37 'A Rollercoaster of Emotions': Adults' Reflections on Epilepsy in Childhood

Abstract

Objective:

Epilepsy is one of the most common neurological disorders affecting young people globally. While up to 60% of seizures experienced during childhood will resolve, childhood epilepsy can give rise to long-lasting neuropsychological effects which extend far beyond those attributed to seizure activity. While these effects have been explored extensively using quantitative methodologies, little research has examined the lived experience of epilepsy in childhood. The aim of the present study was to capture adults' retrospective insights into the impact of epilepsy throughout their schooling years.

Participants and Methods:

Participants consisted of Irish adults between 18 and 35 years, who had their first seizure on or before the age of 16 years. Participants were recruited from epilepsy support agencies and social media, and self-referred to the study. A bespoke semi-structured interview protocol was developed in collaboration with a patient expert which explored learning experiences, relations with peers, and participants' understanding and support of epilepsy during childhood. The methodology adopted a fully qualitative approach to reflexive thematic analysis. Therefore, patterns across the data were examined whilst taking into consideration the wider social context in which the data were generated. Latent assumptions that may have underpinned participants' experiences were prioritised and data was interpreted using pre existing theories and/or concepts. Interviews were completed following the original abstract deadline, and data analysed thereafter.

Results:

Thirteen adults who experienced epilepsy during childhood in Ireland were interviewed. Three primary themes and 14 subthemes were generated from the data. The primary themes were that of (1) disenfranchised grief, (2) the need to belong and (3) meeting the child where they're at. Adults reflected that, as children, the diagnosis of epilepsy evoked feelings typically associated with bereavement or loss. Although adults described childhood epilepsy as isolating, these feelings were countered by the support of friends, family and others with epilepsy, as participants recalled finding their tribe. Participants also called for developmentally appropriate practice when dealing with children and their families, across clinical and educational settings, in order to facilitate more comprehensive understandings of epilepsy and its consequences.

Conclusions:

Retrospective qualitative research offers a unique opportunity to explore changes in perception those with childhood epilepsy over time. The present study highlights the need for developmentally appropriate practice, which takes the child's neuropsychological and developmental standing into consideration, when supporting for young people with epilepsy. Given the dearth of research in this field, further retrospective research is needed to fully comprehend the impact of epilepsy in childhood globally.