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Survey of public awareness, attitudes, and understanding toward epilepsy in Nhan Chinh, Hanoi, Vietnam, in 2003 Le Quang Cuong a, * , Dinh Duc Thien b , Pierre Jallon c a Department of Neurology, Hanoi University of Medicine, Ton That Tung Street, Dong Da, Hanoi, Viet Nam b Training Center, Bach Mai Hospital, Hanoi, Viet Nam c Epileptology and EEG Unit, Cantonal Hospital of Geneva, Rue Micheli du Crest 24, CH-1211, Geneva 14, Switzerland Received 24 May 2005; revised 8 September 2005; accepted 25 September 2005 Available online 14 November 2005 Abstract Purpose. Many studies have shown that cultural and social awareness of, attitudes toward, and knowledge about epilepsy can have an impact on the acceptance of treatment. The aim of this study is to characterize public awareness of attitudes toward and understanding of epilepsy in a Vietnamese community and to compare results with those obtained in other cultures. Methods. A survey concerning the knowledge, attitudes, and practices of Vietnamese people with respect to epilepsy was carried out in the Nhan Chinh precinct of Hanoi. One thousand people were randomly selected for face-to-face interviews regarding epilepsy. Results. Of the subjects surveyed, 54.6% had heard of epilepsy; 45.5% knew someone with epilepsy; 49.2% had witnessed an epileptic seizure; 56% would not allow their son or daughter to marry someone with epilepsy; 42.1% did not believe that epileptic patients could hold down a normal job; 77.8% believed that epilepsy is an organic disorder of the brain; 23.8% thought that epilepsy is a form of demen- tia; and 91% thought that epileptic patients require medical care. Conclusion. As compared with surveys conducted in other countries, our survey showed that the awareness of epilepsy in this Viet- namese community is limited, and gives rise to alternative attitudes and practices. Ó 2005 Elsevier Inc. All rights reserved. Keywords: Epilepsy; Perceptions; Survey; Vietnam 1. Introduction Surveys of public awareness of, attitudes toward, and understanding of epilepsy have shown that national culture and lifestyle factors affect these dimensions. This has been demonstrated in Western [1,2,5] and some Asian [3,4,6–10] countries, but has never been studied in Vietnam. The pres- ent study, conducted in the Nhan Chinh community of Hanoi, Vietnam, was designed to explore awareness of, attitudes toward, and understanding of epilepsy and to compare these findings with those obtained in other countries. 2. Materials and methods The population of Vietnam, around 80 million, comprises numerous ethnic groups. The majority of persons with epilepsy are treated by psychiatrists, as the number of neurologists is small, no more than 100. The present study was conducted in 2003 in Nhan Chinh, a rural community situated in the peripheral region of Hanoi. Its population is 20,150. The purpose of this study was to gain better knowledge of the different attitudes and beliefs regarding epilepsy in Vietnam and the place of traditional therapy in a country where the treatment gap is probably similar to that in other developing countries. The study was approved by the health authority of the government of Vietnam, which also provided funding for the project. www.elsevier.com/locate/yebeh Epilepsy & Behavior 8 (2006) 176–180 1525-5050/$ - see front matter Ó 2005 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2005.09.012 * Corresponding author. Fax: +84 4 8525115. E-mail address: [email protected] (L.Q. Cuong).

Survey of public awareness, attitudes, and understanding toward epilepsy in Nhan Chinh, Hanoi, Vietnam, in 2003

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www.elsevier.com/locate/yebeh

Epilepsy & Behavior 8 (2006) 176–180

Survey of public awareness, attitudes, and understandingtoward epilepsy in Nhan Chinh, Hanoi, Vietnam, in 2003

Le Quang Cuong a,*, Dinh Duc Thien b, Pierre Jallon c

a Department of Neurology, Hanoi University of Medicine, Ton That Tung Street, Dong Da, Hanoi, Viet Namb Training Center, Bach Mai Hospital, Hanoi, Viet Nam

c Epileptology and EEG Unit, Cantonal Hospital of Geneva, Rue Micheli du Crest 24, CH-1211, Geneva 14, Switzerland

Received 24 May 2005; revised 8 September 2005; accepted 25 September 2005Available online 14 November 2005

Abstract

Purpose. Many studies have shown that cultural and social awareness of, attitudes toward, and knowledge about epilepsy can have animpact on the acceptance of treatment. The aim of this study is to characterize public awareness of attitudes toward and understanding ofepilepsy in a Vietnamese community and to compare results with those obtained in other cultures.

Methods. A survey concerning the knowledge, attitudes, and practices of Vietnamese people with respect to epilepsy was carried outin the Nhan Chinh precinct of Hanoi. One thousand people were randomly selected for face-to-face interviews regarding epilepsy.

Results. Of the subjects surveyed, 54.6% had heard of epilepsy; 45.5% knew someone with epilepsy; 49.2% had witnessed an epilepticseizure; 56% would not allow their son or daughter to marry someone with epilepsy; 42.1% did not believe that epileptic patients couldhold down a normal job; 77.8% believed that epilepsy is an organic disorder of the brain; 23.8% thought that epilepsy is a form of demen-tia; and 91% thought that epileptic patients require medical care.

Conclusion. As compared with surveys conducted in other countries, our survey showed that the awareness of epilepsy in this Viet-namese community is limited, and gives rise to alternative attitudes and practices.� 2005 Elsevier Inc. All rights reserved.

Keywords: Epilepsy; Perceptions; Survey; Vietnam

1. Introduction

Surveys of public awareness of, attitudes toward, andunderstanding of epilepsy have shown that national cultureand lifestyle factors affect these dimensions. This has beendemonstrated in Western [1,2,5] and some Asian [3,4,6–10]countries, but has never been studied in Vietnam. The pres-ent study, conducted in the Nhan Chinh community ofHanoi, Vietnam, was designed to explore awareness of,attitudes toward, and understanding of epilepsy and tocompare these findings with those obtained in othercountries.

1525-5050/$ - see front matter � 2005 Elsevier Inc. All rights reserved.

doi:10.1016/j.yebeh.2005.09.012

* Corresponding author. Fax: +84 4 8525115.E-mail address: [email protected] (L.Q. Cuong).

2. Materials and methods

The population of Vietnam, around 80 million,comprises numerous ethnic groups. The majority ofpersons with epilepsy are treated by psychiatrists, as thenumber of neurologists is small, no more than 100. Thepresent study was conducted in 2003 in Nhan Chinh, arural community situated in the peripheral region ofHanoi. Its population is 20,150.

The purpose of this study was to gain better knowledgeof the different attitudes and beliefs regarding epilepsy inVietnam and the place of traditional therapy in a countrywhere the treatment gap is probably similar to that in otherdeveloping countries. The study was approved by thehealth authority of the government of Vietnam, which alsoprovided funding for the project.

L.Q. Cuong et al. / Epilepsy & Behavior 8 (2006) 176–180 177

2.1. Respondents

A list of all people living in Nhan Chinh was providedby the municipal authorities. One thousand families wererandomly selected, and only one person per familyanswered the questionnaire. The interview was conductedat the respondents� homes. In all, 1000 subjects rangingin age from 15 to 80 years completed the questionnaires.Only subjects who had not had or were not currently expe-riencing seizures, who were not mentally ill, and who werenot in a medical profession were included. All participantsspoke Vietnamese. Only one Vietnamese term is used forepilepsy (dong kinh). All interviews were backtranslatedinto English to make sure that the meaning was notdistorted.

2.2. Survey methods

The survey team consisted of a group of students in thePublic Health Department and neurologists in theDepartment of Neurology (Hanoi University of Medicine)who were well trained in conducting surveys. The respon-dents were interviewed individually by a single interviewerin person. The interview consisted of 10 questions used inpreviously published studies [1,6,8,9] and translated intoVietnamese:

Q1: Have you ever heard or read about the diseasecalled ‘‘epilepsy’’ or a convulsive seizure?

Q2: Did you ever know anyone who had epilepsy?Q3: Have you ever seen anyone having a seizure?Q4: Would you object to your children associating

with people who sometimes have seizures?Q5: Would you object if your son or your daughter

wanted to marry a person who sometimes hasseizures?

Q6: Do you think people with epilepsy should beemployed in the same jobs held by peoplewithout epilepsy?

Q7: Do you think epilepsy is a form of insanity?Q8: What do you think is the cause of epilepsy?Q9: What do you think an epileptic attack is?Q10: If one of your relatives had epilepsy, what kind of

treatment would you suggest?

When respondents were unable to understand the ques-tions fully, questions were explained but any suggestion orhint was strictly avoided.

2.3. Data analyses

The statistics program SPSS 10.0 was used to assess thestatistical significance (P < 0.05) of the relationship betweensurvey responses and respondent�s age, sex, marital status,occupation, level of education, and number of offspring. v2

tests were used to assess responses and group differences(P < 0.05 was considered significant).

3. Results

One thousand subjects, including 380 males and 620females (male/female ratio = 1/1.63), participated in thesurvey. The mean age was 42.3 years.

3.1. Familiarity with epilepsy

As shown in Table 1, 54% of respondents had read orheard about epilepsy, 54.5% knew someone with epilepsy,and 49.2% had seen someone having a seizure. The percent-age of ‘‘yes’’ responses to the first question (Q1) was higheramong respondents under 50 years of age and with no off-spring (61.5%) (P < 0.05). The percentage of ‘‘yes’’ answersto Q1 was highest in the group with the highest level ofeducation (64.3%) and lowest in agricultural workers(34.4%) (P < 0.05). For Q2, the highest percentage of‘‘yes’’ responses was recorded for the group of marriedpeople (47.9%), and the lowest, among students and pupils(26.7%) (P < 0.05). For Q3, most of the respondents whohad ever observed a seizure were more than 50 years ofage (57.5%) (P < 0.05).

3.2. Attitudes toward epilepsy

Eighty-one percent of respondents said they wouldallow their children to play with a person with epilepsy.In multivariate analyses, this positive attitude was notassociated with age, sex, or marital status. The percent-age was the highest in the agricultural workers. Fifty-six percent of respondents objected to their children mar-rying someone with epilepsy. This response was correlat-ed with sex, number of offspring, education, andoccupation. Just over 41% of respondents thought thatan epileptic person should not be employed. This nega-tive attitude was correlated with level of education andoccupation. Nearly 24% of respondents believed that epi-lepsy is a type of dementia, and this response was corre-lated with level of education. Respondents with three ormore children (12.5%) and those with lower levels ofeducation (14.4%) were less likely than other groups toobject to their children associating with people whosometimes had seizures. More female (58.9%) than male(51.3%) respondents objected (P < 0.05). Respondentswith three or more children (67.5%) and those who wereilliterate (47.7%) were more likely than other groups toobject to their children marrying a person with epilepsy(67.5%) (P < 0.05), whereas students were less likely toobject (51.4%).

The percentage of respondents who thought peoplewith epilepsy should be employed in the same jobsheld by people without epilepsy was higher amonghighly educated respondents (64.6%) relative to lesseducated respondents (P < 0.05). The highly educatedgroup also was significantly less likely than other edu-cation groups to believe that epilepsy was a form ofinsanity (Table 2).

Table 1Responses to questions about familiarity with epilepsya

Results No. of responses Q1 Q2 Q3

Yes (%) No (%) Yes (%) No (%) Yes (%) No (%)

Total 1000 54.6 45.4 45.5 54.5 49.2 50.8Age15–29 230 64.8 35.2 40 60 46.5 53.530–49 452 54.9 45.1 44.7 55.3 44.7 55.3>50 318 46.9 53.1 50.6 49.4 57.5 42.5

SexMale 380 58.4 41.6 47.9 52.1 48.7 51.3Female 620 52.3 47.7 44 56 49.5 50.5

Marital statusNever married 201 60.2 39.8 35.8 64.2 41.3 58.7Married 799 53.2 46.8 47.9 52.1 49.5 50.5

No. of offspring0 252 61.5 38.5 40.5 59.5 48 521 or 2 668 52.2 47.8 46.7 53.3 49.1 50.9>3 80 52.5 47.5 51.3 48.7 53.8 46.2

EducationNever went to school and primary 111 36.9 63.1 42.3 57.7 45 55Secondary 332 45.8 54.2 48.2 51.8 48.5 51.5Upper 557 63.4 36.6 44.5 55.5 50.4 49.6

OccupationPupil and student 105 59 41 26.7 73.3 38.1 61.9Functionary 388 64.7 35.3 46.9 53.1 50.8 49.2Farmers 32 34.4 65.6 50 50 46.9 53.1Others 475 46.7 53.3 48.2 81.8 50.5 49.5

a Three questions were asked. Q1: Have you ever heard or read about the disease called ‘‘epilepsy’’ or a convulsive seizure? Q2: ‘‘Did you ever knowanyone who had epilepsy?’’ Q3: ‘‘Have you ever seen anyone having a seizure?’’

178 L.Q. Cuong et al. / Epilepsy & Behavior 8 (2006) 176–180

3.3. Understanding of epilepsy

More than three-fourths of respondents (77.8%) thoughtbrain lesions caused epilepsy, 24.2% thought that epilepsywas akindofmental disorder, and 19%believed that epilepsywas a hereditary disease. Only 6.6% did not know the causeof epilepsy, and 3.7% thought epilepsywas caused by a blooddisorder (Table 3).

As for the clinical manifestation of epilepsy, most respon-dents thought that convulsions (87.5%) and loss of con-sciousness (33.5%) were clinical symptoms of epilepsy,whereas 27.3% identified changes in behavior as reflectiveof epilepsy. Periods of amnesia were considered to be mani-festations of epilepsy among 17.9% of respondents. Only2.5% of respondents did not knowwhat epilepsy is (Table 4).

With respect to the treatment of epilepsy, only 1% ofrespondents suggested a ‘‘witch doctor,’’ 0.4% thoughtthere was ‘‘no need to treat,’’ 2% did not know what to rec-ommend to a relative who had epilepsy, 3.4% thought thatepilepsy was untreatable, and 5.1% asked for God�s help.By contrast, 91.7% of respondents believed that epilepsyshould be treated by medical doctors, 12.8% by acupunc-ture, and 8.5% by herbal medicine (Table 5).

4. Discussion

Familiarity with epilepsy varies in different countries andover different periods. In this study, we wanted to compare

our results with those of previous studies conducted in Asiaand in the West although, strictly speaking, we did not usethe same methodology. The percentages of respondentswho had ‘‘heard or read about epilepsy,’’ ‘‘knew someonewith epilepsy,’’ and ‘‘saw someone having a seizure’’ in pre-vious studies were 93, 77, and 72% in China (1988) [6]; 87,70, and 56% in Taiwan (1992) [3]; 91, 56, and 33% inMalaysia (1998) [8]; 82, 25, and 78% in Myanmar (2002)[9]; and 95, 73, and 67% in New Zealand (2002) [4]. Inthe current study, 54.6% of respondents had read or heardabout epilepsy, 54.5% knew someone with epilepsy, and49.2% had seen someone having a seizure. The smallernumber of our respondents who had ‘‘heard or read aboutepilepsy’’ as compared with previous surveys and the rela-tive similarity of the percentages of ‘‘yes’’ responses to Q1and Q3 revealed that most of our respondents with knowl-edge about epilepsy must have acquired it through directobservation of a seizure or through contact with patientswith epilepsy. This might indicate that the public healtheducation about epilepsy is still limited.

In terms of attitudes toward epilepsy, our results for Q4were close to those of the Taiwanese survey and more posi-tive than those of some of the other Asian surveys (Myan-mar, Malaysia, China), but less positive than the results ofthe New Zealand study (2%). Although only 18.7% ofrespondents objected to having their children play with aperson with epilepsy, 56% objected to their children marry-ing someone with epilepsy, 42.1% thought that a person

Table 2Responses to questions about attitudes toward epilepsya

Results No. of responses Q4 Q5 Q6 Q7

Yes (%) No (%) Yes (%) No (%) Yes (%) No (%) Yes (%) No (%)

Total 1000 18.7 81.3 56.0 44.0 57.9 42.1 23.8 76.2Age of respondents

15–29 230 19.1 80.9 51.3 48.7 60.9 39.1 24.8 75.230–49 452 21.5 78.5 56.9 43.1 58.4 41.6 23.2 76.8>50 318 14.5 85.5 58.2 41.8 55 45 23.9 76.1

Sex of respondentsMale 380 16.3 83.7 51.3 48.7 54.5 45.5 25.8 74.2Female 620 20.2 79.8 58.9 41.1 60 40 22.6 77.4

Marital statusNever married 201 18.9 81.1 54.6 45.3 60.2 39.8 27.9 72.1Married 799 18.6 81.4 56.3 43.7 57.3 42.7 22.8 77.2

No. of offspring0 252 19.8 80.2 55.2 44.8 59.5 40.5 26.6 73.41 or 2 668 19 81 54.9 45.1 57.6 42.4 22.5 77.5>3 80 12.5 87.5 67.5 32.5 55 45 26.3 73.7

EducationNever went to school and primary 111 14.4 85.6 47.7 52.3 42.3 57.7 27 73Secondary 332 18.4 81.6 58.7 41.3 51.8 48.2 26.2 73.8Upper 557 19.7 80.3 56 44 64.6 35.4 21.7 78.3

OccupationPupil and student 105 24.8 75.2 51.4 48.6 58.1 41.9 23.8 76.2Functionary 388 20.6 79.4 55.2 44.8 63.9 36.1 20.6 79.4Agricultural 32 3.1 96.9 65.6 34.4 46.9 53.1 18.8 81.2Others 475 16.8 83.2 57.1 42.9 53.7 46.3 26.7 73.3

a Four questions were asked. Q4: Would you object to your children associating with persons who sometimes have seizures? Q5: Would you object ifyour son or your daughter wanted to marry a person who sometimes has seizures? Q6: Do you think people with epilepsy should be employed in the samejobs held by people without epilepsy? Q7: Do you think epilepsy is a form of insanity?

Table 3Responses to the question ‘‘What do you think is the cause of epilepsy?’’a

Response %

Brain disease, cerebral disorders 77.8Mental or emotional disorders 24.2Hereditary 19.0Birth defect 7.2Don�t know 6.6Blood disorder 3.7

a Multiple answers were allowed. The number of respondents was 1000.

Table 4Responses to the question ‘‘What do you think an epileptic attack is?’’a

Response %

Convulsions 87.5Loss of consciousness 33.5Changes of behavior 27.3Periods of amnesia 17.9Don�t know 2.5

a Multiple answers were allowed. The number of respondents was 1000.

Table 5Responses to the question ‘‘If a relative had epilepsy, what kind oftreatment would you suggest?’’a

Response %

Ask for an medical doctor 91.7Acupuncture 12.8Herbal medicine doctor 8.5Ask for God�s help 5.1Think epilepsy is untreatable 3.4Don�t know what to recommend 2.0No need to treat 0.4Ask for a ‘‘witch doctor’’ 0.1

a Multiple answers were allowed. The number of respondents was 1000.

L.Q. Cuong et al. / Epilepsy & Behavior 8 (2006) 176–180 179

with epilepsy should not be employed, and 23.8% consid-ered epilepsy to be a form of insanity. These results mayindicate that although they knew epilepsy was not conta-gious, respondents still lacked basic information aboutthe disease.

Concerning the understanding of epilepsy, 77.8% ofrespondents considered a brain lesion to be the main causeof epilepsy, although familiarity with this disease was limit-ed. This percentage was even greater than those of surveysconducted in China in 1988 (25%) [6], Taiwan in 1992(20%) [3], Myanmar in 2002 (33%) [9], and Malaysia in1998 (11%) [8]. This phenomenonmight be explained by lan-guage and/or cultural nuances unique to Vietnam. The termepilepsy, when translated into Vietnamese, comprises twowords: dong kinh; dong means ‘‘moving’’ and kinh means‘‘terrible.’’ During recent years, infectious diseases of thenervous system (such as meningitis and encephalitis) havebeen common, and often include convulsions. Therefore,

180 L.Q. Cuong et al. / Epilepsy & Behavior 8 (2006) 176–180

respondents may have linked a ‘‘terrible convulsion’’ to abrain lesion even though they lacked information about epi-lepsy. When talking about the relationship between epilepsyand mental disorders, 24.2% of respondents in the presentsurvey thought that epilepsy was a type of dementia. Thispercentage was closer to that in the Malaysian survey(23%) [8], but less than those in the surveys in China (17%)[6], Singapore (15%) [7], Taiwan (8%) [3], and New Zealand(4%) [4]. In Vietnam, epilepsy is under the control, by law, ofthe psychiatric branch, so patients with epilepsy are referredto psychiatrists. Treatment by a psychiatrist may give thewrong impression about epilepsy.

Knowledge about the relationship between epilepsy andheredity was not as good as in other Asian countries. Incontrast to the high percentage of respondents (56%)objecting to their children marrying a person with seizures,only 19% of respondents thought of hereditary issues ascompared with 23% in Myanmar (2002) [9], 30% in Singa-pore (1999) [7], 20% in Taiwan (1992) [3], and 25% in China(1998) [6]. This may indicate ambiguity about the heredityof epilepsy in the community interviewed. As for the clini-cal manifestations of epilepsy, 87.5% chose convulsion asan important sign. Loss of consciousness (33.5%) wasendorsed by fewer respondents in this survey than in thestudies conducted in Asian countries: 60% in Myanmar(2002) [9], 52% in Taiwan (1992) [3], and 59% in China(1988) [6]. In addition, 27.3% of respondents regardedchanges in behavior and periods of amnesia to be manifes-tations of epilepsy, indicating their confusion of epilepsywith other diseases. With respect to the question concern-ing treatment of epilepsy, 91.7% of respondents wantedto consult a medical doctor; this percentage was higherthan the 74% reported in Myanmar [9], 63% in Taiwan[3], and 55% in China [6]. Such behavior is common amongVietnamese people: most Vietnamese tend to ask Westerndoctors for medical care, and acupuncture is consideredan add-on method.

The present study was conducted in a rural area nearHanoi, the capital of Vietnam. The respondents may not

be representative of the entire Vietnamese population withits diverse cultural background, so the results of this surveymay not reflect the true knowledge of, understanding of,and attitudes toward epilepsy of the Vietnamese people.However, we hope that this study may help patients withepilepsy and their families by influencing changes in publichealth education programs, outcomes of treatments, andformation of support groups or associations, which mustbe adapted to the specific cultural nuances of Vietnam.Further studies using the same questionnaire have beenrecommended to the authorities in different geographicareas of Vietnam.

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