Lived experience of epilepsy from the perspective of children in Taiwan

Abstract

Public health and school nurses can apply our findings to educate school teachers and parents about epilepsy and encourage activities that allow children with and without epilepsy to interact, thus improving peer relationships and reducing stigmatisation. Children with and without epilepsy would also benefit from an age-appropriate education manual that includes causes of epilepsy, treatment, dealing with seizures and psychological and social adaptation.

Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies

“…Participants were "afraid to die" 16 and this was expressed particularly among adolescents who lived alone or had a limited support network. However, some participants indicated that they would prefer to die during a seizure than live a "life ruined by" 38 brain damage.…”

“…16 This perceived intellectual inferiority was discouraging, and some participants believed that their "schooling had gone to waste." 12 Participants also missed school due to hospital admissions or doctor appointments.…”

“…I want to be a normal person. 16 I am afraid of holding my own children in my arms in case I have a seizure and let my child fall many times when I was holding. 13 It could affect different jobs that I do because I want to go into nursing and I have to be careful that shift work doesn't affect me because lack of sleep can trigger mine as well.…”

“…They "didn't want to have any more seizures, not at school or at home…afraid someone will find out what happens with [their] illness." 16 In school, participants also believed their "slowness" revealed their disease to their classmates.…”

“…11 They reported prejudice, exclusion, and bullying from friends, neighbors, and employers. Some avoided using the "epilepsy word" 11 at job interviews because they would "fail to get the job, " 45 or even among their "good friends" 16 because it "repels people." 11 Many younger participants experienced "shame, " 11 isolation, and grief daily.…”