The objective of this research was to identify caregiver perspectives on dietary therapies for epilepsy, as well as provide future directions for improving caregiver support. A Qualtrics survey was distributed via social media platforms. The survey was aimed towards caregivers with children who are currently using or have previously used dietary therapy for epilepsy. A total of 192 respondents were included, though the number of respondents varied by question. Caregivers reported dietary therapy as 'somewhat to very challenging' with 76% of children and 99% of caregivers reporting at least one difficulty. Eighty percent of caregivers' children experienced at least one type of adverse event, with the most common event being constipation. Finally, caregivers reported high scores for quality of life, happiness with the diet, and feeling supported during treatment. Recommendations for how to improve the experience of families included increased clinic support, support group offerings, meal resources, educational resources, access to diet related equipment, financial assistance/relief, therapy/transition assistance, respect for the caregivers' concerns/thoughts, and restaurant options. In short, most caregivers are pleased with dietary therapy; however, there are specific changes that would significantly help caregivers during treatment. This information could be used by clinics to better support caregivers during treatment.
Keywords: Caregiver; Dietary therapy; Epilepsy; Ketogenic; Low Glycemic Index Treatment; Modified Atkins.
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