Navigating Life With Parkinson's Disease: A Focus Group Study on Coping Strategies and Considerations for Self-Management Support.
Maud M J Daemen, Bouke A A G De Bruijn-Heijligers, Colin Van Der Heijden and 4 others
PMID 39225125WHAT IT FOUND
People with Parkinson's disease described coping as changing over time, often moving from denial or avoidance to proactive task-oriented strategies after a key point.
They wanted tailored self-management support beyond medication, including peers, lifestyle, psycho-emotional guidance and autonomy.
Key findings
01Participants described moving through coping strategies as the disease progressed, with denial or avoidance often appearing shortly after diagnosis or in early disease.
02Those further in adaptation showed proactive task-oriented coping, including seeking support, staying informed, sharing experiences, and focusing on activities that brought energy.
03Participants wanted accessible, tailored, adaptive self-management support that included nutrition, lifestyle, psycho-emotional guidance, and peer connection.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Only 12 participants were analysed, and they came from five focus groups, so the themes may not capture all people with Parkinson's disease. Participants were younger than the average group of people with Parkinson's disease, so coping in older adults may differ. Convenience sampling was used, so the sample may not represent people with Parkinson's disease who did not take part. The study used only focus groups, so the themes were not checked against observations or objective measures. One focus group recording was lost and field notes were used, which may have affected the detail from that group. The moderator knew many participants, which may have made sharing easier or shaped the discussion.
Declared interests
University Maastricht and the Academic Hospital Maastricht, with Mayke Oosterloo as inventor, have submitted a patent application EP23197746. The other authors report no conflicts of interest.
The easy way to misread this
Do not read these coping themes as proof that a self-management program works. This was a focus group study of 12 people with Parkinson's disease, and no intervention was tested.