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Understanding uncertainty in young-onset Parkinson disease
Michael Ravenek1, Debbie L Rudman1, Mary E Jenkins2
11 School of Occupational Therapy, Elborn College, Western University, London, ON, Canada.
Chronic Illness
|November 10, 2017
Summary
Young-onset Parkinson's disease (YOPD) creates significant uncertainty for adults regarding their identity and daily functioning. Understanding this uncertainty is crucial for providing effective patient support and resources.
Area of Science:
- Neurology
- Psychology
- Sociology
Background:
- Young-onset Parkinson's disease (YOPD) is a rare subtype affecting adults typically younger than the average Parkinson's disease diagnosis age.
- Individuals with YOPD face unique challenges distinct from older-onset Parkinson's disease.
- This study explores the lived experiences of individuals with YOPD within a grounded theory framework.
Purpose of the Study:
- To identify and describe the core category of uncertainty experienced by individuals with YOPD.
- To understand how uncertainty impacts the identity and functioning of young-onset Parkinson's patients.
- To inform healthcare professionals on supporting patients experiencing YOPD-related uncertainty.
Main Methods:
- Grounded theory methodology was employed.
- Data collection involved in-depth interviews, focus groups, and an online discussion board with 39 individuals with YOPD.
- Analysis also included 14 autobiographies written by individuals with YOPD.
Main Results:
- Participants experienced uncertainty related to their identities as young and middle-aged adults, deviating from societal age-related life paths.
- Uncertainty also arose from the unpredictable progression of Parkinson's disease, impacting daily functioning.
- These uncertainties were linked to feelings of lost control and increased grief.
Conclusions:
- Uncertainty is a central experience for individuals with YOPD, affecting both personal identity and functional capacity.
- Healthcare providers need a deeper understanding of YOPD-related uncertainty to offer appropriate support.
- Addressing these specific uncertainties can improve the quality of life for young-onset Parkinson's patients.
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