Easing the financial burden for families in neonatal care
Dr. Meta van den Heuvel, Staff Paediatrician and Project Investigator at the SickKids Research Institute, is leading a study exploring how financial support can promote healthier beginnings for children and families. In collaboration with a multidisciplinary research team and supported by the Edwin S.H. Leong Centre for Healthy Children, the project is piloting a Financial Navigator Program designed to help families of infants in neonatal care access financial resources, file taxes, and apply for benefits. Co-developed with caregivers through interviews and workshops, this initiative aims to reduce financial stress, strengthen family wellbeing, and support optimal child development. She provides an update on her study.
Child poverty and financial hardship are pervasive and linked to adverse outcomes for children and families. Families with infants who need care in a Neonatal Intensive Care Unit often face serious financial challenges. These can include costs for travel, meals, accommodation, time off work, and ongoing medical expenses even after the baby leaves the hospital. This financial stress can affect parents’ mental health and their ability to care for their child, which in turn can impact the child’s development. Although financial supports like the Canada Child Benefit and Disability Tax Credit exist, many families don’t receive them due to barriers such as lack of awareness, language difficulties, complex application processes or not filing taxes. To help address this issue, our group has designed a study to test whether a “Financial Navigator” can reduce stress for parents. The Financial Navigator is a trained staff member who helps families access financial supports, file taxes, and apply for benefits.
First, we completed a qualitative study exploring financial stress among caregivers in the neonatal neurodevelopmental follow-up program (NNFU) at SickKids. Interviews with nine caregivers revealed a consistent and compelling theme: the experience of chronic financial stress. One caregiver noted "You know, everyone's scared to take care of your child. You can't go back to work because you know people don't want to be left alone with your child because they're scared something's gonna happen. All these things create stress and then the financial burden on top of all this causes more than anxiety, it’s an everyday constant beyond stress". We then surveyed caregivers attending the NNFU. Findings from surveys and interviews revealed significant challenges related to income instability (39%) and food insecurity (28%).
In October 2024, a Financial Navigator Co-Design workshop discussed the possible services of a Financial Navigator. This workshop was attended by a social worker, a resource navigator, two research staff and three caregivers. Caregivers expressed a need for flexible, approachable and knowledgeable financial support services; "Someone to filter through the noise and tell you at a high level what it is. Do you qualify or not qualify? What may potentially be an option?". These insights informed the co-design of the Financial Navigator intervention, which is currently being tested in a pilot feasibility trial. Since August 2025, 22 caregivers have had a first appointment with the Financial Navigator; 11 (50%) indicated having difficulty making ends meet. Assistance was offered for tax preparation (n= 4, 18%), applying for benefits (n= 14, 64%), debt management (n =1, 5%), financial counseling (n =4, 18%) and 6 (27%) were given information about local foodbanks. Our Financial Navigator is currently seeing families for a second follow-up appointment.
This work has been led by Dr. Meta van den Heuvel and her research team (Elahe Shahrbabak; Research Coordinator and Jasmine Nadarajah; Financial Navigator) and by the Medical-Financial-Working Group at SickKids (Catherine Birken, Linh Ly, Dorothy Koziorz, Francine Buchanan, Megan Casey, Ranit Beck, Rosemary Masemann, Tanya Lazor, Allison Meserve, Dennis Maplazi, Serena Perera, Ajantha Nadarajah).