The self-management balancing act of spousal care partners in the case of Parkinson's disease.
Sue Berger, Tiffany Chen, Jenna Eldridge and 3 others
PMID 29228835WHAT IT FOUND
Spousal care partners of people with Parkinson's described juggling caregiving with their own work, leisure and friendships.
They used planning ahead, social contact and outside help while carrying both burden and compassion.
Key findings
01The analysis produced three themes: activities and caregiving, strategies to support self and spouse, and emotional impact including burden and compassion.
0226 of the 58 transcripts did not refer to caregiving at all, focusing instead on other frustrating or satisfying activities.
03Care partners described self-management strategies including social connection, planning ahead, and asking for formal or informal help.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The sample was small and homogeneous: 20 spousal care partners, all white, educated, living in the Boston area, and in heterosexual marriages. Participants volunteered, so very burdened or isolated spouses may be underrepresented. Interviews asked about recent frustrating and satisfying activities rather than caregiving directly, so caregiving experiences may be underreported. The researchers could not group care partners by Parkinson's disease stage because spouses' stage ratings changed over time. The study describes experiences and strategies; it does not show that any strategy improves health or caregiving outcomes. Data came from three time points, so changes over the longer course of Parkinson's disease are not fully captured.
Declared interests
The supplied metadata lists Research Support, N.I.H., Extramural. No other funding or conflict of interest statement is provided.
The easy way to misread this
Do not read the strategies described as proven ways to improve care partner health or social participation. The study reports what 20 spouses said about their experiences; it did not test whether any strategy worked.