‘A rollercoaster of emotions’: Reflections on growing up with epilepsy in Ireland

Abstract

PurposeChildhood epilepsy can have lasting effects which extend beyond those attributed to seizures. Previous studies have explored the lived experience of childhood epilepsy, but to our knowledge, no study has afforded adults with a diagnosis of childhood epilepsy the opportunity to reflect on their experiences. In comparison with children, adult respondents have the benefit of ample time having lapsed in order to process their experiences and have greater linguistic competencies. The aim of this study was to retrospectively capture, via interview, adults' perceptions of the impact of epilepsy during their childhood. MethodsA semi-structured interview schedule was developed in collaboration with patient experts to investigate participants' experiences of growing up with epilepsy in Ireland. Thirteen Irish adults aged between 18 and 35 years, who had their first seizure before the age of 16, were interviewed. Data was analysed using Big Q reflective thematic analysis. ResultsThree main themes and 14 subthemes were generated from the data. The main themes comprised (1) disenfranchised grief, (2) need to belong and (3) walking in my shoes. ConclusionAll three themes demonstrated a common need for patient care that is cognisant of the child's developmental stage and psychosocial health, and the myriad of factors that contribute to both. Information, resources and clinical engagement with children with epilepsy require the input of patients with current or past experience of childhood epilepsy to guide development. A co-production approach is needed to address some of the disenfranchised and isolating experiences recollected by our participants.