregivers themselves, co-designed the specifications for a hospital-based Financial Navigator Program aimed at families in the Neonatal Neurodevelopmental Follow-Up (NNFU) clinic.

The research, led by Elahe Karimi-Shahrbabak and Meta van den Heuvel, used a sequential mixed-methods design, a structure in which each stage feeds the next. First came in-depth interviews with nine purposively selected caregivers about their financial experiences during neonatal intensive care admission and the follow-up period. Those qualitative findings then shaped a cross-sectional survey of 110 caregivers, which measured financial strain, practical problems, and access to financial support. Finally, caregivers, healthcare providers, and researchers gathered in a co-design workshop to interpret the combined evidence and collaboratively draft the program specifications. This triangulation of interview, survey, and workshop data is what gives the study its technical weight: the numbers reveal the scale of the problem, while the stories and the workshop reveal what a solution must actually look like.

The survey results are stark. Respondents were predominantly female (94 of 109, or 86.2 percent) and from two-parent households (96 of 109, or 88.1 percent), yet 43 of 106 caregivers (40.6 percent) reported difficulty making ends meet, and 31 of 107 (29.0 percent) screened positive for household food insecurity. More than half (58 of 108, or 53.7 percent) had no assistance at all navigating financial programs, and 39 of 108 (36.1 percent) reported a financial problem within the past week. These are families already stretched by the demands of caring for a medically fragile infant, and the data suggest that financial distress is not an edge case but a routine feature of the neonatal follow-up population.

The interviews added texture to those figures. Caregivers described income loss during prolonged hospitalization, high out-of-pocket costs for travel, meals, and parking, and the sheer complexity of benefit and tax processes. Programs such as the Ontario Disability Support Program (ODSP), Assistance for Children with Severe Disabilities (ACSD), and the Northern Health Travel Grant exist on paper, but families reported limited hospital-based financial support to help them access them. The interviews also surfaced something the survey could not: a clear appetite for a hospital-based financial navigator, a dedicated person embedded in the clinical team who could walk families through the paperwork while their child is still in care and after discharge.

Financial hardship in neonatal care is not a new observation, but the SickKids study is among the first to systematically characterize it in a neurodevelopmental follow-up clinic and to translate that characterization into a co-designed service specification. The concept draws on the emerging model of medical-financial partnerships (MFPs), in which healthcare systems integrate financial support services directly into clinical care, and on the medical-financial navigator role that has been piloted in adult oncology, where navigators help patients with insurance, benefits, and debt. Adapting that model to neonatal follow-up required understanding a different set of stressors: parents of NICU graduates face years of therapy appointments, equipment costs, and caregiving demands that keep one parent out of the workforce long after discharge.

The co-design workshop, the study’s third and most distinctive stage, brought caregivers, clinicians, social workers, legal health professionals, and researchers to the same table. Participants identified six design themes and prioritized four key specifications: universal access, meaning the navigator should be offered to all families rather than only those who self-identify as struggling; flexible communication, so families can engage by phone, email, or in person at their convenience; timely post-discharge engagement, because financial problems often peak in the weeks after a baby comes home; and a defined set of key services covering benefits applications, tax credits, insurance, and travel supports. The emphasis on universal access is technically significant: it sidesteps the screening problem, in which families who most need help are least likely to disclose distress, and instead normalizes financial navigation as part of standard care.

That normalization matters because financial toxicity, the term borrowed from oncology to describe the harm caused by the cost of care, is increasingly recognized as a determinant of child health. Food insecurity in nearly a third of surveyed households is not merely a budgeting issue; it is a risk factor for poorer developmental outcomes in the very children the NNFU clinic exists to monitor. The study’s authors argue that integrating financial navigation into the follow-up clinic could improve equitable access to financial resources, and that the next step is to pilot and implement the co-designed program and formally evaluate its impact.

The study is formative by design, meaning it was built to shape a future intervention rather than to test one. The authors are explicit that the next phase is to pilot the Financial Navigator Program and evaluate whether it actually improves families’ access to benefits and reduces financial strain. That evaluation will need to account for the realities of a tertiary pediatric hospital: staffing, funding, and the challenge of reaching families who may disengage from follow-up care precisely because of the financial pressures the program is meant to relieve.

What makes the SickKids work resonate beyond Toronto is its methodological honesty. The team did not assume they knew what families needed; they asked, measured, and then co-designed with the people who would use the service. Caregivers were not subjects but partners, including a lived-experience advisor embedded in the author team. The result is a program specification grounded in evidence and shaped by the families it is meant to serve, a model that other hospitals with neonatal follow-up clinics, and indeed any pediatric service where the cost of care quietly erodes family stability, could adapt. The study’s findings, published open access, offer a blueprint for turning a hidden crisis into a structured, navigable pathway.

The broader implication is that financial navigation belongs in the clinical team, not in a pamphlet rack. Nearly a third of surveyed households faced food insecurity, and more than half had no help navigating the supports that exist for exactly their situation. If a hospital can embed a navigator in the follow-up clinic, the argument goes, it can convert a fragmented, opaque benefits landscape into a structured pathway, and in doing so address a determinant of child health that has long been invisible in the exam room. The SickKids team has now built the specifications; the pilot will tell whether the model delivers on its promise.

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

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

Article References: Karimi-Shahrbabak, E., Nadarajah, J., Buchanan, F., Perera, S., Danguecan, A., Casey, M., Masemann, R., Medeiros, P., Beck, R., Koziorz, D., Lazor, T., Meserve, A., Ly, L. G., Birken, C. S., & van den Heuvel, M. (2026). Co-designing a financial navigator program in the neonatal neurodevelopmental follow-up clinic: a formative mixed-methods study. BMC Health Services Research. https://doi.org/10.1186/s12913-026-15693-7

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15693-7

Keywords: Co-designing, financial, navigator, program, neonatal, neurodevelopmental, follow-up, clinic, formative, mixed-methods, scientific research