Supporting Coping with Parkinson's Disease Through Self Tracking
Sonali R. Mishra, Predrag Klasnja, John MacDuffie Woodburn, Eric B. Hekler, Larsson Omberg, Michael Kellen, Lara M. Mangravite · 2019
Self-tracking can help people understand their medical condition and the factors that influence their symptoms. However, it is unclear how tracking technologies should be tailored to help people cope with the progression of a degenerative disease. To understand how smartphone apps and other tracking technologies can support people in coping with an incurable illness, we interviewed both people with Parkinson's Disease (n=17) and care partners (n=6) who help people with Parkinson's manage their lives. We describe how symptom trackers can help people identify and solve problems to improve their quality of life, the role symptom trackers can play in helping people combat their own tendencies towards avoidance and denial, and the complex role of care partners in defining and tracking ambiguous symptoms. Our findings yield insights that can guide the design of tracking technologies to help people with Parkinson's Disease accept and plan for their condition.