The impact on the quality of life and burden over caregivers of young patients with epilepsy in the transition process: an experience report

*Correspondence: [e-mail].

Abstract

Background: Epilepsy is a chronic disorder that substantially affects the quality of life of its patients. The studies in this area, although quite comprehensive, do not contemplate the impact of the disease on the life of the patient's caregiver, mainly in what concerns pediatric patients. A reinforcing and responsive family environment provides direction for the child to feel safe and create strategies to cope with the disease, otherwise family attitudes and expectations may negatively influence. Data from the literature suggests that the caregiver's perception of burden is linked to the coping strategies found. The lives of both end up, in many cases, being shaped by epilepsy. An important advance in the treatment of these patients is the use of transition programs, which support individuals and their families as they change from pediatric to adult caregivers, promoting less family burden, self-reliance, and patient empowerment.

Objective: To identify and understand the difficulties experienced by caregivers of patients with epilepsy in the transition process, their understanding of the disease, accountability, and burden.

Methods: From 2019 to 2023, we applied a structured and validated questionnaire to 31 family members and caregivers of patients with epilepsy, they signed an informed consent form with 57 questions on the subject.

Results: 31 caregivers answered the questionnaires. The understanding regarding the health condition of the patient cared for, 53% do not understand. 43% reveal that sometimes they provide more help than the patient needs. The caregiver's health was frequently affected in 1 family member, with half of them stating as never affected. Overload was reported as ocorring in 6% and 12% feel unable to care and their dependents for much longer.

Conclusion: The transition process in epilepsy is of fundamental importance for us to understand what the disease means for the patient and their families and how they organize themselves to live with epilepsy, seeking a quality of life for both and reducing the burden imposed by the disease. Investments in the well-being of children in early childhood and their families emerge as a focus of engagement to avoid problems in other stages of life.

 

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Artikel online veröffentlicht:
12. Mai 2025