Pediatric Chronic Conditions: Addressing the Emotional Toll
Guest post by Stacey Lihn and Diane Pickles
Parenting a child with a chronic condition takes a psychological toll. And, for too many families, support to build resilience and emotional health support has been very difficult to obtain.
In September 2016, we attended a meeting at the American Board of Pediatrics (ABP) where the majority of attendees were parents of children with chronic conditions, including type-1 diabetes, juvenile arthritis, cystic fibrosis, autism, and congenital heart disease. Although the attendees were coping with extremely different health conditions, many of our challenges were universal. The overriding theme was of being overwhelmed, with our child’s condition affecting every aspect of our lives and everyone to whom we are connected.
Since 2017, we’ve been working with pediatric and parent colleagues on the Roadmap Project. Funded by the ABP Foundation, Roadmap aims to increase resilience and emotional health within families of children with chronic conditions by providing tools and resources for pediatricians — both general and subspecialty pediatricians.
This month marks two important Roadmap milestones. First, we co-authored an article in Pediatrics that summarizes what we’ve learned to date and provides links to tools that any pediatrician can use to improve their communication with families about emotional well-being. Second, a new continuing certification activity was launched, based on the Roadmap initiative.
In A Roadmap to Emotional Health for Children and Families With Chronic Pediatric Conditions, we describe our experiences with multiple stressors and a lack of consistency in daily life caused by our children’s life-threatening congenital heart defects. We have experienced a broad range of social and emotional health impacts, for us and our children. Parents of children with chronic conditions experience significant educational impacts when their children miss school and/or have neurological impacts from their condition. We have little time to exercise, eat right, or give enough attention to our other children. We feel isolated and as if our family and friends don’t truly understand. Many family members struggle with anxiety and depression.
“There have been numerous successful efforts to improve the physical care of pediatric patients living with chronic conditions,” says Thomas Boat, MD, article co-author and past ABP Board Chair. “However, there has not been commensurate focus on enhancing emotional health and building resilience,” Boat says.
“But we’re beginning to understand that if you don’t support emotional health of children and families, everything else is at risk for falling apart.”
To assist subspecialist and primary care pediatricians in providing emotional support, a new continuing certification activity based on the Roadmap Project also launched this month. Successful completion of the Lifelong Learning and Self-Assessment (Part 2) activity confers 10 continuing certification points and six continuing medical education credits. It highlights a key point — pediatricians can open doors for families like us simply by beginning a conversation.
“I like very much the Roadmap Project questions … the overall information communicated is among the most immediately pertinent to clinicians that I have seen.”
— A pediatrician beta-tester for the MOC activity
ABP board-certified pediatricians can find the activity — Emotional Health and Resilience for Patients and Families with Chronic Pediatric Conditions — by clicking on "My Part 2 Activities" in the Maintenance of Certification section of their ABP Portfolio homepage (login required).
We urge you to use these new resources. We don’t expect our primary care and subspecialist pediatricians to be mental health experts, but we do need support as we navigate this journey. One of the greatest ways to be helpful is to initiate intentional conversations with patients and families — sometimes that is all we need, and always that is an excellent starting point.
About the Authors
Stacey Lihn co-founded Sisters by Heart, a nonprofit organization supporting mothers of children with congenital heart defects, in 2010 after giving birth to her daughter with hypoplastic left heart syndrome (HLHS). She is a member of the ABP Family Leadership Committee, serves on the Executive Leadership Team of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), and previously served as a public member of the ABP Foundation Board of Directors. She is a paralegal with Taylor and Lihn.
Diane Pickles, mother to an adult son with HLHS and aortic atresia, joined the Sisters by Heart Board of Directors in 2014 and has been actively involved in NPC-QIC since 2012, currently serving as parent lead for the design phase of the Fontan Outcomes Network. She serves as a public member of the ABP Board of Directors and chairs the ABP Family Leadership Committee. She is a Program Director for the American Heart Association’s One Brave Idea research initiative.