Experience during COVID-19 lockdown and self-managing strategies among caregivers of children with epilepsy: A study from low middle income country

Wanigasinghe, Jithangi; Jayawickrama, Ashan; Hewawitharana, Gemunu; Munasinghe, Jagath; Weeraratne, Chathurika T.; Ratnayake, Pyara; Wijesekara, Dimuthu Saraji; Fernando, Sanjaya; Rupasinghe, Priyanka

doi:10.1016/j.seizure.2020.12.001

Cited by 19 publications

(16 citation statements)

References 24 publications

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“…Regarding epileptic conditions, researchers [ 18 , 19 ] considered an increase in behavioral problems and indicated that the pandemic and associated restrictions have had a negative impact on young people with epilepsy. In a study by Wanigasinghe et al [ 20 ], it emerged that parents of children with epilepsy who adopted healthy management strategies during the COVID-19 lockdown did not experience high levels of stress.…”

Section: Introductionmentioning

confidence: 99%

Impact of COVID-19 Pandemic on Children and Adolescents with Neuropsychiatric Disorders: Emotional/Behavioral Symptoms and Parental Stress

Operto

Coppola

Vivenzio

et al. 2022

IJERPH

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The objective of our study was to evaluate the impact of the COVID-19 pandemic on the emotional and behavioral symptoms in minors with neuropsychiatric disorders and on parental stress through a standardized neuropsychological assessment, comparing the data collected before the pandemic with those collected during the lock-down. Another goal of our study was to analyze the relationship between parental stress and behavioral/emotional symptoms in children. Our study was conducted on 383 families of patients who had already been referred at the Child Neuropsychiatry Unit of the University Hospital of Salerno for different neuropsychiatric conditions. All the parents completed two neuropsychological standardized questionnaires for the assessment of parental stress (PSI—Parenting Stress Index-Short Form) and the emotional/behavioral problems of their children (Child Behaviour CheckList). The data collected during the pandemic were compared with those collected from questionnaires administered during the six months preceding the pandemic, as is our usual clinical practice. The comparison between the mean scores of PSI and CBCL before and after the pandemic showed a statistically significant increase in all subscales analyzed in the total sample. The correlation analysis showed significant positive relationship between the subscale Total Stress of PSI and the subscales Total Problems and Internalizing Problems of CBCL. Our study suggested that the COVID-19 pandemic and the corresponding measures adopted led to an increase in internalizing and externalizing symptoms in children and adolescents with neuropsychiatric disorder. Similarly, parental stress increased during COVID-19 and ahigher level of stress in parents can be related to the internalizing symptoms of their children.

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Section: Introductionmentioning

confidence: 99%

Impact of COVID-19 Pandemic on Children and Adolescents with Neuropsychiatric Disorders: Emotional/Behavioral Symptoms and Parental Stress

Operto

Coppola

Vivenzio

et al. 2022

IJERPH

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“…These patients were older, had more frequently severe epilepsy, difficulties with prescription renewals and ASM dispensing, especially in the Brazilian public healthcare system. Seizure worsening was reported in other studies during the pandemic, which ranged from 4-35% of the surveyed population [11,20,23,[25][26][27]29,[30][31][32]. Physical and psychological concerns including beliefs of higher risk of having COVID-19, with new onset use of antidepressants and financial problems were also related to seizure worsening.…”

Section: Discussionmentioning

confidence: 60%

COVID-19 and epilepsy: How are people with epilepsy in Brazil?

Guilhoto

Mosini

Susemihl³

et al. 2021

Epilepsy & Behavior

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During COVID-19 pandemic the global population is facing an important psychosocial distress. The aim of this study was to evaluate how people with epilepsy (PWE) in Brazil is dealing with the pandemic, in relation to seizure frequency, access to antiseizure medicines (ASM), medical follow-up, and well-being. Methods: An online questionnaire survey among PWE (group 1) and caregivers (group 2) was applied in the social networks of the Brazilian Association of Epilepsy, the official Brazilian chapter of the International Bureau for Epilepsy. The questionnaire was composed of 46 generic questions in four areas, namely, demographics and baseline clinical data as well as epilepsy and quality-of-life impact by COVID-19 pandemic based on the domains of the abbreviated World Health Organization Quality of Life (WHOQOL-BREF) instrument. Results: The questionnaire was answered by 464 participants including 380 (81.9%) PWE (78.7% female; age 34.3 yrs.; ±9.76) and 84 (18.1%) caregivers (patients' age 14.1 yrs.; ±10.30). During the COVID-19 pandemic, 36.8% of PWE and 36.4% of caregivers reported difficulties in accessing the epilepsy healthcare provider, and visits occurred normally only in 29.7% of PWE and in 34.5% of the caregiveŕs group. Telehealth was not provided for 66.6% of group 1 and for 58.5% of group 2. Lack of availability of ASM was reported by 21.9% of PWE and 28.0% of caregivers in public dispensing units and by 19.2% and 17.8%, respectively, in private pharmacies. Increase in seizures during pandemic was mentioned by 26.3% and 27.9% of groups 1 and 2, respectively. Patients who had increase in seizure frequency had more frequently reported problems with treatment and in quality-of-life concepts. Fear of having a more severe COVID-19 presentation because of epilepsy was reported by 74.5% of PWE and by 89.8% of caregivers. Dissatisfaction with current health status was reported by 36.7% and 38.1% in groups 1 and 2, respectively, and that the support from others has decreased (56.1% and 66.1%, in groups 1 and 2) during the pandemic. The factors with higher Odds Ratio of increase in seizure frequency during pandemic were age >41 yrs., treatment in public healthcare system, drug-resistant epilepsy, adversities in getting ASM in public dispensing units, difficulties with prescription renewals, current financial problems and belief that epilepsy or ASM are risk factors for contracting COVID-19. Conclusion: During COVID-19 pandemic in Brazil, PWE and caregivers reported increase in seizures in one-fourth of the patients and several difficulties, namely problems in accessing the healthcare system including ASM dispensation, telehealth, and fear of having a more severe COVID-19 because of epilepsy. There were also physical, psychological, and social concerns which affected quality-of-life-related aspects in this population. These facts may increase treatment gap in epilepsy in Brazil as well in other developing countries.

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“…The full-text screening of these studies led to the exclusion of 76 studies that did not meet the inclusion criteria. A total of 24 studies with 6,492 patients/caregivers fulfilled the eligibility criteria for inclusion in the meta-analysis ( 10 - 33 ). Table 1 summarizes the findings of the included studies.…”

Section: Resultsunclassified

Seizure Control in Patients with Epilepsy during the COVID-19 Pandemic: A Systematic Review and Meta-analysis

Gajera

Kubota

2022

Intern. Med.

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total of 24 studies with 6,492 patients/caregivers were included in the meta-analysis. The pooled proportion of seizure worsening was 18.5% (95% CI: 13.9-23.6; I 2 =96%; p<0.01). The pooled proportion of seizure worsening in the subgroup analysis was 18.9% (95% CI: 13.5-25.0; I 2 =96%; p<0.01). Conclusion Although the heterogeneity was high, our results showed a relatively high incidence of seizure worsening during the COVID-19 pandemic. During the COVID-19 pandemic, physicians should be aware of the likelihood of worsening seizures in patients with epilepsy.

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Experience during COVID-19 lockdown and self-managing strategies among caregivers of children with epilepsy: A study from low middle income country

Cited by 19 publications

References 24 publications

Impact of COVID-19 Pandemic on Children and Adolescents with Neuropsychiatric Disorders: Emotional/Behavioral Symptoms and Parental Stress

Impact of COVID-19 Pandemic on Children and Adolescents with Neuropsychiatric Disorders: Emotional/Behavioral Symptoms and Parental Stress

COVID-19 and epilepsy: How are people with epilepsy in Brazil?

Seizure Control in Patients with Epilepsy during the COVID-19 Pandemic: A Systematic Review and Meta-analysis

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