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dc.contributor.authorSalom, Rafael
dc.contributor.authorAras, Luis Miguel
dc.contributor.authorPiñero, Jessica
dc.contributor.authorDunabeitia Landaburu, Jon Andoni
dc.date.accessioned2023-11-14T08:31:29Z
dc.date.available2023-11-14T08:31:29Z
dc.date.issued2023-08-25
dc.description.abstractThis study examined the psychosocial impact on parents of children affected by Dravet Syndrome (DS), a rare drug-resistant developmental encephalopathic epileptic syndrome which affects children at an early age and that involves severe cognitive, behavioral, and motor impairments. DS has a major negative impact on caregivers, mainly on their physical and mental health, and on their social relationships and economic resources. Similarly, it has been suggested that the quality of life of caregivers and children with DS is lower compared to the general population, especially because of the severe and frequent seizures suffered by the child, leaving caregivers with heavy burdens. The main aim of the current study was to assess in detail the psychosocial impact that having a child with DS represents for their parents or caregivers. To this end, a standardized assessment tool was used, and the results were compared to those of a control group. The results highlighted critical differences in most of the areas explored, revealing a marked difference between parents caring of children with DS and parents of normotypically developing children in the psychosocial wellness. This study provides important qualitative data to help us understand and identify the complexity of DS.en_US
dc.identifier.citationSalom, Aras, Piñero, Dunabeitia Landaburu. The psychosocial impact of caring for children with Dravet Syndrome. Epilepsy and Behavior Reports (EBR). 2023;24en_US
dc.identifier.cristinIDFRIDAID 2189271
dc.identifier.doi10.1016/j.ebr.2023.100619
dc.identifier.issn2589-9864
dc.identifier.urihttps://hdl.handle.net/10037/31747
dc.language.isoengen_US
dc.publisherElsevieren_US
dc.relation.journalEpilepsy and Behavior Reports (EBR)
dc.rights.accessRightsopenAccessen_US
dc.rights.holderCopyright 2023 The Author(s)en_US
dc.rights.urihttps://creativecommons.org/licenses/by/4.0en_US
dc.rightsAttribution 4.0 International (CC BY 4.0)en_US
dc.titleThe psychosocial impact of caring for children with Dravet Syndromeen_US
dc.type.versionpublishedVersionen_US
dc.typeJournal articleen_US
dc.typeTidsskriftartikkelen_US
dc.typePeer revieweden_US


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Attribution 4.0 International (CC BY 4.0)
Except where otherwise noted, this item's license is described as Attribution 4.0 International (CC BY 4.0)