Experiences and needs of parents of young children with active epilepsy: A population-based study

Publication date: January 2019Source: Epilepsy & Behavior, Volume 90Author(s): Chloe Jones, Patricia Atkinson, Ayesha Memon, Lyvia Dabydeen, Krishna B. Das, J. Helen Cross, Christopher Gillberg, Brian G.R. Neville, Rod C. Scott, Colin ReillyAbstractThe aim of the study was to gain a comprehensive understanding of the experiences and needs of parents of young children with epilepsy from a total population sample. The parents (mothers (n = 38), fathers (n = 9)) of 40/53 (75% of total population) young children (1–7 years; 23 males, 17 females) with ‘active’ epilepsy (had a seizure in the last year or taking Anti-epileptic drugs (AEDs)) were interviewed either in person or over the telephone using a semistructured interview schedule. The families were resident in the south of the UK. The interviews were audio-recorded, transcribed, and coded using thematic analysis. Thematic analysis revealed six main themes: diagnostic journey, parental perception of epilepsy management, awareness and impact of associated neurobehavioral difficulties, inconsistent availability of therapeutic and educational supports, impact on family functioning, and need for parental support. Parents reported often having difficulty accessing a professional knowledgeable about epilepsy. While parents were generally satisfied with the initial information they received about seizures and their management, they reported that the association between epilepsy and neurobehavioral issues was often not...
Source: Epilepsy and Behavior - Category: Neurology Source Type: research