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Epilepsy

Implementation of a Standardized Seizure Action Plan to Improve Communication and Parental Education

Background: Quality measures have highlighted the need for efficient treatment of status epilepticus. One strategy is prevention of refractory status epilepticus through individualized seizure action plans. As a quality improvement project, we implemented a standardized seizure action plan to improve the delivery of key information to families of children with seizures.

Mon, 01/16/2023 - 13:00

The perceived health of children with epilepsy, sense of control,and support for their families

Aim: The aim of this study was to evaluate the perceived health of children with epilepsy as experienced by the respondents to a questionnaire, to assess the sense of control over their child's epilepsy, and how much support they feel they received in various environments.

Tue, 12/20/2022 - 09:33

Siblings' caring roles in families with a child with epilepsy

Despite large amounts of care for chronic conditions being provided within the family, information regarding the extent to which siblings contribute to informal care practices in families where a child has a chronic condition is limited. This article draws on multiple perspective data from 24 families that had a child with epilepsy. In doing so, the article illustrates siblings' significant contribution to caring for their brother or sister and further develops the alert assistant concept.

Tue, 12/13/2022 - 17:00

Anxiety among caregivers of children with epilepsy from western China: A cross-sectional survey

The current study aimed to evaluate the status of anxiety among caregivers of children with epilepsy and examine the associated factors.A cross-sectional study was conducted in western China, which consecutively recruited children with epilepsy in 2018. The self-rating anxiety scale (SAS) was used to assess the status of anxiety among caregivers of children with epilepsy.

Tue, 12/13/2022 - 12:47

Evaluation of care burden and caregiving preparedness in caregivers of patients with epilepsy: A sample in eastern Turkey

Aim: This study was conducted to evaluate the care burden and caregiving preparedness in caregivers of patients with epilepsy. Methods: This descriptive, cross-sectional study evaluated the caregivers of patients with epilepsy who were referred to the neurology outpatient clinic of a university hospital in Erzurum, eastern Turkey, between February 2020 and February 2021. The study was carried out with 147 volunteers among the patients with epilepsy who were referred to the neurology outpatient clinic between the specified dates.

Wed, 08/10/2022 - 19:38

Quality of life among caregivers of children with epilepsy: A cross‐sectional study at Eastern Nepal

Objective: To assess the quality of life among caregivers of children with epilepsy in a tertiary care center of eastern Nepal. Methods: A cross‐sectional study was conducted among primary caregivers of children with epilepsy, who accompanied their child in child neurology clinic. Consecutive sampling was done, and 106 respondents were interviewed. Data were collected using World Health Organization Quality of Life‐BREF (WHOQOL‐BREF) scale and analyzed using Statistical Package for the Social Sciences. Descriptive and Inferential statistics were applied.

Thu, 06/16/2022 - 15:41

Dravet Syndrome—The Polish Family’s Perspective Study

Aim: The aim of the paper is to study the prevalence of Dravet Syndrome (DS) in the Polish population and indicate different factors other than seizures reducing the quality of life in such patients. Method: A survey was conducted among caregivers of patients with DS by the members of the Polish support group of the Association for People with Severe Refractory Epilepsy DRAVET.PL. It included their experience of the diagnosis, seizures, and treatment-related adverse effects.

Thu, 02/10/2022 - 10:42

Family cohesion is differently associated with felt stigma depending on enacted stigma in adults with epilepsy

Purpose: There have been little researches examining the role of family functioning on psychological outcomes in the field of adult epilepsy. We determined whether family functioning is correlated with felt stigma in adults with epilepsy. Methods: In this cross-sectional study, adults with epilepsy and their caregivers were recruited.

Tue, 03/23/2021 - 11:06

Stigma in psychogenic nonepileptic seizures

Objective: There is scarce literature on stigma in families living with psychogenic nonepileptic seizures (PNES). Using a cohort of patients with epileptic seizures (ES) and their caregivers as controls, we aimed to quantify the level of patient and caregiver stigma in PNES and identify associations of patient and caregiver characteristics with it. Methods: Patients with PNES and ES and their caregivers completed surveys about demographic, clinical, and psychosocial characteristics.

Wed, 01/13/2021 - 14:34

Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda

Background Nodding syndrome (NS), is an unexplained form of epilepsy which leads to stunted growth, cognitive decline, and a characteristic nodding of the head. Current data about its impact on households in Uganda is scarce. Therefore, this study aims to assess the economic burden of the persistent morbidity of NS on caregivers in affected households in Northern Uganda.

Thu, 11/26/2020 - 17:12

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