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

Autor: Jones C; Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; UCL Great Ormond Street Institute of Child Health (ICH), 30 Guilford Street, London WC1N 1EH, UK., Atkinson P; Child Development Centre, Crawley Hospital, West Green Drive, Crawley, RH11 7DH West Sussex, UK., Memon A; Child Development Centre, Crawley Hospital, West Green Drive, Crawley, RH11 7DH West Sussex, UK., Dabydeen L; Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK., Das KB; UCL Great Ormond Street Institute of Child Health (ICH), 30 Guilford Street, London WC1N 1EH, UK; Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH, UK., Cross JH; Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; UCL Great Ormond Street Institute of Child Health (ICH), 30 Guilford Street, London WC1N 1EH, UK; Gillberg Neuropsychiatry Centre, University of Gothenburg, Kungsgatan 12, Gothenburg, Sweden., Gillberg C; Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; UCL Great Ormond Street Institute of Child Health (ICH), 30 Guilford Street, London WC1N 1EH, UK; Gillberg Neuropsychiatry Centre, University of Gothenburg, Kungsgatan 12, Gothenburg, Sweden., Neville BGR; Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; UCL Great Ormond Street Institute of Child Health (ICH), 30 Guilford Street, London WC1N 1EH, UK; Gillberg Neuropsychiatry Centre, University of Gothenburg, Kungsgatan 12, Gothenburg, Sweden., Scott RC; UCL Great Ormond Street Institute of Child Health (ICH), 30 Guilford Street, London WC1N 1EH, UK; Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH, UK; Department of Neurological Sciences, University of Vermont College of Medicine, Burlington, VT, USA., Reilly C; Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; UCL Great Ormond Street Institute of Child Health (ICH), 30 Guilford Street, London WC1N 1EH, UK. Electronic address: creilly@youngepilepsy.org.uk.
Jazyk: angličtina
Zdroj: Epilepsy & behavior : E&B [Epilepsy Behav] 2019 Jan; Vol. 90, pp. 37-44. Date of Electronic Publication: 2018 Nov 27.
DOI: 10.1016/j.yebeh.2018.10.031
Abstrakt: The 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 broached. These developmental/behavioral difficulties often had a bigger impact on child wellbeing and family functioning, but provision of therapeutic and educational supports for the difficulties was often very patchy. Parents noted that early onset epilepsy and associated neurobehavioral difficulties often have a very significant impact on family functioning including increased restrictions on family activities and increased financial burden. Parents would like informational and emotional support to extend beyond the time of epilepsy diagnosis. There is a clear need for comprehensive childhood epilepsy services to include provision for identification and management of child neurobehavioral needs and a focus on family-centered care.
(Copyright © 2018 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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