Growing With the Condition: Co-Designing Pediatric Technologies that Adapt Across Developmental Stages

Paper Title

Growing With the Condition: Co-Designing Pediatric Technologies that Adapt Across Developmental Stages

Publication Info

• Topic area: Pediatric health technology design for chronic conditions
• Keywords: Pediatric HCI, co-design, congenital heart disease, developmental stages, child-centered design, adaptive technologies, chronic illness management, participatory design, peer support, clinical communication

Background and Problem

• Problem / challenge: Existing pediatric health technologies often treat children as a homogeneous group, failing to adapt to developmental differences as children grow. Most systems are static, targeting a single age group, and overlook how children’s needs evolve across early, middle, and late childhood.
• Significance: Addressing this gap is crucial for supporting children with chronic conditions like congenital heart disease (CHD), where developmental changes significantly impact self-management, communication, and peer relationships. Adaptive technologies could reduce friction, stigma, and the burden on families managing complex care.
• Motivation and related work: Prior research has explored parent-centered, family-centered, and child-centered approaches, including playful and gamified systems. However, these efforts often focus on a single developmental stage or substitute parents’ perspectives for children’s voices. Few studies compare children’s experiences across age groups within the same condition, limiting understanding of developmental transitions.

Solution

• Proposed approach: A cross-age co-design methodology to identify developmental differences in challenges and coping strategies among children with CHD and to derive design implications for adaptive pediatric health technologies.
• Novelty:
  1. Empirical insights into how children with CHD navigate inclusion, communication, and clinical encounters across developmental stages.
  2. Identification of design implications for developmentally adaptive technologies that evolve with children’s needs.
  3. Use of fictional inquiry and participatory design to elicit age-specific perspectives in a medically supported, low-pressure camp setting.
  4. Cross-age comparison to surface developmental contrasts without requiring longitudinal studies.
• Procedure and key techniques:
  • Conducted four co-design workshops with 69 children (ages 5–18) at a CHD-focused camp.
  • Used age-appropriate participatory methods, including narrative scaffolding (fictional storyworld), drawing, writing, and reflection activities.
  • Analyzed children’s worksheets and posters to identify age-specific challenges, coping strategies, and support needs.
  • Compared findings across three developmental stages: elementary school (ES), middle school (MS), and high school (HS).

Results

• Concrete findings:
  • Social inclusion strategies: ES children sought immediate comfort (e.g., breaks, toys), MS children managed stigma through withdrawal and safe spaces, HS children balanced inclusion with responsibility by planning roles and communicating needs.
  • Communication strategies: ES children relied on symbols and comfort objects, MS children used metaphors and parental mediation, HS children prepared scripts and sought control over disclosure.
  • Clinical anxiety coping: ES children used comfort objects and imagination, MS children depended on parents and supportive tools, HS children prepared questions and engaged providers directly.
• Advantage over baselines: The study revealed developmental contrasts that static, single-stage technologies fail to address. It demonstrated the need for adaptive systems that grow with children, unlike current solutions that children often outgrow.
• Experiments / evaluation:
  • Workshops involved 69 children with CHD, divided into ES, MS, and HS groups.
  • Activities included drawing, writing, and reflection tasks framed within a fictional storyworld.
  • Data were analyzed through thematic coding to identify developmental patterns in challenges, coping, and support.
• Limitations and future work:
  • Findings may not generalize to clinical or school settings due to the camp-based, low-pressure environment.
  • The fictional storyworld may have influenced children’s responses.
  • Cross-sectional design enabled developmental comparison but did not track individual changes over time.
  • Future work should prototype adaptive systems and conduct longitudinal studies to validate developmental trajectories.

Summary

This study explored how children with congenital heart disease (CHD) navigate inclusion, communication, and clinical encounters across developmental stages. Through co-design workshops with 69 children, it identified age-specific challenges and coping strategies, revealing developmental trajectories from comfort-seeking in early childhood to strategic agency in adolescence. The findings highlight the need for pediatric health technologies that adapt to children’s evolving needs, addressing gaps in current static, age-specific solutions. By centering children’s voices and developmental differences, the study advances design principles for adaptive, child-centered systems that grow alongside children with chronic conditions.