Epilepsy and developmental disorders: Next generation sequencing in the clinic

JD Symonds, A McTague - European Journal of Paediatric Neurology, 2020 - Elsevier
Abstract Background The advent of Next Generation Sequencing (NGS) has led to a
redefining of the genetic landscape of the epilepsies. Hundreds of single gene epilepsies …

Parents'/caregivers' fears and concerns about their child's epilepsy: A scoping review

B Carter, G Cook, L Bray, A Collingwood, H Saron… - Plos one, 2022 - journals.plos.org
Background Childhood epilepsy is a serious and common neurological condition and can
have life-long consequences and its impact can pervade all aspects of family life. Whilst the …

Investigation of anxiety, depression, sleep, and family function in caregivers of children with epilepsy

M Zhang, H Zhang, S Hu, M Zhang, Y Fang… - Frontiers in …, 2021 - frontiersin.org
Objective: Epilepsy is a chronic disease that places a heavy burden on caregivers. Previous
studies have shown that caregivers of epilepsy patients often experience anxiety and …

The information needs of parents of children with early-onset epilepsy: a systematic review

SM Nevin, CE Wakefield, CE Schilstra, BC McGill… - Epilepsy & Behavior, 2020 - Elsevier
Objective Early-onset epilepsy has broad physical and psychosocial impacts, and parents
have a wide variety of information needs. This systematic review set out to assess 1) …

Epilepsy in schools: Views on educational and therapeutic provision, understanding of epilepsy and seizure management

EC Johnson, P Atkinson, A Muggeridge, JH Cross… - Epilepsy & Behavior, 2021 - Elsevier
Objective To gain an understanding of the views of young people with epilepsy, their parents
and school staff regarding educational and therapeutic provision, understanding of epilepsy …

Diagnosis, epilepsy treatment and supports for neurodevelopment in children with Dravet Syndrome: Caregiver reported experiences and needs

JS Jansson, B Bjurulf, MD Blom, T Hallböök, C Reilly - Epilepsy & Behavior, 2024 - Elsevier
Background Dravet syndrome is a rare infantile onset epilepsy syndrome encompassing
treatment resistant epilepsy and neurodevelopmental difficulties. There is limited data …

'In the best case seizure-free'–Parental hopes and worries before and satisfaction after their child's epilepsy surgery

I Sylvén, I Olsson, T Hallböök, B Rydenhag, C Reilly - Epilepsy & Behavior, 2020 - Elsevier
Objective The objective of this study was to gain a better understanding of parental hopes
and worries before and subsequent experiences two years after their child had undergone …

Challenges of patients with epilepsy and measures for improving epilepsy care in western China: a qualitative study

XP Ma, YP Li, R Yang, D Zhou, JM Li - Epilepsy Research, 2021 - Elsevier
Objective The aim of this qualitative study was to explore the challenges that patients with
epilepsy (PWEs) face and the opportunities or areas where changes in nursing care may …

[HTML][HTML] Caregivers' experiences in the management of children with epilepsy: a systematic synthesis of qualitative studies

L Yang, J Ji, Q Lu, P Tang, Y Jiang, H Yang, W Tang - Seizure, 2023 - Elsevier
Objective Childhood is the prime age for epilepsy onset. Adults in the family of affected
children often become caregivers. Providing care for children with epilepsy may affect the …

Development and evaluation of the Castle trial online sleep intervention for parents of children with epilepsy

L Wiggs, G Cook, H Hiscock, DK Pal… - Frontiers in …, 2021 - frontiersin.org
Introduction: Many of the sleep problems experienced by children with epilepsy (CWE) have
the same behavioural basis as common sleep problems seen in typically developing (TD) …