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

TL;DR

This paper explores how digital technologies can be co-designed to improve collaborative decision-making among youth with chronic kidney disease, caregivers, and healthcare providers, addressing unique challenges in pediatric chronic care.

Contribution

It presents new design considerations and implications for creating collaborative decision-making tools tailored to pediatric chronic care triads.

Findings

Identified barriers in situational awareness across decision-makers

Proposed design strategies to align mental models and support autonomy

Highlighted the importance of continuous decision-making practice

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.