A feasibility and pilot study of a family-focused intervention program for parents of children and adolescents with epilepsy

Objective: To describe and evaluate the acceptability of a pilot feasibility study of a family-focused intervention program (Improving Outcomes for Children with Epilepsy – IOCE) for families affected by pediatric epilepsy. Methods: The IOCE program was adapted from a previously published family intervention program for children with congenital heart disease. The intervention included a one-day family workshop, one individual follow-up session for each family, and a psychoeducational manual. It was delivered to 9 families of children and teenagers with epilepsy. Feasibility, acceptability and changes in self-reported parent, family and child outcomes were assessed from baseline to 1-month post-intervention. Results: Parents reported a high level of intervention acceptability. Recruitment and retention data suggested that we engaged families of children at risk (indexed by seizure frequency and profile on an epilepsy related quality of life scale). 48% of those offered the intervention engaged with the program and there was 100% retention rate. Exploratory analyses indicated preliminary positive effects on measures of child and family functioning. Conclusions: Findings suggested good feasibility and acceptability of the IOCE program. Pilot outcomes were positive; however, results should be interpreted with caution given the small sample size (n = 9) and absence of control group. Given the relevance of parent and family functioning for child adjustment in pediatric epilepsy, further development and trialling of this program is warranted.