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Epilepsy & Behavior 10 (2007) 565–570

Epilepsy in Laos: Knowledge, attitudes, and practices in the community

Duc-Si Tran a,c, Peter Odermatt a,b, Soukhanthone Singphuoangphet a,Michel Druet-Cabanac c, Pierre-Marie Preux c, Michel Strobel a, Hubert Barennes a,*

a Institut de la Francophonie pour la Medecine Tropicale, Vientiane, Lao Democratic people’s Republicb Department of Public Health & Epidemiology, Swiss Tropical Institute, Basel, Switzerland

c Institut d’Epidemiologie Neurologique et de Neurologie Tropicale (EA 3174), Limoges, France

Received 8 January 2007; revised 23 February 2007; accepted 27 February 2007Available online 18 April 2007

Abstract

Objective. We evaluated beliefs about, attitudes toward, and stigma associated with epilepsy in four districts of central Laos.Method. For this study, 83 people with epilepsy, 83 family members, and 166 matched villagers in Vientiane Province were interviewed.Results. From patients to families to villagers, there existed a significantly increasing gradient of misbeliefs. Dubbed locally as ‘‘mad

pig disease,’’ epilepsy was viewed as having a supernatural origin by 25–42% of respondents, a life-threatening disease by 60%, a diseasetransmissible by consumption of pork meat by 10–21%, and a disease transmissible by contact with patients’ saliva by 14.5% of patientsand 44% of villagers (P < 0.01). Stigma was high. People thought that they should avoid contact or sharing meals with patients (15% ofpatients, 62% of family members, P < 0.001), and that persons with epilepsy should not get a job, get married (29 and 42%, P < 0.016), orraise children (33–42%).

Conclusion. Wrong beliefs may lead to stigma and hamper access to or compliance with modern epilepsy treatment. In traditionalcountries, education is the cornerstone of epilepsy management.� 2007 Elsevier Inc. All rights reserved.

Keywords: Epilepsy; Behavior; Knowledge; Attitude; Stigma; Laos

1. Introduction

Epilepsy is characterized by an enduring predispositionto generation of epileptic seizures and by their neurobio-logical, cognitive, psychological, and social consequences[1]. It is often given a social label rather than a medical con-sideration [2], which, together with misunderstanding andfear, may result in stigmatization and discrimination ofpatients, even in developed countries where access to infor-mation is high [3]. People with epilepsy (PWE) are gener-ally perceived as being mentally ill and a cause of socialdisturbances. Hence, their quality of life is dramaticallyreduced compared with that of the general population.Successful integration of PWE into the educational andprofessional sectors of society is an important step in the

1525-5050/$ - see front matter � 2007 Elsevier Inc. All rights reserved.

doi:10.1016/j.yebeh.2007.02.018

* Corresponding author. Fax: +856 21219347.E-mail address: hubert.barennes@auf.org (H. Barennes).

disease control process [4]. Stigma generates a vicious cir-cle, where lack of general knowledge hinders social accep-tance, which in turn drives the patient to hide the disease,and makes it difficult to increase people’s awareness of it.

The consequences of epilepsy in terms of morbidity,mortality, quality of life, and stigma differ around theworld, depending on the cultural, economic, and commu-nity health background.

Lao People’s Democratic Republic (Lao PDR) is asmall, landlocked country, sharing borders with Vietnamand Cambodia (the former Indochina) and also with Thai-land, China, and Myanmar (Burma) (Fig. 1). The popula-tion is 5.6 million, mostly rural (87.8%) and multiethnic(some 45 different ethnic groups), with the lowest popula-tion density of Southeast Asia (24 inhabitants/km2); 50%of Lao nationals are below 20 years of age, average house-hold size in villages is 5.9, and life expectancy at birth is 61years (National Census 2005). The main resources are

VIETNAM

CHINA

MYANMAR

THAILAND

CAMBODIA Study areas

Vientiane province

Vientiane capital

Fig. 1. Map of Lao People’s Democratic Republic highlighting study areas.

566 D.-S. Tran et al. / Epilepsy & Behavior 10 (2007) 565–570

agriculture, with rice as the staple food, mining, and for-estry. Lao PDR has an annual per capita income of US$491 and ranks 133 among 177 countries with respect tothe Human Development Index (UNDP, 2006).

Laos, with an estimated epilepsy prevalence of 7.7% [5],has no national guidelines for epilepsy, which may be unfa-miliar to the general population and health care profession-als. We assessed knowledge, attitudes, and practices (KAP)of PWE, their close relatives, and the general population ina predominantly rural area of central Laos.

2. Methods

We conducted the study in Vientiane Province, in three rural districts60–120 km north of Vientiane City (Ponhong, Hinheub, and Thoulak-home) and one urban district (Sikkhottabong, Vientiane City), whereprograms on diagnosis, treatment for epilepsy were set up in 2003 bytwo self-funded nongovernmental organizations, Handicap International(HI) and Institut de la Francophone pour la Medecine Tropicale (IFMT).

People in the community suspected of having epilepsy could either self-refer themselves to these programs or be referred by village health careworkers, on a voluntary basis. PWE were selected from HI and IFMTfiles, which ensures a correct diagnosis of the disease [5]. All PWE agedP10 were eligible to participate, except those with severe mental retarda-tion making them unable to understand or answer questions. All partici-pants gave informed oral consent. The study received approval from thenational ethics committee of Laos.

2.1. Procedure

The study team consisted of one experienced neurologist and four gen-eral practitioners. All PWE were visited at home. After consent, their med-ical history and clinical status were assessed for diagnostic confirmation,and they were then interviewed following a structured questionnaire.The same questionnaire was used for caregiver family members (one for

each person with epilepsy living in the same household) and for commu-nity members (two for each person with epilepsy living in the samevillage). The latter community members were selected by random fromthe list of villagers provided by the head of the village, and matched forage and gender to PWE.

The questionnaire, comprising 108 items with nine open questions, waspresented in the Lao language by native Lao speakers (SS). It covered thefollowing topics: knowledge of and beliefs about epilepsy, presumedcauses and natural history, harm to the patient and the community, treat-ment options and their efficacy, individual and community attitudestoward PWE, and, finally, practices, that is, how to deal with PWE andseizures, including first-aid management (see Appendix A).

2.2. Definitions

Diagnosis of epilepsy was based on clinical grounds. Epilepsy wasdefined by the recurrence of two or more episodes of seizures with animmediate identifiable cause. Multiple seizures occurring in a 24-hour per-iod, or status epilepticus, were considered a single event. Individuals whohad only febrile seizures or only neonatal seizures were excluded, as rec-ommended by the International League Against Epilepsy (ILAE) [6].Active epilepsy was defined as at least one epileptic seizure in the previous5 years, regardless of antiepileptic treatment [6].

According to the ILAE, epilepsy is classified into three etiologic catego-ries: idiopathic, cryptogenic, and symptomatic (the last including central ner-vous system insults such as infection, trauma, vascular disease, and tumor).Allocation into the symptomatic category was based on clinical grounds, thatis, medical history and examination; imaging facilities were not available.

2.3. Data management and analysis

Data were processed using Epidata (www.epidata.dk, Odense,Denmark) and Stata, Version 8 (Stata Corp., College Station, TX,USA). Frequency analysis was performed for each group interviewed(PWE, relatives, and community members). Frequencies were comparedusing Fisher’s exact test. The significance threshold was set at 0.05.

D.-S. Tran et al. / Epilepsy & Behavior 10 (2007) 565–570 567

3. Results

Among 94 eligible PWE, all consented to the interview;11 were unable to answer questions, and were thereforeexcluded from the study. Most of the interviewed persons(73.4%) lived in rural areas. In total, 332 persons wereinterviewed: 83 PWE, 83 relatives, and 166 villagers.

3.1. Demographics

There were no differences (P = 0.8) between the PWEand control villagers with respect to mean age [30.7, 95%confidence interval (CI) = 27.7–33.7; and 31.1, 95%CI = 29.0–33.1, respectively], or male:female sex ratio(1.1:1 for both groups).

Among the 83 relatives of PWE (mean age: 42.8 ± 15.0,66% female), 49 (59.0%) were patients’ parents, 7 (8.4%)were brothers/sisters, 9 (10.8%) were husbands/wives, and18 (21.7%) were other close relatives, living with thepatient.

3.2. Clinical description of epilepsy

Seventy-nine patients (95.2%) had active epilepsy. Ageat onset peaked between 12 and 20 years (21 cases,25.3%). Generalized seizures (70 cases, 84.3%) were morecommon than partial seizures (13 cases, 15.7%). Eighteenpatients (19.1%) were mentally retarded, 11 of whom wereseverely retarded. Fourteen patients (16.9%) had idio-pathic, 28 patients (33.7%) had symptomatic, and 41patients (49.4%) had cryptogenic epilepsy. Symptomaticepilepsy included head trauma (11 cases, 39.3%), centralnervous system infection (9 cases, 32.1%), and unexplainedfebrile infection (8 cases, 28.6%). Seventy-seven patients(92.8%) were being treated with phenobarbital, three withdiazepam, and two with carbamazepine. Complaints aboutside effects of antiepileptic treatment included: somnolence(17 cases, 20.5%), ataxia (1 case), and difficulty concentrat-ing (5 cases, 6.0%).

3.3. Knowledge about epilepsy and its cause

The Lao word for epilepsy in Lao is sak pa moo, whichmeans ‘‘mad pig disease.’’ Wrong beliefs were common inthe three groups and, with few exceptions, followed anoften significant ascending gradient from patients to fami-lies to villagers. Common misbeliefs regarding the natureand cause of epilepsy included: relationship to dementia(epilepsy was viewed as a symptom of dementia by 44.6–59% respondents), supernatural origin (25.5–42.2%), andcontagiousness (38.5% for PWE to 57.2% for villagers,P = 0.005). Contact with the saliva of a person with epi-lepsy was believed to be a common mode of transmissionof the disease, much less so by PWE (14.5%) than by theirrelatives (26.5%; P = 0.005) and other villagers (44.0%,P < 0.001) (Table 1). Most people said they did not believea supernatural power (<8% did believe) or traditional med-

icine (18.1–25.9% did believe) would be good options fortreatment of epilepsy, and more than 75% deemed thatantiepileptic treatment would require long-term participa-tion. However, all groups shared a similar pessimistic viewabout the prognosis of epilepsy: about 60% of respondentsthought it was a fatal disease (Table 2).

3.4. Attitudes and social practices toward PWE

Most patients (89.2%) said they had received advice andrecommendations from either relatives or neighborsregarding the possible harm associated with their disease.They were warned against swimming or fishing alone(86.7%), climbing a tree or a mountain or entering a houseon stilts (which is the traditional Lao house) (75.9%), anddriving a motor vehicle (73.5%). On the other hand, inap-propriate stigmatizing attitudes toward PWE were fre-quently reported in the village and within the families,with quite similar rates in the three groups: fear, ill speak-ing, children’s mockery, exclusion from social life. As anexample, family members reported they would restrict aperson with epilepsy from sharing meals with them(62.7%) or from marrying someone from their household(61.4%) (Table 3).

3.5. First-aid for seizures

Some 75% of villagers had ever seen an epileptic sei-zure, and reported either appropriate first-aid practices,such as pulling the patient away from danger (92%),removing food from the mouth (33%), or inappropriatepractices, like preventing tongue biting (44%), drippinglemon juice into the patient’s mouth (28%), binding thelimbs tight (16%), and avoiding contact with saliva whilehelping (42%) (Table 4).

4. Discussion

Our data indicate that the Lao people’s knowledge ofepilepsy is limited, and crippled by misbeliefs. They were,however, knowledgeable about some aspects: causes of epi-lepsy (cerebral diseases and head injury, drug or alcoholabuse, heredity, and a surprising relationship to pigs),treatment requirements, first-aid practices, recommenda-tions to PWE, and differentiation between epilepsy anddementia (about 50% of respondents). In previous studiesin Taiwan, Hong Kong, and Malaysia, epilepsy was largelyconfused with dementia by 90% of the interviewees [7–9].In Vietnam, about 25% of the population viewed epilepsyas a mental disorder, and according to the law, PWE mustbe managed by psychiatrists, which may increase the mis-conception in the community [10]. On the other hand, wefound that one-third of our respondents considered epi-lepsy to have a supernatural origin. Similar statementswere reported elsewhere, more in Africa (53.5%) than inEurope (France, 12.0%) [11]. Epilepsy was also commonlyviewed (up to 37%) as a punishment for misbehavior

Table 1Knowledge of and beliefs about the nature and cause of epilepsy

Case (n = 83) Family (n = 83) Villager (n = 166)

No. (%) No. (%) No. (%)

Symptom of insanity 45 54.2 49 59.0 74 44.6Cause of insanity 24 28.9 32 38.5 57 34.3Caused by supernatural forces 21 25.3 35 42.2 62 37.3

Punishment for misconduct in previous life 13 15.7 31 37.3 43 25.9Caused by malevolent spirits, ghosts, people 15 18.1 17 20.5 32 19.3

Contagious disease transmissible by 32a 38.5 43 51.8 95a 57.2Contact with saliva 12b 14.5 22 26.5 73b 44.0Consumption of pork meat 9 10.8 18 21.7 35 21.1Sexual intercourse 9 10.8 13 15.7 10 6.0Casual physical contact 6 7.2 6 7.2 6 3.6

Inherited disease 31 37.3 35 42.2 79 47.6Related to drug or alcohol abuse 20 24.1 23 27.7 41 24.7Related to head injury 31 37.3 44 53.0 82 49.4

Cerebral dysfunction 44 53.0 68 81.9 106 63.9Affective stress 16 19.3 28 33.7 26 15.7

a P = 0.005.b P < 0.001.

Table 2Knowledge of and beliefs about natural history and treatment of epilepsy

Case (n = 83) Family (n = 83) Villager (n = 166)

No. (%) No. (%) No. (%)

Epilepsy is a fatal disease 47 56.6 51 61.4 98 59.0Cure is achievable by magical/religious practices: prayers or amulets 6 7.2 3 3.6 13 7.8Cure is achievable by traditional medicine 15 18.1 15 18.1 43 25.9Spontaneous cure is possible 11 13.5 19 22.9 24 14.5Cure is achievable by modern medication 64a 77.1 73a 88.0 120 72.3Cure requires long-term medication 63 75.9 66 79.5 137 82.5

a P = 0.006.

Table 3Social attitudes toward and stigmatization of epilepsy

Case (n = 83) Family (n = 83) Villager (n = 166)

No. (%) No. (%) No. (%)

PWE are given specific advice from relatives or community 74 89.2 82 98.8 164 98.8PWE may be victims of ill thoughts/speaking 49 59.0 44 53.0 66 39.8PWE may be mocked by children because of their seizures 28 33.7 28 33.7 41 24.7PWE may scare others because of their seizures 45 54.2 50 60.2 96 57.8PWE may be excluded from village activities 16a 19.3 31a 37.4 35 21.1PWE may be excluded (discouraged) from sharing meals 13b,c 15.7 52b 62.7 58c 34.9PWE may be restricted from marriage 37d 44.6 35 42.2 48d 28.9PWE may be restricted from having children 40e 48.2 35 42.2 56e 33.7People would object to their children marrying a PWE 50 60.2 51 61.4 103 62.0

a P = 0.01.b P < 0.001.c P < 0.001.d P = 0.014.e P = 0.027.

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during preceding lives, according to Buddhist faith, whichis dominant in Laos. However, most people (>75% in allthree groups) believed that epilepsy could not be curedby prayer or traditional medicine (which they had probablytried in vain), similar to previous findings in Vietnam [10],

but in contrast to data from Africa, where around 50% ofpeople thought prayer was the way to cure epilepsy [11].

More important, because of their leading to exclusionand stigma [12], are the widely shared beliefs that epilepsyis a fatal disease (some 60% in all three groups) and a

Table 4Facing a seizure: practices among family members and villagers

Family (n = 83) Villagers (n = 166)

No. (%) No. (%)

Has ever seen an epileptic seizure 80 96.4 124 74.7Avoid touching patients during seizures 2 2.4 8 4.8Avoid touching patient’s saliva 19a 22.9 71a 42.8Bind the patient or keep hold of the patient’s limbs 9 10.8 27 16.3Try to drip lemon juice into the patient’s mouth 23 27.7 48 28.9Try to push drugs into the patient’s mouth 5 6.0 2 1.2Promptly move the patient away from immediate danger 73 88.0 154 92.8Lay the patient on his or her side. 14 16.9 18 10.8Remove food from mouth 29 34.9 56 33.7Prevent tongue biting (any means) 32 38.5 73 44.0

a P < 0.001.

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contagious disease (57% in villagers), that can be caughtthrough routine or casual activities such as sharing drinksor meals, having a sexual intercourse (15.7% of familyrespondents), or having contact with a patient’s salivawhile providing first-aid during seizures. The idea of salivatransmission was much more prevalent in villagers and rel-atives (44 and 26%, respectively), than in PWE (14%,P = 0.005 for comparison with villagers), and is of majorconcern. It should be specifically addressed by public edu-cation programs.

Obviously, the present study has some limitations,partly inherent to the interview method. It was conductedin a population that in many respects (gender, age, house-hold size, income, urban/rural, and ethnicity balance)tended to be comparable to Laos’ general population.However, the social representations and attitudes, or theirexpression, may have been altered by the specific epilepsyprograms underway; moreover, the variability of these rep-resentations in different ethnic groups may be significantand should be specifically addressed.

That the Lao people call epilepsy ‘‘mad pig disease’’ sug-gests that they have long considered a link to exist betweenepilepsy and pigs, which raises questions about traditionalawareness of cysticercosis. The taboo placed on pork con-sumption by PWE may explain the surprising low seropre-valence of cysticercosis in PWE in Laos [none in 31 PWE vs6 in 124 controls (4.8%) from Hinheub rural district] (Tran,2005, unpublished data).

All of these deeply rooted misconceptions may explainthe widespread attitudes of fear, mockery, and social exclu-sion. Reluctance to allow one’s children to marry PWE(28.9% villagers, 44.6% PWE, P = 0.014) was reported inprevious Asian studies from Taiwan (28.0%) and HongKong (67.8%) [7,13]. Even in Europe, patients with epi-lepsy face difficulties getting married and have fewer chil-dren than the general population [14].

According to ILEA and WHO, epilepsy is a neglecteddisease, although effective, cheap, and well-tolerated treat-ment options are available. This statement appears partic-ularly relevant in deprived countries like Laos. Untreated,uncontrolled epilepsy is a well-recognized, heavy burden

for the affected individuals, their families, and the commu-nity. Moreover, in poor countries, this negligence also leadsto substantial premature death, as previously reported in across-sectional study in Laos with a 9.9% case fatality rate[5]. To conclude, this first KAP study on epilepsy in Laosprovides insights into popular beliefs, which should beaddressed to design future programs on epilepsy manage-ment and control. It also underlines the need for healthinformation and education aimed at the community, lead-ers, and primary health care workers, to reduce stigma,increase awareness and access to care, and provide appro-priate treatment for and protection of PWE.

Acknowledgments

We are grateful for the help from Dr. Luc Delneuville,Handicap International, Laos; Dr. Philip Nubukpo, IENT,EA 3174, Limoges, France; Dr. Phengta Vongphrachanh,National Center for Laboratory and Epidemiology, Vien-tiane; and Mr. Philippe Brossman, Francophone Instituteof Tropical Medicine. The study received a grant fromthe French Ministry of Foreign Affairs (CORUS Project02-811-052), and was supported by the Agence Universi-taire de la Francophonie.

Appendix A. Supplementary data

Supplementary data associated with this article can befound, in the online version, at doi:10.1016/j.yebeh.2007.02.018.

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