Sobrecarga en cuidadores chilenos de pacientes pediátricos con diagnóstico de epilepsia

Tihare Pía Belén Burgos Oses; Francisco Marquez Ortega; Patricio Oliva Moresco

doi:10.5354/2452-5839.2023.72291

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Burden among chilean caregivers of pediatric patients diagnosed with epilepsy

Authors

Tihare Pía Belén Burgos Oses Universidad del Bio-Bío https://orcid.org/0009-0000-6456-3492
Francisco Marquez Ortega Universidad del Bío-Bío https://orcid.org/0009-0000-1100-8954
Patricio Oliva Moresco Universidad del Bio-Bío https://orcid.org/0000-0002-4732-4227

Vol. 5 No. 2 (2023)

https://doi.org/10.5354/2452-5839.2023.72291

Abstract

Introduction: Informal caregivers of pediatric patients with epilepsy confront a myriad of challenges that may adversely affect their health, with one prominent challenge being the magnitude of the burden they experience. Objective: This study aims to ascertain the level of burden, sociodemographic characteristics, and caregiving attributes among informal caregivers of pediatric patients diagnosed with epilepsy. Methodology: A descriptive, quantitative, and cross-sectional study was conducted, involving the participation of 89 caregivers of pediatric patients diagnosed with epilepsy in 2021. A survey was administered to gather sociodemographic and caregiving-related information, along with the application of the Zarit Scale to quantify the caregiver burden. Descriptive statistics were employed to present the findings. Results: Among the caregivers of pediatric patients with epilepsy, 97% were female. The majority of caregivers had a low income, dedicated more than 8 hours to caregiving responsibilities, and lacked consistent support in their caregiving role. Six out of ten caregivers reported experiencing some degree of burden. Conclusions: Caregivers of pediatric patients diagnosed with epilepsy encounter varying degrees of burden, ranging from mild to intense. The prevalent caregiver profile is characterized by females, often single, with incomes below the Chilean minimum wage, high rates of absenteeism, and insufficient support in their caregiving responsibilities. Gender disparities in caregiving are evident, emphasizing the urgent need to reform current public policies on caregiving, with a particular focus on bolstering support for informal caregivers.

Keywords:

Caregiver Burden, Child, Epilepsy, Caregivers, Child Care

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Burgos Oses, T. P. B., Marquez Ortega, F., & Oliva Moresco, P. (2023). Burden among chilean caregivers of pediatric patients diagnosed with epilepsy. Revista Chilena De Enfermería, 5(2), 57–68. https://doi.org/10.5354/2452-5839.2023.72291

Burden among chilean caregivers of pediatric patients diagnosed with epilepsy

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