The Family Care Coordinator

Abstract

The care of a child/adolescent with cancer or a blood disorder is complex and often long term, involving many interdisciplinary team members across services and geographical boundaries. This experience can be overwhelming for patients and their families, highlighting the need for a family care coordinator (FCC) to help them navigate their care path. The purpose of this article is to illustrate the concept of family care coordination as experienced by the IWK Health Center in Nova Scotia, Canada, with the intent of sharing a valuable model of care with other pediatric hematology/oncology services. Key components of the role are ongoing assessment, education, partnerships, communication, support, and advocacy. Essential resources and pathways are required to implement the role and optimize patient/family outcomes, facilitating consistent and accessible care, enhancing quality and safety, building trust, and gleaning efficiencies. Inherent FCC challenges are identified as time constraints, replacement issues, maintaining professional boundaries, and emotional burnout. A FCC can enable seamless, individualized care for children/adolescents and their families with pediatric oncological and hematological disorders, optimizing the outcomes for all involved.