Caring for a stroke patient: The burden and experiences of primary caregivers in Uganda - A qualitative study.
Namale Gertrude, Rachel Kawuma, Winifred Nalukenge and 6 others
PMID 31660183WHAT IT FOUND
Ugandan stroke caregivers described sudden duties, financial strain and exhaustion.
Recovery brought relief; death brought grief. They valued listening and support from staff and family, but lacked supplies, rehabilitation and follow-up.
Key findings
01Caregivers described sudden responsibility for feeding, toileting, dressing, medication and emotional support, with fatigue and sleepless nights.
02Shortages of food, gloves, masks, wheelchairs and physiotherapy made home care difficult, and some caregivers stopped hospital reviews.
03Caregivers wanted home review by nurses, government provision of medicines and care items, and support from staff who listened.
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
This was a single-centre study in Kampala with 25 caregivers selected purposively, so it may not represent stroke caregivers elsewhere. Of 38 eligible caregivers approached, three could not be contacted, seven were unwilling and three could not attend, so those not interviewed may have had different experiences. The study reported themes from interviews, not measured outcomes or tested interventions, so it cannot show that any support or service improved care. Caregivers had been providing care for between four months and 12 years, so experiences were not uniform.
Declared interests
The authors declared no competing interests. No funding source is stated in the supplied text.
The easy way to misread this
Do not read the four themes as evidence that training, home visits or supplies improved outcomes. No intervention was tested, and the study interviewed 25 caregivers at a single centre in Kampala.