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

Artikel i vetenskaplig tidskrift
Författare C. Jones
P. Atkinson
A. Memon
L. Dabydeen
K. B. Das
J. Helen Cross
Christopher Gillberg
Brian G R Neville
R. C. Scott
C. Reilly
Publicerad i Epilepsy and Behavior
Volym 90
Sidor 37-44
ISSN 15255050 (ISSN)
Publiceringsår 2019
Publicerad vid Gillbergcentrum
Sidor 37-44
Språk en
Länkar dx.doi.org/10.1016/j.yebeh.2018.10....
Ämnesord Children, Epilepsy, Needs, Parent
Ämneskategorier Neurovetenskaper

Sammanfattning

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. © 2018 Elsevier Inc.

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