Epilepsia, 36(5):488493, 1995 Raven Press, Ltd., New York 0 International League Against Epilepsy

Survey of Public Awareness, Understanding, and Attitudes Toward Epilepsy in Taiwan

Ming-Yao Chung, Yang-chyuan Chang, *Yen-Huei C. Lai, and *Chi-Wan Lai

Department of Neurology, National Taiwan University Hospital, Taipei, Taiwan; and "Department of Neurology, University of Kansas Medical Center, Kansas City, Kansas, U.S.A.

Summary: A survey of public awareness and understand- ing of and attitudes toward epilepsy was made in Taipei City and Chin-San Village, Taiwan in 1992. In a popula- tion sample of 2,610 adults, 87% had read or heard about epilepsy, 70% knew someone who had epilepsy, 56% had seen someone having a seizure, 18% would object to hav- ing their children associated with persons with epilepsy, 72% would object to having their children marry a person with epilepsy, 31% believed that epileptic persons should not be employed in jobs as other persons are, 7% believed that epilepsy was a form of insanity, 34% did not know the cause of epilepsy, 13% did not know what an epileptic attack was like, and 18% did not know what to recom-

Persons with epilepsy frequently experience psy- chosocial difficulties, especially in terms of inter- personal relationships and jobs. These problems are not always related to the severity of the seizure disorder, but instead to discrimination or miscon- ceptions, mainly due to beliefs that persons with epilepsy are physically disabled, mentally retarded, or emotionally disturbed. Knowing the degree of awareness and understanding of, and attitudes to- ward, epilepsy in a society is a necessary first step in eliminating discrimination against persons with epilepsy.

Studies of public awareness of and attitudes to- ward epilepsy have been performed in the United States (Caveness et al., 1980), the Federal Republic of Germany (Finke, 1980), Finland (Iivanainen et al., 1980), Italy (Canger and Cornaggia, 1985), China (Lai et al., 1990), and Denmark (Jensen et al., 1992). The results of the survey conducted in Henan Province, China, showed that the Chinese had a relatively higher degree of awareness of epilepsy,

~

Received May 24, 1994; revision accepted August 26, 1994. Address correspondence and reprint requests to Dr. C.-W. Lai

at Neurology Department, University of Kansas Medical Center, 3901 Rainbow Blvd., Kansas City, KS 66160-7314, U S A .

mend if their friends or relatives had epilepsy. Youth, higher education, and upper levels of employment were correlated with answers that were more favorable con- cerning epilepsy in all survey questions except for the question regarding marriage, for which the reverse was noted. The attitudes toward epilepsy disclosed by this study were more favorable than those detected in a sim- ilar survey conducted in Henan Province, China. The comparison suggests that the exposure to Western culture and socioeconomic system in Taiwan might have helped reduce the discrimination against epilepsy. Key Words: Epilepsy-Awareness-Taiwan-Chinese.

but that their attitudes toward epilepsy were much more negative than those in Western countries (Lai et al., 1990). Our survey was conducted in a popu- lation of Taiwanese, who are ethnically Chinese with a similar cultural heritage but with more expo- sure to Western socioeconomic influences. We wished to compare Taiwanese attitudes toward ep- ilepsy with those of Chinese living in Henan, China.

MATERIALS AND METHODS

The survey consisted of 10 questions (Tables 1-5) identical to those used in the previous study in Henan, China (Lai et al., 1990). Some of these ques- tions were from a previous Gallup Poll of public attitudes toward epilepsy (Caveness et al., 1980). We obtained approval from the Gallup Organization and from Raven Press Publishers, New York, NY, U.S.A. to use these questions.

A structured questionnaire was used to obtain in- formation on demographic variables (age, sex, mar- ital status, education, occupation, and number of offspring). To compare results between rural and urban populations, the survey was conducted in two sites. One was Taipei City, the capital of Tai- wan, a highly westernized cosmopolitan City with a

488

ATTITUDE TO WARD EPILEPSY IN TAIWAN

TABLE 1. Responses to questions about familiarity with epilepsy

489

Parameter

No. of responses

2,610

- No (%I 43 -

Age (yr) 15-29 30-49 50-64 >65

Sex M F

Marital status Never married Married”

No. of offspring 0 1-2 2 3

Education of respondent Never went to school Grade school Junior high Senior high College or above

Occupation Medical professionb Studentsc Peasants and fishers Factory workers

and businessmen Nonspecialized

government employee Others

Residence Urban Rural

244 893 888 585

1,136 1,474

29 1 2,319

396 435

1,779

836 83 1 237 233 473

90 70

262

706

255 1,227

692 1,918

99 91 85 79

88 86

95 86

94 94 84

77 87 89 95 99

99 100 84

89

96 83

96 83

1 9

15 21

12 14

5 14

6 6

16

23 13 11 5 1

1 0

16

11

4 17

4 17

60 71 72 70

70 70

64 71

64 12 71

67 73 70 70 70

78 51 74

69

80 68

67 71

34 28 26 29

28 28

33 27

32 26 28

30 27 30 27 27

21 41 25

29

18 30

30 27

41 58 59 56

62 51

47 57

49 59 57

50 60 64 61 54

58 24 60

59

66 54

51 59

51 41 39 43

36 47

50 42

48 40 42

48 40 35 39 45

41 73 38

40

33 45

48 41

Q1: Have you ever heard of or read about the disease called “epilepsy” or convulsive seizures (fits)? Q2: “Did you ever know anyone who had epilepsy?” Q3: “Have you ever seen anyone who was having a seizure?” The total of yes plus no plus not sure answers equals 100%.

Married: Includes a few divorced persons, widows, and widowers. Medical profession: Includes physicians, nurses, and medical students. All students except medical students.

population of >2 million; the other was Chin-San Village, a rural community with a population of 18,800, located at the northern tip of Taiwan, -60 km northeast of Taipei City. In Taipei City, the in- terview was conducted in streets, parks, markets, shopping areas, temples, schools, and hospitals; in Chin-San Village, the survey was conducted by door-to-door visits. In both sites, the respondents were chosen randomly. Only those aged 3 1 5 years were interviewed. Persons with epilepsy or with rel- atives who had epilepsy were excluded. No two respondents were from the same family.

The survey was conducted in July and August 1992. All respondents were interviewed by a mem- ber of the survey team, which consisted of a group of neurologists and medical students who had re- ceived extensive training in conducting the survey.

The questions were asked in a one-on-one interview in either Chinese or Taiwanese dialect, depending on the respondents’ preference. Sometimes terms related to the nature and causes of epilepsy had to be explained, and occasionally gestures were used to help describe these terms. However, suggestion or hint was strictly avoided to prevent biasing the answers. In all, 2,610 subjects (1,136 males and 1,474 females; 692 in Taipei City and 1,918 in Chin- San Village) ranging in age from 15 to 91 years (me- dian 52, mean 51.5 years) completed the question- naire.

Statistical analyses were performed with a com- mon software package (SAS). Chi-square tests were used to examine the association between the re- sponses and each demographic variable in univari- ate analysis. Noncommittal answers, such as “not

Epilepsia, Vol. 36, No. 5 , 1995

490 M. -Y . CHUNG ET AL.

TABLE 2. Responses to questions about attitudes toward epilepsy

Parameter

No. of responses

2,610

Q4 Yes (%I 72

Age (yr) 15-29 30-49 50-64 >65

Sex M F

Marital status Never married Married”

No. of offspring 0 1-2 3 3

Never went to school Grade school Junior high Senior high College or above

Occupation Medical professionb Studentsc Peasants and fishers Factory workers

and businessmen Nonspecialized

government employee Others

Residence Urban Rural

Education

244 893 888 585

1,136 1,474

29 1 2,319

396 435

1,779

836 83 1 237 233 413

90 I0

262

706

255 1,227

692 1,918

11 79 13 76 22 62 24 50

23 64 14 68

10 78 19 64

11 16 16 12 20 62

20 54 21 65 19 70 13 13 19 80

3 95 16 15 23 56

19 69

13 78 19 61

14 76 20 62

13 71 13 64

74 71

68 73

71 78 71

59 76 79 73 81

81 68 69

76

80 68

76 71

Q5 - No (%I - 14

~

14 11 16 16

13 14

15 13

13 10 15

20 13 16 14 8

15 13 16

14

8 14

10 15

Q6

76 13 59 26 42 36 28 41

50 35 49 28

76 13 45 33

72 15 64 25 39 37

31 36 43 39 50 34 68 21 76 16

84 13 77 11 35 40

48 34

80 12 41 34

75 15 38 38

9 76 7 16 7 68 7 66

10 71 5 12

9 75 I 71

9 74 7 76 7 69

6 62 6 13

11 72 11 I1 I 81

6 91 9 13 5 71

9 71

7 80 I 67

11 15 6 70

Q4: “Would you object to having any of your children in school or at play associate with persons who sometimes had seizures (fits)?” Q5: “Would you object to having a son or daughter of yours marrying a person who sometimes had seizures?” Q6: “Do you think people with epilepsy should or should not be employed in jobs like other people?” Q7: “Do you think epilepsy is a form of insanity or not?” The total of yes plus no plus not sure answers equals 100%.

” Married: Includes a few divorced persons, widows, and widowers. Medical profession: Includes physicians, nurses, and medical students. All students except medical students.

familiar with epilepsy” or “not sure” were ex- cluded from the analyses of responses to these questions (Tables 1 and 2). Logistic regression was performed with CATMOD procedure in SAS to fit

TABLE 3. Response to the question: “What do you think is the cause of epilepsy?”

the best model for independent variables. Age was categorized by three levels: <45, 45-59, and >59 years. Education was divided into three categories: never went to school, grade school, and above grade school. Occupation was divided into two classes: labor (including peasants, fishermen, fac-

Taiwan China Response (1992) (%) (1988) (%)

TABLE 4. Response to the question: “What d o you think an epileptic attack is?”

Don’t know 34 40 Hereditary disease 28 17 “Brain disease, injury” 20 25 Birth defect 14 12 Mental or emotional disorder 8 17 Blood disorder 2 2 Other disorders 3 5 Not familiar with epilepsy 14 13

Taiwan China Response (1992) (%) (1988) (%)

“Convulsion, shaking” 61 84 Loss of consciousness 52 59 Transient changes in behavior 19 15 Periods of amnesia 10 7 Don’t know 13 10

Multiple answers were allowed.

Epilepsia, Vol. 36, No. 5, 1995

Multiple answers were allowed.

ATTITUDE TO WARD EPILEPSY IN TAIWAN 491

TABLE 5 . Response to the question: “Zf your relatives or friends have epilepsy, what kinds of treatment would

you suggest?”

Taiwan China Response (1992) (%) (1988) (%)

Ask for an “M.D.” Ask for an herbal medicine doctor Don’t know what to recommend “Dan Fang” and other folk medicine Acupuncture Surgical treatment Think “epilepsy is untreatable” No need to treat Ask for God’s help

63 15 18 2 3 4 4 3 3

55 25 17 15 14

1 1 1

-

~~

Multiple answers were allowed

tory workers, and salesmen) and nonlabor (includ- ing medical profession, students, and government employees). Alpha was set at 0.05 to determine sta- tistical significance.

RESULTS

Responses to the survey questions are summa- rized in Tables 1-5. The survey questions were di- vided into three categories: familiarity with epilepsy (questions 1-3), attitudes toward epilepsy (ques- tions 4-7), and understanding of epilepsy (questions 8-10).

Familiarity with epilepsy Eighty-seven percent (87%) of the respondents

had read about or heard of epilepsy, 70% knew someone who had epilepsy, and 56% had seen someone having a seizure (Table 1). In multivariate analyses, younger age, better education, and non- labor employment were correlated with better awareness of epilepsy; older age, nonlabor employ- ment, and residence in rural areas were correlated with knowing someone who had epilepsy; and older age, male sex, higher education, nonlabor employ- ment, and residence in rural areas were correlated with having seen someone having a seizure (Table 1).

Attitudes toward epilepsy Eighteen percent of the respondents objected to

having their children associate with epileptic per- sons in school or at play. In multivariate analyses, this negative attitude was associated with older age, male sex, and labor class. Seventy-two percent of the respondents objected to their children marrying someone with epilepsy. This response was corre- lated with youth, married state, and higher educa- tional level. Thirty-one percent believed that epilep- tic persons should not be employed in jobs as other persons are. This negative attitude was correlated with older age, residence in rural area, and belong-

ing to the labor class. Seven percent considered ep- ilepsy a form of insanity. This response was corre- lated with male sex, residence in urban areas, and belonging to the labor class (Table 2).

Understanding of epilepsy Thirty-four percent of the respondents did not

know the cause of epilepsy, 28% believed that epi- lepsy was a hereditary disease, 20% believed that epilepsy was caused by brain disease or injury, and 14% believed that epilepsy was caused by birth de- fect (Table 3). We considered “brain disease or in- jury’’ the most accurate of the answers to the ques- tion concerning the cause of epilepsy, and this an- swer was correlated with youth, male sex, higher education, belonging to nonlabor class, and resi- dence in urban areas. As for the clinical presenta- tion of epilepsy, 13% did not know what an epileptic attack was like, whereas 61% identified convulsions and shaking movements and 52% identified loss of consciousness as the typical manifestations of an epileptic attack. Only 19% considered “transient change of behavior” and 10% considered “period of amnesia” an epileptic manifestation (Table 4). More accurate knowledge of the clinical features of epilepsy was correlated with youth, married state, higher education, belonging to nonlabor class, and residence in urban areas. As for the treatment of epilepsy, 18% did not know what to recommend if their friends or relatives had epilepsy, 63% believed that epilepsy should be treated by medical doctors, and 15% believed epilepsy should be treated by herbal medicine doctors (Table 5). Favoring West- ern medicine over Chinese traditional medicine was correlated with youth, male sex, higher education, belonging to nonlabor class, and residence in urban areas.

DISCUSSION

The previous study of a Chinese population was conducted in Henan province, which is located at the geographic center of mainland China, where a traditional Chinese value system prevails. We con- ducted our survey in Taiwan among a population with the same ethnic background but with a dif- ferent political system, more heterogeneity in its cultural background, and more exposure to West- ern culture and socioeconomic system. The per- centages of respondents who had heard or read about epilepsy, knew someone with epilepsy, and had seen someone having a seizure were 87,70, and 56% respectively, percentages that are intermedi- ate between the figures from Mainland China and Italy, and are comparable to results of U.S. studies (Table 6).

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492 M.-Y. CHUNG ET AL.

TABLE 6. Responses to questions about familiarity with epilepsy

Country

West Germany Finland United States Italy China Denmark Taiwan

Year study was conducted

41 -

Yes

1978 1978 1979 1983 1988 1992 1992

90 95 95 73 93 97 87

42 -

Yes

49 63 61 77 60 70

-

4 3 Yes -

- 45 59 52 72 50 56

41: Percentage of respondents who had heard or read about

42: Percentage of respondents who knew someone with epi-

43: Percentage of respondents who had seen someone having

epilepsy.

lepsy.

a seizure.

Overall, the respondents’ attitudes toward epi- lepsy in this population were more negative than those obtained in the United States study, but more favorable than those obtained in the mainland China study (Table 7). Most respondents neither objected to their children playing with children with epilepsy or to employment of persons with epilepsy. Only 7% of the respondents thought epilepsy was a form of insanity. On the other hand, 72% of the respon- dents in this survey objected to their children mar- rying a person with epilepsy (76% of urban and 71% of rural respondents expressed their objection), in contrast to 18% in the U.S. study (Caveness et al., 1980), and 87% in the Chinese study (Lai et al., 1990). Younger age persons and those with higher education were more prejudiced against marrying an epileptic person but more favorable toward hav- ing their children play with, or employment of a person with epilepsy. The stigma of martying per- sons with epilepsy appears to be deep rooted in Chi- nese society, both in mainland China and in Taiwan.

TABLE 7 . Responses to questions about attitudes with epilepsy

Q4 0 5 4 6 4 7 Year study - - - - Country was conducted Yes Yes Yes Yes

West Germany 1978 23 - 20 23 United States 1979 6 1 8 9 3 Italy 1983 1 1 - 15 8 China 1988 57 87 53 16 Denmark 1992 7 - 7 1 Taiwan 1992 18 72 31 7

44: Percentage of respondents who objected to having their

QS: Percentage of respondents who objected to marriage to a

Q6: Percentage of respondents who objected to employment of

47: Percentage of respondents who thought epilepsy was a

children with a person with epilepsy.

person with epilepsy.

a person with epilepsy.

form of insanity.

Respondents appeared to understand epilepsy to a degree similar to that noted in other studies. The percentages of respondents who did not know the cause of epilepsy were 34% in the present survey, 40% in mainland China, 39% in the United States, and 36% in Finland. Twenty-eight percent of the respondents in the present survey believed that ep- ilepsy was primarily a hereditary disease; corre- sponding figures were 17% in mainland China and 11% in Italy. Eight percent of those surveyed be- lieved that epilepsy was a mental or emotional dis- order, whereas this was true of only 2% in the U.S. survey. In contrast, 17% of persons in mainland China had this belief. As for the clinical manifesta- tions of epilepsy, more than half of the respondents identified convulsions and shaking movements and loss of consciousness as typical, whereas only a few recognized periods of amnesia and transient change of behavior as possible manifestation of an epileptic attack (Table 4). The same findings had been ob- tained in mainland China, indicating that in both Chinese society and Chinese traditional medicine, no concept of nonconvulsive seizures exists (Lai et al., 1991).

Finally, regarding the treatment of epilepsy, fewer respondents from Taiwan (18%) than from China (39%) favored Chinese herbal medicine and acupuncture as a treatment for epilepsy (Table 5). This may be related to the Taiwanese’ early expo- sure to multiple cultures in the past 400 years, as Taiwan was first discovered by Portuguese sailors in 1557, then ruled by Dutch (1624-1661), by Chi- nese ,(1661-1895), by Japanese (1895-1945), and later by the pro-West capitalist Nationalist Chinese (1945 to the present) (Su, 1986). As a result, Tai- wanese have had more exposure to Western medi- cine and are less influenced by the Chinese ortho- dox medicine than are the Chinese of mainland China.

The respondents in the current study may not be representative of all Taiwanese people since only <0.1% of residents of Taipei City and 10% of Chin- San villagers were interviewed. Although the re- spondents were chosen randomly, the effort of door-to-door visit in Chin-San village had enrolled more villagers than city residents (1,918 vs. 692). The villagers interviewed through home visits were generally older than the city respondents inter- viewed in public areas; consequently, the average age of our respondents was much older than that in the previous study in China (median 52 years in Taiwan and 34 years in China). Because youth, higher education, and upper level of employment were correlated with answers that were more favor- able concerning epilepsy in most survey questions

Epilepsia, Vol. 36, No. 5, 1995

ATTITUDE TO WARD EPILEPSY IN TAIWAN 493

(except that on marriage), the opinion reflected in our survey in Taiwan might have been even more positive than that in China if more residents of Taipei City had been included.

We noted attitudes toward epilepsy to be more favorable in Taiwan than in Henan Province, China. Our results suggest that the exposure to Western culture and socioeconomic system has played a role in reducing discrimination against epilepsy. Public education to correct the misunderstanding of epi- lepsy, such as confusion between epilepsy and men- tal illnesses and overemphasis of the role of hered- ity, may help eliminate discrimination against per- sons with epilepsy in Taiwan.

Acknowledgment: C.W.L. was the recipient of a Mer- ritt-Putnam International Visiting Professorship from the Epilepsy Foundation of America to visit the National Tai- wan University Hospital. We thank these two organiza- tions for making this survey possible. We thank Dr.

Dewey Ziegler for advice and Patricia Melching for typ- ing.

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