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Co-designing for the Triad: Design Considerations for Collaborative Decision-Making Technologies in Pediatric Chronic Care

Ray-Yuan Chung, Jaime Snyder, Zixuan Xu, Daeun Yoo, Athena C. Ortega, Wanda Pratt, Aaron Wightman, Ryan Hutson, Cozumel Pruette, Ari Pollack

Abstract

In pediatric chronic care, the triadic relationship among patients, caregivers, and healthcare providers introduces unique challenges for youth in managing their conditions. Diverging values, roles, and asymmetrical situational awareness across decision-maker groups often hinder collaboration and affect health outcomes, highlighting the need to support collaborative decision-making. We conducted co-design workshops with 6 youth with chronic kidney disease, 6 caregivers, and 7 healthcare providers to explore how digital technologies can be designed to support collaborative decision-making. Findings identify barriers across all levels of situational awareness, ranging from individual cognitive and emotional constraints, misaligned mental models, to relational conflicts regarding care goals. We propose design implications that support continuous decision-making practice, align mental models, balance caregiver support and youth autonomy development, and surface potential care challenges. This work advances the design of collaborative decision-making technologies that promote shared understanding and empower families in pediatric chronic care.

Co-designing for the Triad: Design Considerations for Collaborative Decision-Making Technologies in Pediatric Chronic Care

Abstract

In pediatric chronic care, the triadic relationship among patients, caregivers, and healthcare providers introduces unique challenges for youth in managing their conditions. Diverging values, roles, and asymmetrical situational awareness across decision-maker groups often hinder collaboration and affect health outcomes, highlighting the need to support collaborative decision-making. We conducted co-design workshops with 6 youth with chronic kidney disease, 6 caregivers, and 7 healthcare providers to explore how digital technologies can be designed to support collaborative decision-making. Findings identify barriers across all levels of situational awareness, ranging from individual cognitive and emotional constraints, misaligned mental models, to relational conflicts regarding care goals. We propose design implications that support continuous decision-making practice, align mental models, balance caregiver support and youth autonomy development, and surface potential care challenges. This work advances the design of collaborative decision-making technologies that promote shared understanding and empower families in pediatric chronic care.

Paper Structure

This paper contains 26 sections, 2 figures, 1 table.

Figures (2)

  • Figure 2: Vignette storyboard used for role-playing and values elicitation during co-design sessions.
  • Figure 3: Example sketch of a proposed magical tool from the co-design workshop. The tool is a mobile app with features to support gathering and contextualizing dietary information, and future planning.