LACK OF KNOWLEDGE AND ATTITUDES TOWARD PEOPLE WITH EMILEPSY AMONG HIGH SCHOOL STUDENTS AND THEACHERS IN R. OF MACEDONIA

Lutovska R. M.¹, Belevska J.², Belevska D.³

¹ Master of neurology, psychologist, Centre for counseling and psychotherapy, Skopje, ²Master of clinical psychology, medical doctor, PHI “Dr. Lozankovski”, Skopje; ³Doctor of social science, clinical psychologist, Dean of Faculty of psychology at ISU “G.R. Derzavin”, R. of Macedonia;

LACK OF KNOWLEDGE AND ATTITUDES TOWARD PEOPLE WITH EMILEPSY AMONG HIGH SCHOOL STUDENTS AND THEACHERS IN R. OF MACEDONIA

Abstract

Quality of life of people with epilepsy (PWE), although primarily determined by the duration and course of the disease, and extend of seizures control, is additionally burden with psychosocial consequences due to social stigma that is deeply rooted around epilepsy as a disease, lack of knowledge, stereotypes, prejudices etc. Epilepsy affects 1% of the population worldwide, or 40-50 million persons, and at least 50% of cases begin in childhood or adolescence.  Childhood and adolescence are marked with educational process, so knowledge and attitudes of teachers and classmates are an important component of the educational experiences of children with epilepsy.

The survey was design to provide insights into the knowledge and attitude toward PWE among high school teachers and students in the Republic of Macedonia. It is designed as qualitative transversal study with descriptive aims, using the technique of structured interview. Results confirm lack of knowledge and present negative attitudes. Applicative aim of the study is to confirm the need for informative campaigns and educative programs on this issue targeting high school students and teachers in the R. of Macedonia. 

Keywords: epilepsy, knowledge, attitudes, students, teachers

Introduction

Epilepsy is one of the most prevalent neurological conditions and is universal, knows no age, racial, social class, geographic, or national boundaries ^[1,2]. Large psychological, social and economic burden imposes over person suffering, family system and public health care system ^[1,2,3]. These consequences severely compromised quality of life of people with epilepsy (PWE). Decreased quality of life may be due to the physical hazards of epilepsy resulting from the unpredictability of seizures; the social exclusion as a result of negative attitudes of others toward people with epilepsy; and the stigma. National studies conducted worldwide (USA^[4], UK^[5],Greece^[6], Hungary^[7]) shown lack of information concerning the disease and negative attitudes toward people with epilepsy. Differences in awareness, knowledge and attitudes toward PWE correlating with age, education and personal experience with the disease is shown trough studies conducted in Croatia^[8], Turkey^[9], Bosnia and Herzegovina^[10], New Zeland^[11] etc. Negative attitudes and stigma are important, they contribute to psychosocial burden as children with epilepsy may be banned from school, adults may be barred from marriage, and employment is often denied, even when seizures would not render the work unsuitable or unsafe.

Epilepsy affects 1% of the population worldwide, or 40-50 million persons, and at least 50% of cases begin in childhood or adolescence ^[1]. Childhood and adolescence are marked with educational process, so knowledge and attitudes of teachers and classmates are an important component of the educational experiences of children with epilepsy.  Studies report that students with epilepsy due to several factors are under increased risk of educational difficulties, poor school performance, low self esteem and social isolation ^[12,13,14]. Teacher role is very important, because they have opportunity to affect school achievement and development of students social skills^[12,13,15]. Classmates’ knowledge and attitudes toward epilepsy reflect social inclusion, friendship, self esteem and self image of students with epilepsy.

Little research nave been done in our country focusing on adolescents and teachers, but it is estimated that PWE experience problems with education, marriage, social relations and work. It is known that having irrational beliefs and lack of information regarding epilepsy is one common pattern in resource-poor countries¹⁶. It is therefore important in studies of stigma to focus not only on the person who is stigmatized, but especially on those who do the stigmatizing.

Generally, knowledge and attitudes toward PWE are important component of the educational experiences of adolescences with epilepsy. The aim of this study is to exanimate knowledge and attitudes toward PWE among high school teachers and students in the R. of Macedonia.

Method

The survey was design to provide insights into the knowledge and attitude toward PWE among high school teachers and students in the Republic of Macedonia. It is designed as qualitative transversal study with descriptive aims, using the technique of structured interview. Because of the lack of standardized instrument that measures knowledge and attitudes toward epilepsy, as research instrument was used non standardized, structured questionnaire, designed for the needs of the study. Three psychometric steps are followed in the process of construction of the questionnaire: attribute analysis, elaboration of the instrument and pre-research application. It contains questions about the knowledge of epilepsy; attitudes toward epilepsy and readiness of examinees to be more informed in regards of epilepsy with yes/no/don’t know offered answers. The questionnaire included questions about personal data (age, profession, sex) and several questions applied only to examinees who have personal experience with epilepsy (personal, family member, friend), since they referred to characteristic of the condition, such as type of seizures, medication etc.

Survey population included secondary school teachers and students in the R. of Macedonia from 2 schools with different type of specialization. Schools were randomly selected and included 2 secondary schools – gymnasia and electro as type of specialization, from 2 Macedonian cities – Prilep and Ohrid. In total 400 examinees were included, 35 teachers with mean age 43 years (SD=15) and 365 students from 3^rd and 4^th year of secondary education with mean age 17 years (SD=1).   Survey participation was based on inform voluntary base. It was conducted in September - October, 2014 in the schools.

Descriptive statistical methods were used and intergroup differences were tested with χ² - test for independent samples.

Results

In regards of knowledge of epilepsy, from survey results were obtained following findings: 100% of the teachers and 98% of students have heard about epilepsy, mostly on television 57% of examinees, from friends/relatives 39.7%, internet 33.6% and only 14.4% have read about epilepsy in books or have been informed by educative campaign. 22.2% of the examinees have been witnessing epileptic seizure. That epilepsy is contagious consider 16% of the examinees and 5% have no answer. From those who consider that epilepsy is contagious 44% thinks that is transferred trough blood, 21% trough dirty hands, 18% through sexual contact etc. χ²- test shown significant differences among groups (teachers-students) on level p<0.05, confirming that teachers are more informed of non contagious nature of epilepsy. Furthermore, 42% from examinees don’t know whether PWE should be institutionalized, 43% don’t know whether they have intellectual disabilities and 45,5% don’t know does students with epilepsy should go to specialized schools. On the item PWE are dangerous to surrounding, having imperative hallucinations, 54% of the examinees are not informed, and choose “don’t know” answer. Same “don’t know” answer is chosen from 45% of examinees in regards of epilepsy as obstacles for marriage. Statistical significant difference (p<0.01) is noticed between groups teachers – students, meaning that teachers are more informed than students. More than half of the respondents consider that epilepsy can be treat or controlled with medicaments, while 36% of them consider that epilepsy is untreatable and epileptic seizures cannot be controlled.

Attitudes toward PWE – 31% of the examinees wouldn’t be roommates with PWE, 12% wouldn’t be friends, 31% is possible to be ashamed if family member have epilepsy, and only 9% of the examinees will chose to marry with a partner if he had epilepsy. χ² - test for independent samples showed significant differences among groups in regards of the most items. In upper percentages, teachers are prepared to be associated and to be roommates with PWE, but not to get marry with a partner having epilepsy. Students are less prepared to be friends or roommates with PEW, but on the other hand in higher percentages are ready to be involved with a partner having epilepsy.

Personal experience with epilepsy – none of the examinees have epilepsy, and small percentage (5%) know someone with the diagnosis mostly friends and relatives.

High percentages of the examinees (92%) consider that they are not informed and would like to participate in informative campaigns or educational programs toward improved knowledge about epilepsy.

Discussion

Quality of life of PWE, although primarily determined by the duration and course of the disease, and extend of seizures control, is additionally burden with social stigma that is deeply rooted around epilepsy as a disease. Stigma concerning all PWE regardless of age, and even high school students with the disease are not spared from it. Stigma is determined not only by the actual characteristics of the disorder but also by social stereotypes concerning it, created by lack of information, misconceptions, and unfounded fears. In the case of epilepsy, stigma seems to be largely based on the public perception of epilepsy as a disease that is incurable and affects the patient’s personality, mental abilities etc. To deal with these problems, systematic study of the public knowledge and attitude toward epilepsy is the necessary first step. Most of the studies concerning this issue are focused on general population, students and adolescents are less investigated population. Children and adolescents with epilepsy are in everyday contact with their classmates and teachers. Thus, knowledge and attitudes of students and teachers is important in the process of positive social and educational experience of students with epilepsy, as well as for their life quality. This insight motivated our study.

Among similar studies conducted on these issue ^{[12- 14,17-22]} is Italian research^[21] including 600 teachers from primary and secondary schools showing that 33% considered epilepsy a moderate-to-strong limitation for marriage, 24.6% for having children, 39.7% for regular employment, and 32.8% for sports and leisure activities. Among the teachers, 66.4% declared they were unable to manage a seizing child, 24.7% were convinced that epilepsy impairs learning, 26.0% believed that it carries mental/behavioral alterations, and 36.4% thought it requires support at school. In similar Czech study including 193 teachers from elementary schools was found that teachers with personal experience of epilepsy had greater knowledge of the illness, mostly in terms of their views on the self-realization and the integration of children with epilepsy into the school collective ^[18].

Our study shown lack of information for medical aspects of the disease, (16% consider epilepsy for infectious disease, epilepsy is burden with mental disability 43%, people with epilepsy have imperative hallucinations) as well as social aspects of care (need for institutionalized care – 42%, 45,5% – special schools, 45%- obstacle for marriage). Teachers and students shown negative attitudes toward epilepsy (31% wouldn’t be roommates with PWE, 12% wouldn’t be friends).

Study confirm lack of informative campaigns or educative programs that will increase knowledge of epilepsy among high school students and teachers, that will help to overcome social stereotypes and prejudices and to correct attitudes toward students and classmates with epilepsy. The fact that 92% of the examinees are willing to participate in educative program and consider that there is a need for informative campaign is good motivation for further exploration of the issue among this target group.

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