Centering the person in development of a model of care for people with Parkinson's disease: a qualitative study.
Christine M Clarkin, D Grace Smith, Ellen L McGough and 1 others
PMID 39136378WHAT IT FOUND
People with Parkinson's and their care partners described feeling overwhelmed by fragmented care.
They wanted a single coordinator to manage referrals, clear information on daily life and medications, and community groups to reduce isolation and stigma.
Key findings
01Participants identified a critical lack of knowledge about available services and felt forced to shoulder the burden of finding and coordinating care themselves.
02Access to allied health services like physical, occupational, and speech therapy was limited by insurance coverage issues and a lack of nearby providers with Parkinson's expertise.
03Community-based exercise and support groups were described as essential for reducing isolation and providing peer support, though physical symptoms and stigma often prevented access.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The study was conducted in a specific region of the US (Northeast) without access to Centers of Excellence, so findings may not apply to urban areas with better resource availability. The sample had limited racial, ethnic, and socioeconomic diversity, which may skew the perspective on barriers like cost and access. The presence of care partners in the same focus group as people with Parkinson's may have influenced how openly participants shared their experiences. Participants were aware of the researchers' clinical backgrounds, which may have affected the trust and type of information shared.
Declared interests
The authors declared no competing interests.
The easy way to misread this
Do not interpret these findings as evidence that a coordinated care model improves clinical outcomes like motor function or quality of life scores. This study reports patient perspectives and desires for care, not the effectiveness of any specific intervention.