Parental Stress in New-Onset Epilepsy and After Therapy Withdrawal

Abstract

Objective: To assess maternal and paternal stress inparents of children with epilepsy, at the time of diagnosis, after one year of follow-up and after therapy withdrawal.

Methods: We investigated parental stress in a sample of 85 children aged 2-14 years, divided into two groups based on the diagnosis: Group 1 (50 patients) with Childhood Absence Epilepsy or Idiopathic Focal Epilepsy with Rolandic discharges; Group 2 (35 patients) with different forms of drug-resistant Epilepsy. Every parent completed the Parental Stress Index-Short Form at Time 0, when they received the diagnosis and patients started therapy, at Time 1, after 1 year of follow-up. Only parents of Group 1 completed the same questionnaire after 2 years therapy withdrawal.

Results: We found high levels of stress in both mothers and fathers at Time 0, without statistically significant differences between the two groups.At Time 1, stress values were unchanged in Group 1 mothers; conversely, the levels of stress in Group 1 fathers were reduced, with average values that fell within the “normal range”. In group 2, stress levels were reduced both in mothers and fathers at Time 1, compared to Time 0, but equally fell into the "clinical range", for both parents.In Group1, even one and two years after therapy withdrawal, parental stress did not normalizeand all scores persisted in the “clinical range” in both mothers and fathers.

Conclusions: Our study revealed that, the diagnosis of epilepsy itself tended to increase parental stress, apparently regardless of the severity of the disorder; even after a period of follow-up, when epilepsy was better controlled, overall parental stress remained high. Parental stresslevels remained higher than expected, even 2 years after the suspension of therapy and the absence of seizures. This was probably due to concerns with the reappearance of new seizures or a more severe type of epilepsy with the suspension of drug(s), and feelings of inadequacy with their parental role(s).