Coller, Ryan J.

Background: Enteral tubes are prevalent among children with medical complexity (CMC), and complications can lead to costly health care use. Our objective was to design and test the usability of a mobile application (app) to support family-delivered enteral tube care. Methods: Human-centered design methods (affinity diagramming, persona development, and software development) were applied with family caregivers of CMC to develop a prototype.

Introduction: 169 U.S. health systems now engage in OpenNotes: a movement to share clinical notes with patients. Few studies have focused on releasing notes during hospitalization, pediatrics, or parents/caregiver perspectives.

Objectives: Children with medical complexity (CMC) are commonly assisted by medical devices, which family caregivers are responsible for managing and troubleshooting in the home. Optimizing device use by maximizing the benefits and minimizing the complications is a critical goal for CMC but is relatively unexplored. In this study, we sought to identify and describe workarounds families have developed to optimize medical device use for their needs. Methods: We conducted 30 contextual inquiry interviews with families of CMC in homes.