(P082) THE IMPACT OF A FONTAN FAMILY CAMP ON CHILDREN AND THEIR FAMILIES

Background: Congenital heart disease (CHD) affects 1 in 100 live births, with the functionally univentricular heart being a rare manifestation (5 in 10,000 births). Fontan surgery, the culmination of a three-stage palliative process, presents unique challenges, and despite improved outcomes, long-term uncertainties persist. The children with a Fontan circulation face not only medical complexities but also psychosocial issues. The Virtual Heart Connection, initiated during the pandemic, addressed these challenges using a virtual platform. Recognizing the need for in-person connections, the Western Canada Fontan Family Camp was introduced. Our study evaluates its impact on children with a Fontan procedure and their families.

METHODS AND RESULTS: We engaged families via a physician-led in-person weekend camp. Rooted in inclusivity, diverse activities addressing medical, psychological, and transitional care were included. The holistic agenda, including specialist-led educational sessions and breakout groups, outdoor activities, and mental health support, exemplified the commitment to multifaceted interventions. An anonymous evaluation assessed participant satisfaction and perceived benefits. Engaging 18 children with Fontan procedure, 17 siblings, and 29 caregivers, the camp received positive feedback from 33 evaluations. Satisfaction levels were high, with 89% rating the event as "well-organized", 96% reported increased connection to other families and 100% willingness to attend subsequent camps. Psychologist-led mental health sessions and transition-nurse specialist's workshops received positive feedback, with comments including “It was fantastic to learn new things about the transition, what to look out for in the future and learning the different ways to get ahead” and “I thought it was really cool how they brought that to the camp. It helps breakdown the negative stigma around mental health and started some good conversations”.

Conclusion: The Western Canada Fontan Family Camp provided a framework for family support by addressing medical, psychological, and transitional care. The study pioneers a qualitative framework, integrating medical expertise, psychological support, and creative workshops. The Holistic Camp Agenda, featuring Q&A sessions and psychological support, ensured a comprehensive approach. A unanimous willingness to attend subsequent camps highlighted the perceived impact and value. This framework lays a foundation for family-centered empowerment programs in congenital heart disease.