Balancing feeling 'prepared' without feeling 'devoured': A qualitative study of self-care from the perspective of self-empowered persons living with Parkinson's disease in Sweden.

Abstract

Parkinson's Disease (PD) is a complex neurodegenerative disease resulting in a wide range of motor and nonmotor symptoms for which the treatment regimen is often complex. People with Parkinson's (PwP) spend time daily on self-care practices including self-tracking signs and symptoms or seeking disease-specific knowledge. Research suggests self-care interventions yield promising care and health outputs for PwP, yet most research focuses on the provider perspective rather than that of those conducting the self-care. This study explores the meaning of self-care, disease-specific knowledge, and self-tracking from the perspective of PwP in Sweden. Qualitative data from three data sets were analyzed and compared using qualitative content analysis: one focus group on self-care (n = 14), one free-text survey on disease-specific knowledge (n = 197)and one free-text survey on self-tracking (n = 33). The analysis resulted in three categories: illness-related tasks, internal resourcesand external resources. Illness-related tasks describe various tasks PwP carry out in self-care, including lifestyle choices, treatments, and self-tracking. Internal resources include personal knowledge/skills as well as mindsets which could facilitate or challenge completing these tasks. Finally, external resources include other PwP, literature, cliniciansand other sources of disease-specific knowledge. Self-care was found to fluctuate between beneficial and burdensome depending on such resources. In conclusion, self-care needs to be acknowledged and discussed more often in PD and other complex conditions. Future self-care interventions should consider self-tracking and disease-specific knowledge as well as internal and external resources in their design and implementation. A researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript.