Preferences and concerns for care needs in advanced Parkinson's disease: a qualitative study of couples.
Barbara Habermann, Ju Young Shin
PMID 27571437WHAT IT FOUND
Couples with advanced Parkinson's disease described frequent falls, speech and swallowing problems, financial strain and lack of prognostic information as major concerns.
They wanted to stay home but often had no plans because they did not know what to expect.
Key findings
01Frequent falls were the most common troublesome symptom or problem and were discussed by both people with Parkinson's disease and their spouses in all interviews.
02Voice production and clarity of speech problems, and swallowing or choking difficulties, were common troublesome areas.
03More than half of the couples had no advance directives, wills, or other legal plans because they did not know how or what to plan.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPsWhat it means for RNs
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What it does not show
The study was done in one geographic area of the United States and included only married, all Caucasian couples. It excluded couples where either person used prescribed memory enhancing medications, had psychiatric illness, or had another life limiting terminal illness. It described experiences and concerns; it did not test whether any care approach improved outcomes.
The easy way to misread this
Do not conclude that a particular advance care planning or respite intervention improved outcomes. The study only described couples' preferences and concerns; it did not test any intervention.