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

Cullen, Emma and Eccles, Fiona J. R. and Byrne, Gary and Dow, McKenzie and Dwyer, Brendan and O’Riordan, Sean and O’Keeffe, Fiadhnait (2024) “A young person in an old person’s body” : a reflexive thematic analysis of the experience of living with young onset Parkinson’s disease. Disability and Rehabilitation. pp. 1-9. ISSN 0963-8288

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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.