Abstracts

Rationale: High levels of parental stress exist in caregiver parents of children with epilepsy. The often complex course of treatment of pediatric epilepsy and the unpredictability of seizures can add additional stress burden to families. We report a Parent to Parent (P2P) match program for pediatric epilepsy, developed in response to parent requests and modeled on the hospital’s P2P program administered by the Center for Families at Children’s and similar national programs. These and other parent training programs have shown effectiveness in providing benefits to parents of children with chronic medical conditions and other special needs in the areas of coping and skill building.Methods: Provider statistics were reviewed utilizing the social work department statistical database and the hospital record system. Records of 18 families receiving support from the P2P program were reviewed. Data was gathered regarding the types of interventions that yielded requests for P2P support as well as on participants and mentors participating in the program.Results: The program is administered by the department’s epilepsy social worker and delivered by trained parent volunteers, all of whom are patients or parent caregivers of patients treated in the Epilepsy Program. A total of 18 families requested support from P2P program with children having a mean age of 9.9 years. Interventions requesting support included: two-stage invasive monitoring surgery (n=8); single stage surgery (n=4); ketogenic diet (n=4); pre-surgical long-term monitoring (n=1); new diagnosis support (n=1). A total of 26 families have volunteered to participate in the P2P program as mentors, of whom 15 have provided mentor support and four have provided more than one support call. Out of the 26 mentor volunteers, 10 are former mentees.Conclusions: Parent to Parent support programs offer a valuable adjunctive support option to existing support programs offered in pediatric epilepsy settings. The unique nature of a parent to parent connection may provide support that complements the care provided by the multidisciplinary care team. Epilepsy surgery and ketogenic diet consideration have prompted the most requests for support. Future prospective studies regarding the impact of the P2P program in the following areas: patient/caregiver satisfaction, perceived coping with intervention, and impact on decision making process for surgery or other interventions will be explored as well as the potential benefit to expand P2P support to other treatment areas within epilepsy.