Abstract
Background
People with younger onset Parkinson's disease reported trouble navigating the health
system and managing their Parkinson's disease symptoms. This impacted their everyday
responsibilities, such as maintaining employment, caring for children, or meeting
financial commitments.
Aim
To understand the experiences of the unmet support needs of people diagnosed with
younger onset Parkinson's disease and allow a deeper understanding of their lived
experiences.
Methods
Data were collected by interviewing four participants about their perceptions of the
current supports available. Interpretative phenomenological analysis was applied for
in-depth exploration of the participant's experience, allowing the participant and
the researcher to ‘make sense’ of their descriptions. The COREQ criteria for reporting
of qualitative research were used to guide this study.
Findings
Four clear overarching themes were identified: (i) ‘The pre-diagnosis of Parkinson's:
denial’, (ii) ‘What is next?’, (iii) ‘Knowledge is power, mostly’, (iv) ‘Loss and
acceptance of identity’.
Discussion
This study has highlighted the demoralisation people with younger onset Parkinson's
disease experience when they are left in a state of not knowing what is next. People
with younger onset Parkinson's disease experienced a range of changing emotions and
described the emotional turmoil experienced when not supported.
Conclusion
This research highlighted that a diagnosis of younger onset Parkinson's disease causes
significant distress, particularly if trying to maintain employment or care for children.
People with younger onset Parkinson's disease highlighted the need for psychosocial
support to be instigated at the point of diagnosis.
Keywords
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Article info
Publication history
Published online: October 18, 2022
Accepted:
September 27,
2022
Received in revised form:
August 18,
2022
Received:
March 16,
2022
Publication stage
In Press Corrected ProofIdentification
Copyright
© 2022 Australian College of Nursing Ltd. Published by Elsevier Ltd.
