Drug-resistant epilepsy and ketogenic diet therapy – a qualitative study of families’ experiences

ORCID

Abstract

Background: A diagnosis of drug-resistant epilepsy is life changing for a family. Ketogenic diet therapy (KDT) can offer hope when other treatments have failed. However, it often requires a significant change in daily routine and dietary habits. This qualitative descriptive study aimed to explore families’ experiences of epilepsy and KDT. Methods: Parents of a child aged ≤18 years with epilepsy, currently or recently treated with KDT, were recruited from the UK and internationally via UK Ketogenic Diet (KD) centres, charities, and social media. Semi-structured interviews were audio recorded, transcribed verbatim, anonymised, coded using Nvivo (V12), and inductive thematic analysis undertaken. Results: Twenty-one parents participated. Four themes and 12 subthemes emerged: 1. ‘Epilepsy is all consuming’ explored the impact of epilepsy on the family. 2. ‘KD provides a window to new opportunities’ explores the motivators for KDT and positive outcomes. 3. ‘The reality of KD’ explores day to day life and how families adapt to KD. 4. ‘Looking to the future’ explores the factors that may make KD easier for families. All were glad their child trialled KD, even when less successful. The importance of a support network including family, friends, charity organisations and the KD team was evident across all themes. Conclusions: We conclude with five recommendations to help support families in their management of KDT; Improved access to KDT and transition to adult services, access to quality education and support, enhanced variety of KD foods, regular social education and finally consideration of peer mentoring.

DOI

10.1016/j.seizure.2024.04.024

Publication Date

2024-01-01

Publication Title

Seizure

Volume

118

ISSN

1059-1311

Embargo Period

2025-05-04

Keywords

Epilepsy, Family, Interviews, Ketogenic diet, Outcomes, Parents, Quality of life

First Page

137

Last Page

147

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