Elsevier

Epilepsy & Behavior

Volume 14, Issue 1, January 2009, Pages 71-77
Epilepsy & Behavior

Do knowledge of, perception of, and attitudes toward epilepsy affect the quality of life of Turkish children with epilepsy and their parents?

https://doi.org/10.1016/j.yebeh.2008.08.011Get rights and content

Abstract

The main goal of this study was to evaluate knowledge of, perceptions of, and attitudes toward epilepsy and then to correlate knowledge with quality of life and stigmatization of children with epilepsy and their families. Specific questionnaires were administered to children aged 8 to 17 with epilepsy (n = 220) and their parents (n = 313). Poor school performance, less social support, less self-esteem, higher anxiety, greater stigmatization, and more depressive symptoms were documented in children who were less knowledgeable (P < 0.05). Parents were found to be more knowledgeable about the antiepileptic drugs used, understanding both the effects and the side effects of the medications (P < 0.05). Family activities were less restricted if they were more knowledgeable and these parents reported worrying less about their children (P < 0.05). Knowledge about epilepsy is associated with less perceived stigmatization and social isolation, as well as fewer depressive symptoms and misperceptions.

Introduction

Knowledge regarding epilepsy may be important in reducing the impact of seizures, potentially harmful self-management practices, and the emotional impact of both seizures and treatment; increased knowledge may lead to an improvement in quality of life not only for patients but also their families [1], [2], [3], [4], [5], [6], [7], [8]. Therefore, knowledge is a vital factor in improving the ability to cope successfully with epilepsy by minimizing its impact on social and psychological functioning [7].

Coping with the child’s condition can have significant emotional and social impact, and this burden is reflected in the increased incidence of stress-related illnesses among the families of children with epilepsy [1], [5], [8]. Therefore, it is not surprising that both the condition and its treatment compromise the quality of life of children with epilepsy [2], [4]. For these reasons and many others, there has been an upsurge of interest in devising strategies—beyond antiepileptic drugs—to enhance quality of life for patients and their families [1], [5]. Knowledge about epilepsy would be helpful in diminishing the perceived stigmatization, or feelings of social isolation, reported by children who have epilepsy and their families [3]. Researchers and clinicians who wish to develop and implement such strategies must first familiarize themselves with the stigmatization, both actual and perceived, that accompanies epilepsy [6].

The primary objectives of this study were, first, to evaluate knowledge of, perception of, and attitudes toward epilepsy and, second, to correlate this information with quality of life and stigma among children with epilepsy and their families.

Section snippets

Subjects

The study was performed at the Department of Pediatric Neurology, Gazi University Faculty of Medicine, from January 2006 to December 2007 and involved 220 children with epilepsy (between 8 and 17 years of age) and their parents (n = 313).

Patients with epilepsy (having at least two unprovoked seizures) diagnosed by a pediatric neurologist and regularly followed in our pediatric neurology department were included in the study. Children with intellectual impairment, an IQ score lower than 80 on the

Results

The mean age was 13.5 ± 3.2 years for children and 38.5 ± 6.8 years for parents. Table 1, Table 2 summarize sociodemographic characteristics of the patients and their parents, respectively.

Discussion

Epilepsy is a common neurological condition that affects people of all ages, races, and social status [8], [9]. Lack of information has been suggested as causing the perpetuation of stigma, negative attitudes, it appears to be an incomplete thought [1], [2], [3], [5], [8], [9]. Furthermore, patients with epilepsy often report that the quality of life is compromised by the disease [1], [2], [3], [5], [8], [9].

Knowledge about epilepsy is a vital factor in improving the ability to cope

Conclusion

To our knowledge, our study is the first in Turkey to investigate both children with epilepsy and their parents with respect to knowledge of, attitudes toward, and perception of epilepsy. Like other studies in this field, our findings strongly support a need for greater education of children who have epilepsy and their parents. Those who learn how the disease affects their lives seem better able to decrease the perceived stigmatization, anxiety, depression, and social isolation associated with

Ethical approval

We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Conflict of interest statement

We are not supported by any government agency, private industry, or foundation.

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