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

Neda Barbazi, Ji Youn Shin, Gurumurthy Hiremath, Carlye Anne Lauff

TL;DR

Through child-centered participatory design, empirical insights are contributed into how children's management of chronic conditions evolves and design implications for pediatric health technologies that adapt across developmental trajectories are proposed.

Abstract

Children with chronic conditions face evolving challenges in daily activities, peer relationships, and clinical care. Younger children often rely on parental support, while older ones seek independence. Prior studies on chronic conditions explored proxy-based, family-centered, and playful approaches to support children's health, but most technologies treat children as a homogeneous group rather than adapting to their developmental differences. To address this gap, we conducted four co-design workshops with 69 children with congenital heart disease (CHD) at a medically supported camp, spanning elementary, middle, and high school groups. Our analysis reveals distinct coping strategies: elementary children relied on comfort objects and reassurance, middle schoolers used mediated communication and selective disclosure, and high schoolers emphasized agency and direct engagement with peers and providers. Through child-centered participatory design, we contribute empirical insights into how children's management of chronic conditions evolves and propose design implications for pediatric health technologies that adapt across developmental trajectories.

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

TL;DR

Through child-centered participatory design, empirical insights are contributed into how children's management of chronic conditions evolves and design implications for pediatric health technologies that adapt across developmental trajectories are proposed.

Abstract

Children with chronic conditions face evolving challenges in daily activities, peer relationships, and clinical care. Younger children often rely on parental support, while older ones seek independence. Prior studies on chronic conditions explored proxy-based, family-centered, and playful approaches to support children's health, but most technologies treat children as a homogeneous group rather than adapting to their developmental differences. To address this gap, we conducted four co-design workshops with 69 children with congenital heart disease (CHD) at a medically supported camp, spanning elementary, middle, and high school groups. Our analysis reveals distinct coping strategies: elementary children relied on comfort objects and reassurance, middle schoolers used mediated communication and selective disclosure, and high schoolers emphasized agency and direct engagement with peers and providers. Through child-centered participatory design, we contribute empirical insights into how children's management of chronic conditions evolves and propose design implications for pediatric health technologies that adapt across developmental trajectories.
Paper Structure (32 sections, 6 figures, 5 tables)

This paper contains 32 sections, 6 figures, 5 tables.

Table of Contents

  1. Introduction
  2. Related Work
  3. Technologies for Pediatric Chronic Illness Management
  4. Co-design with Children
  5. Methods
  6. Study Context, Settings and Participants
  7. Design of the Co-Design Process
  8. Icebreaker and Assessment: Wisdom Map (5 minutes)
  9. Educational Short Video (3 minutes)
  10. Reflection Activity 1 (5 minutes)
  11. Main Design Quest: Lady Elira’s Challenges (20 minutes)
  12. Reflection Activity 2 (5 minutes)
  13. Data Analysis
  14. Findings
  15. Social Inclusion and Peer Participation
  16. ...and 17 more sections

Figures (6)

  • Figure 1: Co-design workshop sessions with high school (left), middle school (center), and elementary school (right) groups.
  • Figure 2: Study design and activity timeline (top), introduction scene with the “plush knight” as fictional guide, participants as “brave knights,” and camp and research facilitators in the Kingdom of Cardia (bottom).
  • Figure 3: Wisdom Map worksheets for elementary and middle school children (left) and high school children (right).
  • Figure 4: Reflection 1: Middle school children posting their reflections about the educational video.
  • Figure 5: Main Design Quest persona poster introducing Lady Elira and her three challenges.
  • ...and 1 more figures