Stress and perceived stigma among parents of children with epilepsy

PURPOSE: The present study aimed at understanding the stress and perceived stigma among parents of children with epilepsy seeking treatment at a tertiary referral center for neurology in South India. MATERIALS AND METHODS: Parents of sixty children suffering from epilepsy in the age group of 4–15 years were interviewed to explore parental stress and perceived stigma. They were recruited consecutively over a period of 6 months in 2015. Tools administered were Childhood-Illness related Parenting Stress Inventory (Manford in J Neurol 264(8):1811–24, 2017) and the Parent Stigma Scale (Baca et al. in Value Health 13(6):778–786, 2010). RESULTS: The mean age of parents was 37.2 years, and the majority of parents who used to bring their child to the hospital were male (71.7%) and educated up to the secondary/intermediate level (36%) and were from lower socio-economic status. The mean age of children with epilepsy was 8.4 years with the majority of them being male (66.7%), affected with chronic seizures (58.3%) with most commonly occurring seizure type being generalized seizures (50%), with a co-morbid diagnosis of cerebral palsy (26.7%). A significant number of parents reported difficulty in communicating with medical team (58.3%) and significant others (51.7%) about their child’s seizures and difficulty in making decisions related to their child’s medical care (43.3%) which strained their financial resources and created difficulty in adequate role functioning. Findings indicated that most of the parents of children with chronic seizures perceived reactions of others to be negative (53.3%) and would limit family social interaction which resulted into emotional reaction in the form of anger, guilt, fear, anxiety, and depression. CONCLUSION: Parents are important figures in the process by which children with epilepsy came to acknowledge themselves being different from other children. Parents often feared divulging their child’s epilepsy to their friends and relatives because they experienced a sense of shame, self-blame, and rejection which also increased their stress.