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

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  • 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: 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?

    Dont 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 Dont 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 Dont know what to recommend Dan Fang and other folk medicine Acupuncture Surgical treatment Think epilepsy is untreatable No need to treat Ask for Gods 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 someo...

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