Caregiver perspectives on dietary therapies for epilepsy

Sarlo, Gabrielle L.; Holton, Kathleen F.

doi:10.1016/j.eplepsyres.2021.106803

Cited by 8 publications

(11 citation statements)

References 5 publications

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“…Our study is also in agreement with previous studies in the literature; in particular, a survey by Sarlo and colleagues (2021) [ 15 ] on a sample of 192 participants showed that 76% of parents/caregivers classified dietary therapy as “very challenging”, and 99% reported at least one difficulty in the management of dietary therapies. The authors concluded that caregivers reported substantial difficulties for themselves and their children while using the dietary treatment for epilepsy; however, they felt supported and were happy with the therapy and the improved quality of life for their children, suggesting that the benefits outweigh the difficulties.…”

Section: Discussionsupporting

confidence: 93%

“…The ketogenic diet can represent an important commitment for parents/caregivers of pediatric patients from an organizational, social, economic, and also psychological point of view [ 15 ]. The change of eating habits, the lack of flexibility, and the strictly planned and obligatory meals can be stress factors for the parents and for the whole family.…”

Section: Discussionmentioning

confidence: 99%

“…Despite the progress of recent years, nutritional therapies for pediatric patients and patients with disabilities require intense parent/caregiver commitment [ 15 ]. Parents are responsible for managing the diet; therefore, parental compliance is the main factor influencing adherence to diet therapy.…”

Section: Introductionmentioning

confidence: 99%

“…Undertaking the KD affects eating and social habits and can significantly change the quality of life of the entire family unit. Parents of children following the KD may experience some difficulties related to various factors such as the child’s poor compliance with the diet, social repercussions, a lack of time, or a lack of clinical support [ 15 ]. These factors can affect parental stress and lead to a discontinuation of therapy [ 15 ].…”

Section: Introductionmentioning

confidence: 99%

“…Parents of children following the KD may experience some difficulties related to various factors such as the child’s poor compliance with the diet, social repercussions, a lack of time, or a lack of clinical support [ 15 ]. These factors can affect parental stress and lead to a discontinuation of therapy [ 15 ]. On the other hand, the effectiveness of therapy and the reduction in seizure frequency can reduce parental stress levels [ 16 ].…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

The Ketogenic Diet in Children with Epilepsy: A Focus on Parental Stress and Family Compliance

et al. 2023

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(1) Background: The aim of our study was to evaluate parental stress after 6 and 12 months of a ketogenic diet, considering demographic and clinical variables (epilepsy type, epilepsy duration, seizure number, antiseizure medications, comorbidities, efficacy, and adverse events). (2) Methods: We consecutively enrolled 36 children aged between 3 and 10 years who had been diagnosed with various types of drug-resistant epilepsy and who were in therapy with a ketogenic diet for better seizure control. A standardized neuropsychological questionnaire (Parenting Stress Index–PSI) was administered to the parents evaluating parental stress at baseline (T0), after 6 (T1) months, and after 12 months (T2). (3) Results: After 6 and 12 months of dietary treatment, Parental Distress and Total Stress mean scores were statistically significantly increased. Post hoc analysis showed no significant changes in the scores between T0 and T1, although there was a significant increase between T1 and T2. We did not find statistically significant relationships between parental stress and the other variables considered. (4) Conclusion: The ketogenic diet can be challenging for parents and can affect the perception of parental stress, especially in the long term. Parents may feel inadequate in their role; therefore, they should be helped and encouraged through additional supports in order to maximize the adherence to diet therapy.

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Section: Discussionsupporting

confidence: 93%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%