ABSTRACT
PURPOSE: To describe the impact of COVID-19 pandemic on caregivers of persons with epilepsy. METHODS: This systematic literature review was conducted according to the Preferred Reporting in Systematic Review & Meta-Analysis (PRISMA) guidelines. The PECO (Patient, Exposure, Comparison, Outcome) framework criteria were as follows: caregivers of persons with epilepsy; exposed to the COVID-19 pandemic; and outcomes, evaluated under 4 domains- Difficulties faced by caregivers during the COVID-19 pandemic, physical, emotional and behavioural impacts, diagnosed health conditions, and impact on clinical management and follow-up). Literature was searched in PubMed, Google Scholar, CINAHL, Medline, and Cochrane Library Databases. Appraisal tool for Cross-Sectional Studies (AXIS) was used to assess the methodological quality of studies. RESULTS: Data were extracted from 21 eligible articles from 199 and included 5810 caregivers of persons with epilepsy. In the domain of difficulties faced by caregivers during the COVID-19 pandemic, the most significant effect was related to difficulties in obtaining and affording anti-seizure medications. Appointment cancellations also affected most caregivers (4/7 studies). Seizure exacerbation was not a major concern to them. Anxiety, reported by most caregivers in 5/7 studies, depression in 2/5 studies, stress by majority of caregivers in 4/6 studies, and increased substance use in one study were other significant bad experiences. Social isolation increased for the majority in 2/7 studies. Financial difficulties were described in two studies. Under caregivers' health conditions, there was only one study to review. Emotional issues affected majority in 3/7 studies, physical issues in 2/4 studies, and worsened behavior in one. With regards to clinical management and follow-up, most caregivers (4/5 studies) adopted self-management strategies, but 3/8 studies reported difficulties in accessing medications and healthcare services. Additionally, 4/8 studies highlighted communication and coordination difficulties with healthcare providers. Caregivers' attitude towards telemedicine varied across studies. SIGNIFICANCE: COVID-19 pandemic had a profound impact on caregivers of persons with epilepsy, affecting their emotional, physical, and behavioral health. It limited their access to healthcare and impacted financial stability. Caregivers of persons with epilepsy need comprehensive support and resources during crisis situations.
