A review of caregiver distress in epilepsy in India: Current issues and future directions for research

India is home to a large number of individuals with epilepsy, with many of these patients having high care needs. Owing to limited infrastructural support and prevalent cultural attitudes, most of these individuals are cared for by their families. Such informal caregiving is often associated with poor physical and psychological outcomes, but the state of caregivers of people with epilepsy in India remains largely ignored. This review summarizes currently available research on distress among caregivers for people with epilepsy in India. A review of 20 studies published till July 2020 revealed significant burden in this population. Caregiving was reported to negatively impact one's physical and mental health, overall family functioning, and financial status. A range of seizure-related variables were found to be associated with greater perceived burden, with the impact of patient characteristics and psychosocial factors on burden being relatively unexplored. Much of the research identified was characterized by methodological limitations such as small sample sizes, exclusion of patients with comorbidities, and a failure to distinguish between carers of adult and pediatric populations, thus overshadowing the specific needs of each group. There is a need for larger, well-designed studies that focus on culture-specific psychological and social factors in the Indian context of caregiving for people with epilepsy. (C) 2021 Elsevier Inc. All rights reserved.