Courageous Parents Network

Program Description

Courageous Parents Network is a Boston-based national non-profit whose mission it is to empower, guide and support families of seriously ill children and the medical providers that care for them. CPN’s Web and Mobile platform delivers unique resources to families and providers, including videos, podcasts, guides, blog posts and digital learning tools focused on the psycho-social and emotional issues that attend serious illness in children. Since 2017, funding from the Ilene Beal Foundation has enabled the Courageous Parents Network to significantly expand its direct outreach and engagement with pediatric medical providers nationwide who are the gateway to these families.

In addition, with support from foundation, CPN in 2019 inaugurated the annual Ilene Beal Courageous Provider award, recognizing outstanding caregivers in the field of pediatric palliative care.

SNI Journey Map

In 2022 the foundation granted $65,000 to CPN for developing and deploying the SNI (severe neurologic impairment) Journey Map, designed to help clinicians and parents visualize a shared understanding of the child’s disease trajectory at different points in their lifespan.

• improve parent agency with medical decisions
• improve quality of life and future planning
• improve non-specialist literacy with the range of issues these children and families navigate

As a resource for parents and providers, this tool maps the likely trajectory of a patient with SNI across their lifespan, visualizes and explains the medical stages of SNI, focuses on parental psychosocial support and needs, and infuses the palliative care voice and concepts throughout. 

The Journey Map tool is the result of an innovative collaboration between Cincinnati Children’s Hospital’s palliative care team, the LiveWell DesignThinking Collaborative, Dr. Julie Hauer (a leading doctor specializing in children with SNI), and Courageous Parents Network.