Between a Rock and a Hard Place: The Challenges of Caregiving During a Pandemic for Parkinson's Family Care Partners.
Sandhya Seshadri, Sally A Norton, Tyler Stahl and 5 others
PMID 35943434WHAT IT FOUND
Parkinson's family caregivers described choosing between risky healthcare visits and unsupported home care during the pandemic.
They wanted providers to listen, give clear guidance, and help with exercise, medications, isolation, and their own health.
Key findings
01Care partners described having to choose between bringing the person with Parkinson's to healthcare settings, where they feared infection, and managing sudden changes at home.
02When exercise programs and support services were unavailable, care partners took over exercise supervision and worried about falls and weakness.
03Care partners wanted timely access to healthcare teams, fact-based guidance for difficult decisions, and to be listened to.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for SLPs
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What it does not show
The sample was mostly White/Caucasian spouses, so it may not reflect other racial backgrounds or non-spouse caregivers. Caregivers with limited telephone or internet access may not have been reached. The study describes experiences during the pandemic; it does not test whether supports reduce burden. The authors state they did not capture all caregiving challenges.
Declared interests
The study was part of a larger project funded by PCORI Dissemination and Implementation Award DI-2019C2–17499. The authors declared no potential conflicts of interest.
The easy way to misread this
Do not conclude that call-in centers or team-based palliative care reduce caregiver burden. The study reports caregivers' experiences and desired supports, not outcomes from those supports.