Childhood epilepsy has life-long effects that extend beyond the disruption attributed to seizure activity [1,2]. These effects have been investigated using proxy reports typically from parents [3], quantitative assessments of quality of life [4–6] and qualitative methods eliciting children’s self-reported lived experience [7–14]. These studies evidence the negative impact epilepsy has on children’s independence, school performance and relationships with peers. Retrospective qualitative research has captured the experiences of adults with epilepsy coming to terms with their diagnosis, some during childhood [15] but, to our knowledge, no study has offered adults the opportunity to reflect on their broader experiences of childhood epilepsy, nor the opportunity to share their feelings and behaviours, which may have been difficult to express or disentangle in real time [16,17].
ABR