Catriona Curtin

This paper draws on stories of receiving the diagnosis of Parkinson’s disease, which emerged from a broader narrative study exploring beliefs about exercise and challenges facing people with Parkinson’s disease. Background/Objectives: By interviewing people with Parkinson’s disease (PwPD) and their family members, this paper aimed to gain insights into PwPD’s experiences with diagnosis, its influence on exercise engagement, and access to services in Ireland. Methods: This study employed a qualitative research design, using purposeful and maximum variation sampling. PwPD (varying in age, sex, geographical setting, and disease severity) were recruited from urban physiotherapy services. Semi-structured interviews with 12 PwPD and a group interview with four family members were conducted between November 2022 and January 2023. The interviews were recorded, transcribed, and analysed using thematic analysis. Results: Four themes emerged: (1) firstly, there was disempowerment and emotional shock at diagnosis: PwPD expressed frustration with delays in diagnosis and with how language and empathy affected their ability to cope initially. (2) There was a lack of signposting and services access: a strong need exists for clear information on services and resources to prevent social disengagement. (3) In terms of exercise education and self-management support, PwPD lacked early exercise education and guidance, relying on self-education. (4) With regard to the emotional burden on family caregivers, family members manage care logistics and face emotional burdens, which they try to conceal. Conclusions: The delivery of a Parkinson’s diagnosis could be improved by recognising its psychosocial impact on PwPD and families. Providing clear information on services within weeks of diagnosis was considered crucial. Limited exercise education affected PwPD’s ability to self-manage. Early physiotherapy access is strongly recommended to help delay functional decline and encourage an active lifestyle.

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.