High Costs and Burdens for Families of Children with Epilepsy

Source: Orphanet journal of rare diseases

Summary

Researchers studied the indirect costs and burdens faced by families caring for children with severe epilepsy disorders known as developmental epileptic encephalopathies (DEE). They reviewed 24 studies that looked at how these conditions affect families, particularly focusing on the experiences of mothers and the overall impact on family life. The studies included various aspects of caregiving, including emotional, social, and economic challenges.

The findings revealed that mothers often bear a heavier burden than fathers when it comes to caregiving responsibilities. Many parents reported making significant changes to their work lives, such as reducing hours, quitting jobs, or retiring early due to their caregiving roles. This caregiving can lead to feelings of isolation, increased stress, anxiety, and depression, which negatively affect their quality of life. Siblings of affected children also experience challenges, but some parents find personal growth and fulfillment in their caregiving roles.

Understanding these indirect costs is important because it highlights the broader impact of severe epilepsy on families and communities. The study shows that caregiving affects not just the child with DEE but also the entire family unit, leading to economic and emotional challenges. However, more research is needed to explore ways to improve the experiences of families and enhance the quality of life for both caregivers and children with these conditions.

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