Dados do Trabalho

Título

IDENTIFYING FACTORS RELATED TO THE CAREGIVER BURDEN OF ADULTS WITH EPILEPSY IN A BRAZILIAN TERTIARY CENTER

Introdução

The persistent burden may lead to stress, and enduring change in the caregiver's sense of well-being predisposes to burnout. It is well-known that chronic illness, such as epilepsy, affects people who suffer from it and places a significant burden on caregivers. Despite the relevance of socio-economic background in the burden of persons with epilepsy (PWE), there is a dearth of knowledge about this topic in low-resource settings.

Objetivo

We aimed to (1) assess the burden in caregivers of adults with epilepsy in a tertiary care center in Brazil and (2) possible factors associated with it.

Método

In this cross-sectional study, we evaluated the level of burden with the Zarit Caregiver Burden Inventory (ZBI). A comprehensive questionnaire was developed to assess the demographics of patients and caregivers. Epilepsy-related factors were obtained by interview and file review. Depressive, anxiety symptoms, and sleep quality were evaluated by Beck Depression Inventory (BDI-II), State and Trait Anxiety Inventory (STAI), and Pittsburgh Sleep Quality Index (PSQI). Stigma was assessed by the Stigma Scale of Epilepsy (SSE).

Resultados

The caregiver's burden was mild to moderate in our sample. Considering the correlation between PWE' factors and ZBI, a higher score in ZBI had a moderate correlation with lower age of seizure onset, few years of formal education, more need for assistance in daily life, and higher disability level. There was a weak correlation between polytherapy, drug-resistant epilepsy, lower personal income, psychiatric conditions, and higher ZBI scores.
Regarding the correlation between caregivers' factors and ZBI: a higher BDI-II, STAI-T, and PSQI scores were moderately correlated with higher ZBI scores. There was a weak correlation between lower personal income, lower years of formal education, marital status, living with a PWE, STAI-S score, and higher scores on ZBI.

Conclusões

The factors most strongly correlated to the caregiver burden were age-onset of epilepsy, PWE years of schooling, needs for assistance in daily life, disabilities, and caregiver's bad-quality of sleep and depressive and anxiety symptoms. In clinical practice, caregivers in PWE deserve special attention regarding mental health and other health aspects. Clinical guidelines on epilepsy should further emphasize caregiver quality of life and mental health as crucial measures in assessing and treating epilepsy.