UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

Beyond the bulging binder : family-centered design of an information management system for caregivers of children living with health complexity Sepehri, Katayoun


Children Living with Health Complexity (CLHC) require continuity of health and community care to improve their quality of life and decrease family care burden. Due to medical complexity and numerous chronic conditions, these children rely heavily on multiple care providers. However, a fragmented health system and the communication challenges between stakeholders poses many obstacles for their caregivers, and the result is non-optimal care in both hospital and community. This leads to an immense burden on families who take on dual roles and become responsible for care coordination. Parent caregivers must continually manage and share masses of paper documents and repeat their child’s story for different stakeholders. A digital information management and care coordination solution to support these caregivers is long overdue. Our goal was to engage with parent caregivers of CLHC through the user-centered design process to understand their needs in a digital solution. Twelve caregivers participated in three rounds of user studies which were followed by design phases. In the first phase of the study, we aimed to understand the caregiver challenges, pain-points and strategies for dealing with masses of paper and electronic data. By utilizing thematic analysis, we found a set of caregiver challenges which closely aligned with previous research: access to health records, navigating the care system, organizing and managing information, finding resources, repeating their story, and managing finances. We mapped these challenges to the caregiver strategies and devised a set of design principles to address these challenges. We also collected data on caregivers’ feature preferences in a digital solution. Our emergent design principles are: providing a holistic view of patient care, allowing customizability and flexibility, personalizing and humanizing, facilitating communication and collaboration with care providers, avoiding jargon, capturing health history and providing insight, sharing and accessing confidentially, and integrating information. Finally, we developed an extensive prototype blueprint through an iterative process of feedback and design to serve as an example for implementing these design principles in a caregiver-centered interface. The design principles and the prototype are intended to be a stepping stone for developing the content and features of a caregiver-centered information management system.

Item Citations and Data


Attribution-NonCommercial-NoDerivatives 4.0 International