Parents’ experiences of caring for a child with epilepsy : A systematic review of qualitative research and thematic synthesis

Breed, Amy and Hanley, Bridget and Walton, Candice and Murray, Craig (2025) Parents’ experiences of caring for a child with epilepsy : A systematic review of qualitative research and thematic synthesis. Seizure - European Journal of Epilepsy: SEIZURE-D-. ISSN 1059-1311 (In Press)

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Abstract

Purpose: Previous research highlights the impact of chronic health conditions on parents of children with health conditions, including epilepsy, however thus far there has not been a qualitative synthesis of the parental experience of caring for a child with epilepsy. This review aims to synthesise the available literature to gain greater insight into how parents experience their child’s condition and to identify gaps in current healthcare provision. Methods: A systematic literature search of five electronic databases identified 14 papers which included data regarding the parental experience of caring for a child with epilepsy. A thematic analysis method was used to synthesise these papers. Results: Four main themes were identified: 1) prolonged uncertainty, 2) a 24-7 condition, 3) a multitude of losses and 4) facing societal stigma. Conclusions: The synthesis identified that parents face a range of experiences and emotions whilst caring for their child with epilepsy. Recommendations for how healthcare and third sector services can support parents further to help them cope with their experience are provided.