The psychosocial impact of caring for children with Dravet Syndrome.

Autor:	Salom R; Centro de Investigación Nebrija en Cognición (CINC), Facultad de Lenguas y Educación, Universidad Nebrija, 28248 Madrid, Spain., Aras LM; Asociación ApoyoDravet, 20009 San Sebastián, Spain.; Servicio Navarro de Salud-Osasunbidea, 31010 Navarra, Spain., Piñero J; Centro de Investigación Nebrija en Cognición (CINC), Facultad de Lenguas y Educación, Universidad Nebrija, 28248 Madrid, Spain.; Fundación Salud Infantil, 03201 Elche, Spain., Duñabeitia JA; Centro de Investigación Nebrija en Cognición (CINC), Facultad de Lenguas y Educación, Universidad Nebrija, 28248 Madrid, Spain.; AcqVA Aurora Center, Department of Languages and Culture, UiT The Arctic University of Norway, 9019 Tromsø, Norway.
Jazyk:	angličtina
Zdroj:	Epilepsy & behavior reports [Epilepsy Behav Rep] 2023 Aug 25; Vol. 24, pp. 100619. Date of Electronic Publication: 2023 Aug 25 (Print Publication: 2023).
DOI:	10.1016/j.ebr.2023.100619
Abstrakt:	This 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. Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. (© 2023 The Author(s).)
Databáze:	MEDLINE
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