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Caregiver burden of adult patients with epilepsy in a tertiary care center in Brazil

Grant number: 19/04956-8
Support type:Scholarships in Brazil - Scientific Initiation
Effective date (Start): June 01, 2019
Effective date (End): July 31, 2020
Field of knowledge:Health Sciences - Medicine - Psychiatry
Principal researcher:Kette Dualibi Ramos Valente
Grantee:Mariana Carvalho de Oliveira
Home Institution: Instituto de Psiquiatria Doutor Antonio Carlos Pacheco e Silva (IPq). Hospital das Clínicas da Faculdade de Medicina da USP (HCFMUSP). Secretaria da Saúde (São Paulo - Estado). São Paulo , SP, Brazil

Abstract

Epilepsy is a chronic brain disease caused by several etiologies, characterized by the recurrence of unprovoked crises and its neurobiological, cognitive, psychological, and social consequences. It is estimated that its worldwide prevalence is around 0,5-1,5%. Epilepsy causes a significant burden on patients, relatives, and caregivers. There is growing knowledge about this disease impact on relatives and caregivers of children with epilepsy, in particular on those who are drug resistant. However, there are only two studies about the burden in caregivers of adults patients with epilepsy. Only one evaluated determinants of major burden aspects, while the other demonstrated its relation with stigma. This study's primary goal is to determine the burden of caregivers of adults with epilepsy. We, also, aim to study the association of this burden with anxiety, depression, sleep quality, caregivers' stigma related to the disease and severity of epilepsy. Caregivers will be interviewed with the following questionnaires: Zarit Burden Interview, Stait and Trait Anxiety Inventory, Beck Depression Inventory, Pittsburgh Sleep Quality Index and Stigma Epilepsy Scale. This project is associated with two other Projects: "Sleep aspects in patients with drug-resistant epilepsy and their impact on quality of life and social adjustment" (Alváro Pentagna, Master's Degree) and "The impact of cognitive rehabilitation in executive functions and social adjustment of patients with Juvenile Myoclonic Epilepsy" (Maria Luisa Paiva, Master's Degree).

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