Quality of life in caregivers of a child with a developmental and epileptic encephalopathy.
Eden G Robertson, Lauren Kelada, Stephanie Best and 4 others
PMID 37421242WHAT IT FOUND
Most caregivers of children with developmental and epileptic encephalopathy reported needs in valued activities and self-care.
Their quality-of-life scores were linked to how threatening they saw the illness, not health literacy or activation.
Key findings
01Caregiver quality-of-life scores varied from 0 (high need) to 1 (ideal state), with a median of 0.548.
02Most caregivers reported some or high-level needs in valued activities (56/72, 77.8%) and looking after themselves (39/72, 54.2%).
03Total quality-of-life scores were associated with cognitive and emotional illness perceptions, but not with coherence, health literacy, or caregiver activation.
STILL TO COME
How it was doneWhat they found
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What it does not show
This was baseline survey data from a pilot evaluation, not a test of GenE Compass. Caregivers had to speak or read English and were recruited from two Sydney children's hospitals, so the results may not apply to other families. Only 68 of 168 invited families completed the questionnaire initially; four more joined later, and reasons for non-participation were not collected. The sample was mostly highly educated mothers from metropolitan areas, and many had high health literacy and activation, which limits generalizability. The sample was too small to examine differences by DEE type, severity, or having more than one child with DEE. The health literacy tool was short and mainly identifies adequate literacy, which lowers sensitivity. The paper reports survey associations, not effects of an intervention.
Declared interests
The paper states funding by the National Health and Medical Research Council.
The easy way to misread this
Do not conclude that GenE Compass improved caregiver quality of life. This paper reports baseline survey responses only, not outcomes after the service.