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Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
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TY - JOUR
T1 - “A young person in an old person’s body”
T2 - a reflexive thematic analysis of the experience of living with young onset Parkinson’s disease
AU - Cullen, Emma
AU - Eccles, Fiona J. R.
AU - Byrne, Gary
AU - Dow, McKenzie
AU - Dwyer, Brendan
AU - O’Riordan, Sean
AU - O’Keeffe, Fiadhnait
PY - 2024/12/24
Y1 - 2024/12/24
N2 - 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.
AB - 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.
U2 - 10.1080/09638288.2024.2444481
DO - 10.1080/09638288.2024.2444481
M3 - Journal article
SP - 1
EP - 9
JO - Disability and Rehabilitation
JF - Disability and Rehabilitation
SN - 0963-8288
ER -