OBJECTIVE: The goal of the work described here was to determine the prevalence and characteristics of maternal stress in families of children with intractable epilepsy. METHODS: Mothers of children aged 2-18 with intractable epilepsy were asked to complete the Parenting Stress Index, Scales of Independent Behavior-Revised, and Child Behavior Checklist, and were queried regarding family type, maternal education, and family income. Neurology clinic charts were reviewed for seizure variables including age at onset, number of failed therapies, and seizure frequency. The Parenting Stress Index measures stress in two broad domains [stress related to characteristics of the child (Child Domain) and stress related to characteristics of the parent (Parent Domain)] as well as a Total Stress score. RESULTS: Fifty-two of 80 (65%) eligible mothers returned completed questionnaires. Sixty-three percent scored in the clinical range for Total Stress, 75% for the Child Domain, but only 29% for the Parent Domain. Mothers scored more adversely on the Isolation, Health, Role Restriction, and Spouse subscales of the Parent Domain, but more favorably on the Attachment subscale. A moderate to high correlation was noted between behavior problems in the child and higher Total Stress scores, but no significant correlations were found between other seizure or demographic variables. CONCLUSION: Intractable childhood epilepsy is associated with markedly increased maternal parenting stress. Increased stress is due predominantly to child factors. Mothers would strongly benefit from added support to alleviate the constant caregiving demands.
OBJECTIVE: The goal of the work described here was to determine the prevalence and characteristics of maternal stress in families of children with intractable epilepsy. METHODS: Mothers of children aged 2-18 with intractable epilepsy were asked to complete the Parenting Stress Index, Scales of Independent Behavior-Revised, and Child Behavior Checklist, and were queried regarding family type, maternal education, and family income. Neurology clinic charts were reviewed for seizure variables including age at onset, number of failed therapies, and seizure frequency. The Parenting Stress Index measures stress in two broad domains [stress related to characteristics of the child (Child Domain) and stress related to characteristics of the parent (Parent Domain)] as well as a Total Stress score. RESULTS: Fifty-two of 80 (65%) eligible mothers returned completed questionnaires. Sixty-three percent scored in the clinical range for Total Stress, 75% for the Child Domain, but only 29% for the Parent Domain. Mothers scored more adversely on the Isolation, Health, Role Restriction, and Spouse subscales of the Parent Domain, but more favorably on the Attachment subscale. A moderate to high correlation was noted between behavior problems in the child and higher Total Stress scores, but no significant correlations were found between other seizure or demographic variables. CONCLUSION: Intractable childhood epilepsy is associated with markedly increased maternal parenting stress. Increased stress is due predominantly to child factors. Mothers would strongly benefit from added support to alleviate the constant caregiving demands.