The multidimensional impact of Dravet syndrome on caregivers: A comprehensive review

Abstract

Background: Dravet syndrome (DS) is a rare developmental and epileptic encephalopathy that places a substantial burden on both affected individuals and their informal caregivers. The aim of this review is to examine the multifaceted impact of DS on informal caregivers, focusing on key factors that contribute to their challenges and overall burden.

Methods: The PRISMA guidelines were followed and a comprehensive search of electronic databases (PubMed, Science Direct, Taylor & Francis) was conducted to identify original research articles from January 2015 till the end of December 2024 in English language. Two reviewers independently carried out the screening. The quality of studies was assessed using the AXIS Critical Appraisal Tool for Cross-Sectional Studies. Relevant data was extracted and a narrative synthesis was performed to integrate the findings.

Results: The review included ten studies involving 887 caregivers of patients with DS. Most studies reported a higher proportion of female caregivers. Additionally, all studies were conducted in Europe and the USA. Patient-related characteristics, caregiver characteristics, psychological and physical strain, family functioning, access to support system, financial burden, and difficulties in balancing caregiving responsibilities and personal needs were found to influence caregivers' experiences and overall well-being. Women, especially mothers, were found to face greater psychological and physical burden, along with productivity loss and difficulties in managing caregiving and personal responsibilities.

Conclusion: Caregivers of individuals with DS face significant challenges. More research is needed to understand the full impact of DS on caregivers. Targeted interventions and improved resources are essential to reduce strain and improve care for both caregivers and individuals with DS.