Changes in Public Attitudes Toward Epilepsy in Hungary: Results of Surveys Conducted in 1994 and 2000

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1 Epilepsia, 42(1):86 93, 2001 Blackwell Science, Inc. International League Against Epilepsy Clinical Research Changes in Public Attitudes Toward Epilepsy in Hungary: Results of Surveys Conducted in 1994 and 2000 *Zsuzsanna Mirnics, *Györgyi Czikora, Tibor Závecz, and *Péter Halász *National Institute of Psychiatry and Neurology, Epilepsy Center, and Szonda-Ipsos, Budapest, Hungary Summary: Our study investigated public attitudes toward epilepsy, and knowledge and understanding of epilepsy in Hungary. We compared changes of public attitudes in the last six years, hypothesizing a trend of positive changes because of recent national initiatives for acceptance and integration of people with epilepsy (e.g., participation of Hungary in the Out of the Shadows world campaign). We also studied how the demographic background of the respondents affects awareness, understanding, and attitudes toward epilepsy. Using a questionnaire design, we conducted a public opinion poll with a representative sample of 1,000 people in 1994 and 6 years later, in Hungarian respondents were most prejudiced regarding employment of people with epilepsy. In recent years, significant decreases in prejudice rates were found regarding all attitude aspects (marriage, children associating, work). Significant background effects of demographic variables were also apparent: differences by age, education, residence, and family status were found. Some culture-specific characteristics of understanding epilepsy could be observed. Significant positive attitude changes from 1994 to 2000 confirm the need for and potentialities of education of the public and informational initiatives. Demographic influences and culture-specific characteristics could be of relevance in designing public education for different target groups. Key Words: Epilepsy Awareness Attitudes Public opinion poll Psychosocial. It is well known that people with epilepsy are socially discriminated against on the ground of widespread negative public attitudes, misconceptions, and defensive behavior. The most frequent false beliefs are related to mental illness, retardation, and emotional disturbances in the patients. Measuring awareness, the understanding of, and attitudes toward epilepsy in a society is a necessary first step in eliminating discrimination. Since the 1940s, nationwide surveys have been conducted in numerous countries, including United States, Germany, Denmark, Finland, Italy, China, and Taiwan (1 9) but never in Hungary until 1994, and 6 years later, in (Findings of the 1994 survey have not been previously published in full.) We expected a change in attitudes toward epilepsy because national initiatives for acceptance and integration of people with epilepsy as well as epilepsy rehabilitation in Hungary have been dynamically developing in Accepted August 9, Address correspondence and reprint requests to Dr. P. Halász at National Institute of Psychiatry and Neurology, H-1021 Budapest, Hüvösvölgyi út mirnics@fre .hu the 1990s. In recent years, there have been various efforts supporting adjustment of the patients in numerous ways. Numerous professional and nonprofessional organizations have taken part in the Out of the Shadows World Campaign of the ILAE, IBE, and WHO. There have been initiatives to provide information about epilepsy as a treatable condition, and educational materials were distributed. From 1997, within the framework of the campaign, annual Epilepsy Days were organized with the participation of professionals, people with epilepsy, and their relatives from all areas of the country. A number of self-help groups have been established. On the ground of new achievements in epilepsy rehabilitation, we assumed a change in attitudes toward people with epilepsy in Hungary. METHODS The objectives of the current study were (a) to obtain an initial estimate of public awareness, understanding, and attitudes toward epilepsy; (b) to measure trends of changes in knowledge, understanding, and attitudes; (c) to investigate the relationship between awareness, under- 86

2 CHANGES IN PUBLIC ATTITUDES 87 standing, attitudes, and demographic background of the respondents; and (d) to compare results in Hungary with results of former studies. The research was carried out in a design similar to the United States survey by Caveness et al. (1,2). In both surveys, 1994 and 2000, a brief questionnaire was used, measuring familiarity with epilepsy, attitudes toward it, and understanding of the illness. Some of the questions required a yes/no answer ( Have you ever heard of or read about the disease called epilepsy? ), and some were open-ended questions ( What do you think is the cause of epilepsy? and What do you think an epileptic seizure is? ). Subjects were interviewed in a face-to-face interaction situation, on the occasion of home visits. In 1994, 121 (11%) respondents, and in 2000, only 63 (6%) refused participation. Our representative sample was selected by the experts of Szonda-Ipsos Hungary, a well-known public poll agency. For these purposes, an iterative statistical procedure was applied. In the first step, and locations were selected. Every effort was made to choose locations that accurately represent the whole of Hungary by settlement structure, age distribution, administrative function, and the occupations of inhabitants (a total of 80 locations). For all selected locations, random groups of citizens older than 18 years were obtained. The number of selected respondents was proportionate with the size of the settlement, that is, more respondents were selected from larger towns and fewer subjects from smaller settlements. Demographic data were obtained about age, gender, education, employment, social status, marital status, and so on. Finally, in both 1994 and 2000, we had samples of 1,000 people, representative of the whole of Hungary. Persons who had epilepsy or had relatives with epilepsy were excluded, and no two respondents were from the same family. Statistical analyses were performed with SPSS 8.0. Chi-square tests were used to examine the association between the responses and each demographic variable in univariate analysis. Not sure and don t know responses were excluded when the effect of demographic variables on attitudes was analyzed. To investigate the effect of background demographic variables, we selected five factors: age, gender, education, residence, and family status. The following groups were formed: years, years, and older than 50 years; male and female subjects for gender; married or cohabiting subjects versus people living alone for family status; urban versus rural for residence; and primary, secondary, and higher for education. There were no significant differences regarding any demographic variables between the samples of 1994 and Therefore it seems that the two samples were demographically homogeneous and equally representative in both years. RESULTS Demographic background range in the first sample was years (mean, years), and in the second sample, range and mean years were calculated. In the 1994 sample, 47.2% were male respondents, and 52.8% were female subjects. In the sample of 2000, 47.0% of subjects were men, and 53.0% were women. The ratio of subjects living in urban versus rural environments was 63.3:36.7% in 1994 and 63.6:36.4% in In 1994, 38.1% of the respondents lived alone, the corresponding figure for 2000 was 41.8%. The remaining subjects were married or cohabiting. Familiarity with epilepsy Three questions were related to familiarity with epilepsy. The subjects were asked if they had heard about epilepsy, if they had seen a seizure, and if they knew someone with this illness. In 1994, 92% of the respondents had heard about epilepsy; 58% of them had seen a seizure; and 55.9% knew someone with this illness. In the year 2000, 93.7% of the respondents reported they had heard about epilepsy; 55.3% of them had seen a seizure, and 51.9% knew someone with epilepsy. There were no significant differences between results in the two samples. (Differences by demographic variables are shown in Table 1.) In the 1994 study, there were no differences in knowing a person with epilepsy between groups with various educational levels. However, people with higher education reported they had heard about epilepsy and they had seen a seizure more often compared with other groups. Differences regarding seeing a seizure could not be observed in the sample of In 1994, people from rural areas were less likely to know the term epilepsy, and reported less often that they had seen a seizure. In 2000, the same differences could be traced for knowing the term, whereas respondents from rural areas were more likely to know someone with epilepsy compared with those from urban settlements. Regarding all three questions, a significant difference could be noticed for increasing familiarity by age. People who lived with their family or partner reported more familiarity than did people living on their own. differences seemed somewhat contradictory: in 2000, women were more likely to know the term epilepsy, and but they were less likely to have seen a seizure. We do not consider results for gender to be of much relevance, because it cannot be said unambiguously from these data that either men or women are more familiar

3 88 Z. MIRNICS ET AL. TABLE 1. Familiarity: differences by demographic variables (%) F1 (1994) F1 (2000) F2 (1994) F2 (2000) F3 (1994) F3 (2000) Yes No Yes No Yes No Yes No Yes No Yes No (yr) Male Female Not married Married Primary Secondary Higher Urban Rural F1, Have you ever heard or read about the disease called epilepsy? F2, Did you ever know anyone who had epilepsy? F3, Have you ever seen anyone who was having a seizure? Values with significance of p < 0.05 are underlined. with the epilepsy disorder. Consequently, results concerning gender need further investigation. Understanding epilepsy The aspects of understanding epilepsy for the whole sample are summarized in Tables 2 and 3. There were three questions in this category: causes of epilepsy mentioned by respondents, recognized symptoms of epilepsy, and view of epilepsy as a form of mental illness. Most of subjects mentioned only one cause, and only a small percentage of the sample mentioned two of them. TABLE 2. Understanding epilepsy (1994) Cause of epilepsy Don t know 44.3% Disease of nerves 20.1% Brain injury 13.2% Hereditary disease 12.4% Alcohol 0.8% Nervousness 1.9% Heart paralysis 3.5% Multiple reasons 0.2% Organic disorder 0.3% Respiratory disease 0.4% Other 2.7% What do you think an epileptic seizure is? Don t know 16.1% Foam at the mouth 26.8% Convulsion, shaking 28.0% Loss of consciousness 17.0% Biting the tongue 2.0% Choking 1.0% Catalepsy 1.4% Turning up the whites of the eyes 1.2% Enuresis 0.2% Amnesia 0.7% Losing color 0.4% Other 3.2% We made a distinction between correct and false causes. In 1994, at least one of three correct causes (disease of nerves, brain injury, heredity) was identified by 45.7% of the respondents. In 2000, correct causes (disease of nerves, birth trauma, brain injury, heredity) were reported by 48.7% of subjects; surprisingly, heredity was mentioned by only 1.5% of subjects. In 1994, falsely believed causes were well-known misconceptions about epilepsy (heart paralysis, respiratory disease). In 2000, the list of causes was slightly shorter, stress appeared as a new response category, and there was a slight decrease in considering epilepsy as a heart disease. Differences by demographic variables in understanding epilepsy are listed in Tables 4 through 7. In 1994, subjects with higher education more often attributed epi- TABLE 3. Understanding epilepsy (2000) Cause of epilepsy Don t know 45.4% Disease of nerves 24.7% Birth trauma 10.4% Brain injury 12.1% Stress 9.2% Heart disorder 2.9% Hereditary disease 1.5% What do you think an epileptic seizure is? Don t know 15% Convulsion, shaking 34.6% Loss of consciousness 23.6% Foam at the mouth 21.6% Feeling bad because of nervousness 2.2% Biting the tongue 0.8% Shouting 0.3% Turning up the whites of the eyes 0.5% Other 1.0%

4 CHANGES IN PUBLIC ATTITUDES 89 TABLE 4. Cause of epilepsy (1994): differences by demographic variables (%) Don t know Disease of nerves Brain injury Heredity Alcohol Nervousness Heart disorder Male Female Not married Married Primary Secondary Higher Urban Rural lepsy to correct causes (such as disease of nerves, brain injury, and heredity) and reported less frequently that they did not know the cause. Young subjects and subjects from rural regions were less likely to know the cause of epilepsy. In 2000, the same results were replicated for younger subjects and respondents with less education. Rural subjects had more misconceptions about stress as a cause of epilepsy, and subjects with low education had more false beliefs about epilepsy as a form of heart disorder. It is interesting that birth trauma appeared as a new, salient response category in 2000, and it was more frequently reported by well-educated subjects. It is quite surprising that the frequency of such responses was about 1% in 1994, and about 20% in 2000 for all demographic subgroups. Regarding symptoms of epilepsy, it appears that in both years, subjects with higher education were more likely to be aware that epilepsy is frequently associated with convulsions and shaking; thus they identified some symptoms of epilepsy more correctly than people with less education. In 2000, young subjects more often knew that epilepsy symptoms are convulsions and shaking, as well as people with higher education. Young people related epilepsy less frequently to loss of consciousness. In both years, subjects with less education were more likely to be uninformed about the cause of epilepsy. Epilepsy was considered to be a form of insanity by 15.2% of respondents in 1994, and there was a slight, but nonsignificant increase in 2000, the percentage being 17.2%. Women less often thought that epilepsy was a form of insanity (Table 8). Very significant differences were found for educational level as well. People with TABLE 5. Cause of epilepsy (2000): differences by demographic variables (%) Don t know Disease of nerves Birth trauma Brain injury Stress Heart disorder Other (including heredity) Male Female Not married Married Primary Secondary Higher Urban Rural

5 90 Z. MIRNICS ET AL. TABLE 6. Symptoms of epilepsy (1994): differences by demographic variables (%) DN FM CS LC FB BT CH CT TW EN AM O Male Female Not married Married Primary Secondary Higher Urban Rural DN, don t know; FM, foam at the mouth; CS, convulsion, shaking; LC, loss of consciousness; FB, feeling bad; BT, biting the tongue; CH, choking; CT, catalepsy; TW, turning up the whites of the eyes; EN, enuresis; AM, amnesia; LC, losing color; O, other. lower education more often considered epilepsy to be a form of insanity in both samples. In rural environments, this false belief was more frequent. Respondents who lived with their families had more prejudices compared with people living on their own. In 1994, older people were more prejudiced for this aspect. Attitudes toward epilepsy In this category, answers to three questions (regarding children associating, employment, and marriage) were analyzed. Attitude changes from 1994 to 2000 are demonstrated in Fig. 1. In 1994, 19% of the sample had objections to TABLE 7. Symptoms of epilepsy (2000): differences by demographic variables (%) DN BT LC FM CS FB SH TW O Male Female Married Not married Primary Secondary Higher Urban Rural DN, don t know; BT, biting the tongue; LC, loss of consciousness; FM, foam at the mouth; CS, convulsion, shaking; FB, feeling bad; SH, shouting; TW, turning up the whites of the eyes; O, other. TABLE 8. Understanding epilepsy: differences by demographic variables (%) U1 (1994) U1 (2000) Yes No Yes No Male Female Not married Married Primary Secondary Higher Urban Rural U1, Do you think epilepsy is a form of insanity or not? Values with significance of p < 0.05 are underlined. FIG. 1. Changes of negative attitudes from 1994 to 2000.

6 CHANGES IN PUBLIC ATTITUDES 91 his/her child being in contact with someone with epilepsy. In 2000, there was a significant decrease: the corresponding number was 16.5% (significance level: p < 0.001). There was a very significant increase in favoring equal employment opportunities (p < ). In 1994, 55% of the respondents held the opinion that people with epilepsy cannot be employed like other people, but in 2000, only 38% shared this viewpoint. Negative attitudes toward marrying someone with epilepsy decreased from 53.3% in 1994 to 41.1% in 2000, and the difference was significant (p < 0.001). The effects of demographic variables are summarized in Table 9. In the 1994 study, when answering the question about children associating, the respondents from rural areas were significantly more rejecting compared with those living in urban environments, but equally rejecting when marriage or employment was considered. In 2000, subjects from rural parts of Hungary were more rejecting toward equal employment opportunities and also more rejecting toward the idea of marriage with someone who has epilepsy. In both studies, a higher level of education predicted more positive and accepting attitudes in all aspects except employment. In both studies, younger people had more positive attitudes toward marrying someone with epilepsy. Generally, older people reported less agreement with equal employment opportunities and had more negative attitudes toward their children associating with someone with epilepsy. In 1994, more women favored equal employment than men, and in 2000, they agreed more frequently with their children being in contact with a person with epilepsy. In 1994, married subjects reported less agreement for the aspect of marriage and more agreement for children associating, but no differences were found in the study in Cross-cultural comparisons Familiarity The two Hungarian samples knew the term epilepsy quite frequently, even slightly more frequently compared with German and Italian samples from former studies; they have heard about epilepsy approximately as frequently as the Chinese or Finnish sample. It was surprising, however, that the Hungarians were less likely to have seen a seizure and less likely to know someone with epilepsy. These percentages were quite low compared with other countries like China, Taiwan, and the United States. Understanding No significant cross-cultural differences could be observed for understanding epilepsy. Approximately the same percentage of Hungarian respondents attributed epilepsy to realistic causes as that in respondents from other countries. There were no salient differences in knowledge about symptoms. It is interesting, however, that some culture-specific symptom categories could be observed in our samples, such as foam at the mouth, in as many as 23.9% in 1994 and 19.7% of our sample in Intermediate percentages were found regarding insanity-related prejudices (Table 10); Hungarian rates of negative attitudes were somewhat higher than those in TABLE 9. Attitudes: differences by demographic variables (%) A1 (1994) A1 (2000) A2 (1994) A2 (2000) A3 (1994) A3 (2000) Yes No Yes No Yes No Yes No Yes No Yes No Male Female Not married Married Primary Secondary Higher Urban Rural A1, Would you object to having any of your children at school or at play associate with persons who have seizures? A2, Would you object to having a son or daughter of yours marry a person who sometimes had seizures? A3, Do you think people with epilepsy should or should not be employed in jobs like other people? Values with significance of p < 0.05 are underlined.

7 92 Z. MIRNICS ET AL. TABLE 10. Attitudes toward epilepsy: cross-cultural comparisons, percentages of negative attitudes Year A1 A2 A3 U1 West Germany U.S.A Italy China Taiwan Denmark Tanzania Hungary Hungary A1, Would you object to having any of your children at school or at play associate with persons who have seizures? A2, Would you object to having a son or daughter of yours marry a person who sometimes had seizures? A3, Do you think people with epilepsy should or should not be employed in jobs like other people? U1, Do you think epilepsy is a form of insanity or not? Denmark, Taiwan, and Italy, but lower than those in respondents from West Germany. Attitudes Epilepsy-related attitudes regarding children s association and marriage with an epileptic person were somewhat more positive than results for Chinese and Taiwanese respondents and subjects from Tanzania. Compared with the West German sample, our subjects rejected less the possibility of children s association. It is striking that employment-related prejudices from the 1994 study were higher compared with any former studies, and they are still high in 2000, after significant decreases. DISCUSSION Our study investigated familiarity with epilepsy, as well as knowledge of epilepsy and epilepsy-related attitudes in a representative sample of Hungarian respondents. We also wanted to find out recent attitude changes in our society. The influence of some demographic variables was assumed as well. Familiarity with the term epilepsy did not differ from familiarity rates in other countries, even though our respondents had seen seizures less often compared with samples from former studies. In our viewpoint, prejudices in our society, especially the prejudice rates until 1994, may account for increased isolation in the patients; therefore Hungarians truly met people with epilepsy less often compared with people from other countries. Understanding of the causes and symptoms of epilepsy is quite similar to the results of former studies. Respondents have a picture of epilepsy that is clinically a prototype of severe seizures. In addition, a languageembedded characteristic ( foam at the mouth ) seems a very remarkable factor of epilepsy perception. This result could be a culture-specific characteristic, as foam at the mouth is an idiom used in everyday language as a synonym of rage or rabies. This idiom remains in use, so despite any educational efforts aimed at influencing epilepsy-related public opinion, it seems especially difficult to eliminate the associated misconceptions. Young subjects and subjects with higher education have more correct knowledge about epilepsy and fewer misconceptions, but they identify symptoms of severe epilepsy (convulsions, shaking, and in some cases, loss of consciousness) as a stereotype of this illness. It is clear from the results that despite a decrease in prejudices, the perception of epilepsy is oversimplified and undifferentiated, and there is still much work to do in providing information for the public. In 1994, 12.4% of respondents thought epilepsy was a hereditary disease, but in 2000, only a limited number of respondents mentioned this as a cause. Such findings are quite unusual. In our opinion, these results could be associated with characteristics of the public information campaign in Hungary as well as the fluctuating interest in scientific publications dealing with the problem of heredity. Before 1994, there were no efforts for public information in Hungary, and public opinion at that time reflected long-standing beliefs about the hereditary nature of epilepsy remaining from the beginning of the century. The information campaign in Hungary set the reduction of prejudices and discrimination as its main goals; it therefore emphasized chiefly psychosocial aspects of epilepsy and questioned the associated false beliefs. People with epilepsy were shown as human beings who deserve to be understood, accepted, and integrated into society. Beyond basic medical aspects, the campaign focused less on detailed medical information about epilepsy. These data suggest that people who were gradually informed by, among others, the mass media were receptive to psychosocial information, and partly because of lack of related information they ignored heredity as a cause of epilepsy. Heredity as a cause may not comply with the picture of an individual with epilepsy as a person who can be employed, can socialize, etc. Besides, results do not necessarily reflect that people do not know about heredity but that they do not list this cause among the most important ones requested by the interviewers. One further important remark must be made on these results. Greater emphasis was placed on the aspect of heredity in the epilepsy publications in the 1990s; therefore information from recent studies may potentially still not be available to the public in Hungary. Our results confirm higher negative attitude rates in Hungary compared with other European countries, but less prejudice compared with Taiwan (8), China (6), and Tanzania (9) regarding some aspects. Our sample was more rejecting toward employment of people with epilepsy compared with any other country. Conversely, when the issue of children s associations and marriage was in question, our subjects did not report such high prejudice rates as regarding work. This finding may re-

8 CHANGES IN PUBLIC ATTITUDES 93 flect high unemployment concerns and feelings of instability about work in our changing society. Unemployment is a serious problem in our country, particularly in rural regions, thus we consider that unemploymentrelated prejudices do not apply exclusively to people with epilepsy, but they can be present in public attitudes toward other disadvantaged groups as well (e.g., people with other chronic illnesses, foreigners, ethnic minorities). When the difference in employment-related prejudices between urban and rural regions is considered, a background effect of regional differences in unemployment must also be taken into account. We hope that a recent positive change in societal attitudes can be observed. A decrease of prejudices by 8 9% during a 6-year period may be a realistic estimate of the attitude changes that can be achieved during this period. Our results confirm that attitude changes in a society may be supported and promoted by striving for integration and better acceptance of people with epilepsy. Although the Hungarian sample has a generally negative attitude toward people with epilepsy, there appears to be an increasing reception of information. These results emphasize the need for continued educational programs. of the public directed against misconceptions and negative attitudes toward epilepsy (such as confusion between epilepsy and mental illnesses) may help reduce discrimination against persons with epilepsy. Some demographic specifics in our study demonstrate areas where such help would be most welcome and needful: target groups from rural areas and less educated subjects could be focused on. It is also a useful information that women may be less vulnerable to prejudices compared with men, and young people may be somewhat more open and accepting toward information about epilepsy compared with the older generation; therefore they could be targets of special intervention programs. These findings are congruent with similar results of Iivaainen et al. (3). Our study has the known limitations of all face-to-face interviewing studies, as well as the risk that some people with negative attitudes would not report their opinion at all but refuse participation. There is another methodologic limitation that, in our opinion, might distort the results reflecting work-related attitudes. In all designs from former studies, there are two answer possibilities for the question of employment: the respondents must either accept equal employment of people with epilepsy or reject it. In everyday practice, this question is much more complex. There are almost always several limitations of employment, as well as recommended work types, depending on the individual s condition. We can easily address the issue that perhaps a third answer possibility (like yes, with certain limitations ) would produce lower prejudice rates in future studies. We think that lay people, especially those who have some familiarity with education programs, do not necessarily think dichotomously about the issue of employment. Acknowledgment: We greatly appreciate the financial help we received from Novartis and Glaxo Wellcome, which was a prerequisite for our work. We are also grateful for the friendly support of Annamária Buda, sociologist, Zsuzsanna Bujtás, psychologist, Zsuzsanna Mihalik, vocational therapist, György Rásonyi, neuropsychiatrist, and Noémi Császár, clinical psychologist, who made valuable contributions to the research work. REFERENCES 1. Caveness W. A survey of public attitudes toward epilepsy. Epilepsia 1949;4: Caveness WP, Gallup GH Jr. A survey of public attitudes toward epilepsy in 1979 with an indication of trends over the past thirty years. Epilepsia 1980;21: Iivaainen M, Uutela A, Vilkkumaa I. Public awareness and attitudes toward epilepsy in Finland. Epilepsia 1980;21: Finke M. Die Einstellung der Bevölkerung der Bundesrepublic Deutschland zur Epilepsie. Nervenarzt 1981;52: Canger R, Cornaggia C. Public attitudes toward epilepsy in Italy: results of a survey and comparison with U.S.A. and West German data. Epilepsia 1986;26: Lai C-W, Huang X, Lai Y-HC, et al. Survey of public awareness, understanding and attitudes toward epilepsy in Hunan Province, China. Epilepsia 1990;31: Jensen R, Dam M. Public attitude toward epilepsy in Denmark. Epilepsia 1992;33: Chung M-Y, Chang Y, Lai Y-HC, et al. Survey of public awareness, understanding and attitudes toward epilepsy in Taiwan. Epilepsia 1995;36: Rwiza H-T, Matuja B-P, Kilonzo GP, et al. Knowledge, attitude and practice toward epilepsy among rural Tanzanian residents. Epilepsia 1993;34: