Perceived Burden of Care and Its Determinants: A Study Among Principal Caregivers of Refractory Epileptic Patients in a Tertiary Care Hospital of Kolkata

Background: Refractory epilepsy can cause premature mortality and residual disability that lead to burden on the principal caregivers in the long run.Despite the relevance of socioeconomic background, the burden of principal caregivers for refractory epileptic patients, there is a dearth of knowledge about this topic in low-resource settings.Caregiver distress and burden indicate prolonged consequences of poor physical and emotional health.This study was conducted to estimate and assess the burden of principal caregivers of refractory epileptic patients and to evaluate the factors influencing them.Materials and methods: A descriptive, observational cross-sectional study with a mixed methods approach was conducted among 110 principal caregivers of refractory epileptic patients attending the epilepsy clinic at neuromedicine outpatient department (OPD) in IPGME&R, Kolkata during January-February 2023.After obtaining informed consent, the quantitative data were collected using a predesigned, pretested questionnaire comprising the sociodemographic details of the caregivers and the Zarit Caregiver Burden Scale.A focus group discussion (FGD) was conducted with six principal caregivers for qualitative data.Results: Among the 110 study participants of principal caregivers of refractory epileptic patients, 81 (73.63%) were female, 39% of them were illiterate, and only 14.5% had education over and above higher secondary level.Approximately 9% had reported to have mild-to-moderate level of caregiver burden (CB), 38.2% had moderate-to-severe, and 52.8% had severe level of CB.Age of caregivers, socioeconomic status, and age of patients were found to be statistically significant (p <0.05) with burden of care.Qualitative data from the FGD indicated that the CB increased with gradual increases in medical expenditure and poor, inadequate, and irregular medicine supply from the government.Conclusion: Burden of care is affected by the age of caregivers, his/her socioeconomic status as well as age of patients.This needs to be taken into account while formulating national guidelines.