Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.
Sandhya Seshadri, Angela Contento, Kei Sugiura and 3 others
PMID 38264847WHAT IT FOUND
Family carepartners of people with Parkinson's disease said unpredictability was hardest, but many rejected "burden," saw caregiving as partnership, and found satisfaction, joy, and personal growth.
Key findings
01Carepartners said the unpredictable timing and severity of Parkinson's symptoms was the hardest part of caregiving, and they needed to be alert even when sleeping.
02Participants did not describe caring for a family member as a "burden," preferring "stressful" or "difficult," and they framed caregiving as a partnership.
03Carepartners reported satisfaction, joy, gratitude, and personal growth, including feeling that they had contributed to comfort.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 16 English-speaking current or former primary family carepartners were interviewed, so the findings are descriptive and may not apply to other carepartners. The sample was predominantly white and mostly spouses, and the authors say male carepartners may not have been adequately captured. No carepartners helped develop the interview guide, so some aspects of caregiving may have been missed. The authors first approached carepartners who had previously participated in their research studies, then used snowball referrals.
Declared interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The easy way to misread this
Do not read these themes as evidence that a palliative care approach improves carepartner wellbeing. The study asked 16 family carepartners to describe their perceptions and did not test an intervention or measure outcomes.