AJNS

SPECIAL TOPICS / MISE AU POINT
 
AWARENESS, KNOWLEDGE AND ATTITUDES TOWARDS EPILEPSY: A REVIEW OF A DECADE’S RESEARCH BETWEEN 2000 AND 2010

PRISE DE CONSCIENCE, CONNAISSANCE ET ATTITUDES ENVERS L’ÉPILEPSIE: REVUE D’UNE DÉCENNIE, 2000 - 2010


  1. Centre for Clinical and Quality of Life Studies, Faculty of Medicine and Health Sciences, Universiti Sultan Zainal Abidin, Terengganu, Malaysia

E-Mail Contact - LUA Pei Lin : peilinlua (at) unisza (dot) edu.my


ABSTRACT

The medical literature related to awareness, knowledge and attitudes (AKA) towards epilepsy was reviewed from the perspective of research trend since 2000 until 2010. Several databases i.e. PubMed, Science Direct, MedLine, Genamics, EBSCO Host and Springer Link were assessed to search for the relevant literatures using the keywords; epilepsy, awareness, knowledge, attitudes, 2000-2010. Three main parameters were measured i.e. awareness, knowledge and attitudes. Our review showed that despite a general high level of awareness, there was a serious lack of accurate knowledge regarding epilepsy which has probably led to the widespread of negative attitudes towards people with epilepsy (PWE) as well as the disease itself. Attitudes were the most commonly-measured parameter for the past ten years. It is also apparent that AKA level was better in developed countries compared to developing and poorer countries. Apart from that, methodological issues, challenges for future research, suggestions and future research directions were also discussed. Further worldwide research on AKA towards epilepsy should be targeted with a view to develop more innovative and effective epilepsy-educational programme to ensure that treatment is consistently accompanied by sound AKA in attempts to improve patients’ health-related quality of life (HRQoL).

Keywords: Epilepsy, awareness, knowledge, and attitudes.


INTRODUCTION

Epilepsy, a universal disorder that affects nearly 50 million people in the world has always been poorly understood by society and has frequently been associated with numerous myths and beliefs. Cultural beliefs and misconceptions about epilepsy coupled with its occasional dramatic clinical manifestations influence the care-seeking behaviour of people with epilepsy (PWE), with a large proportion of epileptic population in certain countries resorting to complementary and alternative medicine for treatment despite the advancement in conventional treatment. This phenomenon thus highlights the importance of improvement in awareness, knowledge, practices and attitudes towards epilepsy among patients, their families or caregivers as well as the public in attempt to ensure health-related quality of life (HRQoL) is not compromised. Although the HRQoL of PWE is primarily determined by the duration of the disease and the extent of seizure control, other non-epileptic parameters such as social and psychological factors have also been shown to be critically important. These closely interrelated social factors include social anxiety, parental anxiety, employment and social stigma [1,2].

Measuring awareness is important in order to obtain a general perception and picture among the surrounding people towards epilepsy. Hence, there is a clear indication to objectively assess the community’s level of awareness about this ailment and subsequently work towards improving this condition [3]. Shafiq et al. [3] further identified a dearth of public awareness as an important factor in the high prevalence of negative attitudes towards epilepsy and epileptic people.

Knowledge with regard to epilepsy is another important factor in reducing the impact of seizures, potentially harmful self-management practices, and the emotional impact of both seizures and treatment because increased knowledge may lead to an improvement in HRQoL not only for patients but also their families [4,5,6]. Therefore, knowledge is a vital factor in improving the ability to cope successfully with epilepsy by minimizing its impact on social and psychological functioning [7]. Furthermore, knowledge about epilepsy would be helpful in diminishing the perceived stigmatization or feelings of social isolation among PWE [4]. Researchers and clinicians who wish to develop and implement such strategies should be encouraged to first familiarize themselves with the stigmatization which accompanies epilepsy, both actual and perceived [6].

It is well known that PWE are socially discriminated against on the ground of widespread negative public attitudes, misconceptions and defensive behaviours. The most frequent false beliefs imposed upon PWE are related to mental illness, retardation and emotional disturbances in the patients [8]. It is conceivable that negative attitudes displayed by the public towards epilepsy may have stemmed from deficient or incorrect information about epilepsy [3].

Stigma is defined as any social attribute that is deeply discrediting for an individual and, in the case of epilepsy, it can significantly affect the HRQoL of the patients in many everyday activities such as going to school, working, driving, creating a family and obtaining insurance. The stigma associated with any disorder is determined not only by the actual characteristics of the disorder but also by the social stereotypes concerning it, created by the lack of information, misconceptions and unfounded fears. In the case of epilepsy, stigma seems to be largely based on the public perception of epilepsy as a disease that can unpredictably cause a violent and frightening attack on the patient’s mental faculties, that is incurable, that affects the patient’s personality, and that may be transmitted to his/her offspring. Such perceptions, although not entirely or necessarily misconceptions, when become social stereotypes obviously cause prejudices and rejections towards anyone with epilepsy. Hence, if these problems are to be dealt with effectively, a systematic study concerning awareness, knowledge, and attitudes towards epilepsy is a necessary first step. Moreover, a review covering these significant investigations could be very beneficial in defining common areas of both deficiency and strength to improve what is lacking. Other than help to raise the understanding level of the progress that has been made in AKA towards epilepsy research, hopefully it can also provide direction as to where future efforts need to be focused and emphasized.

METHODS

Search strategy and selection criteria
The PubMed, Science Direct, MedLine, Genamics, EBSCO Host and Springer Link databases were searched using the keyword "epilepsy", combined with each of the following: "awareness", "knowledge" and "attitudes". When the first keyword, epilepsy was searched, 20,000,000 hits were obtained. When the word awareness was added, the results were decreased to 670,000 and later down to 114,000 when the third keyword, knowledge was included. With the final addition of the keyword, attitudes and the time frame (2000-2010), only 80 results surfaced. Sixty-six articles met the inclusion criteria which were: 1) research-based, 2) English language and 3) full-length articles. All related issues mainly from Seizure (European Journal of Epilepsy), Epilepsy and Behaviour, Epilepsia (The Journal of International League against Epilepsy), Arquivos de Neuro-Psiquiatria, Neurosciences, Social Science and Medicine, Annals of African Medicine, Epileptic Disorders, Acta Neurologica Scandinavica, Journal of Indian Medical Association and Neurology Asia (formerly known as Neurological Journal of South East Asia) and the International Journal of Collaborative Research on Internal Medicine and Public Health were included.

Data collection and analysis
A total of 66 research articles from 36 countries were found via PubMed, Science Direct, MedLine, Genamics, EBSCO Host and Springer Link databases. Basically, three parameters i.e. awareness, knowledge and attitudes were the main focus. The specific parameters and the main findings of each article were closely-examined for details such as authors, title of research, country, year and socio-demographic background to provide comprehensive information. Besides the demographic distribution of respondents, the investigations’ design, study setting, year of publication, sample and number of sample were also dissected and categorized accordingly. Almost every country in Asia had conducted their own studies on awareness, knowledge and attitudes towards. Most articles had originated from Cameroon (n=6), Malaysia (n=5) and the United States of America (n=4). Three studies were conducted in each of these countries; South Korea, Brazil, Oman, Turkey, Zambia, Hong Kong and India. Greece, Vietnam, Jordan and Kuwait were represented by two studies respectively. On the other hand, only one study had been conducted in Iran, Sweden, Kenya, Hungary, Bengal, Pakistan, Laos, Bosnia and Herzegovina, Croatia, France, Trinidad and Tobago, Nigeria, Burkina Faso, Tanzania, New Zealand, United Arab Emirates, Senegal, Thailand, United Kingdom, Myanmar, Italy and Indonesia. This review has an international focus on patients’, parents’, families’, caregivers’, healthcare providers’ awareness, knowledge and attitudes towards epilepsy and provides a discussion of research trends for the past decade and recommendations for future directions.

RESULTS

Demographic indicators
From 2000 until 2010, the number of total population of respondents was approximately 98, 381. However, the number of total population was smaller than expected because this information was not available in some literature - Table 1.

Age
The publications included in this review showed several age ranges. They covered children from as young as 10 to 16 years (n=22,069), young adults from 18 to 25 years (n=35,224), general adults from 29 to 49 years (n=18,432) and the elderly from 50 to 65 years (n=1,152). Hence, the group most-researched involved young adults, in whom epilepsy is not uncommon and the prevalence is high -Table 1.

Gender
The percentage of female respondents was generally higher ( 50.7% to 87.3%) than males (12.7% to 49.3%) in 43 research studies in almost all countries except for Italy, Thailand, Pakistan, Bengal, Oman, Jordan, UAE, Nigeria and Zambia in which the opposite was noted - Table 1.

Ethnicity, Religion and Locality
The respondents were largely represented by the main ethnic group within each country for several countries namely Malaysia, Hong Kong, South Korea, Pakistan, Oman, Kuwait, Jordan, Iran, Nigeria, Trinidad and Tobago, New Zealand, Greece and United State of America. While for other countries the highest number of respondents was represented by the major religion of the population, states or district with the largest population, mother tongue language of the population or location of the study - Table 1.

Location
Most of the AKA research were carried out in developing countries in which 22 articles had originated from Asia countries, 15 articles from the African continent and 13 articles from Middle East countries. Nonetheless, developed countries like the United States of America, United Kingdom, Canada, France, New Zealand, Greece, Italy and Sweden were covered by the rest of the articles (n=17) - Table 1.

Majority of the studies was based on cross-sectional design and they have been conducted throughout 35 different countries all over the world. The sample recruited (n = 98,381) included PWE, non-PWE, parents, healthcare providers, teachers, students, children and public whereby non-PWE was the majority. The most frequently assessed parameter for the past decade was attitudes, followed by knowledge, awareness, perception, familiarity, understanding, practice, belief and behaviour. The main findings for each study are summarized in Table 2.

Parameters
For the past decade, psychological and behavioural studies of epilepsy and seizure have been focused on measuring different parameters: awareness, knowledge, attitudes, perception, familiarity, understanding, practices, belief, and behaviour. Our review discovered that attitudes had been the most frequently-measured in almost every published research followed by knowledge, and awareness. The least common parameters measured were belief and behaviour. Beginning from the year 2004 onwards, there was an overall increase in the number of research on these parameters among PWE and other members of the community carried out globally - Figure 1.

DISCUSSION

This paper intends to provide a review of published research of AKA towards epilepsy. Data from previous studies over the past decade have provided a clearer picture of the overall overview on this matter. Moreover, methodological issues, challenges for future research, suggestions for future research directions and limitations were also discussed.

Overall findings
According to this review, the awareness level in almost every country was mostly high, between 80% and 100%. High prevalence of this disease i.e. 50 million PWE worldwide could be one of the reasons that people are rather aware of the disease. The familiarity towards this disease was also considerably high since a huge proportion of the public mingled with PWE in their daily life within their surrounding society. However, as compared to studies conducted in other countries, the awareness level of epilepsy in poor communities is still limited and this gives rise to negative attitudes and poor practices [28].

Despite high awareness level, knowledge level however was still very limited. Obviously, the main problem was lack of accurate knowledge regarding this illness. Moreover, the existence of incorrect knowledge plus false beliefs surrounding this disease has commonly been spread from person to person among the community, worsening the matter. This indicated that epilepsy education has been largely inadequate and ineffective especially in developing countries. Educational programmes should be implemented continuously among children, youth, adults and the elderly. They need to be constantly-equipped with up-to-date knowledge via the most effective ways. Thus, development of epilepsy education programme utilizing all sorts of resources such as the internet, mass-media and telecommunication systems could play a crucial role in improving the knowledge in this ICT-driven era.

Overall, negative attitudes were still prominent. The attitudes toward epilepsy could be considered as negative among public all over the world except for in the United States of America [22]. The public possessed a positive attitude about their association with PWE, their employment, having children or even their ordinary life in the community [47] but they imposed a negative attitude with regard to their children associating with PWE and marrying epileptic person like those in Hong Kong [70] and Malaysia [46]. Although epilepsy is a well-known disease, negative attitudes unfortunately still prevail [16]. People in rural communities especially perceive epilepsy as a feared and dreaded disease because of its alleged association with evil spirits and witchcraft [26]. Consequently, PWE faces serious social stigmatisation and may even be ostracized by the society [38]. The majority of negative attitudes were significantly associated with the misunderstanding of epilepsy in the first place [16], emphasizing the importance of health education for the people.

Expectedly, respondents in developed countries demonstrated an overall better AKA level compared to people in developing countries. Specifically, population in developed countries like the United States of America [22], United Kingdom [42], New Zealand [40], Greece [44] and France [61] demonstrated better AKA compared to developing countries like Asian countries, Middle East countries as well as African countries. This could be due to better education, higher socioeconomic status and significantly enhanced level of thinking possessed by respondents in developed countries such as the United States of America, German, and Japan. However, in countries with low resources, poor awareness about epilepsy, stigma associated with the disorder, ignorance about its treatment and restricted access to healthcare have imposed a negative influence on AKA as well as on their HRQoL. Differences in public AKA between eastern and western countries might also reflect the underlying sociodemographic and cultural differences in the perception of this condition. These sociodemographic and cultural differences could probably be influenced by political situation, economic growth, education system, health policy and sociocultural diversity in the respective countries.

Overall, attitudes have been identified as the most commonly-measured parameter in AKA followed by knowledge and awareness. This is rather expected since this illness is frequently associated with stigmatisation, prejudice and discrimination. Therefore, assessing attitudes is certainly crucial in order to determine the level of stigma towards this brain disorder.

Methodological issues and challenges for future research
The largest problem in most research is the lack of outcome studies to test for the effectiveness of interventions. Out of the 66 studies conducted, only one was an intervention study, while the rest were all non-interventional. There should be more intervention studies as a continuity of the usually-conducted cross-sectional studies since most have suggested that almost similar educational programmes should be embarked as the best solutions for the problem. Interventional studies could be in the form of developing and testing educational programme, launching awareness campaign, introducing medical education or even developing new system or device with the primary objective of improving knowledge.

Another pertinent issue with the assessment measures employed was that some terms were not standardized across studies. For example "awareness", "familiarity", "knowledge", "understanding", "perception", "belief", "behaviour", "practices" and "attitudes" towards epilepsy were measured by different scales in different studies. This makes comparisons of the effectiveness of different approaches rather tedious and could not be standardized. Another reasonable concern is whether these scales measure the parameters in a meaningful way. For example, exactly how does one measure "awareness", "knowledge" or "attitudes" in a series of yes-no-not sure questions or Likert rating scales? When a significant change is statistically shown on such measurements, does it actually reflect a clinically significant change [73] in respondents’ level of AKA? These concerns could probably be addressed in future instrument development with more meaningful interpretation between scale scores and real-life adaptation and practice.

Furthermore, there was no established and standardized instrument for measuring AKA. Most questionnaires have been developed by researchers specifically for the purposes of their studies alone, assessing their desired parameters. Because of this, these instruments vary in their scope/objectives and some cover a wide range of topics, which makes it rather difficult to compare and draw general conclusions on the overall attitude and degree of knowledge of PWE. Some researchers did not give identification name for their developed questionnaires. Hence, it is inconvenient to gather and clearly identify the instruments which have been utilized for this type of study for many years before.

Amongst others too, researchers or instrument developers did not seem keen to address the impact of different types of epilepsy namely primary generalized seizure and partial seizure with a variety of accompanying subtypes i.e. absence seizure, atypical absence seizure, myoclonic seizure, atonic seizure, tonic seizure, clonic seizure, tonic clonic seizure, simple partial seizure, complex partial seizure and secondary generalized seizure. Each subtype requires specific needs whether in terms of treatment or regular daily basis and faces slightly different psychosocial issues. Therefore, it is neither appropriate nor accurate to utilise similar instrument for PWE who are diagnosed with different subtypes of epilepsy. The domains and items could probably be modified to suit the major issues affecting them. Hence, developing specific instrument according to subtypes of epilepsy could be another step forward in research of this nature. Suggestions and future research directions

Epilepsy education campaign and health promotion have been shown to be effective in improving health outcomes of PWE. Educational programmes to enhance epilepsy self-management have often shown improvements in knowledge. A study carried out in Hungary [8] demonstrated that educational campaigns are effective in changing as well as improving knowledge about epilepsy among the population and diminish the negative attitudes against PWE [33]. Larger and comprehensive community-based educational programme is very much essential to bring about a change in negative attitude towards epilepsy [21]. Therefore, more interventional focus on epilepsy education including PWE, their families, caregivers and public should be devised, tested and implemented over-time in efforts to gradually alter knowledge and attitude components of PWE as well as their surrounding community.

Rather than dealing with the clinical manifestations of epilepsy alone, PWE are equally (if not more) affected by the psychosocial issues surrounding it. Because of that, besides being treated medically, PWE should also opt for psychosocial treatment or alternative therapies. However, according to Mittan [73], the development of psychosocial treatment programs in epilepsy such as educational interventions, computer-based patient education, medical education and counseling therapies has not kept pace with the development of medical treatments nowadays. This is a very troubling state of affair given that the provision of pharmacological therapies should ideally be balanced with psychosocial intervention services. Formal psychosocial treatment interventions definitely require a structured programme and sustainable funding incentives by authorities in their respected fields. These interventions, for example, including books, pamphlets and a host of epilepsy association programs should utilise the increasingly popular internet resources and devices for maximum impact and effectiveness on health outcomes.

Apart from quantitative measures, qualitative approaches were also necessary to uncover the ongoing psychosocial problems surrounding epilepsy in more depth. According to Cresswell [74] and Green and Thorogood [75], a qualitative approach is required to examine what underlines social processes and to establish what they mean and how people make sense of this meaning in their lives. This approach will further allow researchers to achieve explanatory depth, relate particular aspects of behavior to a wider context, and allow for the discovery of any unexpected issues. Therefore, it is only reasonable for more qualitative measures to be included in future research.

Limitations
There are several limitations in this review. First, it was limited to only English-language literature, whilst it should be noted that there may be non-English journal articles available which were not identified and analysed. Besides that, this review did not include manual search of articles which are very limited in our resource centre. Our electronic searches also only covered research articles from two electronic databases namely Medline and Science Direct. In addition, articles were reviewed mainly by their title and abstract, those containing relevant AKA-related information as a minor portion of the results could have been overlooked. Hence, it should be noted that there may be published research articles which could have been overlooked, in which a more comprehensive coverage and analysis could have been carried out if they were accessible.

CONCLUSION

This review highlights the ever-growing need for further research on AKA towards epilepsy. Limited knowledge and the widespread negative attitudes towards this brain disorder despite its prevalence and high awareness in the society indicated that serious attention plus various measures have to be taken to overcome this hurdle. The obvious gap between the AKA level of respondents in developed countries in comparison to those in developing and poor countries emphasizes the critical importance of epilepsy education in addition to effective delivery methods to the targeted population. In the developed nations, high level of literacy, wider scope of media coverage and accessibility of healthcare services to the community have resulted in better understanding and a remarkable decline in misperceptions and myths of the nature of epilepsy. Expectedly, attitude was the most commonly-measured parameter followed by knowledge and awareness since this illness is frequently associated with stigmatisation, prejudice and discrimination. Methodological short-comings and future challenges should also be tackled in order to attain the ultimate goal of patient-centered management - improvement of the quality of life. Future research directions could be introduced for more improvised and impactful outcomes besides the limitations and suggestions that need to be taken into consideration.

CONFLICT OF INTEREST STATEMENT

The author of this review article is also the author of Awareness, Knowledge and Attitudes Towards Epilepsy Among Rural Populations In East Coast Peninsular Malaysia: A preliminary exploration which has been published in Seizure 2010; 19:280-90.

ACKNOWLEDGEMENT
We would like to thank Ms Wan Putri Elena Wan Dali and Ms Tuan Sharifah Diana Syed Ahmad for their assisstance in compiling the journal articles.

Table 1. An overview of demographic indicators of the research articles according to country and year.

No Country Year Title Age (year) Mean/MeanSD/Range Gender (%)/ratio Ethnicity/Religion/Locality (%)
1Bengal2007Epilepsy awareness among parents of school children: a municipal surveyNAMale = 76.9 Female = 23.1NA
2Bosnia and Herzegovina2009First population study of the general public awareness and perception of epilepsy in Bosnia and Herzegovina15.0 to 66.0Male = 48.0 Female =52.0Urban = 48.3
Rural = 51.7
3Brazil2007Awareness, attitudes and perceptions on epilepsy in Southern Brazil32.2  14.8Male = 26.4
Female = 73.6
NA
2007Knowledge and attitudes toward epilepsy amongst students in the health area: intervention aimed at enlightenmentNANANA
2001Knowledge and attitudes toward epilepsy among primary, secondary and tertiary level teachers29.0 to 49.0Male = 33.3
Female = 66.7
NA
4Burkina Faso2004Knowledge of epilepsy and attitudes towards the condition among schoolteachers in Bobo-Dioulasso (Burkina Faso)30.0 to 50.0Male = 46.5
Female = 53.5
Christian = 68.4
Muslim = 30.3
Others = 1.3
5Cameroon2010Knowledge, attitudes and practices with respect to epilepsy among student nurses and laboratory assistants in the South west Region of Cameroon26.0  4.0Male = 19.0
Female = 81.0
Catholic = 49.0
Protestant = 47.0
Others = 4.0
2010A community survey of knowledge, perceptions, and practice with respect to epilepsy among traditional healers in the Batibo Health District, Cameroon52.1  15.9Male = 90.0
Female = 10.0
Catholic = 35.3
Protestant = 53.9
Others = 10.8
2009A survey of public knowledge, attitudes, and practices with respect to epilepsy in Badissa village, Centre Region of Cameroon48.1  15.0Male = 57.3
Female = 42.7
Sanaga = 95.7
Others = 4.3
2009General public knowledge, attitudes, and practices with respect to epilepsy in the Batibo Health District, Cameroon35.2  14.7Male = 47.0
Female = 53.0
NA
2009General public awareness, perceptions, and attitudes with respect to epilepsy in the Akwaya Health District, South-West Region, Cameroon34.6  1.9Male = 54.0
Female = 46.0
Animist = 5.4
Catholic = 50.2
Muslim = 2.8
Protestant = 41.6
2009Public awareness, perceptions, and attitudes with respect to epilepsy in Ebolowa and Sangmelima - Urban Cameroon27.4  10.4Male = 56.1
Female = 43.9
NA
6Croatia2009First population study of the general public awareness and perception of epilepsy in Croatia15.0 to >66.0Male = 47.5
Female = 52.5
Urban = 58.2
Rural = 41.8
7France2010Knowledge of epilepsy in the general population based on two French cities: implications for stigma48.7  18.4Male = 47.4
Female = 52.6
Haute-Vienne = 49.7
Creuse = 50.3
8Greece2006A survey of public awareness, understanding, and attitudes toward epilepsy in Greece20.0 to 60.0Male = 49.3
Female = 50.7
Greeks = 94.5
Immigrants = 5.5
2005Knowledge and attitude of the Greek educational community toward epilepsy and the epileptic student35.0 to 50.0Male = 49.3
Female = 50.7
NA
9Hong Kong2004Pilot survey of public awareness, attitudes and understanding towards epilepsy in Hong Kong28.0  15.0Male = 52.0
Female = 48.0
Cantonese = 92.1
Mandarin = 6.9
2002Public awareness, attitude and understanding of epilepsy in Hong Kong Special Administrative Region, ChinaNAMale = 46.2
Female = 53.8
Cantonese = 100.0
2002Public awareness, attitude, and understanding of epilepsy in Hong KongNANANA
10Hungary2001Changes in public attitudes toward epilepsy in Hungary: results of surveys conducted in 1994 and 20001994 = 50.0Male = 47.2
Female = 52.8
Urban = 63.3
Rural = 36.7
2000 = 46.5Male = 47.0
Female = 53.0
Urban = 63.6
Rural = 36.4
11India2010Knowledge, attitude and practices among patients of epilepsy attending tertiary hospital in Delhi, India and a review of Indian studies18.0 to 60.0Male = 60.0
Female = 40.0
Hindus = 74.2
Muslims = 25.8
2008Knowledge, awareness and attitude about epilepsy among schoolteachers in IndiaNAMale = 61.8
Female = 38.2
Urban = 32.9
Rural = 67.1
2006High school students’ knowledge, attitude, and practice with respect to epilepsy in Kerala, Southern India14.9  0.8Male = 44.4
Female = 55.6
Muslims = 50.9
Hindus = 48.6
Christians = 0.5
12Indonesia2004Public awareness, understanding and attitude towards epilepsy in Bandung, IndonesiaMale = 39.0
Female = 36.0
Male = 46.3
Female = 53.7
NA
13Iran2009Awareness, understanding and attitudes towards epilepsy among Iranian ethnic groups38.9  14.1Male = 47.6
Female = 52.4
Persian = 20.0
Azeri = 20.0
Kurd = 20.0
Lur = 20.0
Arab = 20.0
14Italy2007A questionnaire study on knowledge of and attitudes toward epilepsy in school children and university students in Rome, ItalySchoolchildren = 16.4  1.5Schoolchildren
Male = 54.7
Female = 45.3
School children = 344
University students = 253
University students = 22.2 2.9University students
Male = 45.1
Female = 54.9
15Jordan2007Public knowledge and attitudes towards epilepsy in Jordan26.7  10.1Male = 51.0
Females = 49.0
NA
2006Knowledge of management of epilepsy in young adults in Jordan26.7  10.1Male = 50.8
Female = 49.2
Jordanian = 69.6
Palestinian = 10.6
Syrian = 11.5
Other = 8.3
16Kenya2006Attitudes and practices of families and health care personnel toward children with epilepsy in Kilifi, KenyaNANANA
17Kuwait2009Knowledge of, perceptions of, and attitudes toward epilepsy among university students in Kuwait21.1  1.8Male = 44.0
Female = 56.0
Kuwaitis = 95.0
Others = 5.0
2008Public knowledge and attitudes toward epilepsy in Kuwait34.1  10.0Male = 43.1
Female = 56.9
Capital = 25.1
Hawalli = 24.8
Al-Farwaniyah = 20.6
Al-Ahmadi = 16.7
Al-Jahra= 12.8
18Laos2007Epilepsy in Laos: knowledge, attitudes, and practices in the communityPWE = 30.7Male:female 1.1:1.0NA
Villagers = 31.1Male:female 1.1:1.0
Relatives = 42.8  15.0Male = 34.0
Female = 66.0
19Malaysia2010Knowledge and Attitudes towards Epilepsy among Malaysian Chinese34.7Male = 49.0
Female = 51.0
Kuala Lumpur = 20.9
Penang = 18.3
Ipoh = 15.7
Klang = 15.2
Serdang = 10.5
Kajang = 10.2
Shah Alam = 9.2
2010Awareness, knowledge and attitudes towards epilepsy among rural populations in East Coast Peninsular Malaysia: A preliminary exploration41.6  18.0Male = 43.4
Female = 56.6
Malay = 94.0
Chinese = 5.2
Indian = 0.5
Others = 0.3
2005Awareness and knowledge of epilepsy among students in a Malaysian university21.8  2.5Male = 22.6
Female = 77.4
Malay = 60.7
Chinese = 26.0
Indian = 6.7
Others = 6.7
2000Public awareness, attitudes and understanding towards epilepsy in Kelantan, Malaysia27.0Male = 38.1
Female = 61.9
Malay = 81.0
Chinese = 6.0
Indian = 0.6
Others = 12.4
1999Survey of public awareness, understanding, and attitudes toward epilepsy among Chinese in MalaysiaNAMale = 54.1
Female = 45.9
Chinese = 100.0
20Myanmar2002Public awareness, attitude and understanding toward epilepsy among Myanmar people31.0Male = 42.6
Female = 57.4
Urban = 59.1
Rural = 40.9
21New Zealand2002New Zealand community attitudes toward people with epilepsy18.0 to >60.0Male = 45.0
Female = 55.0
New Zealand European = 77.0
Maori (indigenous persons) = 10.0
Others = 13.0
22Nigeria2005Knowledge, attitude and beliefs about epilepsy among adults in a Northern Nigerian Urban Community18.0 to 71.0Male = 56.0
Female = 44.0
Hausa-Fulani = 81.5
Yoruba = 9.5
Igbo = 5.0
Others = 4.0
23Oman2003Patient’s perspective on epilepsy: self-knowledge among Omanis22.6  4.6Male = 53.0
Female = 47.0
NA
2001Psychosocial aspects of epilepsy in Oman: attitude of Health Personnel37.4  10.0Male = 66.0
Female = 34.0
Indian = 41.0
Omani = 29.0
Sri Lankan = 15.0
Egyptian = 6.0
Pakistani = 4.0
Filipino = 3.0
Jordanian = 2.0
2000Attitudes of Omani physicians to people with epilepsy35.6  9.6Male = 66.0
Female = 34.0
Indian = 40.0
Omanis = 31.0
Sri Lankan = 10.0
Others = 19.0
24Pakistan2007Epilepsy: public knowledge and attitude in a slum area of Karachi, Pakistan16.0 to 45.0Male = 63.0
Female = 37.0
Hindko = 34.0
Pashto = 32.0
Punjabi = 12.0
Urdu = 10.0
Others = 12.0
25Senegal2005Prevalence of epilepsy its treatment gap and knowledge, attitude and practice of its population in sub-urban Senegal an ILAE/IBE/WHO study0.0 to 40.0Male = 46.9
Female = 53.1
NA
26South Korea2010Familiarity with, knowledge of, and attitudes toward epilepsy among teachers in Korean elementary schools38.4  10.2Male = 12.7
Female = 87.3
NA
2009Familiarity with, understanding of, and attitudes toward epilepsy among people with epilepsy and healthy controls in South Korea18.0 to 65.0Male = 48.5
Female = 51.5
Kyungi-Do, Inchon = 52.5
Gyeongsang-do, Daegu, Busan, Ulsan = 36.4
Jeolla-do,Gwangju = 8.9
Others = 2.2
2004Familiarity with, knowledge of, and attitudes toward epilepsy in residents of Seoul, South Korea44.6  14.9Male = 32.6
Female = 67.4
NA
27Sweden1991Attitudes of rural people in central Ethiopia toward epilepsy18.0 to 45.0Male = 41.6
Female = 58.4
Muslim = 53.7
Christian = 46.3
28Tanzania1993Knowledge, attitude, and practice toward epilepsy among rural Tanzanian residents40.2Male = 50.0
Female = 50.0
NA
29Thailand2010Public familiarity with, knowledge of, and predictors of negative attitudes toward epilepsy in Thailand37.6Male = 52.9
Female = 47.1
Capital = 16.3
Central = 22.6
North = 19.0
Northeast = 19.6
South = 22.5
30Trinidad and Tobago2009Knowledge of, attitudes toward, and perceptions of epilepsy among college students in Trinidad and Tobago21.6  3.6Male = 43.0
Female = 57.0
Indian = 49.0
African = 29.0
Mixed = 21.0
Chinese = <1.0
Other = <1.0
31Turkey2010Knowledge of, perception of, and attitudes toward epilepsy of schoolchildren in Ankara and the effect of an educational program13.1  1.2Male = 47.6
Female = 52.2
Ulubatli Hasan PS = 38.7
Nazim Akcan PS = 26.9
ATO 65th year PS = 34.4
2009Do knowledge of, perception of, and attitudes toward epilepsy affect the quality of life of Turkish children with epilepsy and their parents?Children = 13.5  3.2Children:
Male = 56.8
Female = 43.2
NA
Parents = 38.5  6.8Parents:
Male = 36.2
Female = 63.8
2007Teachers’ perceptions in central Turkey concerning epilepsy and asthma and the sort-term effect of a brief education on the perception of epilepsyNAMale = 54.5
Female = 45.5
NA
32United Arabic Emirates1998Public awareness and attitudes towards epilepsy in the United Arab Emirates28.9  10.1Male = 52.0
Female = 48.0
NA
33United Kingdom2004Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma16.0 to 75.0Male = 44.6
Female = 55.4
White British = 87.4
Other White = 4.6
Mixed = 1.0
Asian subcontinent = 3.6
Black British = 1.8
Chinese = 0.6 Any other = 1.0
34United States of America2010Knowledge, attitudes, and practice toward epilepsy (KAPE): A survey of Chinese and Vietnamese adults in the United States18.0 to >65.0Male = 46.6
Female = 53.4
Chinese = 57.6
Vietnamese = 40.2
2006Teachers’ knowledge about epilepsy and attitudes toward students with epilepsy: results of a national survey42.8  10.8Male = 14.5
Female = 85.5
White = 96.7
African-American = 2.1
Hispanic = 0.4
Native American = 0.4
Asian = 0.4
2004Teacher’s attitudes toward students with epilepsy: results of a survey of elementary and middle school teachers40.4  10.7Male = 13.0
Female = 87.0
Central Kentucky = 48.5
Western Kentucky = 24.2
Eastern Kentucky = 27.3
2002Epilepsy familiarity, knowledge, and perceptions of stigma: report from a survey of adolescents in the general population13.0 to 18.0Male = 47.0
Female = 53.0
White/Caucasian = 63.0
Black/African-American=14.0
Asian = 5.0
Latino = 12.0
Native American = 1.0
Others = 5.0
35Vietnam2007Knowledge, attitudes and practice toward epilepsy among adults in Ba Vi, Vietnam: first report from the population-based EPIBAVI study19.0 to 71.0Male = 46.5
Female = 53.5
NA
2003Survey of public awareness, attitudes, and understanding toward epilepsy in Nhan Chinh, Hanoi, Vietnam, in 200315.0 to 80.0Male = 38.0
Female = 62.0
NA
36Zambia2007Epilepsy-related knowledge, attitudes, and practices among Zambian police officers31.8  7.0Male = 71.3
Female = 28.7
NA
2007Zambian health care workers’ knowledge, attitudes, beliefs, and practices regarding epilepsy34.3Male = 23.0
Female = 77.0
Urban = 58.5
Rural = 41.5
2006Knowledge, attitudes, behaviours and practices regarding epilepsy among Zambian clerics40.7Male = 77.9
Female =22.1
Catholic = 4.5
Liberal Protestant = 63.8
Strict Protestant = 28.6
Jehovah’s witness = 3.1

Table 2. An overview of study design, study setting, year, and sample that have assessed awareness, knowledge, and attitudes towards epilepsy from year 2000 to 2010.

No Authors

  • Study design
  • Study setting
  • Year
Respondents Sample (n) Parameters Main findings
1Ab Fatah Ab Rahman [9]
  • Cross-sectional
  • Penang, Malaysia
  • 2005
University students289Awareness & Knowledge (AK)
  • Awareness = high
  • Familiarity = moderate
  • Knowledge = poor
  • Attitudes = indifferent
  • 2Al-Adawi et al [10]
    • Cross-sectional
    • Muscat, Oman
    • 2000
    Doctors121Knowledge & Attitudes (KA)
  • Knowledge = excellent
  • Attitudes = negative
  • 3Al-Adawi et al [11]
    • Cross-sectional
    • Oman
    • 2003
    *PWE107Perspective & Knowledge (PK)
  • Knowledge = moderate/limited
  • Limited knowledge of PWE condition
  • Inaccurate indications of epilepsy and incorrect responses to safety and compliance
  • A need for improving PWE knowledge
  • 4Al-Adawi et al [12]
    • Cross-sectional
    • Oman
    • 2001
    Health personnel121Attitudes (A)
  • Knowledge = excellent
  • Attitudes = negative (cognitive & behaviour)
  • Realities regarding PWE should be publicized - PWE are capable of having a normal life and being an integral part of society
  • 5Al-Rashed et al [13]
    • Cross-sectional
    • Kuwait
    • 2009
    University students753Knowledge, Perceptions & Attitudes (KPA)
  • Knowledge = moderate
  • Attitudes = negative
  • Misconceptions and negative attitudes = high
  • 6Atadzhanov et al [14]
    • Cross-sectional
    • Zambia .2006
    Clerics225Knowledge, Attitudes, Behaviour & Practices (KABP)
  • Awareness = high
  • Familiarity not associated with more knowledge or tolerance
  • Younger clerics, urban dwellers, those with fewer children and those with more years of formal education - significantly more tolerant
  • More knowledgeable clerics - recommended PWE to seek care from physician
  • Formal education - the most important factor in determining tolerance towards epilepsy
  • 7Austin et al [15]
    • Cross-sectional .United State of America
    • 2002
    High school students19,441Familiarity, Knowledge & Perception (FKP)
  • Awareness = moderate
  • Knowledge = poor
  • Attitudes = negative
  • 8Awad & Sarkhoo [16]
    • Cross-sectional
    • Kuwait
    • 2008
    Healthy public volunteers755Knowledge & Attitudes
  • Awareness = high
  • Knowledge = moderate/limited
  • Attitudes = negative .Negative attitudes - significantly associated with misunderstanding of epilepsy
  • 9Aydin & Yildiz [17]
    • Cross-sectional
    • Konya, Turkey
    • 2007
    Schoolteachers275Knowledge, Attitudes Practice (KAP)
  • Knowledge = moderate/limited
  • Attitudes = negative
  • Practice = poor
  • Initial rates of acceptance of ‡CWE = significantly low
  • A significant positive change in the teachers’ perception of epilepsy after education program
  • 10Bagic et al [18]
    • Cross-sectional
    • Bosnia and Herzegovina
    • 2009
    Adults1,000Knowledge, Perception & Attitudes (KPA)
  • Awareness = high
  • Familiarity = moderate
  • Knowledge = moderate
  • Attitude = positive
  • Perception = moderate
  • Practice = moderate
  • Positive attitudes correlated with knowing PWE and/or witnessing seizure
  • General awareness and attitudes approached those of developed countries
  • 11Bagic et al [19]
    • Cross-sectional
    • Croatia
    • 2009
    Adults1,000Knowledge, Perception & Attitudes (KPA)
  • Awareness = high
  • Familiarity = moderate
  • Attitude = positive
  • Perception = positive
  • Practice = moderate
  • Positive attitudes correlated with knowing PWE and/or witnessing seizure
  • 12Bener et al [20]
    • Cross-sectional
    • United Arab Emirates (UAE)
    • 1998
    Public residents892Awareness, Attitudes & Understanding (AAU)
  • Awareness = moderate
  • Knowledge = moderate/limited
  • Attitudes = indifferent
  • Males and females were similarly familiar with the concept of epilepsy
  • Age group (20-29 years) and education (illiterate) had positive significant effect on awareness of epilepsy
  • AKA level in UAE < other Western countries
  • 13Bhattacharya et al [21]
    • Cross-sectional
    • Bengal
    • 2007
    Parents of school-going children1,068Knowledge, Attitudes & Practices (KAP)
  • Knowledge = moderate
  • Attitudes = indifferent
  • False belief and negative attitudes lead to barrier in children education
  • 14Bishop & Boag [22]
    • Cross-sectional
    • United States of America
    • 2006
    Elementary and middle school teachers512Knowledge & Attitudes (KA)
  • Knowledge = moderate/limited
  • Attitudes = positive
  • Despite positive attitudes, there were significant deficits in general knowledge, its impact in educational settings and the appropriate management of epilepsy in classroom
  • 15Bishop & Slevin [23]
    • Cross-sectional
    • Kentucky, United States of America
    • 2004
    Elementary and middle school teachers135Attitudes (A)
  • Attitudes = indifferent
  • Better scores predicted by more years of experience in teaching students with epilepsy
  • 16Bozkaya et al [24]
    • Longitudinal
    • Turkey
    • 2010
    Primary schoolchildren851Knowledge, Perceptions & Attitudes (KPA)
  • The epilepsy education program was found to be associated with a significant increase in knowledge and positive attitudes towards epilepsy
  • Students with higher socioeconomic levels performed better on both pre and post tests
  • 17Choi-Kwon et al [25]
    • Cross-sectional
    • Korea
    • 2004
    Public volunteers918Awareness, Knowledge & Attitudes (AKA)
  • Knowledge = moderate
  • Attitudes = negative
  • The significant reasons for negative attitudes - epilepsy was hereditary and untreatable
  • Word of mouth was most often referenced as a source of knowledge
  • 18Chomba et al [26]
    • Cross-sectional
    • Zambia
    • 2007
    Health care workers276Knowledge, Attitudes, Beliefs & Practices (KABP)
  • Knowledge = good
  • Attitudes = positive
  • Practice = good
  • Beliefs = moderate
  • Those who had received both didactic and bedside training and more recent graduates exhibited significantly greater knowledge
  • Greater knowledge was significantly associated with more social tolerance but having a family member with epilepsy was not
  • Most PWE are feared and/or rejected by both their families and community
  • 19Chung et al [27]
    • Cross-sectional
    • United States of America
    • 2010
    Chinese-American adults Vietnamese- American adults1,615 1,126Knowledge, Attitudes & Practices (KAP)
  • Awareness = high
  • Attitudes = indifferent
  • Practices = moderate
  • Younger age, female, Chinese and higher level of education were associated with positive attitude and better knowledge
  • Noteworthy differences in attitudes and practices in relation to previous studies in Asian countries
  • 20Cuong et al [28]
    • Cross-sectional
    • Nhan Chinh, Hanoi, Vietnam .2003
    Public volunteers1,000Awareness, Attitudes & Understanding
  • Awareness = moderate
  • Knowledge = poor
  • Understanding = poor
  • Attitudes = indifferent/slight negative
  • 21Dantas et al [29]
    • Cross-sectional
    • Brazil
    • 2001
    Primary, secondary and tertiary level teachers300Knowledge,Practice & Attitudes (KPA)
  • Awareness = high
  • Knowledge = moderate and limited
  • Attitudes = indifferent
  • 22Daoud et al [30]
    • Cross-sectional
    • Jordan
    • 2007
    Adults16,044Knowledge & Attitudes (KA)
  • Awareness = high
  • Knowledge = moderate/limited
  • Attitudes = indifferent
  • Younger participants and those with higher education were significantly more positive towards epilepsy
  • Overall knowledge and attitudes comparable with Asian countries but more negative when compared to Western countries
  • 23Diamantopoulos et al [31]
    • Cross-sectional
    • Greece
    • 2006
    Adults750Awareness, Understanding & Attitudes (AUA)
  • Awareness = moderate
  • Understanding = moderate
  • Attitudes = indifferent
  • Public’s rejection towards PWE = low
  • Negative predictive factors - older age, low educational level, unfamiliarity with epilepsy and erroneous beliefs
  • 24El Sharkawy et al [32]
    • Cross-sectional
    • Kilifi, Kenya
    • 2006
    Children, parents and grandparents came from or were associated with, a population of children with active epilepsy66Attitudes & Practices (AP)
  • Both positive and negative attitudes illustrated a wide variety of practices toward CWE
  • Usage of traditional, medical, educational and religious services vary between groups
  • Choice of services was affected by different socioeconomic factors, the complex interrelationship of which offers some explanation for the underutilization of .AEDs
  • 25Falavigna et al [33]
    • Cross-sectional
    • Southern Brazil
    • 2007
    Inhabitants of Caxias do Sul832Familiarity, Awareness & Attitudes (FAA)
  • Attitudes = less negative
  • Knowledge = poor
  • University students and graduates possessed better knowledge compared to others
  • 26Fong & Hung [34]
    • Cross-sectional
    • Hong Kong
    • 2002
    Healthy public volunteers1,128Awareness, Attitudes & Understanding (AAU)
  • Awareness = moderate
  • Knowledge = moderate/limited
  • Attitudes = positive
  • 27Fong & Hung [35]
    • Cross-sectional
    • Hong Kong Special Administrative Region (HKSAR)
    • 2002
    Public volunteers without epilepsy1,128Awareness, Attitudes & Understanding (AAU)
  • Awareness = moderate
  • Knowledge = moderate/lacking
  • Attitude = positive
  • Public attitudes = more negative than that in Western societies but was more positive than that of the Chinese in China or Taiwan
  • 28Gourie-Devi et al [36]
    • Cross-sectional
    • Delhi, India
    • 2010
    People with epilepsy (PWE)120Knowledge, Attitudes & Practices (KAP)
  • Knowledge = good
  • Attitudes = positives
  • Regional KAP affected by literacy, awareness about epilepsy and practice of different systems of medicine or category of study population
  • 29Gunadharma [37]
    • Cross-sectional
    • Bandung, Indonesia
    • 2004
    Public volunteers1,000Awareness, Understanding & Attitude (AUA)
  • Awareness = high
  • Knowledge = moderate/limited
  • Attitudes = positive
  • 30Haimanot et al [38]
    • Cross-sectional
    • Central Ethiopia, Sweden
    • 1991
    Households1,546Attitudes (A)
  • Awareness = high
  • Knowledge = poor
  • Attitudes; 1) matrimonial associations = negative 2) sharing of accommodation = negative 3) physical contacts with PWE =negative
  • Very poor knowledge resulted in social deprivations and rejection of PWE
  • 31Hasan et al [39]
    • Cross-sectional
    • Malaysia
    • 2010
    Adults382Knowledge & Attitudes (KA)
  • Knowledge = good
  • Attitudes = positive
  • 32Hills & MacKenzie [40]
    • Cross-sectional
    • New Zealand
    • 2002
    Adults400Knowledge & Attitudes (KA)
  • Awareness = high
  • Attitudes = positive/favourable
  • Knowledge = high/well-informed
  • Young people, less educated, lower socioeconomic status and the Maori or non-European - low knowledge
  • Less-positive attitudes were found among older people
  • 33Hirfanoglu et al [41]
    • Cross-sectional
    • Ankara, Turkey
    • 2009
    Children Parents220 313Knowledge, Attitudes & Perception (KAP)
  • Poor school performance, less social support, less self esteem, higher anxiety, greater stigmatisation and more depressive symptoms - significantly documented in less knowledgeable children
  • Parents - significantly more knowledgeable about the AEDs used, understanding both the effects and the side effects of the medications
  • More knowledgeable parents - less restricted family activities & significantly less worrying
  • Knowledge about epilepsy is associated with less perceived stigmatisation, social isolation, depressive symptoms and misperceptions
  • 34Jacoby et al [42]
    • Cross-sectional
    • United Kingdom
    • 2004
    General public1,694Knowledge & Attitudes (KA)
  • Awareness = moderate
  • Attitudes = indifferent/slight negative
  • Responses to a series of attitude statements indicated highly favourable attitudes
  • Responses were influenced by respondents’ sociodemographic characteristics
  • Attitudes and knowledge gaps have the potential for discriminatory behaviour
  • 35Kabir et al [43]
    • Cross-sectional
    • Northern Nigeria
    • 2005
    Adults200Knowledge, Attitudes & Beliefs (KAB)
  • Knowledge = moderate
  • Attitudes = positive
  • Literate respondents were significantly more likely to exhibit positive feelings towards PWE when compared to non-literate subjects
  • 36Kaleyias et al [44]
    • Cross-sectional
    • Greece
    • 2005
    Primary and secondary schoolteachers300Knowledge, Attitudes & Perceptions (KAP)
  • Knowledge = high
  • Perceptions = positive
  • Attitudes = positive
  • Inability of most teachers to help a convulsing child
  • Teachers’ own knowledge about epilepsy - significant factor in determining their responses
  • 37Lee et al [45]
    • Cross-sectional
    • South Korea
    • 2010
    Teachers in elementary schools664Familiarity, Knowledge & Attitudes (FKA)
  • Knowledge = moderate
  • Attitudes = indifferent
  • Teachers with inaccurate clinical knowledge demonstrated negative attitudes towards marriage and employment of PWE
  • 38Lim et al [46]
    • Cross-sectional
    • Malaysia
    • 1999
    Malaysian Chinese adults379Awareness, Understanding & Attitudes (AUA)
  • Awareness = high
  • Understanding = moderate/limited
  • Attitudes = indifferent
  • The attitudes toward epilepsy were more favourable than people in Henan, China and Taiwan
  • Older people, married, have more children, lower education, medical professionals and those who stayed in rural area had better awareness
  • Negative attitudes associated with older age, being female, married, having more children and living in rural areas
  • 39Masoudnia [47]
    • Cross-sectional
    • Yazd, Iran
    • 2009
    Five major ethnic groups500Awareness & Attitudes (AA)
  • Iranian ethnic groups were significantly different in their awareness of epilepsy
  • Most ethnic groups emphasized physical causes of epilepsy and rejected metaphysical causes
  • Iranian ethnic groups’ attitudes; 1) marriage with PWE = highly negative 2) living in isolation = highly negative 3) association with PWE = positive 4) employment = positive 5) having children = positive
  • Significant difference in their beliefs on the treatment of epilepsy
  • 40Mbewe et al [48]
    • Cross-sectional
    • Zambia
    • 2007
    Police officers175Knowledge, Attitudes & Practices (KAP)
  • Awareness = high
  • Knowledge = moderate
  • Attitudes = indifferent .Practices = good
  • 41Mecarelli et al [49]
    • Cross-sectional
    • Rome, Italy
    Schoolchildren University students344 253Knowledge & Attitudes (KA)
  • Knowledge = poor
  • Attitudes = negative
  • 42Millogo & Siranyan [50]
    • Cross-sectional
    • Burkina Faso
    • 2004
    Primary schoolteachers260Knowledge & Attitudes (KA)
  • Awareness = high
  • Knowledge = moderate/unsatisfactory
  • Attitudes = indifferent
  • Majority were interested in training involving clinical manifestations, etiology and first-aid procedures
  • 43Mirnics et al [8]
    • Longitudinal
    • Budapest, Hungary
    • 2001
    Public volunteers1,000Familiarity, Attitudes & Understanding (FAU)
  • Attitudes (employment) = negative
  • Significant decreases in prejudice rates regarding all attitudes aspects - marriage, child associating, work
  • Young age, higher education, stayed in rural area and married showed significant differences in their attitudes
  • 44Ndoye et al [51]
    • Cross-sectional
    • Senegal
    • 2005
    Sub-urban residents2,263Knowledge, Attitudes & Practices (KAP)
  • Awareness = moderate
  • Knowledge = moderate/lacking
  • Attitudes = indifferent
  • 45Neni et al [52]
    • Cross-sectional
    • East Coast Peninsular of Malaysia
    • 2010
    Rural residents615Awareness, Knowledge & Attitudes (AKA)
  • Awareness = low
  • Knowledge = low
  • Attitudes = indifferent
  • Total AKA = poor
  • Gender-wise no significant difference in AKA level
  • Respondents with higher education significantly possessed better attitudes and higher Total AKA level vs. those with lower education level
  • Employed respondents reported significantly more favourable attitudes vs. unemployed respondents
  • Cohorts with higher income possessed both significantly better attitudes and better AKA
  • 46Njamnshi et al [53]
    • Cross-sectional
    • Batibo Health District, Cameroon
    • 2010
    Traditional healers102Knowledge, Perceptions & Practice (KPP)
  • Awareness = high
  • Attitudes = indifferent
  • Knowledge = moderate
  • The significant independent predictors of attitudes - middle age, female, correct knowledge, and the misconceptions (epilepsy is contagious and it is a form of insanity)
  • 47Njamnshi et al [54]
    • Cross sectional
    • Badissa Village, Centre Region of Cameroon
    • 2009
    Healthy volunteers164Knowledge, Attitudes & Practices (KAP)
  • Awareness = high .Attitudes = indifferent
  • Significant independent determinants of attitudes - the belief that epilepsy is a form of insanity, caused by mental illness, having read about epilepsy and being married
  • 48Njamnshi et al [55]
    • Cross-sectional
    • Cameroon
    • 2009
    Patients without epilepsy, visitors and caregivers302Knowledge, Attitudes & Practices (KAP)
  • Awareness = high
  • Attitudes = indifferent
  • Predictors of negative attitudes - advanced age, lack of formal education and the belief that epilepsy is hereditary, contagious or a form of insanity
  • 49Njamnshi et al [56]
    • Cross-sectiona
    • Cameroon
    • 2009
    Healthy vilagers387Knowlede, Attitudes & Practices (KAP)
  • Awareness = high
  • Attitudes = negative
  • Knowledge = moderate
  • Predictors of attitudes - male gender, low or no level of education, having children, knowledge of the cause of epilepsy and beliefs that epilepsy is contagious or is a form of insanity
  • High level of public awareness suggested a high prevalence but contrasted with prevailing negative attitudes
  • 50Njamnshi et al [57]
    • Cross-sectional
    • Cameroon
    • 2010
    Student nurses and laboratory assistants340Familiarity, Attitudes, Understanding & Practices (FAUP)
  • Awareness = high
  • Familiarity = high
  • Knowledge = high
  • Attitudes = indifferent
  • Majority would recommend medical treatment for epilepsy
  • Independent predictors of attitudes - acquaintance with PWE, knowledge of the cause of epilepsy, the belief that epilepsy is contagious or it is a form of insanity, being male and being in the first year of studies
  • 51Njamnshi et al [58]
    • Cross-sectional
    • Ebolowa and Sangmelima, Urban Cameroon
    • 2009
    Adults visitors and caregivers without epilepsy456Awareness, Perceptions & Attitudes (APA)
  • Awareness = high
  • Attitudes = indifferent
  • Perception = moderate
  • Predictors of negative attitudes - the beliefs that epilepsy is hereditary and epilepsy is a form of insanity
  • Familiarity with and attitudes towards PWE were better than in other areas of Cameroon
  • 52Otoom et al [59]
    • Cross-sectional
    • Jordan
    • 2006
    Young adults16,044Knowledge (K)
  • Knowledge = high
  • Responses of the participants significantly differed with respect to age, gender, level of education and occupation
  • Most aspects of epilepsy management were well-informed
  • 53Pandian et al [60]
    • Cross-sectional
    • Southern India
    • 2006
    High school students1,213Knowledge, Attitudes & Practices (KAP)
  • Awareness = high
  • Knowledge = poor
  • Attitudes = negative
  • Most preferred allopathic treatment, many had faith in exorcism and visited religious places as ways to cure epilepsy
  • Familiarity with epilepsy was high, but misconceptions and negative attitudes were alarmingly high
  • 54Rafael et al [61]
    • Cross-sectional
    • France
    • 2010
    Adults1,777Knowledge & Attitudes (KA)
  • Knowledge = high
  • Attitudes = positive
  • Gaps in knowledge and erroneous beliefs prevailed, notably among men, old people and individuals with low level of education
  • 55Ramasundrum et al [62]
    • Cross-sectional
    • Kelantan, Malaysia
    • 2000
    Public volunteers839Awareness, Attitudes & Understanding (AAU)
  • Awareness = high
  • Understanding = moderate
  • Knowledge = moderate/limited
  • Attitudes = negative
  • Malay’s attitudes were more negative than the Chinese
  • Malay population were familiar with epilepsy but had poor knowledge and negative attitudes
  • 56Rwiza et al [63]
    • Cross-sectional
    • Tanzania
    • 1993
    Rural inhabitants3,256Knowledge, Attitudes & Practices (KAP)
  • Awareness = moderate
  • Knowledge = poor
  • Attitudes = negative
  • Practices = moderate/lacking
  • 57Saengpattrachai et al [64]
    • Cross-sectional
    • Thailand
    • 2010
    Adults with no underlying epilepsy1,581Familiarity, Knowledge & Attitudes (FKA)
  • Awareness = high
  • Knowledge = moderate/limited
  • The main reason given for avoiding to help PWE was lack of proper first-aid knowledge, not negative attitudes towards PWE
  • The factors predicting negative attitudes - low educational level, unfamiliarity and misconception that epilepsy is a form of insanity
  • The attitudes of friends and parents towards PWE = strongly positive
  • Awareness of the epilepsy public organization = low
  • 58Shafiq et al [3]
    • Cross-sectional
    • Pakistan
    • 2007
    Non-epileptics adults487Knowledge & Attitudes (KA)
  • Awareness = high .Knowledge = moderate
  • Attitudes = positive
  • Males significantly more likely to identify epilepsy as being non-infectious
  • Those who considered epilepsy to be infectious were significantly more likely to carry negative attitudes towards epilepsy
  • 59Tedrus et al [65]
    • Longitudinal
    • Brazil
    • 2007
    Students - first phase - second phase258 116Knowledge & Attitudes (KA)
  • Significant improvement in answering questions about etiology, epidemiology, education, work and attitudes after intervention - presentation of specific audio-visual material and discussion
  • 60Thacker et al [66]
    • Cross-sectional
    • India
    • 2008
    Primary and secondary schoolteachers568Knowledge, Awareness & Attitudes (KAA)
  • Awareness = high
  • Knowledge = high
  • Attitudes = negative
  • Despite a great degree of awareness, negative and wrong attitudes still exist
  • 61Tran et al [67]
    • Cross-sectional
    • Laos
    • 2007
    PWE Family members Villagers in Vientiane province83 83 156Knowledge, Belief, Practices & Attitudes (KBPA)
  • Knowledge = poor
  • Attitudes = negative
  • Misbelieve = significantly increased
  • Stigma = high
  • 62Tuan et al [68]
    • Cross-sectional
    • Vietnam
    • 2007
    Adults2,005Knowledge, Attitudes, Behaviour & Practices (KABP)
  • Awareness = moderate
  • Attitudes = negative
  • Knowledge = moderate
  • Familiarity, having heard of epilepsy, knew PWE or having seen seizure were associated with less negative attitudes
  • Knowledge still limited and attitudes more negative compared to some Western countries
  • 63Win & Soe [69]
    • Cross-sectional
    • Myanmar
    • 2002
    Visitors Out patients (PWE) Hospital staffs296Awareness, Attitudes & Understanding (AAU)
  • Awareness = high
  • Attitudes = negative
  • Understanding = poor
  • 64Wong et al [70]
    • Cross-sectional
    • Hong Kong
    • 2004
    Chinese233Awareness, Attitudes & Understanding (AAU)
  • Awareness = high
  • Understanding = moderate/lacking
  • Attitudes = favourable/possible
  • Open attitude towards epilepsy compared to previous studies in China and Taiwan (except in marital issues)
  • Western medicine is the treatment of choice
  • 65Yoo et al [71]
    • Cross-sectional
    • South Korea
    • 2009
    PWE Healthy controls384 1,540Familiarity, Understanding and Attitudes (FUA)
  • Familiarity with seizure did not differ significantly between the groups
  • Controls had significantly greater misunderstanding of the etiology and long-term prognosis compared to PWE
  • Attitudes expressed towards PWE were significantly different
  • Control subject expressed more negative attitudes towards PWE than did PWE themselves concerning potential relationship with their children (e.g. friendship, marriage)
  • Significant differences with respect to understanding and attitudes were found between PWE and controls
  • 66Youssef et al [72]
    • Cross-sectional
    • Trinidad and Tobago
    • 2009
    College students355Knowledge, Attitudes & Perceptions (KAP)
  • Knowledge = moderate and limited
  • Attitudes = positive
  • Students who knew PWE scored significantly higher on knowledge and attitudes questions
  • Students felt PWE are discriminated against and experienced stigmatisation
  • Interpretation:

    Awareness: 0-25% = low/poor, 26-75% = moderate/limited, 76-100% = high/good/excellent

    Knowledge: 0-25% = low/poor/lacking, 26-75% = moderate/limited, 76-100% = high/good/excellent

    Attitudes: 0-25% = negative, 26-75% = moderate/indifferent/slight negative, 76-100% = positive/favourable

    Understanding: 0-25% = low/poor, 26-75% = moderate/limited, 76-100% = high/good/excellent

    Practice: 0-25% = low/poor, 26-75% = moderate/limited/lacking, 76-100% = high/good/excellent

    Perception: 0-25% = negative, 26-75% = moderate/indifferent, 76-100% = positive

    Familiarity: 0-25% = low/poor, 26-75% = moderate/limited, 76-100% = high/good/excellent

    Belief: 0-25% = negative, 26-75% = moderate, 76-100% = positive

    *PWE = People with epilepsy

    ‡CWE = Children with epilepsy

    ͋ AEDs = Anti-epileptic drugs


    (JPG)
    Figure 1
    Trend of parameters which have been assessed in published epilepsy literature for the past decade (2000-2010).

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