Parenting stress does not normalize after child's epilepsy surgery

• Parenting a child with drug-refractory epilepsy increases parenting stress.
• Parenting stress is still high two years after epilepsy surgery.
• Stress decreases most in parents of children with postsurgical seizure freedom.
• Parenting stress does, however, not normalize after epilepsy surgery.

PurposeThis study aimed to investigate parenting stress expressed by parents before and two years after their children's epilepsy surgery.MethodsSubjects: Parents of 31 consecutively included surgery patients with epilepsy and parents of 31 healthy sex- and age-matched control children were the subjects of this study. Materials and procedure: The questionnaire ‘Parenting Stress Index’, which distinguishes a Parent domain (stress leading parents to feel themselves inadequate) from a Child domain (child features felt by parent to cause stress) was completed before surgery of the patients and two years thereafter. At both time points, intelligence examination of the child was part of a comprehensive neuropsychological assessment, as were evaluations of recent stress-enhancing life events and epilepsy severity.ResultsPrior to surgery, total parenting stress was significantly higher in parents of patients than in parents of controls. Two years after surgery, total parenting stress had decreased significantly in parents of patients. The scores on parent-related subscales Role Restriction and Spouse and on the child-related subscale Distractibility/Hyperactivity, all relatively high before surgery, decreased significantly. Still, parents of patients experienced significantly more stress compared with parents of controls mainly because of persistently higher stress scores in parents of patients on the subscale Role Restriction (Parent domain) and on five of six subscales in the Child domain. Intelligence of the child was associated with parenting stress: the lower the child's intelligence, the higher the stress score on the subscale Distractibility/Hyperactivity and the lower the stress score on the subscale Mood. Stress decreased more in parents of patients who became seizure-free after surgery than in parents of patients with recurrent seizures.ConclusionsParenting stress decreases but does not normalize in the first two years after epilepsy surgery. Parents should be offered counseling on epilepsy-related intricacies contributing to parenting stress, immediately after diagnosis as well as after epilepsy surgery, notwithstanding the resulting seizure status of the child.