The Neglected Care Burden and Unmet Needs of Informal Caregivers of Stroke Survivors. A Qualitative Study.
Linn Wagner Sønderby, Maria Søe Mattson, Jacob Liljehult and 3 others
PMID 42403166WHAT IT FOUND
Caregivers of stroke survivors described heavy new roles, coordination and personal care, and feeling left without clear stroke information.
They valued continuity with home physiotherapists and occupational therapists.
Key findings
01Fifteen caregivers described taking over household tasks, personal care and coordination, and being constantly alert to falls.
02Caregivers reported that home collaboration with physiotherapists or occupational therapists was more fruitful than inpatient rehabilitation when the same therapist attended.
03Almost all caregivers reported an unmet need for timely, clear and relevant information and follow-up from health professionals.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for RNs
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What it does not show
Only 15 caregivers were interviewed, and the paper says most participants were spouses and more were female than male, so perspectives may be limited. The study was done in a Danish acute stroke ward and municipal care system, so it may not transfer to other settings. Caregivers were interviewed 1 to 6 months after the survivor returned home, so some were still adjusting and recall may vary. Most interviews were conducted by telephone because of the COVID-19 pandemic, which may have affected rapport. Stroke survivors selected which caregivers could be contacted, and some survivors could not consent, so caregivers of other stroke groups may be missing. The study reports experiences and needs, not tested effects of any service.
Declared interests
The study was supported by Novo Nordisk Fonden. The authors declared no conflicts of interest.
The easy way to misread this
Do not read this as proof that follow-up consultations or continuity reduce caregiver burden. It is a qualitative study of 15 caregivers' experiences, not a test of an intervention.