Family partnership and lived experience: A core component for right-sizing child health systems

In this episode of SPARK Conversations, host, Dr. Katharine Smart, and guest Fabiana Bacchini explore the impact of Family Partnership on children’s healthcare across the country. Fabiana shares her perspective on family engagement in right-sizing the system for children and their families in Canada through involvement in education, research, advocacy.

Fabiana Bacchini is the Executive Director of the Canadian Premature Babies Foundation (CPBF), a journalist, and an author.

Her journey as an advocate began in the NICU with her surviving twin, born extremely preterm. During this time, she participated in the Family Integrated Care (FiCare) study, a model that empowers parents to be active partners in their baby’s care. Inspired by its impact, Fabiana became a dedicated volunteer at Mount Sinai Hospital in Toronto and an ambassador for FiCare, sharing her story across Canada and internationally to promote more inclusive, family-centered neonatal care.

Following her son’s diagnosis with cerebral palsy, Fabiana’s advocacy deepened. She has worked to ensure that families are not only heard but are meaningfully involved in research and healthcare decision-making. Through her leadership, she has fostered collaborations with hospitals, researchers, and global organizations, advancing parent-led initiatives and driving systemic change in maternal and newborn health.