A roadmap to support the emotional and mental health needs of patients and families

Carole Lannon Carole.Lannon@cchmc.org
Stacey Lihn Stacey@sistersbyheart.org

Abstract

“We cannot afford to put the mental health of our children and families in the back seat anymore; we're in need of significant change. Not today, but yesterday.” Stacey Lihn, parent of a 6-year-old child with complex congenital heart disease; president, Sisters by Heart; parent lead, the National Pediatric Cardiology Quality Improvement Collaborative, and member; Board of Directors, American Board of Pediatrics Foundation.
In this workshop, a parent of a child with chronic disease and a pediatrician will share a roadmap, developed by patients, families, and clinicians working together across multiple chronic disease networks, to support the emotional health of children and families.
The prevalence of behavioral and mental health conditions in children, adolescents and young adults is significant. However, as recently as 2013, 65% of pediatricians surveyed by the American Academy of Pediatrics indicated that they lacked training in recognizing and treating mental health problems. The American Board of Pediatrics (ABP) identified addressing mental health needs of children and families as a strategic priority in 2014.
For the past decade, the ABP has supported Learning Networks as a way to improve outcomes for populations of children at scale. Learning Networks are collaborations among patients, families, clinicians and researchers who use clinical data for improvement and research. Patients, families, clinicians, and scientists are partnering in pediatric networks focused on children with autism, chronic kidney disease who require renal transplant, complex congenital heart disease, cystic fibrosis, diabetes, inflammatory bowel disease, juvenile arthritis, and sickle cell disease. Importantly, Learning Networks for children with chronic disease have demonstrated significantly improved health outcomes.
At a meeting convened by the ABP, patients and parents from many of these Learning Networks emphasized the lack of awareness by clinicians of the emotional and mental health support needed by patients and families of children with chronic disease. Several networks shared improvement efforts and strategies to address this issue.
Following the meeting, several parents wrote to the CEO of the ABP: “we believe there is a valuable opportunity to work across chronic disease networks to address this issue and generate a roadmap for new strategies and interventions.”
The ABP Foundation has funded a project that is developing this roadmap by working with parents who are active partners in nine Learning Networks. At this MedicineX workshop, a parent of a child with complex congenital heart disease and a pediatrician will share the “change package” of strategies and tools that can be used to raise awareness of the need to provide emotional and mental health support for children with chronic illness and their families and, most importantly, to implement changes in practice that will change the outcome for children and their families.
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