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The trend in public attitudes in the Czech Republic towards personswith epilepsy
I. Novotna and I. RektorFirst Department of Neurology, Masaryk University, St Anne’s Hospital, Brno, Czech Republic
Keywords:
attitudes, epilepsy, public,
questionnaire
Received 2 May 2002
Accepted 20 June 2002
This study evaluates trends in public familiarity with and attitudes towards people
with epilepsy over a 16-year time-period. A survey exploring the Czech public’s atti-
tudes towards and knowledge of epilepsy used a modified version of a questionnaire
first used in the USA in 1949, and in the Federal Republic of Germany beginning in
1968. This survey was carried out for the first time in the Czech Republic (then
Czechoslovakia) in 1981, and then again in 1984. There was no significant difference
between the 1981 and 1984 responses. A slightly modified questionnaire was used in
1997–1998, with evaluable responses gathered from 235 people. In comparison with
the 1981 study, people’s acquaintance with epilepsy was significantly higher in 1997–
1998. In 1997–1998, about 94% of the people surveyed had some information about
epilepsy (78% in 1981). Intolerance towards children with epilepsy dropped from 29 to
13%. About 30% of the people surveyed considered epilepsy to be a mental disease
(50% in 1981). Employment of people with epilepsy was recommended by 74% (42%
in 1981). In contrast with the situation about 16 years earlier, there were fewer
important differences from the results of similar surveys taken in other European
countries. However, the answers concerning the willingness to help a person having a
seizure show that, despite certain progress, the quality of information that the Czech
population has is not fully satisfactory.
Introduction
Increasing attention is being paid to the psychosocial
problems of various patient groups. For many chroni-
cally ill people, these problems often become a greater
burden than the illness itself. Public attitude is a deci-
sive factor for fluid and uncomplicated incorporation
into �normal life�. Issues of social relations, which defi-
nitely influence the lives of people suffering from epi-
lepsy, are very important. Epilepsy is a widespread
disease which, because of its clinical appearance and
unpredictable seizures, can endanger a patient as well as
frighten the people around him or her. Public attitudes
have been studied in the USA since 1949, in the Federal
Republic of Germany since 1968 (Caveness et al., 1969;
Hauck, 1969; Finke, 1981; Thorbecke and Rating,
1996), and later, using similar methods, in some other
countries (Canger and Cornaggia, 1985; Kobylinska
and Pawlak, 1987; Jensen and Dam, 1992; Mirnics
et al., 2000).
We started to study public attitudes towards epilepsy
in the early 1980s. No significant differences were found
between the studies in South Moravia in 1981 (Rektor
et al., 1983) and in South Bohemia in 1984 (Svejdova
et al., 1987). The Czech results were also compared with
the results of a similar study carried out in Germany in
1978 (Svejdova et al., 1987). We evaluated respondent
familiarity with epilepsy within individual categories of
the response collection in 1981 and 1984 in the Czech
Republic and in 1978 in the Federal Republic of Ger-
many with following conclusions:
In the Czech Republic, 22% of the people surveyed
were not familiar with the concept of �epilepsy� at all;
this observation was statistically more significant in the
Czech Republic in 1981 and 1984 than in Germany in
1978 (10%). One important finding was the low or even
non-existent influence of school education on familiar-
ity with epilepsy; also, there was a significant difference
between the inhabitants of Brno and those of smaller
cities.
Public intolerance of children with epilepsy was
slightly lower than in Germany (23%); however, the
attitudes towards children with epilepsy, at 29% intol-
erance, was not generally satisfactory.
Half of the people surveyed considered epilepsy to be
a mental disease (Germany, 23%); 58% of them had a
negative attitude regarding the equal right to employ-
ment for people with epilepsy (Germany, 20%). The
public in the South Moravian region was less informed
about epilepsy than the German public. The South
Moravian group’s information was insufficient and
often incorrect. Only a small number of the people
Correspondence: Dr. Ivan Rektor, First Department of Neurology,
St Anne’s Hospital, Pekarska 53, 656 91 Brno, Czech Republic
(fax: +420-5-43182624; e-mail: [email protected]).
� 2002 EFNS 535
European Journal of Neurology 2002, 9: 535–540
surveyed gathered their information from the mass
media or medical training. Over the intervening 16
years, some effort was made to increase the level of
information about epilepsy, and important social
changes occurred in the Czech Republic. We decided to
repeat the study in order to evaluate the trend in public
attitudes towards people with epilepsy.
Materials and methods
The Czech questionnaire was distributed randomly to
persons in the waiting room of the Second Dentistry
Department of Brno University Medical School
between November 1997 and January 1998 (Table 1).
The 1981 study was carried out in the same room
under identical conditions. Before the questionnaire
was distributed, the administrative personnel asked
whether the potential respondent was trained in
health services, had epilepsy, or had people with epi-
lepsy in their immediate family. These people were not
accepted in the study. No other exclusion criteria were
applied. The questionnaire was self-administered. All
questionnaires were sorted according to the answer
to the first question. Only questionnaires that included
a positive answer to the first question were further
evaluated.
Table 1 The questionnaire which was put to patients of The Second Dentistry Department of the Brno University Medical School from November
1997 to January 1998. The original version is in Czech
QUESTIONNAIRE
Please read carefully the whole text.
Circle your correct answer.
This questionnaire is anonymous; do not sign it.
A. Information about your background
(1) Age (years)
(1) 14–19 (2) 20–29 (3) 30–49 (4) 50–64 (5) Above 65
(2) Completed education
(1) Basic (2) Trained (3) Secondary (4) University
(3) Occupation
(1) Worker (3) Teacher (5) Clerk, civil servant (7) Pensioner, housewife
(2) Farmer (4) Other educated
class
(6) Businessman (business
area)
(8) Other (give a name)
(4) Sex
(1) Male (2) Female
(5) Domicile
(1) Brno (2) Other town (3) Village
B. Questions
In case of agreement, please circle �yes�, in case of disagreement, circle �no�.Q1. Have you ever heard or read about the disease called �epilepsy�(1) Yes (2) No
Q2. Would you object to having any of your children in school or at play associate with persons who sometimes had seizures?
(1) Yes (2) No
Q3. Do you think that epilepsy is a form of mental disease?
(1) Yes (2) No
Q4. Do you think epileptics should or should not be employed in jobs like other people?
(1) Yes (2) No
Q5. Persons with epilepsy sometimes experience seizures (e.g. in public transportation, on the street, at the workplace and so on). Do you think that
other people are willing to help them?
(1) Always (2) Mostly yes (3) Mostly no (4) No (5) I do not
know
Q6. Which are the causes of the fact that people do not help persons experiencing seizures?
(1) insufficient knowledge about epilepsy (4) Fear of unpro-
fessional help or
responsibility
(2) Indolence (5) Fear of suffering
(3) A difficulty to differentiate the seizure (6) I do not know
from other phe-
nomena (drunk-
enness, drugs,
etc.)
Q7. Please circle where you obtained the above-mentioned information
(1) Broadcast (3) Reading (5) Family (7) Conversation with friends
(2) Television (4) Lecture (6) Work (8) I do not know
536 I. Novotna and I. Rektor
� 2002 EFNS European Journal of Neurology 9, 535–540
A survey exploring the Czech public’s attitudes
towards and knowledge of epilepsy was based on a
modified version of a questionnaire first used in the
USA in 1949, and in the Federal Republic of Ger-
many beginning in 1968 (Caveness et al., 1969;
Hauck, 1969; Finke, 1981). In the Czech Republic,
the survey was carried out for the first time in 1981
in the South Moravian region with 387 respondents
(Rektor et al., 1983), and was repeated in the South
Bohemian region in 1984, with 283 respondents
(Svejdova et al., 1987). There were no significant
differences between the results of the 1981 and 1984
Czech studies. A slightly modified version of the
questionnaire was used again in South Moravia in
1997–1998, with evaluable responses from 235 people.
As the aim of this study was to compare the results
of the current questionnaire with those from the
study in 1981, the questionnaires were nearly identi-
cal: we did not incorporate many of the additional
questions that are included in several newer ques-
tionnaires (Jensen and Dam, 1992; Mirnics et al.,
2000). Only two questions, concerning the willingness
to help a person having a seizure, were added to the
original five questions. To evaluate the results, the
following main points were selected:
1 familiarity with the concept of epilepsy (individual
categories were divided according to age, education
and residence),
2 tolerance towards children with epilepsy,
3 impression that epilepsy is a mental disease,
4 attitudes towards employment of people with epi-
lepsy,
5 sources of information about epilepsy,
6 willingness and ability to help people suffering from
epileptic seizures,
7 reasons that help for a person having a seizure may
not be given by the public.
In connection with the increasing concern regarding
the psychosocial problems of people with epilepsy, the
repeat of the study was an attempt to evaluate trends
in public acquaintance with and attitudes towards
people with epilepsy over a 16-year time-period.
To compare the results amongst respondents during
1981 and 1997–1998, a test of homogeneity of binomial
distribution was used in individual questions Q1–Q4
(Table 2) (Andel, 1993).
Table 1 Continued
No. ofQ1 Q2 Q3 Q4
responses Yes (%) No (%) Yes (%) No (%) Yes (%) No (%) Yes (%) No (%)
Total 235 94 6 13 87 29 71 74 26
Age (years)
14–19 20 95 5 15 85 26 74 70 30
20–29 66 95 5 14 86 19 81 80 20
30–49 78 91 9 8 92 26 74 81 19
50–64 54 96 4 13 87 39 61 61 39
Over 65 17 88 12 31 69 53 47 69 31
Completed education
Basic 19 95 5 33 67 47 53 72 28
Trained 53 81 19 18 82 31 69 71 29
Secondary 120 97 3 9 91 27 73 78 22
University 43 98 2 9 91 26 74 68 32
Occupation
Worker 39 79 21 13 87 32 68 57 43
Farmer 7 57 43 29 71 43 57 71 29
Teacher 12 100 0 8 92 33 67 75 25
Other educated class 49 100 0 6 94 26 74 83 17
Clerk, civil servant 37 100 0 14 86 26 74 69 31
Businessman 22 86 14 5 95 24 76 90 10
Pensioner, housewife 31 100 0 26 74 45 55 68 32
Other 34 97 3 12 88 18 82 82 18
Sex
Male 90 85 15 14 86 36 64 69 31
Female 145 98 2 12 88 25 75 77 23
Domicile
Brno 132 97 3 8 92 29 71 78 22
Other town 57 95 5 9 91 36 64 72 28
Village 45 92 8 30 70 21 79 65 35
Attitudes towards epilepsy 537
� 2002 EFNS European Journal of Neurology 9, 535–540
Results
Of the 250 questionnaires distributed, there were 235
evaluable responses. The profile of the respondent
group, divided into categories by age, sex, education
and residence, did not differ significantly from the 1981
and 1984 groups.
The responses to the questions 1–4 are shown in
Table 1 (Continued).
People acquired information about epilepsy by
reading (22%), listening to the radio (15%), watching
television (13%) and from special lectures (5%). The
data indicated that 55% of people obtained their
information from the mass media; 45% obtained their
information randomly (see Table 1, Q8, points 5–8).
When asked whether people would be willing to
help a person suffering from a seizure, 3% answered
�always�; 48%, �mostly yes�; 30%, �mostly no�; 2%, �no�;and 17%, �I do not know�. Respondents listed insuffi-
cient knowledge of appropriate help (33%), an apa-
thetic attitude towards handicapped people (15%),
difficulty identifying the attack (25%), fear of providing
unprofessional help or of bearing responsibility (18%),
fear of getting hurt (6%) and inability to differentiate
an epileptic seizure from drunkenness (3%) as the cause
of unwillingness or hesitation to help a person having a
seizure.
Acquaintance with epilepsy and tolerance of the
disease were generally higher in larger cities, and in-
creased in proportion to the education of the people
surveyed.
Discussion
The present study was carried out in South Moravia
under conditions that were as identical as possible to
the one in 1981. The formulations of the four questions
about the information level and of the one question
about the information sources were not changed. A
questionable point of our study is the representative
quality of the studied sample. It is true that the sample
was not constructed based on the demographic struc-
ture of the general population. On the other hand, by
using identical conditions of random choice as in the
1981 study, we obtained a group composed of respon-
dents with varied social, educational, age, and resi-
dential profiles, which is fully comparable with the
group obtained in 1981. The 1984 study was performed
in another region, but it did not bring statistically dif-
ferent results. We consider the fact that the results in
the 1981 and 1984 studies were constant as an argument
in favour of a certain representative quality of our
studies. Our results may also be influenced by that fact
that the inhabitants of a large urban area (Brno:
400 000 inhabitants), with a more positive attitude than
the respondents living in smaller communities, were
represented by 56% of respondents. Nevertheless, this
proportion was similar in the 1981 study.
The results of the latter study show an important
positive shift in the public attitude towards people
with epilepsy (Fig. 1). In 1997–1998, about 94% of the
people surveyed had some information about epilepsy,
i.e. about 16% more than in 1981. Teachers (100%) and
other professionals were amongst the best informed.
Approximately 42% of farmers and 20.5% of manual
workers were not familiar with the concept of epilepsy
at all.
The tolerance of children with epilepsy was also
approximately 16% higher. About 30% of the people
surveyed considered epilepsy to be a mental disease.
Employment of people with epilepsy was recommended
by 74% (mostly by those with a secondary education,
at 78%). About 25% of the people had a negative
attitude towards the equal right to employment for
people with epilepsy (42% in 1981). Acquaintance and
toleration were higher in larger cities, and increased in
proportion to the education of the people surveyed.
The best-informed group consisted of people 50–
65 years old, then amongst people with secondary and
university education, then amongst females and then
Brno residents. Interestingly, the best-informed group
was formed more or less from the same people as in
the survey 16 years ago, because at that time the
best-informed group was that of people 35–50 years
old. There was a lower level of acquaintance amongst
people over 65 years, trained, men and village
Table 2 Comparison of results using statistical test of relative frequencies (a test of homogeneity of binomial distribution)
No. ofQ1 Q2 Q3 Q4
responses Yes (%) No (%) Yes (%) No (%) Yes (%) No (%) Yes (%) No (%)
Total 1981 372 78 22 29 71 50 50 42 58
Total 1997–1998 235 94 6 13 87 29 71 74 26
Difference +16 )16 )21 +32
Significant statistical difference
(significant level ¼ 0.01)
Yes Yes Yes Yes
538 I. Novotna and I. Rektor
� 2002 EFNS European Journal of Neurology 9, 535–540
inhabitants. About 6.4% were not at all familiar with
the concept of epilepsy.
Compared with the study from 1981, public acqua-
intance with epilepsy is generally significantly higher.
Nevertheless, the proportion of respondents with
insufficient information and a negative attitude towards
people with epilepsy is far from negligible. It is evident
that further effort must be made in order to improve the
social status of people with epilepsy.
When asked whether people would be willing to help
a person suffering from a seizure, 51% answered posi-
tively. The people surveyed most frequently listed
insufficient knowledge of appropriate help, difficulty in
identifying an epileptic seizure and fear of bearing
responsibility as the reason for their hesitation. In any
case, the answers concerning the willingness to help a
person having an epileptic seizure show that, despite
certain progress of the quality of information that the
Czech population has is unsatisfactory.
The results of the most recent survey were compared
with those of recent questionnaire studies in other
countries that included some similar questions (Fig. 2).
Unlike the situation 16 years earlier, the Czech results
were more similar to the results from other European
Figure 2 Comparison of survey results in
1997–1998 South Moravia, other Euro-
pean countries (the question about
�Epilepsy as a mental disease� was not
mentioned in the questionnaire in
Denmark).
Figure 1 Comparison of survey results
in South Moravia: 1981, 1997/1998.
Attitudes towards epilepsy 539
� 2002 EFNS European Journal of Neurology 9, 535–540
countries (Denmark 1992; Germany 1996). The positive
change of public attitudes towards persons with
epilepsy was observed in Hungary from 1994 to 2000
(Mirnics et al., 2000).
The improved and more broad-minded attitude
towards people with epilepsy probably stems from the
changes in the social climate that have developed since
1989.
One factor positively influencing the knowledge of
the population might be a general increase in the public
ability to acquire and work with information. In 1981
and 1984, the information sources in Czechoslovakia
were limited and fully controlled by the government. In
1997–1998, there was an open society, with a free press.
This hypothesis is supported by the fact that the Czech
profile is now similar to that of Western Europe in
terms of the press, although it was very different
16 years earlier. However, the increase of the know-
ledge of what a �politically correct� answer is could also
play a role.
The second factor could be a systematic effort to
provide more information concerning epilepsy. The
publication of our first study was followed by a con-
siderable increase in the amount of information about
epilepsy in the mass media. Both professional and non-
professional associations, e.g. the Czech League
Against Epilepsy, the common patients health carrier
non-profit organization �Epi-Stop�, and a patient self-
help organization called �Society E� participated in
these important activities. Nevertheless, our data indi-
cate that only about 55% of respondents acquired their
information from the mass media, i.e. the same amount
as in 1981. The role of the mass media in broadcasting
useful information is still underestimated. Therefore,
subsequent informative activities should be aimed at
the comprehensive provision of information about the
basic and typical symptoms of epilepsy, as well as
about suitable ways to help people with epilepsy.
In conclusion, despite evident progress, the attitude
towards epileptics shows a lack of sufficient under-
standing, especially towards children and equal rights
employment.
A part of data was published in Czech (Novotna
et al., 2000).
Acknowledgements
This study is part of Research Plan MSCR 112801.
Supported by Yamanouchi European Foundation.
Thanks to Prof. Ivo Mozny for advices.
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