“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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dc.check.date2025-12-24en
dc.check.infoAccess to this article is restricted until 12 months after publication by request of the publisheren
dc.contributor.authorCullen, Emmaen
dc.contributor.authorEccles, Fiona J. R.en
dc.contributor.authorByrne, Garyen
dc.contributor.authorDow, McKenzieen
dc.contributor.authorDwyer, Brendanen
dc.contributor.authorO’Riordan, Seanen
dc.contributor.authorO’Keeffe, Fiadhnaiten
dc.date.accessioned2025-01-07T16:55:52Z
dc.date.available2025-01-07T16:55:52Z
dc.date.issued2024-12-24en
dc.description.abstractBackground: 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.en
dc.description.statusPeer revieweden
dc.description.versionAccepted Versionen
dc.format.mimetypeapplication/pdfen
dc.identifier.citationCullen, E., Eccles, F. J. R., Byrne, G., Dow, M., Dwyer, B., O’Riordan, S. and O’Keeffe, F. (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. https://doi.org/10.1080/09638288.2024.2444481en
dc.identifier.doihttps://doi.org/10.1080/09638288.2024.2444481en
dc.identifier.eissn1464-5165en
dc.identifier.issn0963-8288en
dc.identifier.journaltitleDisability and Rehabilitationen
dc.identifier.urihttps://hdl.handle.net/10468/16786
dc.language.isoenen
dc.publisherTaylor & Francisen
dc.relation.ispartofDisability and Rehabilitationen
dc.rights© 2024, Informa UK Limited, trading as Taylor & Francis Group. This is an Accepted Manuscript of an item published by Taylor & Francis in Disability and Rehabilitation on 24 December 2024, available online: https://doi.org/10.1080/09638288.2024.2444481en
dc.rights.urihttps://creativecommons.org/licenses/by-nc/4.0/en
dc.subjectParkinson’s diseaseen
dc.subjectYoung-onseten
dc.subjectReflexive thematic analysisen
dc.subjectQualitative researchen
dc.subjectStigmaen
dc.title“A young person in an old person’s body”: a reflexive thematic analysis of the experience of living with young onset Parkinson’s diseaseen
dc.typeArticle (peer-reviewed)en
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