“Exercise… to Me, It’s Freedom”: Motivation, Support, and Self-Management to Keep Physically Active with Parkinson’s Disease: A Qualitative Study

Abstract

The benefits of exercise have been widely explored among people with Parkinson’s (PwP). Exercise can improve non-motor (fatigue, pain, sleep, etc.) and motor features (balance, muscle strength, gait speed, etc.), maintain function, as well as prevent disease progression. Although the benefits are well known, PwP continue to show difficulty adhering to physical activity and exercise. This study aims to explore motivation to exercise, support, and self-management needs among people with Parkinson’s, their family members, and physiotherapists. Purposeful and maximum-variation sampling methods (age, sex, geographical setting, and disease severity) were employed. PwP and family members were recruited through physiotherapy services and local support groups. Twelve semi-structured interviews with PwP and two group interviews, one with family members (n = 4) and one with physiotherapists (n = 5), were conducted. Interview guides were informed by patient–public input and a recent systematic review. Interviews were recorded, transcribed, and analysed using thematic analysis informed by the Grounded Theory methodology. Four common themes emerged: (1) The value of an intrinsic connection with exercise, for which there are challenges. A greater connection to exercise led to long-term adherence. (2) Adapting exercise to the needs and preferences of a person is essential. Preferred exercises and environments were mixed, with differences emerging between sexes. (3) Physiotherapists’ aim to only maintain physical function led to frustration. Limited self-management opportunities, stigma, and dehumanisation were discussed. (4) Non-motor symptoms, stigma, fear, and determination as well as apathy, pain, and low mood were discussed. Exercise provided physical, emotional, and social rewards. Supports are necessary; however, challenges arise when PwP’s motivations are mismatched to family members’ and physiotherapists’ goals. Co-created goals, tailored to their preferences, and exercise plans with supported self-management are recommended.

Keywords

• Parkinson’s Disease
• exercise
• physiotherapists
• social stigma
• qualitative research