Reconfiguring the Everyday: Understanding, Designing, and Supporting Chronic Illness Management

Abstract

From taking medications at the right time to emotionally dealing with their symptoms, patients who have a chronic illness must manage many facets of their illness. Today, patients often utilize different types of general-purpose technologies (e.g., Facebook) to manage their chronic illness. However, many of these technologies were designed with a general user in mind—a user who does not necessarily have the same needs as one who has a chronic illness. In this dissertation, I discuss how people from three distinct populations—health vloggers with a chronic illness, older adults who have diabetes, and children with a chronic illness—reconfigure the "everyday things" that surround them. In other words, I unpack how artifacts, relationships, roles, and technologies—the things of our daily lives—are deftly reconfigured to support chronic illness management. In my first study, I examined how adults with one of three chronic illnesses used YouTube to create and upload health video blogs (vlogs) to establish deep and meaningful connections with viewers. Utilizing the video medium, health vloggers shared information and knowledge about their illness with others while also receiving social support from viewers. In my second study, I explored how older adults who have diabetes appropriate opportunistic reminders to help remind them of certain health tasks and overall health goals. These opportunistic reminders include artifacts, activities, routines, and relationships. In my third study, I examined how children with a chronic illness utilize technologies to maintain a sense of normalcy with their peers. To feel "normal" among their peers, I found that children often appropriated technologies (e.g., such as using Facebook to update their peers about their health without the need to fully engage with them if they do not feel well) to better fit their needs and feelings of having an illness. Drawing from these discussions, I detail how researchers and other interested parties can design technologies that leverage this appropriation of everyday things for patients' chronic illness management. Lastly, I expand on how we can further improve current design methodologies when designing for and with patients who have a chronic illness. In designing technologies for these populations, I suggest designing for reappropriation— supporting appropriation in existing general technologies in addition to newly designed technologies. By designing for reappropriation, we can build upon and embrace the world that those with chronic illnesses have already reconfigured.