From Hesitation to Confidence: Shifting Parental Attitude and Perception Toward Ketogenic Diet in Treating Children With Drug-Resistant Epilepsy.

BACKGROUND

Managing drug-resistant epilepsy (DRE) in children through ketogenic diets (KD) is a promising therapeutic approach. Parental perceptions significantly influence adherence and outcomes of KD; however, to date, no validated tool exists to evaluate these perceptions systematically. This study presents a novel approach by developing and validating the first questionnaire to assess parental perceptions of KD in a clinical setting. The aim of this study was to develop and evaluate changes in parental perceptions and attitudes toward KD before and after a structured intervention, addressing domains such as awareness, perceived effectiveness, compliance, concerns, and social and financial influences.

METHODOLOGY

A pre- and post-intervention study was conducted among 30 parents of children with drug-resistant epilepsy aged one month to five years. Structured educational sessions, counseling, and resource distribution were provided over three months. Parental perceptions were assessed using validated questionnaires at baseline and post-intervention. The internal consistency of the domains was analyzed using Cronbach's alpha, with values ≥0.70 deemed acceptable. Paired t-tests compared pre- and post-intervention scores, with statistical significance set at p < 0.05. The developed questionnaire has been duly registered by the Copyright Office of the Government of India and is copyright-protected. The study was approved by the Institutional Ethics Committee of Sri Ramachandra Institute of Higher Education and Research, Porur, Chennai (reference number: IEC/24MAR/185/09).

RESULTS

Post-intervention, significant improvements were observed in parental understanding (mean: 5.000 ± 0.000 versus 2.167 ± 1.02; p < 0.001), perceived effectiveness (4.700 ± 0.915 versus 2.967 ± 0.513; p < 0.001), and motivation (4.533 ± 0.698 versus 3.267 ± 0.521; p < 0.001). Concerns about side effects, financial burden, and long-term adherence decreased significantly (p < 0.001). Cronbach's alpha demonstrated high internal consistency across domains (α ≥ 0.719). Positive impacts on child quality of life and reduced peer influence were also noted.

CONCLUSION

Structured education and support significantly improved parental perceptions, alleviating barriers to KD adherence. The validated questionnaire serves as a robust clinical tool for assessing and addressing parental perceptions, enabling tailored interventions to enhance KD efficacy and optimize outcomes in children with refractory epilepsy.