Abstracts

Rationale: Currently, extensive evidence from both epidemiological and community studies reveal behavior problems and psychopathology rates in 20% to 60% of children with epilepsy, a rate three to six times that of the general population. Furthermore, the mental health needs of these children are often undiagnosed and untreated. The discrepancy between the mental health needs of children with epilepsy and their participation in mental health services calls into question those factors that act as obstacles to mental health care. This study seeks to investigate possible barriers to mental health care (MHC) from the perspective of parents of children with epilepsy. Methods: Twenty Caucasian and 20 Hispanic parents read about epilepsy-related psychosocial problems and treatment resources while waiting for their child’s neurology appointment. Before and after this educational intervention, the parents completed a questionnaire on their knowledge about the comorbidities of pediatric epilepsy; their perception of the main impact of epilepsy for their children; their attitude towards and obstacles to MHC; parent and provider interactions on the children’s behavior and learning problems; and the stigma of epilepsy. Principal components analysis of the items in the questionnaire was performed to obtain a reduced number of outcome measures. ANOVAs were used to compare the two parent groups prior to intervention, and mixed effects models with repeated measures were used to examine the effect of the intervention by parent type. Results: Prior to reading the brochure, the Hispanic parents reported a significantly less favorable attitude toward MHC (p<.002) and increased awareness that people treated their children with epilepsy differently than Caucasian parents (p<.03). After reading the brochure, both groups of parents significantly increased their knowledge about the comorbidities of epilepsy (p<.002) with a trend for greater knowledge about effective MHC for the comorbidities of epilepsy (p<.06). Also following the intervention, both parent groups were significantly more aware that their children did not want behavior and learning-related difficulties associated with their epilepsy (p<.02). In addition, baseline differences between the Hispanic and Caucasian parents in the attitude towards MHC and the stigma of epilepsy were not apparent. Responses to questions on obstacles to MHC suggested that the parents had reasons other than those stated in the questions for postponing MHC for their children. Conclusions: After reading a concise educational brochure, there was an increase in the parents’ knowledge about the behavioral and cognitive comorbidities of pediatric epilepsy as well as their treatment. These findings suggest that providing parents with brief brochures on the psychosocial aspects of epilepsy might be an effective strategy to address the barrier of lack of knowledge about MHC as well as efficient use of the time parents spend in physician waiting rooms. The study’s findings also clearly highlight the need to identify obstacles to MHC that might be specific for children with epilepsy.