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Ketogenic Diet: Parental Experiences and Expectations.

Elizabeth Orr1, Robyn Whitney2, Nandini Nandeesha3

  • 1Department of Nursing, Faculty of Applied Health Sciences, Brock University, St. Catharines, Canada.

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|February 5, 2024
PubMed
Summary

The ketogenic diet for epilepsy can be challenging for families, impacting well-being. However, parents found its benefits for seizure control outweighed the difficulties, though more research on quality of life is needed.

Keywords:
ketogenic dietpediatric epilepsyqualitative researchquality of life

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Area of Science:

  • Pediatric Neurology
  • Dietary Therapies
  • Epilepsy Management

Background:

  • The ketogenic diet is a recognized treatment for medically refractory epilepsy in children.
  • Implementation of the ketogenic diet can present significant challenges for patients and their families, affecting physical, emotional, and social well-being.

Purpose of the Study:

  • To explore parents' experiences and expectations regarding the use and efficacy of the ketogenic diet for children with medically refractory epilepsy.

Main Methods:

  • An exploratory qualitative study using fundamental qualitative description principles.
  • Interviews were conducted with 17 parents (10 mothers, 7 fathers) of 12 children with epilepsy.

Main Results:

  • Parents had an average of 25 months of experience with the ketogenic diet.
  • Primary expectations focused on seizure control, with secondary importance on child development and quality of life.
  • Common physical impacts included gastrointestinal issues; social/emotional effects were noted in some children.
  • Caregivers reported significant negative impacts on finances, relationships, and emotional well-being (stress).
  • Family-centered care, regular communication, and close follow-up from the ketogenic diet team were beneficial.

Conclusions:

  • Positive impacts of the ketogenic diet were perceived to outweigh risks, despite caregiver challenges.
  • Further investigation into the diet's effects on quality of life and child development (social, emotional, cognitive) is crucial.