Epilepsia, 49(4):564–572, 2008 doi: 10.1111/j.1528-1167.2007.01433.x
FULL-LENGTH ORIGINAL RESEARCH
Public knowledge and attitudes toward epilepsy in Kuwait ∗ ∗
Abdelmoneim Awad and †Fatma Sarkhoo
Department of Pharmacy Practice, Faculty of Pharmacy, Kuwait University, Safat, Kuwait, and †Ministry of Health, Kuwait
SUMMARY Purpose: The study was conducted to determine the familiarity with, knowledge of, misunderstandings, and attitudes toward epilepsy among the Kuwaiti population. Methods: A pretested questionnaire was used to collect data from a sample of 784 Kuwaiti individuals, selected from five governorates in Kuwait using a multistage stratified clustered sampling. Results: Seven hundred fifty-five subjects were interviewed, and 97.6% reported their awareness about epilepsy. Of these, 51.8% knew someone who had epilepsy, 56.4% had witnessed an epileptic seizure, 45.9% believed that epilepsy is a hereditary disease, 60.4% reported that “all epileptic fits manifest symptoms of generalized tonic–clonic seizure,” 88.3% indicated that putting an object into the patient’s mouth to prevent tongue biting during a seizure is appropriate, and 57.1% stated that drug therapy was the only treatment avail-
Epilepsy is one of the most common neurological diseases worldwide. It still remains a public health problem, with sociocultural and economical impacts in developing countries (Rwizaw et al., 1992). Several studies have shown the lack of basic knowledge of epilepsy, misunderstanding, and negative attitudes among the general public (Caveness & Gallup, 1980; Canger & Cornaggia, 1985; Jensen & Dam, 1992), epileptic patients and their family members (Doughty et al., 2003), and even the health care professionals (Beran et al., 1992; Al-Adawi et al., 2001). Stigma has been historically recognized as a major burden to epileptic patients and their families, and its high level was found to adversely affect the quality of life in patients with epilepsy (Youn et al., 2000; Jacoby Accepted October 15, 2007; Online Early publication January 22, 2008. Address correspondence to Dr. Abdelmoneim Awad, Department of Pharmacy Practice, Faculty of Pharmacy, Kuwait University, P.O. Box 24923, Safat 13110, Kuwait. E-mail:
[email protected] Blackwell Publishing, Inc. C 2008 International League Against Epilepsy
able for epilepsy. Objections to shake hands with, working with, marrying, and employing epileptic patients were reported by 16.0%, 24.8%, 71.6%, and 45.2%, respectively. Childbirth by epileptic women and allowing children to play with an epileptic child were opposed by 56.3% and 27.7%, respectively. A total of 370 (50.2%) agreed that epilepsy is equivalent to psychiatric disorder. Discussion: The present findings have demonstrated that epilepsy is a well-known disease in Kuwait, and that negative attitudes toward epilepsy do prevail in Kuwait. The majority of the negative attitudes were significantly associated with the misunderstanding of epilepsy. Continuing effective educational interventions would be needed in order to improve the appropriate understanding of epilepsy, and to ameliorate the social discrimination and misconceptions against epileptic patients. KEY WORDS: Epilepsy, Attitudes, Awareness, Kuwait.
et al., 2005). It was reported that epileptic patients frequently experience problems regarding employment (ElHilu, 1990; Elwes et al., 1991; Jacoby, 1995), education (El-Hilu, 1990; Aldenkamp, 1995), and interpersonal relationships (Scambler & Hopkins, 1986; Collings, 1990; El-Hilu, 1990). These problems are always related to the discrimination or misconceptions that epileptic patients are with physical disability, mental retardation, and emotional disturbance (Chung, 1995). Studies to determine the public awareness of, understanding of, and attitudes toward epilepsy is a necessary first step in eliminating social discrimination against epileptic patients (Lim & Pan, 2005). Surveys have been performed in several countries with different cultural backgrounds. These included studies from the Americas (Caveness & Gallup, 1980; Baumann et al., 1994; Santos et al., 1998; Young et al., 2002), New Zealand (Hills & MacKenzie, 2002), Europe (Finke, 1980; Iivanainen et al., 1980; Canger & Cornaggia, 1985; Jensen & Dam, 1992; Mirnics et al., 2001; Jacoby et al., 2004; Diamantopoulos et al., 2006), Asia (Lai et al., 1990; Yamada, 1993; Chung et al.,
564
565 Public Attitudes Toward Epilepsy in Kuwait 1995; Gambhir et al., 1995; Aziz et al., 1997; Bener et al., 1998; Fong & Hung, 2002; Choi-Kwon et al., 2004; Silpakit, 2004), and Africa (Tekle-Haimanot et al., 1991; Rwiza et al., 1992; Rwiza et al., 1993; Meilke et al., 1997; Mangena-Netshikweta, 2003). There has been no published data so far on public awareness, knowledge, and attitudes toward epilepsy in Kuwait. Therefore, this study was designed to determine (1) the familiarity with, knowledge of, misunderstandings, and attitudes toward epilepsy among the Kuwaiti population and (2) how the respondents’ sociodemographic characteristics influenced their familiarity, knowledge, misunderstandings, and attitudes toward epilepsy. The findings of this study will provide a thorough understanding of the quantification of the false beliefs in relation to epilepsy among Kuwaiti individuals, which is essential before the implementation of epilepsy education for the general public.
M ETHODS The study was conducted in Kuwait, which is in the Middle East with an area of 17,820 km2 and an estimated population of 3 million people, one-third of them are Kuwaitis (2006 estimate). The survey was conducted during the period from February to November 2006. The study population consisted of Kuwaiti individuals from five governorates of Kuwait: Capital, Hawalli, Al-Ahmadi, AlFarwaniyah, and Al-Jahra. The sample size was determined using PS power and sample size calculator V.2.1.31 (Lenth, 2006). A total sample size of 774 individuals would be required to determine a 10% difference in population between two groups, for example, male versus female with an 80% power and at 5% significance level. A sample of 784 was selected to adjust for possible nonresponse using multistage stratified clustered sampling from the five governorates: Capital (189), Al-Ahmadi (179), Farwaniyah (170), Hawalli (151), and Al-Jahra (95). The five governorates were not equally represented because the total number of Kuwaitis in each governorate was different. This involved randomly selecting houses, diwaniyas (local congressional meetings), hospitals, and shopping centers within each governorate, and from these, individuals were contacted and given an explanation with regard to the purpose of the study. They were assured of confidentiality and they gave verbal consent to participate in the study. Data were collected via face-to-face structured interview of the respondents. Excluded were subjects who were (1) 80 years of age; (2) epileptic patients; (3) who had close relatives with epilepsy, and were currently living with them; and (4) health care professionals and students. The questionnaire consisted of six sections, and it was adapted from one used and validated for content in Hong Kong (Fong & Hung, 2002). The questionnaire contains both open-ended and close-ended questions. The ques-
tions that covered familiarity with epilepsy, knowledge of epilepsy, and attitude toward epilepsy were identical to those used in the Hong Kong study. The first section included five items to provide information about the demographic characteristics of the respondents (gender, age in years, education level, employment, and residence). Section two consisted of four questions to explore the familiarity of the study participants with epilepsy. The third section included six questions to determine the knowledge with regard to epilepsy. Section four included 11 questions to explore the attitudes toward epilepsy. The fifth section included six questions to obtain information about the myths and misunderstandings about epilepsy. The last section consisted of two questions to determine the willingness to obtain more information about epilepsy and the preferable source of information. The questionnaire was translated into Arabic and subjected to a process of forward and backward translation. The accuracy and meaning of the translated versions both forward and backward were checked, and recommended amendments where necessary were discussed before being finalized. It was pretested among 13 Kuwaiti subjects, not included in the study for readability and understanding. Data were entered into the Statistical Package for Social Sciences (SPSS, version 14, SPSS, Chicago, IL, U.S.A.) and descriptive analysis conducted. The results for each item on the questionnaire were reported as percentage and 95% confidence intervals. The confidence intervals were computed using EpiCalc 2000 (CDC, Atlanta, GA, U.S.A.). As the main outcome measures were binary variables describing familiarity, knowledge, attitudes toward, and myths about epilepsy, logistic regression models were performed using SPSS to fit the best model for the predictor-independent variables. Only the results of multivariate logistic analysis are reported showing odds ratio and 95% confidence interval. The chi-square test was used to test for association between knowledge of and attitudes toward epilepsy. Statistical significance was accepted at p 60 years]); (3) level of education ((a) low [0–6 years] for those who never went to school or completed primary school, (b) intermediate [7–12 years] for those who completed intermediate school or secondary school, and (c) high [>12 years] for those who completed university or postgraduate studies); (4) current employment (housewives, students, unemployed, and employed); (5) residence (Capital, Hawalli, Al-Farwaniyah, Al-Ahmadi, and Al-Jahra).
R ESULTS A total of 784 Kuwaiti citizens were approached to be included in the study; 755 (96.3%) agreed to participate. Epilepsia, 49(4):564–572, 2008 doi: 10.1111/j.1528-1167.2007.01433.x
566 A. Awad and F. Sarkhoo Seven hundred thirty-seven (97.6%) reported their awareness about epilepsy and completed the interview and their mean (SD) age was 34.1 (10) years. Four hundred nineteen (56.9%) were females. Their levels of education distribution were 61 (8.3%), 265 (36.0%), and 411 (55.8%) for low (0–6 years), intermediate (7–12 years), and high (>12 years), respectively. They were housewives, 49 (6.6%); students, 92 (12.5%); unemployed, 104 (14.1%); and employed, 492 (66.8%). The distribution of the respondents’ residence was as follows: 185 (25.1%), 183 (24.8%), 152 (20.6%), 123 (16.7%), and 94 (12.8%) for the Capital, Hawalli, Al-Farwaniyah, Al-Ahmadi, and Al-Jahra, respectively. A total of 737 (97.6%; 95% CI 96.2–98.5%) reported that they had heard of epilepsy and completed the interview, 382 (51.8%; 48.2–55.5%) knew someone who had epilepsy, and 416 (56.4%; 52.8–60.1%) had witnessed someone who had a seizure. The major sources from which the respondents had obtained the knowledge about epilepsy included friends or relatives, 363 (49.3%), mass media (e.g., T.V., radio, newspaper), 250 (33.9%), school or university, 100 (13.6%), and other sources such as seminars about public health education, 24 (3.3%). Table 1 provides the adjusted odds ratios and 95% confidence intervals that quantify the association between sociodemographic factors and the responses of the study participants to questions about knowledge of epilepsy. A total of 338 (45.9%; 42.2%–49.5%) respondents believed that epilepsy was a hereditary disease, and 445 (60.4%; 56.7%– 63.9%) believed that “all epileptic fits manifest symptoms of generalized tonic–clonic seizure.” A total of 336 (45.6%; 42.0%–49.3%) reported that epilepsy is a curable disease, 651 (88.3%; 85.7%–90.3%) believed that putting an object into the patient’s mouth to prevent tongue biting during a seizure is appropriate, and 421 (57.1%; 53.5%– 60.7%) stated that drug therapy is the only treatment available for epilepsy. Table 2 provides the adjusted odds ratios and 95% confidence intervals that quantify the association between sociodemographic factors and responses to questions about attitudes toward epilepsy. Objections to marrying and employing epileptic patients were stated by 528 (71.6%; 68.2%–74.8%) and 333 (45.2%; 41.6%–48.9%), respectively. Moreover, childbirth by epileptic women and allowing children to play with an epileptic child were opposed by 415 (56.3%; 95% CI 52.6%–59.9%) and 204 (27.7%; 24.4%–31.0%), respectively. Two hundred two (27.4%; 24.3%–30.8%) stated that they would conceal the information that their family member had epilepsy because they were afraid of being discriminated (47.0%), felt ashamed for their family (19.8%), and others (33.2%) included that “it is a personal secret that should not be told to others.” Two hundred twelve (28.8%; 25.6%–32.2%) were reluctant to help someone with an epileptic seizure owing to the following reasons: did not know how to help (62.3%), Epilepsia, 49(4):564–572, 2008 doi: 10.1111/j.1528-1167.2007.01433.x
afraid of epileptic seizures (35.4%), and did not want to help (2.3%). Table 3 provides the adjusted odds ratios and 95% confidence intervals that quantify the association between sociodemographic factors and responses to questions in relation to myths and misunderstandings regarding epilepsy. A total of 370 (50.2%; 46.5%–53.9%) agreed that epilepsy is equivalent to psychiatric disorders, 325 (44.1%; 40.5%– 47.8%) supported that epileptic children should study in a special school, 221 (30.0%; 26.7%–33.5%) reported that the IQ of epileptic persons is lower than that of normal population, 256 (34.7%; 31.3%–38.3%) believed that prolonged use of computer can cause epilepsy. Five hundred sixty-seven (76.9%; 73.7%–79.9%) of the respondents indicated their willingness to obtain more information with regard to epilepsy. Young respondents, those with intermediate and high educational levels, housewives, employed respondents, and those who lived in the Capital, Al-Ahmadi, and Al-Jahra more often stated their willingness for more information (p < 0.05). The sources of information that were preferred by respondents included the Internet, 219 (38.6%); library, 137 (24.2%); physicians, 301 (37.3%); pharmacist, 22 (3.9%); and others, 73 (12.9%), including scientific brochures, mass media, and seminars about public health education.
D ISCUSSION This is the first study to our knowledge that demonstrated the levels of awareness, knowledge, attitudes, and misunderstanding toward epilepsy in the Kuwaiti population. The current results would be the first step in providing a quantitative measurement of the social discrimination and misconceptions against epileptic patients in Kuwait, and could be utilized in designing educational campaigns to alleviate these problems and promote the integration of the epileptic patients into their society. The present findings revealed that those who had heard about epilepsy, knew someone with epilepsy, and had witnessed someone having a seizure were 97.6%, 51.8%, and 56.4%, respectively. These figures are comparable to those reported in Western countries (Caveness et al., 1980; Iivanainen et al., 1980; Jensen & Dam, 1992), but more favorable than those reported in United Arab Emirates (Bener et al., 1998), Hong Kong (Fong & Chung, 2002), Germany (Finke, 1980), and Italy (Canger & Cornaggia, 1985). The percentages of those who knew someone with epilepsy or had seen someone who had a seizure were low compared to those who heard about epilepsy; this may be attributed to the social culture in Kuwait, where most of the epileptic patients have limited social activities and tend to conceal the information that they have epilepsy. This study also revealed that the major source of knowledge with regard to epilepsy was not via formal education, but via relatives and/or friends. This shows that
567 Public Attitudes Toward Epilepsy in Kuwait Table 1. Outcomes (“NO” responses) to questions about knowledge of epilepsy, differences by sociodemographic variables (n = 737) Q1 Respondent characteristic Gender Male Female Age (years) 20–39 40–59 60–70 Education (years) Low (0–6) Intermediate (7–12) High (>12) Employment Housewives Students Unemployed Employed Residence Capital Hawalli Al-Farwaniyah Al-Ahmadi Al-Jahra
n (%) 399 (54.1)
OR (95% CI)
Q2 Pvalue
n (%) 704 (95.5)
OR (95% CI)
Q3 Pvalue
n (%) 292 (39.6)
OR (95% CI)
Pvalue
165 (51.9) 234 (55.8)
Reference 1.2 (0.88–1.6)
0.29
303 (95.3) 401 (95.7)
Reference 1.1 (0.55–2.2)
0.78
123 (38.7) 169 (40.3)
Reference 1.1 (0.80–1.4)
0.65
284 (52.7) 107 (58.5) 8 (53.3)
Reference 1.3 (0.90–1.8) 1.0 (0.37–2.9)
0.18 0.96
514 (95.4) 176 (96.2) 14 (93.3)
Reference 1.2 (0.52–2.9) 0.68 (0.10–5.4)
0.65 0.72
220 (40.8) 66 (36.1) 6 (40.0)
Reference 0.82 (0.6–1.2) 0.97 (0.34–2.8)
0.26 0.95
34 (55.7) 132 (49.8) 233 (56.7)
0.96 (0.56–1.7) 0.76 (0.56–1.0) Reference
0.89 0.08
49 (80.3) 248 (93.6) 407 (99.0)
0.04 (0.01–0.13) 0.14 (0.05–0.43) Reference
< 0.001 0.001
7 (11.5) 83 (31.3) 202 (49.1)
0.13 (0.06–0.30) 0.47 (0.34–0.65) Reference
< 0.001 < 0.001
26 (53.1) 48 (52.2) 54 (51.9) 271 (55.1)
0.92 (0.51–1.7) 0.89 (0.57–1.4) 0.88 (0.58–1.3) Reference
0.79 0.61 0.56
45 (91.8) 84 (91.3) 100 (96.2) 475 (96.5)
0.40 (0.13–1.3) 0.38 (0.16–0.90) 0.90 (0.30–2.7) Reference
0.12 0.03 0.84
26 (53.1) 31 (33.7) 25 (24.0) 210 (42.7)
1.5 (0.84–2.7) 0.68 (0.43–1.1) 0.43 (0.26–0.69) Reference
0.17 0.11 0.001
98 (53.0) 94 (51.4) 89 (58.6) 63 (51.2) 55 (58.5)
Reference 0.94 (0.62–1.4) 1.3 (0.81–1.9) 0.93 (0.60–1.5) 1.3 (0.76–2.1)
180 (97.3) 179 (97.8) 147 (96.7) 112 (91.1) 86 (91.5)
Reference 1.2 (0.33–4.8) 0.82 (0.23–2.9) 0.28 (0.10–0.84) 0.30 (0.10–0.94)
86 (46.5) 88 (48.1) 55 (36.2) 38 (30.9) 25 (26.6)
Reference 1.1 (0.71–1.6) 0.65 (0.42–1.0) 0.52 (0.32–0.83) 0.42 (0.24–0.72)
0.76 0.31 0.76 0.38
0.75 0.75 0.02 0.04
0.76 0.06 0.007 0.002
Q1: Is the majority of epilepsy acquired through inheritance? Q2: Is epilepsy infectious? Q3: Will all epileptic fits manifest symptoms of generalized tonic–clonic seizure? Q4 Respondent characteristic Gender Male Female Age (years) 20–39 40–59 60–70 Education (years) Low (0–6) Intermediate (7–12) High (>12) Employment Housewives Students Unemployed Employed Residence Capital Hawalli Al-Farwaniyah Al-Ahmadi Al-Jahra
n (%) 401 (54.4)
OR (95% CI)
Q5 Pvalue
n (%) 86 (11.7)
OR (95% CI)
Q6 Pvalue
n (%) 316 (42.9)
OR (95% CI)
Pvalue
154 (48.4) 247 (58.9)
Reference 1.53 (1.1–2.1)
0.005
45 (14.2) 41 (9.8)
Reference 0.66 (0.42–1.0)
0.07
115 (36.2) 201 (48.0)
Reference 1.63 (1.2–2.2)
0.001
294 (54.5) 101 (55.2) 6 (40.0)
Reference 1.0 (0.73–1.4) 0.56 (0.20–1.6)
0.88 0.27
59 (10.9) 21 (11.5) 6 (40.0)
Reference 1.1 (0.62–1.8) 5.4 (1.9–15.7)
0.84 0.002
237 (44.0) 71 (38.8) 8 (53.3)
Reference 0.81 (0.57–1.1) 1.5 (0.52–4.1)
0.22 0.47
33 (54.1) 142 (53.6) 226 (55.0)
0.97 (0.56–1.7) 0.95 (0.69–1.3) Reference
0.90 0.72
15 (25.6) 32 (12.1) 39 (9.5)
3.1 (1.6–6.1) 1.3 (0.80–2.2) Reference
0.001 0.29
33 (54.1) 95 (35.8) 188 (45.7)
1.4 (0.82–2.4) 0.66 (0.48–0.91 Reference)
0.22 0.01
30 (61.2) 50 (54.3) 57 (54.8) 264 (53.7)
1.4 (0.75–2.5) 1.0 (0.66–1.6) 1.1 (0.69–1.6) Reference
0.31 0.90 0.83
4 (8.2) 12 (13.0) 20 (19.2) 50 (10.2)
0.79 (0.27–2.3) 1.3 (0.68–2.6) 2.1 (1.2–3.7) Reference
0.66 0.41 0.01
22 (44.9) 51 (55.4) 40 (38.5) 203 (41.3)
1.2 (0.64–2.1) 1.8 (1.1–2.8) 0.89 (0.58–1.4) Reference
0.62 0.01 0.60
92 (49.7) 111 (60.7) 78 (51.3) 76 (61.8) 44 (46.8)
Reference 1.5 (1.0–2.3) 1.1 (0.69–1.6) 1.6 (1.0–2.6) 0.89 (0.54–1.5)
13 (7.1) 24 (13.1) 21 (31.8) 12 (9.8) 16 (17.0)
Reference 1.9 (0.98–4.1) 2.1 (1.0–4.4) 1.4 (0.63–3.2) 2.7 (1.3–5.9)
76 (41.3) 80 (43.7) 68 (44.7) 48 (39.0) 44 (46.8)
Reference 1.1 (0.74–1.7) 1.2 (0.75–1.8) 0.92 (0.58–1.5) 1.3 (0.77–2.1)
0.04 0.77 0.04 0.65
0.06 0.04 0.39 0.01
0.61 0.50 0.72 0.36
Q4: Can epilepsy be cured? Q5: When seizure occurs, is it appropriate to put an object into the patient’s mouth to prevent tongue biting? Q6: Is drug treatment the only way to manage epilepsy?
Epilepsia, 49(4):564–572, 2008 doi: 10.1111/j.1528-1167.2007.01433.x
568 A. Awad and F. Sarkhoo Table 2. Outcomes (“NO” responses) to questions about attitudes toward epilepsy, differences by sociodemographic variables (n = 737) Q1 Respondent characteristic Gender Male Female Age (years) 20–39 40–59 60–70 Education (years) Low (0–6) Intermediate (7–12) High (>12) Employment Housewives Students Unemployed Employed Residence Capital Hawalli Al-Farwaniyah Al-Ahmadi Al-Jahra
n (%) 619 (84.0)
OR (95% CI)
Q2 pvalue
n (%) 533 (72.4)
OR (95% CI)
Q3 pvalue
n (%) 209 (28.4)
OR (95% CI)
pvalue
270 (84.9) Reference 349 (83.3) 0.89 (0.60–1.3)
0.56
214 (67.5) Reference 319 (76.1) 1.5 (1.1–2.1)
0.01
91 (28.6) Reference 118 (28.2) 0.98 (0.71–1.4)
0.89
455 (84.4) Reference 152 (83.1) 0.91 (0.58–1.4) 12 (80.0) 0.74 (0.20–2.7)
0.67 0.64
393 (73.0) Reference 131 (71.6) 0.93 (0.64–1.4) 9 (60.0) 0.55 (0.20– 1.6)
0.70 0.27
158 (29.3) Reference 47 (25.7) 0.83 (0.57–1.2) 4 (26.7) 0.88 (0.28–2.8)
0.35 0.82
42 (68.9) 0.27 (0.15–0.51) 211 (79.6) 0.48 (0.31–0.74 366 (89.1) Reference) 42 (85.7) 69 (75.0) 82 (78.8) 426 (86.6)
0.93 (0.40–2.2) 0.47 (0.27–0.80) 0.58 (0.34–0.99) Reference
157 (84.9) 156 (85.2) 132 (86.8) 104 (84.6) 70 (74.5)
Reference 1.03 (0.58–1.8) 1.2 (0.63–2.2) 0.98 (0.52–1.8) 0.52 (0.28–0.96)
< 0.001 38 (62.3) 0.39 (0.22–0.70) 0.001 164 (61.9) 0.39 (0.27–0.55) 331 (80.7) Reference 0.87 0.005 0.05
0.92 0.61 0.94 0.04
37 (75.5) 58 (63.0) 71 (68.3) 367 (74.7)
1.0 (0.53–2.1) 0.58 (0.36–0.92) 0.73 (0.46–1.2) Reference
147 (79.8) 141 (77.0) 117 (77.0) 77 (62.6) 51 (54.3)
Reference 0.85 (0.51–1.4) 0.84 (0.50–1.4) 0.42 (0.25–0.70) 0.30 (0.17–0.51)
0.001 < 0.001 0.91 0.02 0.18
0.51 0.52 0.001 < 0.001
14 (23.0) 0.83 (0.44–1.6) 86 (32.5) 1.3 (0.95–1.9) 109 (26.5) Reference
0.55 0.09
12 (24.5) 30 (32.6) 28 (26.9) 139 (28.3)
0.82 (0.42–1.6) 1.2 (0.76–1.9) 0.94 (0.58–1.5) Reference
0.58 0.40 0.78
63 (34.1) 55 (30.1) 39 (25.7) 29 (23.6) 23 (24.5)
Reference 0.83 (0.54–1.3) 0.67 (0.42–1.1) 0.60 (0.36–1.0) 0.63 (0.36–1.1)
0.41 0.09 0.05 0.10
Q1: Would you object to shake hands with a person with epilepsy? Q2: Would you object to your child playing with a child with epilepsy? Q3: Would you object to your son or daughter marrying a person with epilepsy? Q4 Respondent characteristic Gender Male Female Age (years) 20–39 40–59 60–70 Education (years) Low (0–6) Intermediate (7–12) High (>12) Employment Housewives Students Unemployed Employed Residence Capital Hawalli Al-Farwaniyah Al-Ahmadi Al-Jahra
n (%) 415 (56.3)
OR (95% CI)
Q5 pvalue
n (%) 554 (75.2)
OR (95% CI)
Q6 p value
n (%) 333 (45.2)
OR (95% CI)
pvalue
158 (49.7) Reference 257 (61.3) 1.61 (1.2–2.2)
239 (75.2) Reference 0.002 315 (75.2) 1.0 (0.71–1.4)
0.99
147 (46.2) Reference 186 (44.4) 0.93 (0.69–1.2)
0.62
302 (56.0) Reference 106 (57.9) 1.1 (0.77–1.5) 7 (46.7) 0.69 (0.25–1.9)
0.66 0.47
398 (73.8) Reference 145 (79.2) 1.4 (0.90–2.0) 11 (73.3) 0.97 (0.31–3.1)
0.15 0.97
237 (44.0) Reference 88 (48.1) 1.2 (0.84–1.7) 8 (53.3) 1.5 (0.52–4.1)
0.43 0.47
39 (63.9) 1.4 (0.81–2.5) 147 (55.5) 0.99 (0.73–1.4) 229 (55.7) Reference
0.23 0.95
39 (63.9) 0.44 (0.25–0.77) 185 (69.8) 0.57 (0.40–0.81) 330 (80.3) Reference
0.005 41 (67.2) 2.9 (1.6–5.1) 0.002 121 (45.7) 1.2 (0.86–1.6) 171 (41.6) Reference
< 0.001 0.30
34 (69.4) 2.0 (1.1–3.7) 62 (67.4) 1.8 (1.1–2.9) 57 (54.8) 1.1 (0.70–1.6) 262 (53.3) Reference
0.03 0.01 0.77
35 (71.4) 0.77 (0.40–1.5) 62 (67.4) 0.64 (0.39–1.0) 81 (77.9) 1.1 (0.65–1.8) 376 (76.4) Reference
0.44 0.07 0.75
0.79 < 0.001 0.04
104 (56.2) Reference 92 (50.3) 0.79 (0.52–1.2) 85 (55.9) 0.99 (0.64–1.5) 75 (61.0) 1.2 (0.77–1.9) 59 (62.8) 1.3 (0.79–2.2)
0.25 0.96 0.41 0.30
143 (77.3) 141 (77.0) 115 (75.7) 92 (74.8) 63 (67.0)
Reference 0.99 (0.61–1.6) 0.91 (0.55–1.5) 0.87 (0.51–1.5) 0.60 (0.34–1.0)
0.96 0.72 0.61 0.07
21 (42.9) 1.1 (0.60–2.0) 57 (62.0) 2.4 (1.5–3.7) 54 (51.9) 1.6 (1.0–2.4) 201 (40.9) Reference 89 (48.1) 80 (43.7) 63 (41.4) 52 (42.3) 49 (52.1)
Reference 0.84 (0.56–1.3) 0.76 (0.50–1.2) 0.79 (0.50–1.3) 1.2 (0.72–1.9)
0.40 0.22 0.32 0.53
Q4: Should women with epilepsy have their own children? Q5: Would you object to working with a person with epilepsy? Q6: If you are an employer, would you hire a person with epilepsy? Continued.
Epilepsia, 49(4):564–572, 2008 doi: 10.1111/j.1528-1167.2007.01433.x
569 Public Attitudes Toward Epilepsy in Kuwait Table 2. continued. Q7 Respondent characteristic Gender Male Female Age (years) 20–39 40–59 60–70 Education (years) Low (0–6) Intermediate (7–12) High (>12) Employment Housewives Students Unemployed Employed Residence Capital Hawalli Al-Farwaniyah Al-Ahmadi Al-Jahra
n (%) 473 (64.2)
OR (95% CI)
Q8 OR (95% CI)
pvalue
183 (57.5) Reference 290 (69.2) 1.7 (1.2–2.2)
226 (71.1) Reference 0.001 309 (73.7) 1.1 (0.83–1.6)
0.42
76 (23.9) Reference 136 (32.5) 1.53 (1.1–2.1)
0.01
349 (64.7) Reference 116 (63.4) 0.94 (0.67–1.3) 8 (53.3) 0.62 (0.22–1.7)
0.74 0.37
0.33 0.55
142 (26.3) Reference 64 (35.0) 1.5 (1.1–2.2) 6 (40.0) 1.9 (0.65–5.3)
0.03 0.25
29 (47.5) 0.37 (0.22–0.65) 153 (57.7) 0.56 (0.41–0.78) 291 (70.8) Reference 32 (65.3) 55 (59.8) 63 (60.6) 323 (65.7)
0.99 (0.53–1.8) 0.78 (0.49–1.2) 0.80 (0.52–1.2) Reference
116 (62.7) Reference 129 (70.5) 1.4 (0.92–2.2) 102 (67.1) 1.2 (0.77–1.9) 77 (62.6) 1.0 (0.62–1.6) 49 (52.1) 0.65 (0.39–1.1)
pvalue
n (%) 535 (72.6)
Q9
397 (73.7) Reference 128 (69.9) 0.83 (0.58–1.2) 10 (66.7) 0.72 (0.24–2.1)
< 0.001 33 (54.1) 0.33 (0.19–0.57) 0.001 180 (67.9) 0.59 (0.41–0.83) 322 (78.3) Reference 0.96 0.28 0.32
0.11 0.40 0.99 0.09
36 (73.5) 56 (60.9) 71 (68.3) 372 (75.6)
0.89 (0.46–1.7) 0.50 (0.32–0.80) 0.69 (0.44–1.1) Reference
153 (82.7) 136 (74.3) 112 (73.7) 86 (69.9) 48 (51.1)
Reference 0.61 (0.37–1.0) 0.59 (0.35–0.99) 0.49 (0.28–0.84) 0.22 (0.13–0.38)
< 0.001 0.003
0.74 0.004 0.12
0.05 0.05 0.009 < 0.001
212 (28.8)
OR (95% CI)
25 (41.0) 2.6 (1.5–4.5) 99 (37.4) 2.2 (1.6–3.1) 88 (21.4) Reference 19 (38.8) 47 (51.1) 31 (29.8) 115 (23.4)
2.1 (1.1–3.8) 3.4 (2.2–5.4) 1.4 (0.87–2.2) Reference
46 (24.9) 47 (25.7) 32 (21.1) 40 (32.5) 47 (50.0)
Reference 1.0 (0.65–1.7) 0.81 (0.48–1.3) 1.5 (0.88–2.4) 3.0 (1.8–5.1)
pvalue
0.001 < 0.001 0.02 < 0.001 0.17
0.86 0.41 0.14 < 0.001
Q7: If you are an employer, would you terminate the employment of persons with epilepsy, if a seizure occurred during work because of unreported epilepsy? Q8: If one of your family members had epilepsy, would you want to conceal this information from others? Q9: Would you help someone with an epileptic seizure?
formal education about epilepsy has been inadequate in Kuwait. About half of the respondents (46%) believed that epilepsy was primarily a hereditary disease, which is consistent with that reported in South Korea (Choi-Kwon et al., 2004) and Hungary (Mirnics et al., 2001). This belief may have been gained from their understanding that epilepsy is more prevalent among members of the same family. The percentages of respondents who agreed that “all epileptic fits manifest symptoms of generalized tonic–clonic seizure” (60.4%) and those who agreed that epilepsy is not a curable disease (54.4%) were comparable with those reported in Hong Kong (Fong & Chung, 2002). The belief that “all epileptic fits manifest symptoms of generalized tonic–clonic seizure” was found to be significantly associated with the negative attitudes toward epileptic patients in relation to playing with, marrying, working with, employing, and offering help to epileptic patients with seizure (p < 0.05). The false belief that epilepsy cannot be treated was a significant contributive factor to the negative attitudes “objects to marriage” and “should not have children.” Around 88% of the respondents indicated the appropriateness of putting an object into the patient’s mouth to prevent tongue biting when seizure occurs, which is higher
than that in Taiwan (Chung et al., 1995) and Hong Kong (Fong & Chung, 2002). Most of them obtained this information from the mass media, particularly TV programs. Regrettably, this misconception is still publicized by the mass media. Almost 43% of the respondents believed that there are different ways to manage epilepsy. For example, most of the people who lived in Al-Jahra believed that epilepsy results from being possessed by an evil spirit that can only be ousted by certain rituals such as placing a red-hot metallic rod on the patient’s back and the recitation of Al-Qura´an Alkareem. Those ideas have not been demonstrated yet in studies conducted worldwide. Others reported the use of herbal medicines, electrical therapy, and the avoidance of stress as other ways to manage epilepsy. Overall, the respondents’ attitudes toward epilepsy were far more negative than those reported in the Western countries and some of the Asian countries (Caveness et al., 1980; Canger & Cornaggia, 1985; Jensen & Dam, 1992; Bener et al., 1998; Mirnics et al., 2001; Fong & Chung, 2002; Choi-Kwon et al., 2004). The objection to association with an epileptic child was reported by almost 28% of the study participants, and this was mainly due to the worry that their children may be harmed by the epileptic child during the seizure attack. About three quarters of the respondents objected to marrying persons with epilepsy, Epilepsia, 49(4):564–572, 2008 doi: 10.1111/j.1528-1167.2007.01433.x
570 A. Awad and F. Sarkhoo Table 3. Outcomes (“NO” responses) to questions in relation to myths and misunderstandings regarding epilepsy, differences by sociodemographic variables (n = 737) Q1 Respondent characteristic Gender Male Female Age (years) 20–39 40–59 60–70 Education (years) Low (0–6) Intermediate (7–12) High (>12) Employment Housewives Students Unemployed Employed Residence Capital Hawalli Al-Farwaniyah Al-Ahmadi Al-Jahra
n (%) 367 (49.8)
Q2
OR (95% CI)
pvalue
152 (47.8) Reference 215 (51.3) 1.2 (0.86–1.5) 269 (49.9) Reference 90 (49.2) 0.97 (0.70–1.4) 8 (53.3) 1.1 (0.41–3.2)
n (%) 556 (75.4)
Q3
OR (95% CI)
pvalue
OR (95% CI)
pvalue
0.35
235 (73.9) Reference 321 (76.6) 1.2 (0.83–1.6)
0.40
166 (52.2) Reference 246 (58.7) 1.3 (0.97–1.7)
0.08
0.87 0.79
425 (78.8) Reference 124 (67.8) 0.56 (0.39–0.82) 7 (46.7) 0.24 (0.08–0.66)
306 (56.8) Reference 0.003 99 (54.1) 0.90 (0.64–1.3) 0.006 7 (46.7) 0.67 (0.24–1.9)
412 (55.9)
27 (44.3) 0.75 (0.43–1.3) 128 (48.3) 0.88 (0.64–1.2) 212 (51.6) Reference
0.29 0.41
22 (36.1) 0.11 (0.06–0.20) 192 (72.5) 0.53 (0.37–0.77) 342 (83.2) Reference
< 0.001 29 (47.5) 0.52 (0.30–0.90) 0.001 122 (46.0) 0.49 (0.36–0.67) 261 (63.5) Reference
25 (51.0) 51 (55.4) 38 (36.5) 253 (51.4)
0.98 (0.55–1.8) 1.2 (0.75–1.8) 0.54 (0.35–0.84) Reference
0.96 0.48 0.006
42 (85.7) 53 (57.6) 56 (53.8) 405 (82.3)
1.3 (0.56–3.0) 0.29 (0.18–0.47) 0.25 (0.16–0.39) Reference
0.55 < 0.001 < 0.001
97 (52.4) 85 (46.4) 74 (48.7) 61 (49.6) 50 (53.2)
Reference 0.79 (0.52–1.2) 0.86 (0.56–1.3) 0.89 (0.57–1.4) 1.0 (0.63–1.7)
151 (81.6) 155 (84.7) 119 (78.3) 86 (69.9) 45 (47.9)
Reference 1.2 (0.72–2.2) 0.81 (0.48–1.4) 0.52 (0.31–0.89) 0.21 (0.12–0.36)
117 (63.2) Reference 0.43 112 (61.2) 0.92 (0.60–1.4) 0.45 90 (59.2) 0.84 (0.54–1.3) 0.02 51 (41.5) 0.41 (0.26–0.66) < 0.001 42 (44.7) 0.47 (0.28–0.78)
0.25 0.49 0.63 0.90
30 (61.2) 44 (47.8) 50 (48.1) 288 (58.5)
1.1 (0.61–2.0) 0.65 (0.42–1.0) 0.66 (0.43–1.0) Reference
0.53 0.44 0.02 < 0.001 0.72 0.06 0.05
0.69 0.45 < 0.001 0.003
Q1: Is epilepsy equivalent to psychiatric disorders? Q2: Is epilepsy related to possession by an evil spirit? Q3: Generally speaking, should children with epilepsy study in a special school? Q4 Respondent characteristic Gender Male Female Age (years) 20–39 40–59 60–70 Education (years) Low (0–6) Intermediate (7–12) High (>12) Employment Housewives Students Unemployed Employed Residence Capital Hawalli Al-Farwaniyah Al-Ahmadi Al-Jahra
n (%) 516 (70.0)
OR (95% CI)
Q5 pvalue
n (%) 481 (65.3)
Q6
OR (95% CI)
pvalue
203 (63.8) Reference 313 (74.7) 1.7 (1.2–2.3)
212 (66.7) Reference 0.001 269 (64.2) 0.9 (0.66–1.2)
0.49
389 (72.2) Reference 120 (65.6) 0.73 (0.51–1.1) 7 (46.7) 0.34 (0.12–0.95)
0.09 0.04
371 (68.8) Reference 104 (56.8) 0.59 (0.42–0.84) 6 (40.0) 0.30 (0.11–0.86)
OR (95% CI)
pvalue
280 (88.1) Reference 377 (90.0) 1.2 (0.77–1.9)
0.41
657 (89.1)
485 (90.0) Reference 0.003 161 (88.0) 0.82 (0.48–1.4) 0.03 11 (73.3) 0.31 (0.10–1.0)
0.45 0.05
24 (39.3) 0.15 (0.09–0.27) 159 (60.0) 0.35 (0.25–0.50) 333 (81.0) Reference
< 0.001 28 (45.9) 0.35 (0.21–0.61) < 0.001 163 (61.5) 0.67 (0.48–0.92) 290 (70.6) Reference
< 0.001 45 (73.8) 0.15 (0.07–0.31) 0.02 222 (83.8) 0.28 (0.16–0.48) 390 (94.9) Reference
< 0.001 < 0.001
37 (75.5) 58 (63.0) 50 (48.1) 371 (75.4)
1.0 (0.51–2.0) 0.56 (0.35–0.89) 0.30 (0.20–0.47) Reference
0.99 0.02 < 0.001
0.80 47 (95.9) < 0.001 72 (78.3) 0.09 87 (83.7) 451 (91.7)
2.1 (0.50–9.1) 0.33 (0.18–0.59) 0.47 (0.25–0.86) Reference
0.31 < 0.001 0.01
136 (73.5) 139 (76.0) 112 (73.7) 82 (66.7) 47 (50.0)
Reference 1.1 (0.71–1.8) 1.0 (0.62–1.6) 0.72 (0.44–1.2) 0.36 (0.21–0.61)
136 (73.5) Reference 0.59 133 (72.7) 0.96 (0.61–1.5) 0.97 93 (61.2) 0.57 (0.36–0.90) 0.20 70 (56.9) 0.48 (0.29–0.77) < 0.001 49 (52.1) 0.39 (0.23–0.66)
175 (94.6) 167 (91.3) 138 (90.8) 107 (87.0) 70 (74.5)
Reference 0.60 (0.26–1.4) 0.56 (0.24–1.3) 0.38 (0.17–0.87) 0.17 (0.08–0.37)
33 (67.3) 45 (48.9) 63 (60.6) 340 (69.1)
0.92 (0.49–1.7) 0.43 (0.27–0.67) 0.69 (0.44–1.1) Reference
0.86 0.02 0.003 < 0.001
Q4: Generally speaking, is the IQ of persons with epilepsy lower than those of normal population? Q5: Can prolonged use of computer cause epilepsy? Q6: Do you agree that persons with epilepsy are dangerous persons?
Epilepsia, 49(4):564–572, 2008 doi: 10.1111/j.1528-1167.2007.01433.x
0.22 0.18 0.02 < 0.001
571 Public Attitudes Toward Epilepsy in Kuwait and this negative attitude appears to be deeply rooted in Kuwaiti society, reflecting people’s concern about their offspring believing epilepsy to be an inherited disease. It is unfortunate that epilepsy is still a reason for annulling marriages in some parts of the world (Livanainen et al., 1980). About half of the respondents (45.2%) indicated their negative attitude toward employment, with some expressing the view that epileptic patients should not be allowed to work in labor occupations. Around 28% of respondents were reluctant to disclose the diagnosis if their family member had epilepsy, because they “felt ashamed for their families,” were “afraid of being discriminated,” or were “more reluctant to discuss their personal and family problems in public.” These findings have shown that despite the fact that medical science has proved that epilepsy arises from a transient dysfunction in the brain, fear and ignorance still lead to discrimination and feelings of shame. The respondents’ attitude toward persons with epilepsy has reflected their understanding of epilepsy and that the negative image and attitude against epilepsy do prevail among the Kuwaiti people. The current findings have shown that the misconception that epilepsy is equivalent to psychiatric disorders is prevalent in Kuwait compared to Western countries (Caveness et al., 1980; Canger & Cornaggia, 1985; Jensen & Dam, 1992). Unfortunately, epilepsy in the public mind has been strongly associated with mental illness and cognitive disorders that unfairly affect many individuals with epilepsy (Villanueva-Gomez, 1998). In this study, structured face-to-face interview was used to achieve a better response rate. Nevertheless, this may contribute to a potential limitation of this survey, which is the social desirability and that respondents may have offered favorable answers (nonresponse bias). In this respect, this study had no way of verifying respondents’ claims, which were taken at face value. In conclusion, this survey has demonstrated that epilepsy is a well-known disease in Kuwait and that negative attitudes toward epilepsy do prevail in Kuwait. The majority of the negative attitudes were significantly associated with the misunderstanding of epilepsy. Continuing effective educational interventions would be needed in order to improve the appropriate understanding of epilepsy and to ameliorate the social discrimination and misconceptions against epileptic patients that were revealed in the current study.
ACKNOWLEDGMENTS We are tremendously grateful to Dr. Mansour Sarkhoo, Dr. Nabeel AlSaffar, and those who participated in the data collection. Conflict of interest: Authors have no conflicts of interest with regard to the data produced. 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.
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