Self-tracking in Parkinson's The Lived Efforts of Self-management

Abstract

People living with Parkinson's disease engage in self-tracking as part of their health self-management. Whilst health technologies designed for this group have primarily focused on improving the clinical assessments of the disease, less attention has been given to how people with Parkinson's (PwP) use technology to track and manage their disease in their everyday experience. We report on a qualitative study in which we systematically analysed posts from an online health community (OHC) comprising people with Parkinson's. Our findings show that PwP track a diversity of information and use a wide range of digital and non-digital tools, informed by temporal and structured practices. Using an existing framework of sensemaking for chronic disease self-management, we also identify new ways in which people with Parkinson's engage in sensemaking, alongside a set of new challenges that are particular to the character of this chronic disease. We relate our findings to technologies for self-tracking offering design implications. CCS CONCEPTS• Human-centered computing → Collaborative and social computing; Empirical studies in collaborative and social computing