Examining perceived stigma of children with newly-diagnosed epilepsy and their caregivers over a two-year period

- Children with epilepsy experience a decrease in epilepsy-related stigma over time.
- Children with seizures and those without seizures report comparable levels of stigma.
- Children and caregivers have poor agreement on child epilepsy-related stigma.

The purpose of this study was to examine the following: 1) the course of perceived epilepsy-related stigma among children newly diagnosed with epilepsy (n = 39) and their caregivers (n = 97) over a two-year period, 2) the influence of seizure absence/presence on children and caregivers' perception of epilepsy-related stigma, and 3) the congruence of child and caregiver perception of child epilepsy-related stigma. Participants completed a measure of perceived epilepsy-related stigma at three time points, and seizure status was collected at the final time point. Results indicated that both caregivers (t1,76 = − 2.57, p < .01) and children with epilepsy (t1,29 = − 3.37, p < .01) reported decreasing epilepsy-related stigma from diagnosis to two years postdiagnosis. No significant differences were found in caregiver and child reports of perceived stigma for children experiencing seizures compared with children who have been seizure-free for the past year. Results revealed poor caregiver-child agreement of perceived epilepsy-related stigma at all three time points. These data suggest that while children with epilepsy initially perceive epilepsy-related stigma at diagnosis, their perception of stigma decreases over time. Having a better understanding of the course of epilepsy-related stigma provides clinicians with information regarding critical times to support families with stigma reduction interventions.