Choreographing life-experiences of balance control in people with Parkinson’s disease

Abstract

Background Parkinson’s disease (PD) is a devastating neurodegenerative disorder. Reduced balance is one of the cardinal symptoms of PD, predisposing people living with PD to experience difficulties with the execution of tasks and activities, as well as hindering their involvement in life situations. Objective The aim of this study was to explore how deficits in balance control manifest in everyday life and how it is managed by people with PD (PwPD). Design Qualitative description was used. Methods In-depth interviews were conducted with 18 participants, between the ages of 46 to 83 years, with mild to severe PD. Interview transcripts were analyzed using qualitative content analysis, following an inductive approach. Results One theme emerged from the analysis: Increased planning—choreographing life. Within this overarching theme, two categories were identified, namely Limitations in mobility and New restricted functioning in everyday life, each with 3-4 sub-categories. The categories described how PwPD handled decreased balance control in their everyday life by using motor and cognitive strategies as a consequence of not trusting their body’s capacity to control balance. Activities in everyday life, as well as the ability to partake in leisure and social activities were affected. Conclusion People with mild to severe PD used strategies to handle decreased balance and they choreographed their lives around their individual current state of mobility and balance. The knowledge gained from this study can be used to develop targeted interventions addressing the nuances of balance deficits in everyday life.