OBJECTIVES: To 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.
METHODS: Questionnaires 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.
RESULTS: A 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).
CONCLUSION: Caring 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.