‘I Knew Nothing About Parkinson’s’: Insights into Receiving a Diagnosis of Parkinson’s Disease and the Impact of Self-Management, Self-Care, and Exercise Engagement, from People with Parkinson’s and Family Members’ Perspectives: Qualitative Study

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Abstract
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.
Funding Information
  • Irish Research Council ((EPSPG/2021/77))

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