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

Abstract Introduction 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. Methods 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). Findings The analysis resulted in three categories: illness‐related tasks, internal resources and 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, clinicians and other sources of disease‐specific knowledge. Self‐care was found to fluctuate between beneficial and burdensome depending on such resources. Conclusions 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. Patient or Public Contribution A researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript.

Keywords

• Parkinson's disease
• qualitative
• self‐care
• self‐empowerment
• self‐management patient author
• self‐tracking