Prevalence and associated factors of caregiving burden among caregivers of adults with epilepsy in Malaysia - A cross-sectional study

Background: There are still insufficient data on caregiver burden among caregivers of adult people with epilepsy (PWE), particularly in Malaysia. This study aims to explore the level of perceived caregiver burden among the informal caregivers caring for PWE, its predicting factors associated with caregiver burden, and the impact of this caregiver burden on their psychological health.

Methods: In this cross-sectional study, caregivers of adult PWE attending the neurology outpatient clinic at Hospital Canselor Tuanku Muhriz (HCTM) completed a comprehensive questionnaire comprising demographic data of participants and care recipients (adult PWE). Epilepsy-related data were obtained from the interview and medical records. Affiliate stigma among caregivers was assessed using Affiliate Stigma Scale (ASS), and psychological impacts were evaluated using Depression Anxiety Stress Scale 21 (DASS-21). The level of caregiver burden was evaluated with Zarit Burden Interview (ZBI).

Results: A total of 119 caregivers participated in the study, and 35.2 % of them reported mild to moderate burden. The factors most strongly associated with higher caregiver burden were female caregivers, needs for assistance in activities of daily living (ADL), frequent seizures, polypharmacy, and affiliate stigma among caregivers. A statistically significant positive correlation was seen between caregiver burden and psychological impacts of depression (r 0.522, p < 0.001), anxiety (r 0.463, p < 0.001), and stress (r 0.598, p < 0.001).

Conclusion: This study demonstrated various degrees of caregiver burden among caregivers of adult PWE. A better understanding on the predictive factors and impacts on psychological health of caregivers are needed to provide suitable interventions including psychoeducation for the caregivers to alleviate their burden and subsequently improve the quality of caregiving.