Lennox-Gastaut syndrome: impact on the caregivers and families of patients

Lennox-Gastaut syndrome: impact on the caregivers and families of patients

Lennox-Gastaut syndrome (LGS) has a major impact on the health-related quality of life (HRQL) of the affected children as well as their caregivers. The primary caregiver in the family is generally the mother, with support from the father and siblings. The burden of care and the effects of the diseas...

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Bibliographic Details
Published in:Journal of multidisciplinary healthcare 2014-01, Vol.7 (default), p.441-448
Main Author: Gibson, Patricia A
Format: Article
Language:eng
Subjects:
Care and treatment
Caregivers
Children & youth
Chronic illnesses
Convulsions & seizures
Death & dying
Epilepsy
Expert Opinion
Families & family life
Health aspects
Health surveys
health-related quality of life
HRQL
Information services
Lennox-Gastaut syndrome
Medical personnel and patient
Neurosciences
Parents & parenting
Patients
Pediatrics
Practice
Quality of life
relatives
siblings
Stress
Telephone hotlines
Womens health
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Summary:Lennox-Gastaut syndrome (LGS) has a major impact on the health-related quality of life (HRQL) of the affected children as well as their caregivers. The primary caregiver in the family is generally the mother, with support from the father and siblings. The burden of care and the effects of the disease on the child necessitate adjustments in virtually all aspects of the lives of their family. These adjustments inevitably affect the physical, emotional, social, and financial health of the whole family. Numerous sources of support for families can help to ease the burden of care. Improvements in the treatment of LGS, in addition to helping the child with LGS, would likely help improve the HRQL of the family members. This pilot parent survey was designed to explore the impact of epilepsy on caregiver HRQL. Parents of children with epilepsy who had contacted the Epilepsy Information Service at the Wake Forest University School of Medicine, Winston-Salem, NC, USA, were sent questionnaires comprising open- and closed-ended questions. A total of 200 surveys were distributed, with a return rate of 48%. The results revealed that 74% of the parents believed that having a child with epilepsy brought them and their partner closer together. However, when the parents were asked to explain the manner in which epilepsy affected their families, answers included continuous stress, major financial distress, and lack of time to spend with other children. Information and resources for the families of children with LGS could help improve the HRQL of both the patients and their relatives.
ISSN:1178-2390
1178-2390