Public Awareness, Attitude, and Understanding of Epilepsy in Hong Kong Special Administrative Region, China
Address correspondence and reprint requests to Dr. C. G. Fong at University Department of Medicine, Queen Mary Hospital, 102 Pokfulam Road, Hong Kong. E-mail: firstname.lastname@example.org
Summary: Purpose: Because of the nature of the epileptic seizure, the social stigma attached to epilepsy is a major handicap to persons with epilepsy compared with the disability associated with seizures or the side effects from medications. Measuring the awareness, attitude, and understanding of epilepsy is the first step in alleviating discrimination.
Methods: We conducted a face-to-face questionnaire interview survey in five different locations (HKSAR) that represented the population structure, administrative function, and occupations of inhabitants. Subjects with epilepsy or with relatives who had epilepsy were excluded.
Results: We interviewed 1,128 subjects; 58.2% had heard about epilepsy before. Of these, 55% had witnessed one or more epileptic seizure, and 18.9% knew one or more persons with epilepsy; 52.7% would put an object into a patient's mouth during an epileptic seizure to prevent injury of the tongue (32.2% learned this from a local television program), and 94.1% agreed that persons with epilepsy could be married. However, only 72.5% considered pregnancy to be appropriate; 11.2% would not let their children play with others with epilepsy; 32.2% would not allow their children to marry persons with epilepsy. Employers (22.5%) would terminate the employment contract after an epileptic seizure in an employee with unreported epilepsy.
Conclusions: This study documented the public attitude toward epilepsy in HKSAR; although it was more negative than that in Western societies, it was more positive than that of the Chinese in China or Taiwan. We suggest that more effort be made to improve public awareness of, attitude toward, and understanding of epilepsy through school education and epilepsy-related organizations in HKSAR.
“Epilepsy” is derived from the Greek word “epilamvanein” or “epilepsia,”“to be seized,”“to be taken hold,” or “to be attacked.” Historically, epilepsy is well described in the literature, in the Bible and in early Greek literature (1). Epilepsy has been regarded as possession by evil spirits. Even with the great advances in understanding epileptic disorders, the stigma attached to the term “epilepsy” in some instances proves to be a greater handicap to persons with epilepsy than the disability associated with seizures or the side effects from medications. Measuring awareness and understanding of epilepsy is the first step to alleviating discrimination. Nationwide surveys have been conducted in several countries with different cultural backgrounds: United States, Denmark, Finland, Italy, China, and Taiwan (2–7). However, it was never done in Hong Kong, with a 6.8 million population, of which >95% are Chinese from Southern China.
We report our findings in the first large-scale community-based survey regarding the understanding of, attitude toward, and public awareness of epilepsy in Hong Kong Special Administrative Region (HKSAR), China.
The objectives of the study were (a) to obtain an initial estimation of public awareness of, understanding of, and attitude toward epilepsy in HKSAR; (b) to investigate the relation between familiarity, knowledge, understanding, attitude, and the demographic background of respondents; and (c) to investigate the prevalence and practice of misbeliefs or myths about epilepsy in the general public.
The survey was conducted in April and May of 2001. We used a face-to-face questionnaire interview method. Structural questionnaires with yes/no questions were supplemented with open questions. All respondents were interviewed by a member of survey team, which consisted of a group of neurologists, social workers, and trained interviewers for this survey. Subjects with epilepsy or with relatives who had epilepsy were excluded. One thousand twenty-eight subjects were interviewed. The interview was terminated if they had no idea of or never heard of “epilepsy” or “convulsion” before. Six hundred fifty-five subjects completed the questionnaire in five different locations of Hong Kong: Wong Chuk Hang (WCH), Causeway Bay (CB), Wan Chai (WC), Sha Tin (ST), and Wong Tai Sin (WTS). They were selected to represent the whole Hong Kong population structure, administrative function, and occupations of inhabitants. WCH, ST, and WTS are residential areas, whereas CB and WC are commercial areas. For all selected locations, randomly selected Cantonese-speaking Chinese older than 15 years were obtained. Demographic data were obtained about age, gender, education, employment, and religion.
Statistical analyses were performed with the SPSS version 10.0 package. χ2 tests were used to examine the association between responses and each demographic variable in univariate analysis. Noncommittal answer like “not sure” or “don't know” were excluded from the analyses of responses to these questions. Logistic regression was performed to fit the best model for independent variables. Age was categorized by three levels: younger than 45 years, 45 through 64 years, and 65 years or older. Education level was divided into three categories: (a) primary school education or less, (b) secondary school education, and (c) undergraduate education or more. Occupations were divided into categories of labor and nonlabor (including professionals such as lawyers, accountants, and doctors) jobs. Alpha was set at 0.05 to determine statistical significance.
Responses to the survey questions are summarized in Tables 1 through 6. The survey questions were divided into categories of familiarity with epilepsy (questions 1–3), knowledge about epilepsy (questions 4–9), and attitudes toward epilepsy (questions 10–16). In additions, beliefs in traditional myths and social awareness of local epilepsy-related organizations were studied.
Table 1. Summary of results for questions regarding familiarity with epilepsy
|Sex|| || || || || |
|Age (yr)|| || || || || |
|Education level|| || || || || |
| Never went |
| Primary school||11.00||65.20||34.80||20.70||79.30|
| Secondary |
| Postgraduate |
|Occupation|| || || || || |
Table 2. Summary of results for questions regarding understanding of epilepsy (causes and management)
|Sex|| || || || || || || || || || || || |
|Age (yr)|| || || || || || || || || || || || |
|Education level|| || || || || || || || || || || || |
| Never went to school||45.70||54.30||12.80||87.20||72.20||27.80||43.20||56.80||57.10||42.90||63.90||36.10|
| Primary school||61.50||38.50||5.40||94.60||78.70||21.30||51.60||48.40||56.50||43.50||69.30||30.70|
| Secondary school||73.60||26.40||1.50||98.40||64.20||35.80||52.30||47.70||54.90||45.10||58.40||41.60|
| Postgraduate studies||75.80||24.20||0.00||100.0||44.40||55.60||40.00||60.00||39.00||61.00||37.20||62.80|
|Occupation|| || || || || || || || || || || || |
Table 3. Summary of results for questions regarding attitude toward epilepsy
|Sex|| || || || || || || || |
|Age (yr)|| || || || || || || || |
|Education level|| || || || || || || || |
| Never went to school||83.80||16.20||68.40||31.60||15.00||85.00||46.20||53.80|
| Primary school||85.40||14.60||64.50||35.50||18.00||82.00||45.50||54.50|
| Secondary school||96.20||3.80||71.50||28.50||9.00||91.00||30.10||69.90|
| Postgraduate studies||98.00||2.00||81.30||18.70||6.90||93.10||20.40||79.60|
|Occupation|| || || || || || || || |
Table 4. Summary of survey on the myths and misunderstandings about epilepsy in Hong Kong
|1. Is epilepsy equivalent to psychiatric disorders?||10.40|
|2. Is it true that ingestion of mutton during pregnancy can cause epilepsy in offspring?||17.50|
|3. Is epilepsy related to possession by an evil spirit?||2.00|
|4. Generally speaking, should children with epilepsy study in a special school?||19.40|
|5. Generally speaking, are the IQ of persons with epilepsy lower than those of the normal population?||15.80|
|6. Can prolonged use of a computer cause epilepsy?||26.90|
|7. Do you agree that persons with epilepsy are “dangerous persons”?||6.30|
Table 5. Summary of survey on the social awareness of relevant organizations
|1. Do you know about the Hong Kong Epilepsy Association?||22.80|
|2. Do you know about the Community Rehabilitation Network?||59.00|
|3. What would you do if you wanted to obtain more information about epilepsy? |
|Ask social worker||7.90|
Table 6. Responses to questions about familiarity with epilepsy (Q I–III) and attitudes about epilepsy (Q IV–VII) in different countries
Our respondents were 46.2% men and 53.8% women. The age distribution were 18.4%, 26.6%, 22.2%, 17.4%, 11.0%, and 4.4% for age groups of 15–24, 25–34, 35–44, 45–64, 65–74, and older than 75 years, respectively. The sex ratio and age distributions of respondents are similar to demographic data from Hong Kong Special Administrative Region Government (8). The distribution of questionnaires was 18% (WCH), 26.6% (CB), 13.7% (WC), 16.8% (ST), and 24.8% (WTS).
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 epilepsy. Fifty-eight percent of respondents had heard about epilepsy, among whom, 55.0% had witnessed one or more seizures. Advanced age and labor occupations are independent variables associated with seizure witnessing. About 19% of respondents who had heard about epilepsy knew a friend with epilepsy, so 11.0% of all subjects or 18.9% of all respondents knew about epilepsy. No gender, age, educational level, or occupational differences were found (Table 1).
Understanding of epilepsy
The aspects of understanding of epilepsy were subdivided into knowledge on causes and management of epilepsy (Table 2).
Knowledge about causes of epilepsy
Seventy-one percent of the respondents believed that epilepsy was an “inheritable” disease, 2.6% believed that epilepsy was an infectious disease, and 61.9% believed that “all epileptic fits manifest symptoms of generalized tonic–clonic seizure.” Poorer education and older age were independently associated with the belief that epilepsy is a genetic disease and infectious disease, respectively. These two factors also were independent variables associated with the belief that all seizures are of the generalized tonic–clonic type.
Knowledge of the management of epilepsy
Forty-eight percent of respondents believed that epilepsy is a curable disease, and 56.1% believed that drug treatment is the only treatment modality available for epilepsy. Fifty-two percent of respondents believed that putting an object into patient's mouth during an epileptic seizure (generalized tonic–clonic seizure) to prevent tongue injury is appropriate. This belief was associated with a poorer education (p = 0.052). Interestingly, 32.2% of respondents learned this from television programs.
Attitudes toward epilepsy
The attitude of respondents was studied in detail. Nineteen percent of respondents would be inclined to conceal the diagnosis of epilepsy of their family member because they “felt ashamed for their family” (25.8%) and were “afraid of being discriminated” (58.4%). Twenty-two percent of respondents would terminate the employment of persons with epilepsy if a seizure occurred during work because of unreported epilepsy. Older age group and lower education level are independent variables associated with this attitude. Seventy-six percent of Hong Kong Chinese would like to offer help to persons with a seizure. Among those reluctant to offer their assistance, 2% did not want to help; 10.5% were afraid scared of epileptic seizures, and 73.7% did not know how to help (Table 3).
Ninety-four percent of respondents believed that persons with epilepsy can get married, and 72.5% of respondents believed that they can have their own children. Younger age (younger than 45 years) and better education were associated with a positive attitude toward marriage and pregnancy. Younger age is the only independent variable associated. Eleven percent of respondents objected to their children playing with children with epilepsy, and 32.3% objected to their children being married to persons with epilepsy. These attitudes were associated with an older age group and poorer education level. Older age was the only independent variable.
Myths or misbeliefs about epilepsy
About 10.4% of respondents considered epilepsy as equivalent to psychiatric disorders, and 2% of respondents believed that an epileptic disorder is related to possession by evil spirits. Older age was independently associated with both myths. Seventeen percent of respondents believed that consumption of mutton by women during pregnancy could cause the baby to have epilepsy. Female sex, older age, and poorer education were independently associated with the myth. Of respondents, 19.4% believed that children with epilepsy should be educated in special schools, and 15.8% of respondents believed that the average intelligence of children with epilepsy is subnormal. They were both associated with older age and poor education. We also found that 26.9% of respondents believed that prolonged use of computers would result in epilepsy. Last, 6.3% of respondents considered persons with epilepsy to be “dangerous persons.” Older age and poorer education also were independently associated with this belief (Table 4).
Social awareness of local epilepsy organizations
There are two active organizations for persons with epilepsy, the Hong Kong Epilepsy Association and Community Rehabilitation Network. Among respondents who knew about epilepsy, 22.8% had heard about the Hong Kong Epilepsy Association, and 59% had heard about Community Rehabilitation Network before the interview. There was an association between a better knowledge of epilepsy (knowing epilepsy is a curable disease) and hearing about the Hong Kong Epilepsy Association. Forty-nine percent of respondents would ask their physicians if they wanted more information about epilepsy, 39.9% would browse the Internet, 24.5% would look it up in the library, and 4.7% and 7.9% would ask teachers and social workers, respectively (Table 5).
This is the first study to try to understand the public awareness of, attitude toward, and understanding of epilepsy of the Chinese people in HKSAR, China. Historically, Hong Kong had been a British colony since the nineteenth century. The population increased from 32,983 (31,463 or 95% Chinese) in 1851 to 878,947 (859,425 or 97.8% Chinese) in 1931 and to >6.8 million now (8). Although >95% of our population is ethnic Chinese, British culture exerted a great influence on our society. In addition, with the introduction of a compulsory “9-year free” education policy, all students between the ages of 6 and 15 years are entitled to (or forced to have) free school education since 1970. Therefore with the improved education and western cultural inference, we expected that our survey would show results between similar studies performed in Western and Chinese societies.
Familiarity with epilepsy varies in different countries. Our data showed relatively fewer people familiar with epilepsy (58.2 vs. 73–97%). This is in parallel with a low percentage of people who knew someone with epilepsy (18.9 vs. 49–77%). However, we think the former was an underestimated figure. This could contribute to the negative attitude toward epilepsy, lack of interest, and unwillingness to answer questions related to epilepsy when we approached them for an interview.
The percentage of people who knew someone with epilepsy may have some relation to the prevalence of epilepsy in HKSAR. Eleven percent of all respondents knew someone with epilepsy. If each of them knew one patient with epilepsy without overlapping, the projected figures would be enormous. A much higher percentage of people who knew someone with epilepsy was reported in other Chinese societies (77% in China, 70% in Taiwan). This was attributed to their social structure. In Mainland China, this phenomenon was attributed to the overpopulated condition and closer interpersonal relationships (7). Our social structure is quite similar to that of New York City. People with epilepsy tend to limit their social circles, and this implies that a patient with epilepsy known by a respondent would rarely be known by another positive respondent, with the assumption that two respondents did not share a common social circle. Nevertheless, a community-based survey to study the prevalence and incidence of epilepsy will be necessary to confirm our speculation.
As suggested, the attitudes toward epilepsy in China were far more negative than those in other countries (4,7). Our study showed that the attitudes of local Hong Kong Chinese are much less negative compared with those of the Chinese in Mainland China and Taiwan (Table 6). We believe that the influx of western culture, improved general education standard, legislation against discrimination against the disabled, and efforts of social organizations are responsible for the difference. The percentage of parents objecting to their children playing with and marrying persons with epilepsy were only 11.2% and 32.3%, which is comparable to those of western countries like Italy and the United States (2,3). The attitude toward employment also was shown to be more positive than those of Mainland China and Taiwan, although still far more negative than those of the United States and Denmark (3,6). In reality, we think the negative image and attitude against epilepsy is still deeply rooted in the Chinese population. This can be reflected by almost one-fifth of respondents being reluctant to disclose the diagnosis if their family member had epilepsy. They “felt ashamed for their families” or were “afraid of being discriminated.” In the Chinese context, moral blame is applied not to the patient alone, but extends to the entire family. Ideas that attribute the cause of epilepsy to bad fate, heredity, negative geomantic forces, and the malign influences of gods, ghosts, or ancestors, are all accusations about the moral status of the family (9). Therefore this hypothetical question posed to the normal population is likely to underestimate the negative response compared with bona fide epilepsy patients, as Hong Kong Chinese are more reluctant to discuss their personal and family problems in public (10).
The understanding of epilepsy also was studied. In Hong Kong, 10.4% of respondents believed that epilepsy is a form of insanity. This figure lies between those of Mainland China and Taiwan (4,7). This was obviously due to the Chinese (Cantonese) name of epilepsy. Pronunciations are ‘din1 haan4 zing3’(11). ‘Din1’ means insanity. Similar confusion can also be found in West Germany between “insanity” and “Geisteskrankheit”(7). We also studied the myth that “epilepsy” in a baby is the consequence of mothers who ate mutton during pregnancy (12). Our survey showed 17.5% of respondents believed that consumption of mutton during pregnancy can cause an epileptic disorder in their children. Female sex, older age, and poor education were associated with it. It was attributed to another name of epilepsy is ‘joeng5, haan4, zing3’. The reason to label ‘epilepsy’ as ‘joeng5, haan4, zing3’ is because the vocalization during an epileptic seizure is similar to a bleat. The pronunciation of joeng5 is exactly the same as sheep in Cantonese.
Television is one of the most important inventions of the last century. However, it was the source of information for one third of respondents who thought putting an object into a patient's mouth is appropriate. Unfortunately, this misconception is still publicized by local television or radio stations. Furthermore, about one fourth of respondent wrongly believed that prolonged use of computer could result in epilepsy. This could be due to the confusion about photoconvulsive responses, which is a widely publicized idea in our locality.
Our survey used face-to-face interviews to achieve a better response rate. However, this was criticized because the response would be different compared with self-administrated questionnaires, as respondents tend to respond in a socially accepted way (5). Nevertheless, our study demonstrated a generally negative attitude toward epilepsy. Such misunderstandings, myths, negative attitudes, or misbehavior were significantly less in respondents with better educations and younger ages. In this locality, this could be due to the effort the government spent on education and the efforts of epilepsy organizations. Better understanding of epilepsy in respondents who knew of epilepsy-related organizations could evidently justify their existence.
In conclusion, this study showed a negative attitude toward epilepsy in the Hong Kong Chinese population. Future efforts and resources must be diverted to education and epilepsy-related activities to change the attitude of general public and to help those with epilepsy.
Acknowledgment: We express our deepest gratitude to the Hong Kong Epilepsy Association and Community Rehabilitation Network of The Hong Kong Society for Rehabilitation for completion of this survey. Their effort and assistance made this study a good foundation for designing the future direction of epilepsy-related community services in HKSAR.