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Knowledge of, attitudes toward, and perceptions of epilepsy among college students in Trinidad and Tobago
Epilepsy & Behavior 15 (2009) 160–165
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Knowledge of, attitudes toward, and perceptions of epilepsy among college students in Trinidad and Tobago Farid F. Youssef *, Sarah Dial, Nikita Jaggernauth, Cathy-Lee Jagdeo, Akilah Pascall, Lydia Ramessar, Malini Ramnarine, Rudranath Ramsawak, Trishell Simon Department of Preclinical Sciences, University of the West Indies, St. Augustine Campus, Trinidad and Tobago
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Article history: Received 3 November 2008 Revised 30 January 2009 Accepted 31 January 2009 Available online 8 February 2009 Keywords: Epilepsy College students Stigmatization Knowledge of, attitudes toward, and perceptions of epilepsy (KAPE) Trinidad and Tobago Caribbean
a b s t r a c t Epilepsy is poorly understood by the public and has been associated with numerous myths. This, coupled with its sometimes dramatic clinical manifestations, has often resulted in stigmatization of persons with epilepsy. A questionnaire to measure knowledge of, attitudes toward, and perceptions of epilepsy (KAPE) was adapted from previous studies and administered to students of the University of the West Indies, St. Augustine, Trinidad and Tobago. The response rate was 91% (355 students). Knowledge was limited, especially with respect to epilepsy’s cause, its incidence, and management of an acute emergency. Attitudes toward epilepsy were generally positive. Students who knew someone with epilepsy scored significantly higher on knowledge and attitude questions. A stigma score was calculated to assess perceived stigmatization. There were no differences between the genders, but persons from rural areas and persons of mixed ethnicity perceived less stigmatization. Hindus perceived greater stigmatization than people of other religions. Overall, students still feel persons with epilepsy are discriminated against and experience stigmatization. Ó 2009 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is a chronic neurological disorder characterized by recurrent seizures that affects approximately 40 million people worldwide. It is estimated that 1 in 20 persons will have a single epileptic seizure in their lifetime, and overall, 1 in 50 will develop epilepsy [1]. The vast majority of persons with epilepsy reside in the developing world, and even today, many of these remain with inadequate or no treatment. The overall impact of epilepsy is widespread and significant, contributing 0.5–1% of the global burden of disease [2] and leading to the establishment of a Global Campaign against Epilepsy, the second phase, ‘‘Out of the Shadows,” being launched in 2002 [3]. The title ‘‘Out of the Shadows” is instructive and highlights the psychosocial burden associated with epilepsy, which at times can far outstrip the effects of the physical ailment itself [4]. In fact, the history of epilepsy is filled with misinformation, misconceptions, and misunderstandings of the disease, resulting in widespread prejudice and stigmatization of people with epilepsy [5]. Although much work has been done to assess attitudes toward and perceptions of people with epilepsy (and eliminate negative stereotypes), the majority of this emanates from the developed
* Corresponding author. Fax: +1 (868) 645 3615. E-mail address: [email protected] (F.F. Youssef). 1525-5050/$ - see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2009.01.027
world and has limited applicability in the vastly different socioeconomic and sociocultural environments of other regions. Data from the developed world, in particular the United States, the United Kingdom, and Europe, clearly demonstrate that the psychosocial impact of epilepsy is significant [4,6,7], with a 2002 U.S. study concluding ‘‘in general the public has relatively little knowledge about epilepsy” [8]. Even for persons with epilepsy, gaps in knowledge have been reported [9,10]. Outside of the developing world, the situation is perhaps more critical, in terms of both treatment of the illness and the psychosocial burden [11–15]. A study from Senegal noted high levels of misinformation (35% thought epilepsy was contagious, and 51% agreed that it was caused by an evil spirit) and stigmatization [16]; similar results were recently reported from Cameroon [17]. In the latter study, negative attitudes were often positively correlated with age greater than 50 and lower level of education. In South India common misconceptions include the idea that epilepsy is contagious and that an epileptic attack can be terminated by making the subject hold a bunch of keys [18]. Even in the United Kingdom, numerous myths associated with epilepsy still exist today [19]. Epilepsy has also been strongly associated with religion and religious experiences, and these have been shown to strongly influence attitudes toward and perceptions of people with epilepsy [20–22]. Trinidad and Tobago (https://www.cia.gov/library/publications/ the-world-factbook/geos/td.html) is a twin-island nation, the most southern of the Caribbean, lying approximately 8 miles off the
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coast of Venezuela. Its population is heterogeneous, with two major ethnicities dominating (40% African and 40% Indian) and another 20% drawn from Europe, China, and the Middle East. This background has created a melting pot of ethnicities, religions, and cultural traditions as evidenced by the 14 annual public holidays, the majority of which recognize various religious and cultural events. The discovery of oil during the 1970s has fueled fairly steady economic growth over the last quarter of a century, and the standard of living is relatively high compared with other, similar regions. The objective of this study was to investigate the knowledge of, attitudes toward, and perceptions of epilepsy (KAPE) among students of the University of the West Indies, St. Augustine Campus, Trinidad and Tobago. Very little research has been done on epilepsy within the Caribbean region, and virtually no data exist on the psychosocial aspects of the disease in the region [23]. Given the unique social fabric of Trinidad and Tobago society we also sought to assess the impact of gender, ethnicity, religion, and rural versus subrural residency on KAPE and perceived levels of stigmatization within the population.
2. Methodology This study was approved by the Faculty Ethics Committee and designed as a cross-sectional, descriptive study analyzing KAPE among full-time students attending the University of the West Indies, St. Augustine Campus, Trinidad and Tobago, during the academic year 2007–2008. We made use of college students because they represent the more educated sector of society who will shortly enter the work force. Within Trinidad and Tobago, the period from graduation to occupying fairly senior positions within the work force is relatively short. As such, the impact of personal attitudes and perceptions and therefore, by extension, decisions and policies implemented by this group reaches far beyond themselves into the wider society. College students also provided a readily accessible population with a high degree of compliance, yet at the same time reflected a good cross section of the wider society. 2.1. Questionnaire A standardized questionnaire was used that had been adapted from previous published reports [21,24]. The questionnaire was anonymous, but respondents were required to provide information about their age, sex, ethnicity, religion, and residence. They were then asked a series of 14 questions designed to obtain general information and assess knowledge of and attitudes toward epilepsy. Respondents were required to answer yes or no to the question or choose the correct answer from a list provided [24]. The final section consisted of five additional questions that respondents answered using a 4-point Likert scale to assess perceived level of stigmatization of persons with epilepsy [21]. A pilot study involving approximately 30 students demonstrated the suitability of the questionnaire, with minor adjustments being made based on feedback and analysis. The questionnaire took approximately 15 min to complete. The study was carried out over a 6-month period from April to September 2008. A mixture of stratified random sampling (faculty and gender) and convenience sampling was used in the study. Participants were asked to provide consent before participating in the study and then were provided with a questionnaire that they were asked to complete on site. Participants were required to show a valid university identification card to ensure that they were actually full-time, undergraduate students and citizens of Trinidad and Tobago. To maintain confidentiality and improve self-reporting, a
code number was assigned to each questionnaire and no names or identification numbers were recorded. 2.2. Statistical analysis For statistical analysis the data were collapsed into four sections. The first section consisted of general questions (e.g., Have you ever witnessed a seizure? Do you know someone with epilepsy?), and the results are reported as the percentage answering each question. The second section consisted of four knowledge questions in which students had to choose only one answer from a list. Correct responses were given a score of 1, whereas wrong responses were given a score of 0, yielding a maximum knowledge score of 4. The third section consisted of five attitude questions to which students had to respond yes or no. Positive responses were given a score of 1, and negative responses were given a score of 0, yielding a maximum attitude score of 5. The final section contained questions related to perceived stigmatization, and a stigma score was calculated as described by Fernandes et al. [21]. The stigma scores range from 0.0 to 100.0, with higher scores indicating a greater perception of stigmatization. Data were analyzed using SPSS Version 12.0. We report the mean and SD for all sections. Differences between the mean knowledge and attitude scores were tested using the Kruskal–Wallis test, and those for the stigma scores were tested using ANOVA. Post hoc analysis was carried out using Tukey’s post hoc test. The a error was set at P < 0.05. 3. Results 3.1. Demographics and general questions In total, 390 questionnaires were distributed, 355 of which were returned and satisfactorily completed, giving a response rate of 91%. The average age of those sampled was 21.6 ± 3.6 years (range: 18–50). Ninety percent (90%) of those sampled were between 18 and 24 years of age. Other key demographic details are summa-
Table 1 Demographic characteristics of students sampled.a Field
Number (N)
Percentage (%)
Gender Female Male
200 155
57 43
Ethnicity Indian African Mixed Chinese Other
174 102 74 2 3
49 29 21 <1 <1
Faculty Engineering Humanities and education Science and agriculture Social sciences
62 54 126 113
18 15 36 32
Area of origin City Rural Subrural
99 77 179
28 22 50
Religion Christian Hindu Muslim Other
202 93 43 17
57 26 12 5
a Overall, the demographic composition of the students sampled generally approximated the composition of the entire population of full-time, undergraduate students of the University of the West Indies, St. Augustine.
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rized in Table 1. The overall demographic makeup of those sampled closely reflected the characteristics of the entire student body. Of the 355 persons sampled, 86% had heard or read about epilepsy, 51% knew someone with epilepsy, and 44% had actually witnessed a seizure.
No other significant differences (P > 0.05) were noted between groups including gender, ethnicity, and residence groups. Despite this overall positive attitude, 49% of students thought society discriminates against persons with epilepsy. 3.4. Stigmatization
3.2. Knowledge questions Only 5% of students surveyed answered all four knowledge questions correctly, and the overall mean score was 2.08 ± 1.0. Although the majority of students (87%) knew what a seizure was, the scores on the other questions were much lower, as summarized in Fig. 1. Importantly, 54% of students did not know what to do if they witnessed a seizure, although more than 90% did indicate they would seek a medical professional to manage the situation rather than a spiritualist or herbalist. Fifty percent (50%) of women knew how to manage a seizure as compared with 40% of male respondents who answered positively to this question. No significant differences were found between groups (gender, ethnicity, religion, residence) with respect to knowledge (P > 0.05) except between those who knew someone with epilepsy and those who did not (P < 0.001). Those who knew someone with epilepsy had a mean score of 2.29 ± 0.88, and those who did not had a score of 1.85 ± 1.07. 3.3. Attitude questions Overall attitudes toward epilepsy were good, with at least 80% of students responding positively to each question asked. The mean score was 4.32 ± 1.0, and the responses to individual questions are summarized in Table 2. There was a significant difference (P < 0.001) in attitude between those who knew someone with epilepsy, mean score 4.46 ± 0.85, and those who did not, mean score 4.17 ± 1.11. There was also a significant difference among religions, with Hindus scoring the lowest, 4.03 ± 1.17 (P < 0.05), compared with Christians, 4.41 ± 0.88, Muslims, 4.47 ± 1.01, and other, 4.35 ± 1.0. Further analysis revealed that among the five questions asked to assess attitudes toward epilepsy, Hindus scored significantly lower on only one: ‘‘Would they object to a person in their family marrying someone with epilepsy.”
The average stigma score for the entire group was 46.7 ± 16.5, and the median was 47.2 (Fig. 2). Persons of mixed ethnicity were least likely to perceive stigmatization, 42.2 ± 16.2 (P = 0.015, ANOVA, Tukey’s test, mixed < African = Indian). The mean score was 46.0 ± 16.2 for Africans and 48.7 ± 16.5 for Indians (Note: Chinese (n = 2) and other (n = 3) were excluded from this analysis because of the small sample size). With respect to religion, Hindus were more likely to perceive stigmatization, with a mean score of 50.6 ± 18.3 as compared with 45.2 ± 15.9 for Christians and 47.1 ± 15.1 for Muslims (P = 0.035, ANOVA, Tukey’s test, Hindu > Christian = Muslim) (Note: Other [n = 17] was excluded from this analysis because of small sample size). There was also a significant difference between scores when the location from which students originated was considered. Students from rural areas were less likely to perceive stigmatization (P = 0.034, ANOVA, Tukey’s test, rural < city = subrural), with a stigma score of 42.6 ± 16.6 when compared with students from the city (48.9 ± 17.1) and from subrural regions (47.3 ± 15.9). No other significant correlations were noted between groups. 4. Discussion Epilepsy is the single most common neurological disease worldwide. Unfortunately, few or no data are available on the prevalence of epilepsy within the Caribbean, though studies do suggest that it is a major problem within the region [25–27]. Despite this, psychosocial studies on people with epilepsy are few or nonexistent and our study is the first that we are aware of to assess KAPE and the psychosocial aspects of epilepsy within the Caribbean. This study is therefore important in providing baseline information about how epilepsy is perceived within the region and may help in the design of education strategies targeted to certain groups in the future.
Fig. 1. Students’ general knowledge of epilepsy. Although the majority of students knew what a seizure was, many did not know the primary cause of epilepsy and how to manage the situation in an emergency, and less than 20% could identify the prevalence of epilepsy (Dark bars indicate correct responses; stippled bars indicate incorrect responses).
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F.F. Youssef et al. / Epilepsy & Behavior 15 (2009) 160–165 Table 2 Comparison between this study and other studies with respect to awareness of epilepsy and attitudes toward persons with epilepsy.a
Heard/read about epilepsy Know someone with epilepsy Witnessed an epileptic seizure Cause of epilepsy Supernatural Mental illness Marry a child/ close relative Play with child Should be employed/ would employ Should have children Affects IQ
This study, 2008
UAE, Bener et al., 1998 [32]
South India, Radharkrishnan et al., 2000 [18]
Jordan, Daoud et al., 2007 [12]
Cameroon, Njamnshi et al., 2008 [17]
86
75
99
88
99
51
—
45
—
44
34
—
<1 5
— —
81
Senegal, Ndoye et al., 2005 [16]
Bosnia, Bagic et al., 2008 [13]
Malaysia, Ab Rahman et al., 2007 [28]
Canada, Young et al., 2002 [24]
—
91
87
91
90
—
39
—
57
52
88
66
32
56
48
15 27
15 —
34 35
51 —
— 6
5 40
— 9
32
—
11
24
32
—
—
95
87 93
93 90
89 54
48 44
57 35
58 —
85 —
— —
95 84
82
—
—
71
—
—
—
—
84
88
—
38
38
—
50
—
—
—
a
Compared with studies from other less developed regions of the world, students from Trinidad and Tobago had good awareness of epilepsy and showed more positive attitudes toward persons with epilepsy.
Fig. 2. Stigma scores for different subpopulations of the students sampled. Students from rural areas and mixed ethnicity students demonstrated less perception of stigma among their subpopulation. Hindu students were observed to have the highest perception of stigma among religious groups. Significant difference.
4.1. General awareness Among those surveyed, 86% reported having heard or read about epilepsy. Although this proportion is relatively high, it is somewhat disconcerting that almost 15% of college students, the more educated in society, had never heard of or read about epilepsy (see Table 2). This figure, though, is remarkably consistent with a similar proportion in a study among college students in Malaysia [28] and slightly less than that among college students from the more developed nation of Canada [24]. It is also
similar to proportions reported among the general public in Jordan [12] and Taiwan [29]. Although lower than the proportions in most developed countries, it is greater than those in countries of similar socioeconomic development, including Hong Kong [30], Vietnam [31], and the United Arab Emirates [32]. It is worth pointing out that awareness of epilepsy may also be influenced by the prevalence of the disease in a region as evidenced by two studies from Africa that showed almost 100% awareness. The authors attributed this to the high prevalence within the region [16,17].
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The varying methodologies and social background make it difficult to comment on the differing results between studies, but our data do suggest that with respect to awareness of epilepsy, the Trinidad and Tobago population is comparably aware and even more aware than populations in many areas of the world. No data were collected on the sources of information about epilepsy, and this perhaps should be considered in future studies. 4.2. Knowledge Overall knowledge of epilepsy was somewhat patchy and relatively low, with a mean knowledge score of 2.1/4. Although the majority of students knew what epilepsy was and realized the need to consult a physician for treatment (>85%), more than half did not know the basic first aid necessary if they witnessed a seizure. Students were also generally unaware about the incidence of epilepsy (<20% correct response). Less than 60% of students were able to identify the correct cause of epilepsy, but it was encouraging to note that only two persons (<1%) identified demon possession as the cause and only 5% indicated insanity/mental illness as the cause. These results compare favorably with reports from Africa [16,17], the Middle East [12,32], and South Asia [15,18], but seem to be lower than those for Canadian college students [24] and similar to those of Brazilian students [33] and Malaysian students [28]. Our results imply that although students’ knowledge about the cause of epilepsy is lacking, the vast majority do not regard epilepsy as anything other than a physical ailment and do not associate it with mental illness or demon possession. Despite these findings there is still a need for more widespread dissemination of information to improve general knowledge about epilepsy. This is especially true with respect to management of a seizure. Just under half of the students (46%) sampled indicated that they knew how to manage a seizure. Although this result is higher than those in other studies [28,34] it should be viewed with a note of caution, as we did not ask respondents to describe the nature of their intervention, and misconceptions about first aid and acute management still abound [19,34]. We also sought to assess if ethnicity, religion, residence, and gender had any impact on knowledge of epilepsy. No relationships were noted, but as with other reports, persons who knew someone with epilepsy scored significantly higher on questions relating to knowledge than those who did not someone with epilepsy [4,13]. 4.3. Attitudes Although knowledge was limited, attitudes toward epilepsy were generally positive as summarized in Table 2, with more than 80% of students responding positively to the five questions asked. This was very encouraging, especially when compared with results from other studies across the world [12,13,15–18,32], which all report higher levels of discrimination in response to the majority of questions (see Table 2). Interestingly, attitudes toward employment of persons with epilepsy received the highest positive score, a result opposite those of studies from Canada and Hungary [24,35]. Given that employment continues to be a major challenge facing persons with epilepsy [10], it is hoped that over time such attitudes will translate into improved opportunities within Trinidad and Tobago and the wider Caribbean society. Not surprisingly, students who knew someone with epilepsy scored significantly higher on questions related to attitude. There were no significant differences among other groupings except that Hindus scored least among religious groupings. A detailed analysis identified Hindus’ attitude toward marrying persons with epilepsy as the key factor in their lower score. This may reflect the anecdotal
perception that the Hindu community in Trinidad and Tobago tends to be much more ‘‘closed” in their attitude toward marrying persons outside of their religion and/or ethnicity. Taken together, our findings suggest that despite the fact that the students in this study had limited knowledge about epilepsy, the myths and misinformation often associated with epilepsy did not have a significant impact on students’ attitudes toward persons with epilepsy. Such findings are consistent with the fact that our sample population is a younger and more educated group [19]. 4.4. Stigmatization The final part of the study sought to use a stigma scale that measures the perception of stigma and was originally developed in Brazil for less developed countries. The average score of our population was higher than that of the original study [21]. This indicates that even though our students themselves have positive attitudes toward epilepsy, they still perceive it as a disease that is stigmatized in the wider society. This was also demonstrated by the approximately 50% of students who thought society discriminates against persons with epilepsy. Unlike the study from Brazil, we found no differences between the genders. Further analysis did demonstrate that persons of mixed ethnicity were least likely to perceive stigmatization when compared with the other major ethnic groups in the country, Africans and Indians. Trinidad and Tobago consists of a heterogeneous population in which these two major ethnicities predominate. However there is much ‘‘mixing” throughout the population, and as a nation it has a positive history of ethnic and racial tolerance. Therefore it is perhaps not surprising that persons of mixed ethnicity had a lower perception of stigma. Such persons, because of their ethnic and racial integration, may tend to perceive discrimination on the whole to a lesser extent within Trinidad and Tobago society than other groupings. Hindu students demonstrated a significantly higher perception of stigma when compared with Muslim and Christian students. This is somewhat surprising given that the link between spiritual possession and epilepsy is more commonly associated with Pentecostal Christian denominations and not Hinduism. This finding could reflect a growing ‘‘Hindu identity” that has been occurring within this subpopulation of Trinidad and Tobago over the past 15 years and stems from some level of perceived discrimination in the past. Looking at the results with respect to those of mixed ethnicity and Hindus, we suspect that groups who themselves feel they are discriminated against will be more likely to think that persons with epilepsy suffer stigmatization. We also noted that students from rural regions perceived less stigma that those from subrural areas and the city. It is difficult to explain these results as rural regions tend to be associated with those of lesser education, and previous studies suggest such persons have less knowledge about epilepsy and demonstrate ‘‘poorer” attitudes [16,17]. One possible explanation is that persons from rural areas tend to live in closer-knit village-type communities that tend to offer support to one another. Within this environment, persons may be more accepting of illness and disease. 4.5. Limitations One obvious limitation of this study was the population sampled: college students. Our reasons for selecting this group have already been discussed, but there is a clear need for further studies within the population at large. We also made use of questionnaires that participants were required to complete on site. Although every effort was made to put participants at ease and ensure confidentiality, there may have been a tendency to answer according to socially accepted norms. We also would have liked to include
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more questions, particularly sources of information about epilepsy, nature of first aid intervention, extent of religious beliefs, and other questions relating to attitudes and perceptions, but sought to keep the questionnaire length manageable so that it could be easily completed within 15 min. 5. Conclusion In conclusion we have demonstrated that knowledge about epilepsy can at best be described as patchy among college students within Trinidad and Tobago. Despite this, attitudes toward epilepsy are generally very positive, but there is still a feeling among the student population that persons with epilepsy are stigmatized, and this is most apparent among groups that may experience discrimination themselves. This study is important in providing baseline information about the psychosocial aspects of epilepsy in the region and also highlights the need for further and more coordinated efforts to educate the population at large about epilepsy. It is hoped that with increasing knowledge and awareness, long-held erroneous notions and perceptions associated with epilepsy will be eradicated. Ethical approval We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. Conflict of interest statement None of the authors has any conflict of interest to disclose. Acknowledgments We are grateful to the students who participated in this survey and the administration of the University of the West Indies for their support both financial and otherwise. We also specifically thank Mr. Rudy Singh (statistician) and Dr. Celia Poon-King (epidemiologist and coordinator Community Health Research Projects, University of the West Indies, St. Augustine). References [1] Leonardi M, Ustun TB. The global burden of epilepsy. Epilepsia 2002;43(Suppl. 6):21–5. [2] De Boer HM, Mula M, Sander JW. The global burden and stigma of epilepsy. Epilepsy Behav 2008;12:540–6. [3] De Boer HM. ‘‘Out of the Shadows”: a global campaign against epilepsy. Epilepsia 2002;43(Suppl. 6):7–8. [4] Jacoby A, Gorry J, Gamble C, Baker GA. Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia 2004;45:1405–15. [5] Eadie MJ. The understanding of epilepsy across three millennia. Clin Exp Neurol 1994;31:1–12. [6] Hills MD, MacKenzie HC. New Zealand community attitudes toward people with epilepsy. Epilepsia 2002;43:1583–9. [7] Jacoby A. Epilepsy and stigma: an update and critical review. Curr Neurol Neurosci Rep 2008;8:339–44.
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Knowledge of, attitudes toward, and perceptions of epilepsy among college students in Trinidad and Tobago Farid F. Youssef *, Sarah Dial, Nikita Jaggernauth, Cathy-Lee Jagdeo, Akilah Pascall, Lydia Ramessar, Malini Ramnarine, Rudranath Ramsawak, Trishell Simon Department of Preclinical Sciences, University of the West Indies, St. Augustine Campus, Trinidad and Tobago
a r t i c l e
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Article history: Received 3 November 2008 Revised 30 January 2009 Accepted 31 January 2009 Available online 8 February 2009 Keywords: Epilepsy College students Stigmatization Knowledge of, attitudes toward, and perceptions of epilepsy (KAPE) Trinidad and Tobago Caribbean
a b s t r a c t Epilepsy is poorly understood by the public and has been associated with numerous myths. This, coupled with its sometimes dramatic clinical manifestations, has often resulted in stigmatization of persons with epilepsy. A questionnaire to measure knowledge of, attitudes toward, and perceptions of epilepsy (KAPE) was adapted from previous studies and administered to students of the University of the West Indies, St. Augustine, Trinidad and Tobago. The response rate was 91% (355 students). Knowledge was limited, especially with respect to epilepsy’s cause, its incidence, and management of an acute emergency. Attitudes toward epilepsy were generally positive. Students who knew someone with epilepsy scored significantly higher on knowledge and attitude questions. A stigma score was calculated to assess perceived stigmatization. There were no differences between the genders, but persons from rural areas and persons of mixed ethnicity perceived less stigmatization. Hindus perceived greater stigmatization than people of other religions. Overall, students still feel persons with epilepsy are discriminated against and experience stigmatization. Ó 2009 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is a chronic neurological disorder characterized by recurrent seizures that affects approximately 40 million people worldwide. It is estimated that 1 in 20 persons will have a single epileptic seizure in their lifetime, and overall, 1 in 50 will develop epilepsy [1]. The vast majority of persons with epilepsy reside in the developing world, and even today, many of these remain with inadequate or no treatment. The overall impact of epilepsy is widespread and significant, contributing 0.5–1% of the global burden of disease [2] and leading to the establishment of a Global Campaign against Epilepsy, the second phase, ‘‘Out of the Shadows,” being launched in 2002 [3]. The title ‘‘Out of the Shadows” is instructive and highlights the psychosocial burden associated with epilepsy, which at times can far outstrip the effects of the physical ailment itself [4]. In fact, the history of epilepsy is filled with misinformation, misconceptions, and misunderstandings of the disease, resulting in widespread prejudice and stigmatization of people with epilepsy [5]. Although much work has been done to assess attitudes toward and perceptions of people with epilepsy (and eliminate negative stereotypes), the majority of this emanates from the developed
* Corresponding author. Fax: +1 (868) 645 3615. E-mail address: [email protected] (F.F. Youssef). 1525-5050/$ - see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2009.01.027
world and has limited applicability in the vastly different socioeconomic and sociocultural environments of other regions. Data from the developed world, in particular the United States, the United Kingdom, and Europe, clearly demonstrate that the psychosocial impact of epilepsy is significant [4,6,7], with a 2002 U.S. study concluding ‘‘in general the public has relatively little knowledge about epilepsy” [8]. Even for persons with epilepsy, gaps in knowledge have been reported [9,10]. Outside of the developing world, the situation is perhaps more critical, in terms of both treatment of the illness and the psychosocial burden [11–15]. A study from Senegal noted high levels of misinformation (35% thought epilepsy was contagious, and 51% agreed that it was caused by an evil spirit) and stigmatization [16]; similar results were recently reported from Cameroon [17]. In the latter study, negative attitudes were often positively correlated with age greater than 50 and lower level of education. In South India common misconceptions include the idea that epilepsy is contagious and that an epileptic attack can be terminated by making the subject hold a bunch of keys [18]. Even in the United Kingdom, numerous myths associated with epilepsy still exist today [19]. Epilepsy has also been strongly associated with religion and religious experiences, and these have been shown to strongly influence attitudes toward and perceptions of people with epilepsy [20–22]. Trinidad and Tobago (https://www.cia.gov/library/publications/ the-world-factbook/geos/td.html) is a twin-island nation, the most southern of the Caribbean, lying approximately 8 miles off the
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coast of Venezuela. Its population is heterogeneous, with two major ethnicities dominating (40% African and 40% Indian) and another 20% drawn from Europe, China, and the Middle East. This background has created a melting pot of ethnicities, religions, and cultural traditions as evidenced by the 14 annual public holidays, the majority of which recognize various religious and cultural events. The discovery of oil during the 1970s has fueled fairly steady economic growth over the last quarter of a century, and the standard of living is relatively high compared with other, similar regions. The objective of this study was to investigate the knowledge of, attitudes toward, and perceptions of epilepsy (KAPE) among students of the University of the West Indies, St. Augustine Campus, Trinidad and Tobago. Very little research has been done on epilepsy within the Caribbean region, and virtually no data exist on the psychosocial aspects of the disease in the region [23]. Given the unique social fabric of Trinidad and Tobago society we also sought to assess the impact of gender, ethnicity, religion, and rural versus subrural residency on KAPE and perceived levels of stigmatization within the population.
2. Methodology This study was approved by the Faculty Ethics Committee and designed as a cross-sectional, descriptive study analyzing KAPE among full-time students attending the University of the West Indies, St. Augustine Campus, Trinidad and Tobago, during the academic year 2007–2008. We made use of college students because they represent the more educated sector of society who will shortly enter the work force. Within Trinidad and Tobago, the period from graduation to occupying fairly senior positions within the work force is relatively short. As such, the impact of personal attitudes and perceptions and therefore, by extension, decisions and policies implemented by this group reaches far beyond themselves into the wider society. College students also provided a readily accessible population with a high degree of compliance, yet at the same time reflected a good cross section of the wider society. 2.1. Questionnaire A standardized questionnaire was used that had been adapted from previous published reports [21,24]. The questionnaire was anonymous, but respondents were required to provide information about their age, sex, ethnicity, religion, and residence. They were then asked a series of 14 questions designed to obtain general information and assess knowledge of and attitudes toward epilepsy. Respondents were required to answer yes or no to the question or choose the correct answer from a list provided [24]. The final section consisted of five additional questions that respondents answered using a 4-point Likert scale to assess perceived level of stigmatization of persons with epilepsy [21]. A pilot study involving approximately 30 students demonstrated the suitability of the questionnaire, with minor adjustments being made based on feedback and analysis. The questionnaire took approximately 15 min to complete. The study was carried out over a 6-month period from April to September 2008. A mixture of stratified random sampling (faculty and gender) and convenience sampling was used in the study. Participants were asked to provide consent before participating in the study and then were provided with a questionnaire that they were asked to complete on site. Participants were required to show a valid university identification card to ensure that they were actually full-time, undergraduate students and citizens of Trinidad and Tobago. To maintain confidentiality and improve self-reporting, a
code number was assigned to each questionnaire and no names or identification numbers were recorded. 2.2. Statistical analysis For statistical analysis the data were collapsed into four sections. The first section consisted of general questions (e.g., Have you ever witnessed a seizure? Do you know someone with epilepsy?), and the results are reported as the percentage answering each question. The second section consisted of four knowledge questions in which students had to choose only one answer from a list. Correct responses were given a score of 1, whereas wrong responses were given a score of 0, yielding a maximum knowledge score of 4. The third section consisted of five attitude questions to which students had to respond yes or no. Positive responses were given a score of 1, and negative responses were given a score of 0, yielding a maximum attitude score of 5. The final section contained questions related to perceived stigmatization, and a stigma score was calculated as described by Fernandes et al. [21]. The stigma scores range from 0.0 to 100.0, with higher scores indicating a greater perception of stigmatization. Data were analyzed using SPSS Version 12.0. We report the mean and SD for all sections. Differences between the mean knowledge and attitude scores were tested using the Kruskal–Wallis test, and those for the stigma scores were tested using ANOVA. Post hoc analysis was carried out using Tukey’s post hoc test. The a error was set at P < 0.05. 3. Results 3.1. Demographics and general questions In total, 390 questionnaires were distributed, 355 of which were returned and satisfactorily completed, giving a response rate of 91%. The average age of those sampled was 21.6 ± 3.6 years (range: 18–50). Ninety percent (90%) of those sampled were between 18 and 24 years of age. Other key demographic details are summa-
Table 1 Demographic characteristics of students sampled.a Field
Number (N)
Percentage (%)
Gender Female Male
200 155
57 43
Ethnicity Indian African Mixed Chinese Other
174 102 74 2 3
49 29 21 <1 <1
Faculty Engineering Humanities and education Science and agriculture Social sciences
62 54 126 113
18 15 36 32
Area of origin City Rural Subrural
99 77 179
28 22 50
Religion Christian Hindu Muslim Other
202 93 43 17
57 26 12 5
a Overall, the demographic composition of the students sampled generally approximated the composition of the entire population of full-time, undergraduate students of the University of the West Indies, St. Augustine.
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rized in Table 1. The overall demographic makeup of those sampled closely reflected the characteristics of the entire student body. Of the 355 persons sampled, 86% had heard or read about epilepsy, 51% knew someone with epilepsy, and 44% had actually witnessed a seizure.
No other significant differences (P > 0.05) were noted between groups including gender, ethnicity, and residence groups. Despite this overall positive attitude, 49% of students thought society discriminates against persons with epilepsy. 3.4. Stigmatization
3.2. Knowledge questions Only 5% of students surveyed answered all four knowledge questions correctly, and the overall mean score was 2.08 ± 1.0. Although the majority of students (87%) knew what a seizure was, the scores on the other questions were much lower, as summarized in Fig. 1. Importantly, 54% of students did not know what to do if they witnessed a seizure, although more than 90% did indicate they would seek a medical professional to manage the situation rather than a spiritualist or herbalist. Fifty percent (50%) of women knew how to manage a seizure as compared with 40% of male respondents who answered positively to this question. No significant differences were found between groups (gender, ethnicity, religion, residence) with respect to knowledge (P > 0.05) except between those who knew someone with epilepsy and those who did not (P < 0.001). Those who knew someone with epilepsy had a mean score of 2.29 ± 0.88, and those who did not had a score of 1.85 ± 1.07. 3.3. Attitude questions Overall attitudes toward epilepsy were good, with at least 80% of students responding positively to each question asked. The mean score was 4.32 ± 1.0, and the responses to individual questions are summarized in Table 2. There was a significant difference (P < 0.001) in attitude between those who knew someone with epilepsy, mean score 4.46 ± 0.85, and those who did not, mean score 4.17 ± 1.11. There was also a significant difference among religions, with Hindus scoring the lowest, 4.03 ± 1.17 (P < 0.05), compared with Christians, 4.41 ± 0.88, Muslims, 4.47 ± 1.01, and other, 4.35 ± 1.0. Further analysis revealed that among the five questions asked to assess attitudes toward epilepsy, Hindus scored significantly lower on only one: ‘‘Would they object to a person in their family marrying someone with epilepsy.”
The average stigma score for the entire group was 46.7 ± 16.5, and the median was 47.2 (Fig. 2). Persons of mixed ethnicity were least likely to perceive stigmatization, 42.2 ± 16.2 (P = 0.015, ANOVA, Tukey’s test, mixed < African = Indian). The mean score was 46.0 ± 16.2 for Africans and 48.7 ± 16.5 for Indians (Note: Chinese (n = 2) and other (n = 3) were excluded from this analysis because of the small sample size). With respect to religion, Hindus were more likely to perceive stigmatization, with a mean score of 50.6 ± 18.3 as compared with 45.2 ± 15.9 for Christians and 47.1 ± 15.1 for Muslims (P = 0.035, ANOVA, Tukey’s test, Hindu > Christian = Muslim) (Note: Other [n = 17] was excluded from this analysis because of small sample size). There was also a significant difference between scores when the location from which students originated was considered. Students from rural areas were less likely to perceive stigmatization (P = 0.034, ANOVA, Tukey’s test, rural < city = subrural), with a stigma score of 42.6 ± 16.6 when compared with students from the city (48.9 ± 17.1) and from subrural regions (47.3 ± 15.9). No other significant correlations were noted between groups. 4. Discussion Epilepsy is the single most common neurological disease worldwide. Unfortunately, few or no data are available on the prevalence of epilepsy within the Caribbean, though studies do suggest that it is a major problem within the region [25–27]. Despite this, psychosocial studies on people with epilepsy are few or nonexistent and our study is the first that we are aware of to assess KAPE and the psychosocial aspects of epilepsy within the Caribbean. This study is therefore important in providing baseline information about how epilepsy is perceived within the region and may help in the design of education strategies targeted to certain groups in the future.
Fig. 1. Students’ general knowledge of epilepsy. Although the majority of students knew what a seizure was, many did not know the primary cause of epilepsy and how to manage the situation in an emergency, and less than 20% could identify the prevalence of epilepsy (Dark bars indicate correct responses; stippled bars indicate incorrect responses).
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Heard/read about epilepsy Know someone with epilepsy Witnessed an epileptic seizure Cause of epilepsy Supernatural Mental illness Marry a child/ close relative Play with child Should be employed/ would employ Should have children Affects IQ
This study, 2008
UAE, Bener et al., 1998 [32]
South India, Radharkrishnan et al., 2000 [18]
Jordan, Daoud et al., 2007 [12]
Cameroon, Njamnshi et al., 2008 [17]
86
75
99
88
99
51
—
45
—
44
34
—
<1 5
— —
81
Senegal, Ndoye et al., 2005 [16]
Bosnia, Bagic et al., 2008 [13]
Malaysia, Ab Rahman et al., 2007 [28]
Canada, Young et al., 2002 [24]
—
91
87
91
90
—
39
—
57
52
88
66
32
56
48
15 27
15 —
34 35
51 —
— 6
5 40
— 9
32
—
11
24
32
—
—
95
87 93
93 90
89 54
48 44
57 35
58 —
85 —
— —
95 84
82
—
—
71
—
—
—
—
84
88
—
38
38
—
50
—
—
—
a
Compared with studies from other less developed regions of the world, students from Trinidad and Tobago had good awareness of epilepsy and showed more positive attitudes toward persons with epilepsy.
Fig. 2. Stigma scores for different subpopulations of the students sampled. Students from rural areas and mixed ethnicity students demonstrated less perception of stigma among their subpopulation. Hindu students were observed to have the highest perception of stigma among religious groups. Significant difference.
4.1. General awareness Among those surveyed, 86% reported having heard or read about epilepsy. Although this proportion is relatively high, it is somewhat disconcerting that almost 15% of college students, the more educated in society, had never heard of or read about epilepsy (see Table 2). This figure, though, is remarkably consistent with a similar proportion in a study among college students in Malaysia [28] and slightly less than that among college students from the more developed nation of Canada [24]. It is also
similar to proportions reported among the general public in Jordan [12] and Taiwan [29]. Although lower than the proportions in most developed countries, it is greater than those in countries of similar socioeconomic development, including Hong Kong [30], Vietnam [31], and the United Arab Emirates [32]. It is worth pointing out that awareness of epilepsy may also be influenced by the prevalence of the disease in a region as evidenced by two studies from Africa that showed almost 100% awareness. The authors attributed this to the high prevalence within the region [16,17].
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The varying methodologies and social background make it difficult to comment on the differing results between studies, but our data do suggest that with respect to awareness of epilepsy, the Trinidad and Tobago population is comparably aware and even more aware than populations in many areas of the world. No data were collected on the sources of information about epilepsy, and this perhaps should be considered in future studies. 4.2. Knowledge Overall knowledge of epilepsy was somewhat patchy and relatively low, with a mean knowledge score of 2.1/4. Although the majority of students knew what epilepsy was and realized the need to consult a physician for treatment (>85%), more than half did not know the basic first aid necessary if they witnessed a seizure. Students were also generally unaware about the incidence of epilepsy (<20% correct response). Less than 60% of students were able to identify the correct cause of epilepsy, but it was encouraging to note that only two persons (<1%) identified demon possession as the cause and only 5% indicated insanity/mental illness as the cause. These results compare favorably with reports from Africa [16,17], the Middle East [12,32], and South Asia [15,18], but seem to be lower than those for Canadian college students [24] and similar to those of Brazilian students [33] and Malaysian students [28]. Our results imply that although students’ knowledge about the cause of epilepsy is lacking, the vast majority do not regard epilepsy as anything other than a physical ailment and do not associate it with mental illness or demon possession. Despite these findings there is still a need for more widespread dissemination of information to improve general knowledge about epilepsy. This is especially true with respect to management of a seizure. Just under half of the students (46%) sampled indicated that they knew how to manage a seizure. Although this result is higher than those in other studies [28,34] it should be viewed with a note of caution, as we did not ask respondents to describe the nature of their intervention, and misconceptions about first aid and acute management still abound [19,34]. We also sought to assess if ethnicity, religion, residence, and gender had any impact on knowledge of epilepsy. No relationships were noted, but as with other reports, persons who knew someone with epilepsy scored significantly higher on questions relating to knowledge than those who did not someone with epilepsy [4,13]. 4.3. Attitudes Although knowledge was limited, attitudes toward epilepsy were generally positive as summarized in Table 2, with more than 80% of students responding positively to the five questions asked. This was very encouraging, especially when compared with results from other studies across the world [12,13,15–18,32], which all report higher levels of discrimination in response to the majority of questions (see Table 2). Interestingly, attitudes toward employment of persons with epilepsy received the highest positive score, a result opposite those of studies from Canada and Hungary [24,35]. Given that employment continues to be a major challenge facing persons with epilepsy [10], it is hoped that over time such attitudes will translate into improved opportunities within Trinidad and Tobago and the wider Caribbean society. Not surprisingly, students who knew someone with epilepsy scored significantly higher on questions related to attitude. There were no significant differences among other groupings except that Hindus scored least among religious groupings. A detailed analysis identified Hindus’ attitude toward marrying persons with epilepsy as the key factor in their lower score. This may reflect the anecdotal
perception that the Hindu community in Trinidad and Tobago tends to be much more ‘‘closed” in their attitude toward marrying persons outside of their religion and/or ethnicity. Taken together, our findings suggest that despite the fact that the students in this study had limited knowledge about epilepsy, the myths and misinformation often associated with epilepsy did not have a significant impact on students’ attitudes toward persons with epilepsy. Such findings are consistent with the fact that our sample population is a younger and more educated group [19]. 4.4. Stigmatization The final part of the study sought to use a stigma scale that measures the perception of stigma and was originally developed in Brazil for less developed countries. The average score of our population was higher than that of the original study [21]. This indicates that even though our students themselves have positive attitudes toward epilepsy, they still perceive it as a disease that is stigmatized in the wider society. This was also demonstrated by the approximately 50% of students who thought society discriminates against persons with epilepsy. Unlike the study from Brazil, we found no differences between the genders. Further analysis did demonstrate that persons of mixed ethnicity were least likely to perceive stigmatization when compared with the other major ethnic groups in the country, Africans and Indians. Trinidad and Tobago consists of a heterogeneous population in which these two major ethnicities predominate. However there is much ‘‘mixing” throughout the population, and as a nation it has a positive history of ethnic and racial tolerance. Therefore it is perhaps not surprising that persons of mixed ethnicity had a lower perception of stigma. Such persons, because of their ethnic and racial integration, may tend to perceive discrimination on the whole to a lesser extent within Trinidad and Tobago society than other groupings. Hindu students demonstrated a significantly higher perception of stigma when compared with Muslim and Christian students. This is somewhat surprising given that the link between spiritual possession and epilepsy is more commonly associated with Pentecostal Christian denominations and not Hinduism. This finding could reflect a growing ‘‘Hindu identity” that has been occurring within this subpopulation of Trinidad and Tobago over the past 15 years and stems from some level of perceived discrimination in the past. Looking at the results with respect to those of mixed ethnicity and Hindus, we suspect that groups who themselves feel they are discriminated against will be more likely to think that persons with epilepsy suffer stigmatization. We also noted that students from rural regions perceived less stigma that those from subrural areas and the city. It is difficult to explain these results as rural regions tend to be associated with those of lesser education, and previous studies suggest such persons have less knowledge about epilepsy and demonstrate ‘‘poorer” attitudes [16,17]. One possible explanation is that persons from rural areas tend to live in closer-knit village-type communities that tend to offer support to one another. Within this environment, persons may be more accepting of illness and disease. 4.5. Limitations One obvious limitation of this study was the population sampled: college students. Our reasons for selecting this group have already been discussed, but there is a clear need for further studies within the population at large. We also made use of questionnaires that participants were required to complete on site. Although every effort was made to put participants at ease and ensure confidentiality, there may have been a tendency to answer according to socially accepted norms. We also would have liked to include
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more questions, particularly sources of information about epilepsy, nature of first aid intervention, extent of religious beliefs, and other questions relating to attitudes and perceptions, but sought to keep the questionnaire length manageable so that it could be easily completed within 15 min. 5. Conclusion In conclusion we have demonstrated that knowledge about epilepsy can at best be described as patchy among college students within Trinidad and Tobago. Despite this, attitudes toward epilepsy are generally very positive, but there is still a feeling among the student population that persons with epilepsy are stigmatized, and this is most apparent among groups that may experience discrimination themselves. This study is important in providing baseline information about the psychosocial aspects of epilepsy in the region and also highlights the need for further and more coordinated efforts to educate the population at large about epilepsy. It is hoped that with increasing knowledge and awareness, long-held erroneous notions and perceptions associated with epilepsy will be eradicated. Ethical approval We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. Conflict of interest statement None of the authors has any conflict of interest to disclose. Acknowledgments We are grateful to the students who participated in this survey and the administration of the University of the West Indies for their support both financial and otherwise. We also specifically thank Mr. Rudy Singh (statistician) and Dr. Celia Poon-King (epidemiologist and coordinator Community Health Research Projects, University of the West Indies, St. Augustine). References [1] Leonardi M, Ustun TB. The global burden of epilepsy. Epilepsia 2002;43(Suppl. 6):21–5. [2] De Boer HM, Mula M, Sander JW. The global burden and stigma of epilepsy. Epilepsy Behav 2008;12:540–6. [3] De Boer HM. ‘‘Out of the Shadows”: a global campaign against epilepsy. Epilepsia 2002;43(Suppl. 6):7–8. [4] Jacoby A, Gorry J, Gamble C, Baker GA. Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia 2004;45:1405–15. [5] Eadie MJ. The understanding of epilepsy across three millennia. Clin Exp Neurol 1994;31:1–12. [6] Hills MD, MacKenzie HC. New Zealand community attitudes toward people with epilepsy. Epilepsia 2002;43:1583–9. [7] Jacoby A. Epilepsy and stigma: an update and critical review. Curr Neurol Neurosci Rep 2008;8:339–44.
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