Top Things to Know: Update on Education for Families & Patients with Pediatric Heart Disease: A Focus on Technological Advancements, Procedures, and Transitions of Care
Published: March 23, 2026
Prepared by Lori Erickson PhD, MSHCM, MSN, FAHA, CPNP-PC
- Education for pediatric heart disease (pedsHD) must be continuous, inclusive, and family-centered—beginning at diagnosis and extending through adolescence and transition to adult care.
- More research is needed on the effectiveness of digital tools, education for neurodiverse populations and those with language barriers, and strategies to improve recall and comprehension during emotionally charged encounters.
- Anticipatory guidance and proactive education reduce complications, readmissions, and caregiver stress—ultimately improving quality of life and clinical outcomes for children with heart disease.
- Technologies such as virtual reality, 3D models, mobile apps, and online platforms complement in-person education, offering flexible, multimodal learning tailored to caregiver and patient preferences.
- Educational materials need to be developmentally appropriate, accessible to those with disabilities, and available in multiple languages to address gaps in health literacy and digital access.
- Emotional and psychological preparation is essential. Trauma-informed care and culturally and linguistically tailored education can reduce stress and improve engagement, especially during high-stakes procedures.
- Cardiologists, advanced practice providers, nurses, child life specialists, mental health professionals, dietitians, and other health care team members play critical roles in delivering comprehensive, coordinated education across the care continuum.
- From prenatal counseling to outpatient follow-up, education must be tailored to each phase—diagnosis, procedures, hospitalization, discharge, and home care—to ensure continuity and preparedness.
- Anxiety and uncertainty can impair learning and decision-making. Strategies like teach-back, visual aids, and support tools help families process complex information effectively.
- Structured transition programs improve knowledge, self-management, and long-term outcomes for adolescents with pedsHD, especially those with complex conditions like Fontan physiology.
Citation
Erickson LA, Gross-Toalson J, Brickler M, Cabrera AG, Goossens E, Lafranchi T, McCoy A, Paredes A, Trela A, Wolfe KR, Peterson JK; on behalf of the American Heart Association Pediatric Cardiovascular Nursing Committee of the Council on Cardiovascular and Stroke Nursing; Council on Clinical Cardiology; and Council on Lifestyle and Cardiometabolic Health. Update on education for families and patients with pediatric heart disease: a focus on technological advancements, procedures, and transitions of care: a scientific statement from the American Heart Association. J Am Heart Assoc. 2026;15:e046623.