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Factors associated with caregiver burden of adults with epilepsy in a middle-income country

  • Author Footnotes
    1 These authors equally contributed to this manuscript.
    Mariana C Oliveira
    Footnotes
    1 These authors equally contributed to this manuscript.
    Affiliations
    Faculty of Medicine, University of Sao Paulo (FMUSP), Sao Paulo, Brazil
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  • Author Footnotes
    1 These authors equally contributed to this manuscript.
    Ellen Marise Lima
    Footnotes
    1 These authors equally contributed to this manuscript.
    Affiliations
    Department of Psychiatry, Clinics Hospital, University of Sao Paulo Medical School (HCFMUSP), Sao Paulo, Brazil
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  • Maria Luisa Nobre de Paiva
    Correspondence
    Corresponding author at: Rua Jesuino Arruda, 901, apt. 51 04532-082, Sao Paulo SP Brazil.
    Affiliations
    Department of Psychiatry, Clinics Hospital, University of Sao Paulo Medical School (HCFMUSP), Sao Paulo, Brazil
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  • Kette Dualibi Ramos Valente
    Correspondence
    Corresponding author at: Rua Jesuino Arruda, 901, apt. 51 04532-082, Sao Paulo SP Brazil.
    Affiliations
    Department of Psychiatry, Clinics Hospital, University of Sao Paulo Medical School (HCFMUSP), Sao Paulo, Brazil
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  • Author Footnotes
    1 These authors equally contributed to this manuscript.

      Highlights

      • Caregivers of adults with epilepsy have mild to moderate burden.
      • Sociodemographic data (lower educational attainment, unemployment, economic dependence, lower monthly income values) affected the level of burden.
      • Earlier age onset, polytherapy, and drug-resistance were correlated with burden.
      • Presence of psychiatric comorbidities and patients's disability were associated with high caregiver's burden.

      Abstract

      Purpose

      Despite the relevance of socio-economic background in burden of caregivers of persons with epilepsy (PWE), there is a dearth of knowledge about this topic in low-resource settings. Here we attempt to identify the extent of the burden in caregivers of adults with epilepsy in a middle-income country and the factors associated with it.

      Methods

      In this cross-sectional study, we evaluated the level of burden with the Zarit Caregiver Burden Inventory. 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, State and Trait Anxiety Inventory, and Pittsburgh Sleep Quality Index. Stigma was evaluated by the Stigma Scale of Epilepsy.

      Results

      The caregiver's burden was mild to moderate in our sample. The factors most strongly associated with the higher 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 higher depressive and anxiety symptoms.

      Conclusion

      Caregivers of PWE deserve special attention regarding mental health and other health aspects, such as sleep quality.

      Keywords

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