513 - Participatory Design for Transition Readiness: Co-Creating Digital Solutions with Youth and Caregivers

Publication Number: 1493.513

Rebecca Delaney, University of Utah, Salt Lake City, UT, United States; John Sheehan, University of Utah School of Medicine, Bountiful, UT, United States; Ritika Nayan, University of Utah School of Medicine, Lehi, UT, United States; Nelangi Pinto, Seattle Children's, Seattle, WA, United States; Roger Altizer, University of Utah School of Medicine, Salt Lake City, UT, United States; Hanna Hedges, University of Utah Clinical Translational Science Institute, Salt Lake City, UT, United States; Heather L. Williamson, University of Utah School of Medicine, Midvale, UT, United States; Ian Lindsay, University of Utah School of Medicine, Salt Lake City, UT, United States; Teresa Hagan Thomas, University of Pittsburgh School of Nursing, Pittsburgh, PA, United States; Andrew K. Moran, University of Utah School of Medicine, Salt Lake City, UT, United States; Angela Fagerlin, University of Utah, SALT LAKE CITY, UT, United States

Background: Up to 62% of adolescents and young adults (AYAs) with congenital heart disease (CHD) experience lapses in care when transitioning to adult services, increasing risk of adverse outcomes. Limited engagement and gaps in understanding their condition hinder readiness for independent care. Stakeholder-driven game design has generated feasible, engaging solutions for AYAs across health specialties. Applying these principles to a serious game designed to enhance self-management, self-advocacy, and confidence navigating healthcare may strengthen transition readiness.

Objective: This qualitative study explored AYA and caregiver perspectives through a participatory design process to inform development of a serious game supporting transition readiness.

Design/Methods: AYAs with CHD (15-21 years) and their caregivers were recruited from a single center. Eight virtual groups were conducted using the Design Box participatory design method (Altizer et al., 2017), which organizes collaborative ideation across four dimensions to generate game design “pitches”: technology, audience, aesthetics, and clinical problem. Sessions generated and refined game concepts. Transcripts were analyzed using Crabtree and Miller’s (1992) editing approach to identify thematic design priorities.

Results: Participants included 22 AYAs and 15 caregivers. Most AYAs were male (55%) and Non-Hispanic White (82%), and the mean age was 18 years. Caregivers were primarily female (78%) and Non-Hispanic White (78%), and the mean age 45 years. Four design priorities emerged. Engagement and personalization: Participants favored medically accurate yet playful visuals and customization to support ownership and immersion. Motivation and autonomy: Reward systems, progress tracking, and exploratory decision-making reinforced health behaviors and confidence navigating adult care. Accessibility and inclusion: Adaptable interfaces and representation of diverse identities were essential for credibility and engagement. Communication and connection: Features to support connection and transition, including multiplayer options, virtual support groups, and provider communication tools. The process also fostered shared understanding of how game design can enhance health communication and learning.

Conclusion(s): The Design Box participatory method was feasible for engaging AYAs and caregivers in co-designing a healthcare-related serious game. Integrating user perspectives produced concrete design principles to enhance transition readiness and continuity of CHD care and modeled a scalable framework for interdisciplinary collaboration in digital health.