Aim: To explore the range of parental experiences and expectations of KD as a treatment for medically refractory epilepsy in children. 

Methods: Parents of children (0-17 years) initiated on KD on or after July 1,2014 were interviewed. Estimated sample size will be approximately 20 participants (10M:10F) The principles of fundamental qualitative description were employed to gather data on parental experiences and expectations through one-on-one in depth telephone interviews. Thematic Content Analysis was used.

Results: Preliminary analysis (8M:5F) suggests that a common reason for KD initiation was the ineffectiveness of medication for adequate seizure control, and that KD was often the “last resort”. Parents expectation was seizure-control and improved QoL would follow seizure reduction, which included being able to lead an independent life and “fitting in” with the rest of their peers. Initial parental concerns were around the restrictiveness of the diet on the child’s meals, altered dynamics during family meal times, time-consuming diet preparation, and managing additional finances associated with products. Success was deemed as adequate seizure-reduction, complete seizure-control, or positive behavioral changes. Primary disadvantages of the diet included additional stress around meal preparation, extra planning for social activities, and GI side effects. The most supportive aspects include consistent follow-ups with the KD team and accessibility to the dietician.

Conclusion: Parental expectations around the ketogenic diet surround adequate seizure-control, resulting in an improved quality of life. Despite the disadvantages, parents expressed that with adequate support from the KD team, the diet is a good adjunct for seizure control.