Kids' perception about epilepsy.
ABSTRACT Epilepsy remains a stigmatized condition. Lack of information has been pointed to as a cause of the perpetuation of stigma. Our goal was to survey children's perception of epilepsy.
We used a questionnaire to determine if the children knew what epilepsy is and, if they did not know, what did they think epilepsy is. Twenty-nine children (15 girls; mean age 10 years, range 9-11 years) from a fourth-grade class of an elementary school in Campinas, Sao Paulo, Brazil, completed the questionnaires individually at the same time in the classroom. This took about 20 minutes.
Only four children said they knew what epilepsy is: a disease of swallowing the tongue (3) and a disease that can kill (1). The perceptions of children who said they did not know what epilepsy is were: a disease that can kill, a disease of swallowing the tongue, a contagious disease, a serious illness, a head injury. Three children knew someone with epilepsy, and only two of them had said they knew what epilepsy is.
The perceptions elicited from the children had a negative connotation; only one child mentioned a relationship between epilepsy and the brain. The spontaneous thoughts of children in this age group, without the contamination of political correctness, may reflect society's collective unconsciousness of the prejudice toward epilepsy and people with epilepsy and needs to be further investigated. Continuous, repetitive educational efforts are necessary in elementary school to change these negative perceptions of epilepsy in our society.
[show abstract] [hide abstract]
ABSTRACT: Epilepsy is the most prevalent non-communicable serious neurological condition worldwide. Unfortunately, the majority of people with epilepsy in low-income countries do not receive appropriate treatment. Stigmatisation is the rule. In this setting, the World Health Organisation, the International League against Epilepsy and the International Bureau for Epilepsy launched the Global Campaign against Epilepsy in 1997. This entered its second phase in 2001 and as part of it has set up demonstration projects in the People's Republic of China, Zimbabwe, Senegal and, more recently, in Brazil. The objective of the demonstration projects is to show, through methodological evaluation, that it is possible to establish a model of treatment for people with epilepsy in primary health care settings. The Brazilian demonstration project has targeted regions in Campinas and S o Jose do Rio Preto, both in Sao Paulo State. A task force has been established to assess strategies to expand this project nationwide.Arquivos de Neuro-Psiquiatria 04/2003; 61(1):153-6. · 0.72 Impact Factor
Article: People with epilepsy: what do they know and understand, and how does this contribute to their perceived level of stigma?[show abstract] [hide abstract]
ABSTRACT: Understanding the factors that contribute to the process of stigmatization of those with epilepsy may be an important element in the management of this condition. This study was designed to determine the contribution of clinical, demographic, and psychosocial variables to the stigma of epilepsy in adults. More than 6000 adults from 10 European countries were surveyed. Almost half of respondents reported that they had difficulty accepting their illness, and 17% felt stigmatized by it. A number of factors were predictive of stigma, including seizure frequency, knowledge of epilepsy, duration of epilepsy, and seizure type. The relative contributions of these factors varied depending on the country of origin of those surveyed. Further research is warranted to determine societal influences on the process of stigmatization.Epilepsy & Behavior 01/2003; 3(6S2):26-32. · 2.34 Impact Factor
Article: The psychosocial burden of epilepsy.Epilepsia 02/2002; 43 Suppl 6:26-30. · 3.96 Impact Factor
Kids? perception about epilepsy
Paula T. Fernandesa,b, Paula Cabralc, Ulisses Arau ´joc,
Ana Lu ´cia A. Noronhaa,b, Li M. Lia,b,*
aDepartment of Neurology, State University of Campinas (UNICAMP), Campinas/SP, Brazil
bDepartments of Psychology and Education, Assiste ˆncia a ` Sau ´de de Pacientes com Epilepsia (ASPE), Campinas/SP, Brazil
cFaculty of Education, UNICAMP, Campinas/SP, Brazil
Received 24 January 2005; revised 22 February 2005; accepted 23 February 2005
Available online 5 April 2005
Purpose. Epilepsy remains a stigmatized condition. Lack of information has been pointed to as a cause of the perpetuation of
stigma. Our goal was to survey children?s perception of epilepsy.
Methods. We used a questionnaire to determine if the children knew what epilepsy is and, if they did not know, what did they
think epilepsy is. Twenty-nine children (15 girls; mean age 10 years, range 9–11 years) from a fourth-grade class of an elementary
school in Campinas, Sao Paulo, Brazil, completed the questionnaires individually at the same time in the classroom. This took about
Results. Only four children said they knew what epilepsy is: a disease of swallowing the tongue (3) and a disease that can kill (1).
The perceptions of children who said they did not know what epilepsy is were: a disease that can kill, a disease of swallowing the
tongue, a contagious disease, a serious illness, a head injury. Three children knew someone with epilepsy, and only two of them had
said they knew what epilepsy is.
Conclusion. The perceptions elicited from the children had a negative connotation; only one child mentioned a relationship
between epilepsy and the brain. The spontaneous thoughts of children in this age group, without the contamination of political cor-
rectness, may reflect society?s collective unconsciousness of the prejudice toward epilepsy and people with epilepsy and needs to be
further investigated. Continuous, repetitive educational efforts are necessary in elementary school to change these negative percep-
tions of epilepsy in our society.
? 2005 Elsevier Inc. All rights reserved.
Keywords: Epilepsy; Knowledge in school; Stigma; Prejudice
Epilepsy is a common neurological condition that af-
fects people of all ages, races, and social status. Through
history, epilepsy had been considered a stigmatized con-
dition [1–5]. Unfortunately this remains true today de-
spite progress in medical science, as the diagnosis of
epilepsy can still have a profound social and psycholog-
ical impact on patients and their families because of oth-
ers? lack of information.
This lack of information has been indicated as an
important factor in stigma perpetuation [6,7]. Interest-
ingly, surveys in developing countries [8–11] with differ-
ent cultures reveal common beliefs, for example, that
epilepsy is a contagious illness or a kind of mental retar-
dation [12–14]. In addition, some people do not know
what to do with a person during an epileptic seizure,
which promotes a feeling of impotence and reinforces
the misconception that epilepsy has no treatment.
1525-5050/$ - see front matter ? 2005 Elsevier Inc. All rights reserved.
*Corresponding author. Fax: +55 19 37887483.
E-mail addresses: firstname.lastname@example.org, email@example.com (L.M.
URL: http://www.aspebrasil.org (L.M. Li).
Epilepsy & Behavior 6 (2005) 601–603
Information campaigns have had little effect on
reducing stigma . There may have been an increase
in ‘‘politically’’ correct attitudes rather than real changes
in society?s perception. In this regard, prejudice has
more roots than reason (Machiavelli), and assessment
of basic perceptions, should be carried out in the ab-
sence of political correctness. Thus, evaluation of chil-
dren?s perceptions should reflect raw social perceptions
derived from elementary information from the family
and the local social environment without contamination
by political correctness. The objective of this explorative
study, part of the National Demonstration Project of
the Global Campaign ‘‘Epilepsy Out of the Shadows’’
in Brazil , is to survey children?s perceptions of
We used a questionnaire requesting basic personal
information (age and gender) and asking two questions
1. Do you know what epilepsy is?——yes——no
If you answered yes, what is epilepsy for you?
If you answered no, what do you think epilepsy is?
2. Do you know anyone with epilepsy?——yes——no
If you know, who is this person?
One of us (P.C.) administered the questionnaire to 29
children (15 girls; mean age 10 years, range 9–11 years).
All of them were from a fourth grade class of a public
elementary school in Campinas, Sa ˜o Paulo, Brazil. This
school was chosen because it is typical of the public
schools in this city. It follows the national standards
of education. The students were, on average, from low-
er-middle socioeconomic status families and attended
school for 4 hours each day. We chose the fourth grade
because it comprises the youngest children capable of
expressing themselves adequately in writing and reflect-
ing social perceptions.
The questionnaires were completed individually at
the same time in the classroom. The questions were read
by the researcher, and the children wrote their answers
on a piece of paper without consulting each other or
any other source. The process took about 20 minutes.
After this survey, the researcher carried out educational
activities with these children to improve their knowledge
Only four children (13.8%) said they know what
epilepsy is: a disease of swallowing the tongue (3) and
a disease that can kill (1).
The perceptions of those children who said they did
not know what epilepsy is are summarized in Table 1.
Only three children (10.3%) knew someone with epilepsy
(neighbors); two of them had said they know what epi-
In this study, the perceptions observed among the
children had a negative connotation. Only one child
mentioned epilepsy in relation to the brain (head injury).
Knowing someone with epilepsy did not necessarily im-
prove their knowledge or perception. Interestingly, we
detected in this small group common perceptions: a dis-
ease that can kill, swallowing the tongue, and conta-
giousness. The spontaneous thoughts of this age
group, in the absence of political correctness, may reflect
society?s collective unconsciousness of prejudice toward
epilepsy and people with epilepsy. These features should
be further investigated.
Another point in this study is related to what epilepsy
represents, which, to some extent, was expressed by the
children as either its causes (head injury, contagious) or
its consequences (death, swallowing the tongue); this
illustrates that our community is not familiar with epi-
lepsy, which, in turn, can lead to perpetuation of stigma
This exploratory study can guide future studies with
larger samples in different social strata to provide more
definitive answers in this area. Nevertheless, we con-
clude from our results that any information campaigns
should target young age groups as the misperceptions
are there, as is the opportunity to change them .
This, however, will require continuous and repetitive
educational efforts in elementary schools.
In Brazil, after an initiative by the ASPE (executor of
National Demonstration Project), the theme of epilepsy
has been included in a major educational program of the
Ministry of Education that involve more than 26,000
schools in Brazil. We are planning educational activities
related to citizenship, ethics, and health subjects. This
proposed intervention has as its objective introduction
of the theme of epilepsy into the different disciplines of
Perceptions of children about epilepsy
Disease that can kill
I don?t know
Disease of swallowing the tongue
Only a disease
aTotal = 25.
Brief Communication / Epilepsy & Behavior 6 (2005) 601–603
the curriculum, trying to discuss not only the biological
aspects of the condition but also the daily psychosocial
problems faced by people with epilepsy. The overall ef-
fort is to bring global awareness of the issue in the con-
text of health and citizenship in our society.
The long term changes remain to be seen, and we
hope this selective action improves the understanding
of stigma and is a major step toward bringing epilepsy
out of the shadows.
Study supported by FAPESP 02/11871-8.
 Li LM, Sander JW. National demonstration project on epilepsy in
Brazil. Arq Neuropsiquiatr 2003;61:153–6.
 Fernandes PT, Souza EA. Identification of family variables in
parents? groups of children with epilepsy. Arq Neuropsiquiatr
 Meinardi H, Scott RA, Reis R, Sander JW. The treatment gap in
epilepsia: the current situation and way forwards. Epilepsia
 Jallon P. Epilepsy in developing countries: ILAE workshop
report. Epilepsia 1997;38:1143–51.
 Fernandes PT, Souza EA. Perception of epilepsy stigma in
fundamental school teachers. Estud Psicol 2004;9:189–95.
 Baker GA. People with epilepsy: what do they know and
understand, and how does this contribute to their perceived level
of stigma? Epilepsy Behav 2002;3:26–32.
 Schneider JW, Conrad P. Having epilepsy: the experience and
control of illness. Philadelphia: Temple Univ. Press; 1983.
 Baker G. The psychosocial burden of epilepsy. Epilepsia
 DiIorio C, Osborne Shafer P, Letz R, Henry T, Schomer DL,
Yeager K. The association of stigma with self-management and
perceptions of health care among adults with epilepsy. Epilepsy
 Ablon J. The nature of stigma and medical conditions. Epilepsy
 Jacoby A. Stigma, epilepsy, and quality of life. Epilepsy Behav
 Baker GA, Jacoby A, Buck D, Stalgis C, Monnet D. Quality of
life of people with epilepsy: a European study. Epilepsia
 Gumnit RJ. Living well with epilepsy. New York: Demos
 Devinsky O, Penry JK. Quality of life in epilepsy: the clinician?s
view. Epilepsia 1993;34:s4–7.
 Stuart HMA. Stigma and stigma reduction: lessons learned. Sante
Ment Que 2003;28:54–72.
 MacLeod JS, Austin JK. Stigma in the lives of adolescents with
epilepsy: a review of the literature. Epilepsy Behav 2003;4:112–7.
Brief Communication / Epilepsy & Behavior 6 (2005) 601–603