A Descriptive Study of Caregivers' Awareness, Practices, Challenges Faced, and Methods of Adherence to the Ketogenic...

Background: Refractory epilepsy refers to a type of epilepsy in which anti-epileptic medications do not yield results, necessitating alternative medical interventions. The ketogenic diet (KD) is utilized as a non-pharmacologic treatment for refractory epilepsy. This study aims to assess details regarding caregivers' awareness and practices, challenges faced, and other details regarding the KD as a treatment option for children with refractory epilepsy. Methods: A cross-sectional study included 15 caregivers of children with refractory epilepsy who adhere to the KD. Data were collected using an online, self-administered questionnaire including socio-demographic characteristics and descriptive aspects of KD on 15 caregivers. Results: Caregivers' awareness scores varied, over half of the caregivers (53.3%) demonstrated low awareness levels, scoring below the midpoint on the awareness scale, while both caregivers' adherence (t value = 31.5; p < 0.001) and patients' adherence levels (t value = 26.1; p < 0.001) significantly exceeded the minimum expected thresholds, indicating effective implementation of the diet protocols. Challenges faced by caregivers were categorized as follow: logistical challenges (e.g., issues related to KD availability, cost, and weighing (15.6%)), behavioral challenges (e.g., avoiding prohibited foods (18.8%), feelings of hunger, the social environment, and never eating without caregivers), and medical challenges (e.g., frequent blood glucose monitoring (25%)). The most common side effects of the KD were gastrointestinal symptoms, including constipation (33.3%) and gastroesophageal reflux disease (GERD). Physical symptoms such as dyslipidemia were also reported by 13.3% of participants. In terms of neurological and behavioral improvements, the three most reduced symptoms following KD adoption were hyperactive attention deficit (25%), tremors (20%), and insomnia (20%). Conclusions: This study reveals a significant gap between high adherence and low awareness of the KD among caregivers of children with refractory epilepsy. While adherence is crucial for the success of KD, this discrepancy highlights the need for comprehensive caregiver education that not only focuses on practical implementation but also on the underlying rationale of the diet. This study underscores the importance of multidisciplinary support, by including dietitians, to bridge the knowledge gap. These findings suggest that dietary education programs should aim to improve caregivers' understanding, ultimately enhancing adherence and long-term outcomes. Future research should explore the psychosocial factors influencing adherence and the role of trust in healthcare professionals in shaping caregiver behaviors. The findings also call for further exploration into the impact of caregiver education on child health outcomes in the long term. The varied knowledge among caregivers indicates a need for further educational interventions or increased visits from dietitians. Strategies need to be framed to overcome the challenges faced and improve adherence.