Designing for Caregiver-facing Values Elicitation Tools

In serious illness contexts, caregivers tasked with making decisions for incapacitated patients face unique challenges. Current tools for values elicitation, primarily patient-oriented, may not fully meet caregiver needs. This study, involving 12 caregivers, adopted a research-through-design approach to evaluate caregiver-facing values elicitation tools. The findings reveal caregivers’ need for more support in understanding their own values, discerning patient values, and reconciling these perspectives. While caregivers seek tools for consensus building within the family, they prefer using them individually rather than in a shared manner. The study also highlights a general unawareness of the importance of values in decision-making. This lack of understanding points to the need for tools that educate as well as aid in decision-making. Finally, tool designers must balance top-down directives with bottom-up values in their designs. This research informs the development of more effective caregiver-facing values elicitation tools.