Social matters before and after epilepsy surgery in children

Abstract

Social functioning is at risk in children with drug-resistant epilepsy. Seizures, taking medication, restrictions in everyday activities, fatigue, hospital visits, and the stigma of having epilepsy are just a few consequences that can deprive these children from age-appropriate social activities. This affects the quality of life of these children and their families directly, but also limits the development of social skills through less than normal experience. Epilepsy surgery is a treatment aiming to cure epilepsy in patients with drug-resistant focal epilepsy with an identifiable epileptic zone that does not involve eloquent cortex and is easily accessible to surgical resection. Epilepsy surgery could form an extra threat to social functioning, since the majority of resections include brain structures and networks that are involved in social cognition (interpreting social situations), like parts of the prefrontal cortex and superior temporal sulcus with the amygdala in particular. On the other hand, when it leads to the expected seizure freedom or seizure reduction, epilepsy surgery can decrease the negative consequences of having epilepsy and improve general social functioning. We assessed social cognition in children before and after epilepsy surgery and other social ‘matters’, such as personality, general social functioning of these children, and parenting stress, parents’ psychological wellbeing, and the family’s functioning as perceived by the parents. We found that children with refractory epilepsy perform worse on social cognition tasks than healthy peers, which could not be explained solely by the lower intelligence of children with epilepsy than of the controls. Self-reports on personality revealed more (social) inadequacy, perseverance and recalcitrance in children with refractory epilepsy than in healthy peers. Parenting stress was higher in parents of children with refractory epilepsy than in parents healthy peers. Parents, mostly mothers, reported problems in their psychological and family functioning. Besides epilepsy onset age, robust relationships between epilepsy variables and social functioning could not be detected. Epilepsy surgery did not cause additional deficits in social cognition, but it did not improve social cognition either. Adverse personality traits and problems in general social functioning of both children and parents decreased to some degree after epilepsy surgery, but remained problematic. Psycho-education about the effects of epilepsy and epilepsy surgery on the social development of children and social lives of parents may help to prevent problems and lower the threshold for psychological guidance to optimize social functioning of the children and their parents.