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“A young person in an old person’s body”: a reflexive thematic analysis of the experience of living with young onset Parkinson’s disease

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E-pub ahead of print
  • Emma Cullen
  • Fiona J. R. Eccles
  • Gary Byrne
  • McKenzie Dow
  • Brendan Dwyer
  • Sean O’Riordan
  • Fiadhnait O’Keeffe
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<mark>Journal publication date</mark>24/12/2024
<mark>Journal</mark>Disability and Rehabilitation
Number of pages9
Pages (from-to)1-9
Publication StatusE-pub ahead of print
Early online date24/12/24
<mark>Original language</mark>English

Abstract

Background: People with young-onset Parkinson’s disease (YOPD), a term for those diagnosed with Parkinson’s disease (PD) under the age of 60, face unique challenges compared to those diagnosed with PD later in life. A better understanding of the lived experience of those with YOPD is essential to delivering bespoke rehabilitation and improving quality of life. Purpose: To provide insight into the emotional and social lived experience of individuals with YOPD. Method: Semi-structured interviews were completed with twelve adults diagnosed with YOPD, aged between 30 and 59. Reflexive thematic analysis was used to analyse the data. Results: Three major themes were developed: Theme 1: “I’m not drunk or stupid, I’m just a young person with Parkinson’s”: A daily dose of stigma; Theme 2: “I often feel like I’ve done something wrong, like I am wrong”: The heavy weight of shame; and Theme 3: “I was mourning my future, it felt like a death”: Grieving what has been, and what will be, lost. Conclusion: Grief and social stigma can result in shame and self-criticism in YOPD. Implications for healthcare professionals include the recommendation to routinely offer psychological support for individuals living with YOPD. Awareness campaigns about YOPD are needed to reduce stigma.