Ketogenic Diet Therapy for Children and Youth With Epilepsy: Caregiver Perspectives and Experiences at Longer-Term Follow-up

Abstract

This study examines caregiver perspectives on ketogenic diet (KD) therapy for children with drug-resistant epilepsy, focusing on experiences and children's eating habits after discontinuation. Fifteen caregivers in the KD group and twelve in a comparison group who were not treated with KD participated. All participants completed demographic and eating behaviour questionnaires. KD caregivers also completed a questionnaire on their KD experience, with follow-up interviews for member checking. Some caregivers in both groups reported avoidant or restrictive eating in their child, with no significant differences between groups. Caregivers described mixed outcomes of KD; however, more than half said they would choose the diet again, including some whose children did not achieve seizure control. Challenges reported by caregivers included time, financial, and social burdens. Caregivers emphasized the need for practical resources and peer support and highlighted the importance of pre-intervention guidance to help families weigh potential benefits and burdens of KD before initiation.