The impact of severe pediatric epilepsy on experienced stress and psychopathology in parents

Abstract

ObjectivesTo assess the prevalence of psychopathology and the level of stress in parents of children with severe epilepsy to gain a better understanding of parental support needs. MethodsQuestionnaires were completed by parents of children with severe epilepsy during the hospitalization of their child at the Danish Epilepsy Center. The questions targeted symptoms of post-traumatic stress disorder (PTSD), complex PTSD (CPTSD), depression, and anxiety, and the level of perceived stress. ResultsA total of 162 caregivers of 140 children with epilepsy participated in the survey. Mothers were more often unemployed than fathers (38% vs. 11%, p < 0.01), and nearly half of the children (47%) attended special needs classes. Psychopathology symptoms were found in 43.5% of parents, fulfilling criteria for one or more diagnoses, and an additional 11% showed symptoms of sub-clinical PTSD. Parent-rated child difficulties were significantly associated with PTSD (Mdiff = 5.51, p = 0.001), depression (Mdiff = 4.50, p < 0.000), and anxiety (Mdiff = 4.61, p = 0.01), and with higher levels of perceived stress (p < 0.001). ConclusionCaring for a child with severe epilepsy has a significant psychopathological impact on caregivers. Caregivers’ resources and the degree of behavioral difficulties in the child, rather than epilepsy-related factors, are highly correlated with distress and psychopathological symptoms in caregivers.