BÚŘILOVÁ, Petra, Jiří BÚŘIL, Andrea POKORNÁ, Lucie HEJNÍKOVÁ, Jakub PADĚLEK, Barbora SKLENÁROVÁ, Marta ZEDNÍČKOVÁ and Irena DOLEŽALOVÁ. Mapping the burden on caregivers of people with epilepsy during the COVID-19 pandemic - pilot study. Československá psychologie. Brno: Institute of Psychologym Czech Academy of Sciences, 2024, vol. 68, No 1, p. 96-106. ISSN 0009-062X. Available from: https://dx.doi.org/10.51561/cspsych.68.1.96.
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Basic information
Original name Mapping the burden on caregivers of people with epilepsy during the COVID-19 pandemic - pilot study
Authors BÚŘILOVÁ, Petra (203 Czech Republic, belonging to the institution), Jiří BÚŘIL (203 Czech Republic, belonging to the institution), Andrea POKORNÁ (203 Czech Republic, belonging to the institution), Lucie HEJNÍKOVÁ (203 Czech Republic, belonging to the institution), Jakub PADĚLEK (203 Czech Republic, belonging to the institution), Barbora SKLENÁROVÁ (703 Slovakia, belonging to the institution), Marta ZEDNÍČKOVÁ (203 Czech Republic, belonging to the institution) and Irena DOLEŽALOVÁ (203 Czech Republic, belonging to the institution).
Edition Československá psychologie, Brno, Institute of Psychologym Czech Academy of Sciences, 2024, 0009-062X.
Other information
Original language English
Type of outcome Article in a journal
Field of Study 30304 Public and environmental health
Country of publisher Czech Republic
Confidentiality degree is not subject to a state or trade secret
WWW URL
Impact factor Impact factor: 0.400 in 2022
Organization unit Faculty of Medicine
Doi http://dx.doi.org/10.51561/cspsych.68.1.96
UT WoS 001180803800001
Keywords in English COVID-19; epilepsy; caregivers
Tags 14110127, 14110611, rivok
Tags International impact, Reviewed
Changed by Changed by: Mgr. Tereza Miškechová, učo 341652. Changed: 3/5/2024 08:59.
Abstract
Objectives. The combination of epilepsy, intellectual disability, and other psychiatric comorbidities disorders represents an extreme burden on their families and lay caregivers. The study aimed to investigate previously missing data on the burden and level of stress lay caregivers of patients with epilepsy and mental/intellectual disability and possible changes during the COVID-19 pandemic. Methods. The unicentric pilot study in lay caregivers of dispensed patients with epilepsy and concurrent mental/intellectual disability in an Epilepsy Center focused on lay caregivers burden. Caregiver burden was subjectively assessed for a period before and during the COVID-19 pandemic using the Caregiver Burden Scale. The Chi-Square Test was used for statistical evaluation at a significance level of 0.05. Results. Since the beginning of the COVID-19 pandemic, 526 patients were dispensed with the principal diagnosis of G40.* in the selected center; 46 lay caregivers were included in the study (9 males, and 37 females; the patient’s average age was 52.1 years). Due to the limitation of respite services, 25 (54.3%) caregivers reported worsening economic situations, and 31 (67.4%) reported increased stress levels. Increased caregiver burden during the COVID-19 pandemic was verified for walking (15 cases, p = 0.001), dressing, and bathing (12 cases, p = 0.010) activities. Conclusion. The obtained results confirmed the high dependency rate of patients and identified several factors (impaired mobility, falls, aggression, fear of COVID-19 disease) that increase the level of burden and stress in their caregivers due to the inability to use respite care and common tools for external assistance in care. Worsening socioeconomic situation and increased use of antidepressants by caregivers have been identified. The analysis also confirmed differences in the availability of respite care by place of residence at the national level.
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