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.

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

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.

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

Figure 1