| Autor: |
Salom R; Centro de Investigación Nebrija en Cognición (CINC), Facultad de Lenguas y Educación, Universidad Nebrija, 28248 Madrid, Spain.; Asociación ApoyoDravet, 20009 San Sebastián, 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. |
| Abstrakt: |
This study addresses the social relevance of low-prevalence childhood diseases and reports the process of generation and validation of a tool to assess the social impact on the direct family environment and the social context of reference. The aim of the process of construction and validation of this instrument is to provide the field with a tool with the capacity to shed light on the social consequences of suffering from a low-prevalence disease, specifically those comorbid with treatment-resistant epileptic seizures of childhood origin. The instrument here presented and called CRESIA (acronym derived from Childhood Rare Epilepsy Social Impact Assessment) provides valuable information on six specific areas framing health, economic, psychological, social, and child-related stressors, as well as family. CRESIA represents a valid and reliable instrument for family members or primary caregivers of children and adolescents with childhood rare epilepsy. |
