A caregiver education model for families beginning ketogenic therapy

Ketogenic Therapy (KT) is an intense therapy for pediatric epilepsy consisting of a diet regimen that is high in fat, low in carbohydrate and adequate in protein. The KetoGators, an undergraduate research and patient support group, have designed a system that uses reviewed literature to provide tailored education to the caregiver. This educational system allows the caregiver to better understand the rigorousness of KT in order to make an informed decision before starting the therapy. The first component of caregiver education is the informational booklet Caregiver’s Guide to KT which thoroughly explains the therapy and the expectations of the caregiver. Booklets explaining how to create ketogenic meal equivalents and how to prepare meals using Microsoft Excel are also distributed during initiation of the therapy. During this session, parents are taught about every aspect of the therapy by the KT clinic staff and the KetoGators. Caregivers receive a copy of all KetoGator newsletters, which are informational bulletins published four times a year. The newsletter contains articles on a wide array of subjects that are helpful to the caregiver, such as meal making tips and periodically contains a new installment of the Ketogenic Sibling Series, a series of poems discussing issues encountered by families with a child on KT. During the training session, a cooking video demonstrating proper ketogenic meal preparation techniques is shown. It is the goal of the KetoGators that education of the caregiver will increase the success of KT for more patients.