Designing technologies for self-care: Describing the lived experiences of individuals with rheumatoid arthritis

Self-care of a chronic illness is a lifelong management process that includes taking medications, monitoring symptoms, and coping with emotional and lifestyle changes. Human-Computer Interaction (HCI) research has often responded to these needs by developing technologies that help an individual quantify aspects of their chronic illness, like daily pain, flare ups, or personal behaviours like diet and exercise. But this quantification fails to account for the ongoing needs of understanding ones disease and maintaining a balanced lifestyle. To understand these needs, we interviewed 12 people about their lived experience with Rheumatoid Arthritis (RA). We performed a thematic analysis of collected data and identified three types of support currently lacking for RA: (1) psychosocial care (2) patient agency, and (3) lifestyle adaptations. Our results highlight the need to support long term uncertainty while living with a chronic illness and identify needs the HCI community should consider when developing self-care technologies.