A child’s experience with diabetes, cystic fibrosis, or other chronic condition often affects the entire family. Each person can develop stress, depression, or anxiety, and have difficulty coping with the disease’s challenges.
And yet, to many parents, pediatricians haven’t adequately addressed these widespread mental health needs. Parent advocates from across the United States asked the American Board of Pediatrics (ABP) to prioritize the emotional and behavioral health of chronically ill children and their families.
The ABP agreed. It launched the Roadmap Project to develop behavioral health assessment resources and techniques for all American pediatricians who care for kids with chronic illness.
Collaborate to Innovate
In 2019, the ABP created a collaborative of nine top children’s hospitals to work on the Roadmap Project, including Hassenfeld Children’s Hospital with leadership from Sala Institute for Child and Family Centered Care, which is renowned for helping chronically ill children and their families cope with their emotions and build resilience.
“The Roadmap Project is opening up a national conversation about how we can systematically address these gaps in care delivery,” explains Becky Lois, PhD, co-director of KiDS of NYU Integrated Behavioral Health program, part of Sala Institute. “There were already a lot of resources about checking in on the emotional health and well-being of specific patient populations, such as those with cystic fibrosis. The Roadmap initiative expands that work and says, ‘All of us in pediatrics need to take this on and address emotional health for every patient at every visit.’”
To help create the Roadmap, each of the nine hospital teams—made up of practitioners and family partners—tested the Roadmap’s proposed behavioral health approaches within a specific area of their institution. The Robert I. Grossman, MD, and Elisabeth J. Cohen, MD, Pediatric Diabetes Center, led by Mary Pat Gallagher, MD, was selected as Hassenfeld’s pilot site.