To increase patient engagement and facilitate patient-provider collaboration, tools that incorporate patients’ goals into medical care plans are needed. However, few studies have explored how hospitalized patients set and share goals to communicate with their caregivers and clinical care teams. Even less is known for how pediatric patients experience sharing their goals during hospitalization. This paper presents a technology probe study to characterize how pediatric patients perceive goal-setting, and how goal-sharing affects their collaboration with their caregivers and clinical care teams. We conducted this study with 13 patient families and 4 clinicians. We found that goals set and shared by pediatric patients foster the patients’ autonomy to participate in care decision-making, reveal the gaps of understanding between patients and caregivers, support the patients emotionally during patient and care team interaction, and convey the patients’ personalities and preferences to the clinical care team. In addition, we recommend design opportunities to support the different ways that patients’ goals can foster high-quality patient care. We also discuss how patients’ goals impact the tension of shared decisional authority between patients and caregivers, and how goals support pediatric patients transition to self-care.
https://doi.org/10.1145/3449238
The 24th ACM Conference on Computer-Supported Cooperative Work and Social Computing