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General public awareness, perceptions, and attitudes with respect to epilepsy in the Akwaya Health District, South-West Region, Cameroon
Epilepsy & Behavior 15 (2009) 179–185
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General public awareness, perceptions, and attitudes with respect to epilepsy in the Akwaya Health District, South-West Region, Cameroon Alfred K. Njamnshi a,f,*, Earnest N. Tabah b, Faustin N. Yepnjio c, Samuel A. Angwafor d, Fidele Dema e, Julius Y. Fonsah f, Callixte T. Kuate f, Vincent de Paul Djientcheu g, Fru Angwafo III h, Walinjom F.T. Muna a a
Department of Internal Medicine and Specialties, Faculty of Medicine and Biomedical Sciences, University of Yaounde I, Cameroon Neurology Department, Central Hospital Yaounde and National Leprosy and Buruli Ulcer Control Program, Department of Disease Control, Ministry of Public Health, Yaounde, Cameroon c Neurology Department, Central Hospital Yaounde, Cameroon and Fann University Hospital Centre, Dakar, Senegal d Neurology Department, Central Hospital Yaounde and Batibo District Hospital, North West Region, Cameroon e Neurology Department, Central Hospital Yaounde and Sa’a District Hospital, Centre Region, Cameroon f Neurology Department, Central Hospital Yaounde, Cameroon g Department of Surgery (Neurosurgery) FMBS, University of Yaounde I, Cameroon h Department of Surgery, FMBS, University of Yaounde I, Cameroon b
a r t i c l e
i n f o
Article history: Received 23 December 2008 Revised 7 March 2009 Accepted 13 March 2009 Available online 25 April 2009 Keywords: Epilepsy Awareness Attitudes Beliefs Practices Akwaya Cameroon
a b s t r a c t Background: This study was part of a series mandated by the Ministry of Public Health’s National Epilepsy Control Program to obtain baseline data for a community–adapted epilepsy education program. Methods: We conducted 387 face-to-face interviews with subjects without epilepsy aged 15 years and above in 12 villages of the Akwaya Health District, Cameroon. Results: Most respondents (97.9%) had heard or read about epilepsy, 90.2% knew someone with epilepsy, and 90.4% had witnessed a seizure. About 51.4% would object to association with people with epilepsy (PWE), 68.7% would object to marriage to PWE, while 41.6% would offer them equal employment. For treatment, 30.2% would suggest going to a traditional healer or witch doctor, while 3.9% would not recommend any treatment at all. Predictors of attitudes were male gender, low or no level of education, having children, knowledge of the cause of epilepsy, and beliefs that epilepsy is contagious or is a form of insanity. Conclusion: The high level of public awareness on epilepsy in the Akwaya Health District may suggest a high prevalence. This contrasts with prevailing negative attitudes. Our data provide new evidence for our hypothesis of regional variation in the determinants of epilepsy stigma in Cameroon. Ó 2009 Elsevier Inc. All rights reserved.
1. Introduction In many communities around the world and especially in Africa, epilepsy is a highly stigmatizing condition, characterized by recurrent seizures. Seizures result from a sudden and recurrent excessive disorderly discharge of cerebral neurons. They are unpredictable, uncontrollable, and distressful to the sufferer, and thus arouse fear [1]. The perception of epilepsy as due to witchcraft, possession of evil spirits, punishment for wrong doing, some form of insanity, and other misconceptions [2–4] is to blame for social discrimination and stigma against people with epilepsy (PWE) [5].
* Corresponding author. Address: Central Hospital Yaounde, P.O. Box 25625 Yaounde, Cameroon. Fax: +237 22 23 04 68. E-mail addresses: [email protected] (A.K. Njamnshi), [email protected] (E.N. Tabah), [email protected] (W.F.T. Muna). 1525-5050/$ - see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2009.03.013
Discrimination and stigma against PWE compromise their treatment and quality of life [6]. Misconceptions about the cause of epilepsy have influenced the care-seeking behavior of PWE, with a large proportion of them resorting to complementary and alternative medicine for treatment [4,7]. In Cameroon, epilepsy is a public health problem with prevalence rates as high as 6% in some endemic areas [8]. Cameroon has a rich and diverse culture, counting over 250 ethnic groups [9], providing an ideal setting for possible variations in the perceptions of epilepsy. Each ethnic group in Cameroon has a different name for epilepsy, the meanings of which instill fear, resulting in prejudice toward PWE. The magnitude of negative attitudes toward PWE has not been well explored in Cameroon. To our knowledge, few studies [10–12] have been carried out in this respect in Cameroon. The current study was designed as part of a nationwide survey within the framework of the National Epilepsy Control Program of the Ministry of Public Health to investigate the influence of Cameroon’s rich
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cultural and ethnic diversity on the perceptions and attitudes concerning epilepsy. The goal was to obtain baseline data on awareness, attitudes, and practices, to inform the development of an epilepsy educational program, targeted at the general population. 2. Methods 2.1. Respondents A survey of a sample of 387 adults resident in Akwaya health district was carried out as part of national KAP study on epilepsy in July 2008. We excluded persons below 15 years, persons with previous or current seizures, mentally ill people, and medical professionals. 2.2. Survey setting This community-based survey was carried out in Akwaya Health District, of the South-West Region of the Republic of Cameroon (See maps in Figs. 1 and 2). Akwaya health district has a population of 77,773 inhabitants, living in about 98 communities, grouped into four health areas that make up the district. There are eight major tribes in the district and the majority of the inhabitants are peasant farmers. The health district has one hospital (District Hospital) and five functional health centers and many traditional healers. The Akwaya Health District is the most enclave health district Region of Cameroon, with a harsh topography, very poor road network, making accessibility to health facilities a real challenge to
Fig. 2. Map of Akwaya Health District.
the population. The inhabitants of this rural district are a very hard-working people, occupied essentially by peasant farming and hunting. 2.3. Sampling method Four villages were selected from each of these three health areas in Akwaya Health District: Akwaya health area (Akwaya, Manko, Ngali and Kajinga villages), Akwa health area (Atolo, Tinta, Bachama, Makumunu), and Bagundu health area (Ballin, Bakinjaw, Bagundu and Enjawbaw villages). The fourth health area was left out because of geographical inaccessibility. Using the random route method [13], 35 households were selected from each of these villages. Within each selected household, one person fulfilling the inclusion criteria was selected for the interview. 2.4. Data collection Data were collected using a 12-item questionnaire in English, designed to evaluate knowledge, attitudes, and practice toward epilepsy. The questionnaire was the same used by our study group in the Batibo Health District, Cameroon [10]. Five interviewers with at least a General Certificate of Education, Advanced Level, and fluent in at least one of the local languages were recruited and trained for 3 days on the administration of the questionnaire by one of the co-authors (E.N.T.). The training included, among other things, the full understanding of and appropriate translation of the questionnaire into the major local languages (Olity, Becheve, Assumbo, Anyang, Ogal, and Fulbe) and field testing of the questionnaire by these interviewers. After the training, the interviewers were assigned to selected villages where they conducted face-to-face interviews with the subjects. 2.5. Ethical issues
Fig. 1. Map of Cameroon showing the 10 administrative regions and Akwaya Health District. Source: Adapted from Wikipedia free encyclopedia (http://en.wikipedia.org/wiki/Image: Regions (Provinces) of Cameroon EN.svg).
Ethical clearance was obtained from the National Ethics Committee and the series of studies was mandated by the Ministry of
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Public Health of Cameroon within the framework of the National Epilepsy Program. All participants gave an informed verbal consent. 2.6. Data analysis Data management and statistical analysis were done using SPSS for Windows version 15.0 statistical software. Chi-square tests were used to examine the association between responses and each demographic variable in a univariate analysis. We also used a chisquare test to examine the association between responses to questions on attitudes and those on awareness and understanding. The significance level was set at P < 0.05. After performing the orienting univariate analyses, we did a logistic regression to analyze predictors for negative attitudes. 3. Results 3.1. Characteristics of study sample Three hundred and eighty seven (387) out of the 420 invited subjects accepted to be interviewed, giving a response rate of 92.14%. The mean age of the participants was 34.6 ± 1.9 years, for an interquartile age range of 20 years (Q1, 23 years; and Q3, 43 years). The male/female sex ratio was 1.2/1. The main occupation was peasant farming. The majority of our subjects were Christians (91.7%), and 59.4% of them were or had been married. About 27% of the sample had no formal education while 48 and 25% had primary and secondary or higher levels of education, respectively.
3.2. Familiarity with epilepsy (Table 1) There was a high level of familiarity with epilepsy among our participants, 97.9% had heard or read about epilepsy, 90.2% knew someone with epilepsy, and 90.4% had witnessed a seizure. In a univariate analysis, familiarity with epilepsy was associated with advanced age, being married, having a child, being a civil servant, or being a Christian or animist. The most common symptoms of epilepsy (Table 3) cited by the participants included foaming, convulsions, loss of consciousness, change of behavior, and screaming. Nevertheless, 13.4% of the participants did not know any form of manifestation of epilepsy. 3.3. Attitudes, understanding, and practices with respect to epilepsy (Table 2) Of the 387 participants, 51.4% would object to their children associating with PWE, 68.7% would object to marrying someone with epilepsy, while 41.6% would offer equal employment to PWE. In the univariate analysis, all the three negative attitudes were associated with a low or no level of education, male gender, belonging to the Islamic religion, and having more than five children. While age and marital status did not seem to influence attitudes, more favorable attitudes toward PWE were observed among civil servants. Regarding the questions on the understanding of epilepsy, 43.7% of the participants knew at least one correct cause of epilepsy, meanwhile 45.2 and 52.5%, respectively, thought that epilepsy was contagious or a form of insanity. Male participants, those with a secondary or higher level of education, and civil servants were more likely to know the cause of epilepsy. None of
Table 1 Responses to Questions on Familiarity with epilepsy by demographic variables. No of participants
Q1
Q2
Q3
Total
387
97.9
90.2
90.4
Age 15–29 30–49 P50
173 177 37
96.5 99.4 97.3
P = 0.12
84.4 95.5 91.9
P = 0.002
86.1 94.4 91.9
P = 0.03
Gender Male Female
209 178
98.1 97.8
P = 0.82
90.4 89.9
P = 0.86
90.9 89.9
P = 0.73
Religion Animist Catholic Muslim Protestant
21 194 11 161
100 98.5 90.9 97.9
P = 0.32
90.5 91.2 36.4 92.5
Marital status Single Married Widowed or divorced
157 206 24
94.9 100 100
P = 0.003
87.3 91.7 95.8
P = 0.229
86 93.7 91.7
P = 0.046
No. of offspring 0 1–5 >5
116 186 85
94 99.5 100
P = 0.002
84.5 91.3 95.3
P = 0.029
82.8 91.9 97.6
P = 0.001
Level of education None Primary Secondary or higher
105 185 97
98.1 97.8 97.9
P = 0.989
88.6 88.6 94.8
P = 0.204
90.5 90.8 89.7
P = 0.955
Occupation Agriculture Civil servant Pupil/student Other
239 20 70 58
98.7 100 95.7 96.6
P = 0.327
93.7 100 88.6 74.1
Figures under question columns represent percentages of participants with a ‘‘Yes” response to the question. Q1: Have you heard or read about the disease called ‘‘epilepsy” or convulsive seizure? Q2: Do you know anyone who has or had epilepsy? Q3: Have you ever seen someone who was having a seizure?
P < 0.001
P < 0.001
90.5 92.3 54.5 90.7
93.7 100 85.7 79.3
P = 0.001
P = 0.002
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Table 2 Responses to questions of understanding and attitudes towards epilepsy by demographic variables. No. of participants
Q4
Q5
Q6
Q7
Q8
Q10
68.7
41.6
52.5
43.7
45.2
Total
387
51.4
Age 15–29 30–49 P50
173 177 37
53.2 49.7 51.4
P = 0.811
68.2 67.2 78.4
P = 0.405
45.1 37.9 43.2
P = 0.381
52.0 52.0 56.8
P = 0.859
45.7 43.5 35.1
P = 0.502
49.7 42.4 37.8
P = 0.246
Gender Male Female
209 178
59.3 42.1
P = 0.001
75.6 60.7
P = 0.002
38.8 44.9
P = 0.218
50.2 55.1
P = 0.344
49.3 37.1
P = 0.016
43.1 45.2
P = 0.355
Religion Animist Catholic Muslim Protestant
21 194 11 161
57.1 54.1 81.8 45.3
30.0 43.3 27.3 46.9
P = 0.331
71.4 44.3 36.4 43.5
P = 0.092
Marital status Single Married Widowed or divorced
157 206 24
52.9 49.5 58.3
P = 0.641
63.7 71.4 79.2
No. of offspring 0 1–5 >5
116 186 85
51.7 50.5 52.9
P = 0.932
62.1 67.2 81.2
Level of Education None Primary Secondary or higher
105 185 97
44.8 64.3 34.0
Occupation Agriculture Civil servant Pupil/student Other
239 20 70 58
53.1 15.0 52.9 55.2
P = 0.054
P < 0.001
P = 0.010
42.9 74.7 90.9 63.4
71.4 75.7 52.6 74.5 45.0 62.9 60.3
P = 0.002
P = 0.155
47.6 42.8 0 42.2
P = 0.006
57.1 51.0 9.1 56.5
P = 0.021
42.7 41.3 37.5
P = 0.882
47.8 54.4 66.7
P = 0.163
45.2 45.1 20.8
P = 0.066
49.0 42.7 41.7
P = 0.456
P = 0.192
44.8 55.9 55.3
P = 0.144
42.2 44.6 43.5
P = 0.920
46.6 47.3 38.8
P = 0.403
P = 0.010
48.3 39.8 36.5
P = 0.171
52.4 57.3 43.3
P = 0.082
26.7 47.0 55.7
47.6 48.1 37.1
P = 0.179
P < 0.001
37.1 40.0 49.5 40.6 55.0 48.6 32.8
P = 0.183
57.3 40.0 39.7 50.0
P = 0.058
44.4 25.0 48.3 51.4
P = 0.197
P = 0.008
40.6 80.0 47.1 39.7
P < 0.001
P = 0.006
Figures under the question columns represent percentages of participants with a ’Yes’ response to the question. Q4: Would you object to your children associating with someone who sometimes had seizures? Q5: Would you object if your son or daughter wanted to marry a person who sometimes had seizures? Q6: Do you think people with epilepsy should be employed in jobs like others? Q7: Do you think epilepsy is a form of insanity? Q8: Knowledge of cause of epilepsy (rephrased): YES = hereditary, brain disease, birth defect, blood disorder; NO = witch craft, punishment, mental illness, don’t know. Q10: Do you think epilepsy is contagious?
the variables examined influenced the misconception that epilepsy is a form of insanity or is contagious. Table 3 shows the common causes of epilepsy cited by the participants and the modes of transmission for those who thought epilepsy was contagious. The main question on practice was to know what source of treatment the participants would recommend for any of their relatives if they had epilepsy. About 50% of participants would recommend a medical doctor, while 31% suggested a traditional healer, or a witch doctor. More details are given in Table 3. In a bid to study the relationship between understanding of epilepsy and attitudes (Table 4), we found out that those who thought epilepsy was a form of insanity or contagious were least likely to allow their children to associate with or offer equal employment to PWE. Unexpectedly, those who knew the cause of epilepsy were least likely to offer equal employment to PWE (P = 0.014) and were more likely to object marriage to PWE, although the difference was not significant. 3.4. Independent predictors of attitudes (Table 5) After controlling for confounders in a logistic regression analysis, the male gender, low or no level of education, and the belief that epilepsy is contagious were found to be independent predictors for two of the three attitudes examined (object to association or marriage with PWE). The belief that epilepsy is a form of insanity was, however, the only predictor for the attitude of offering equal employment to PWE.
4. Discussion 4.1. Familiarity Our results revealed a high level of familiarity with epilepsy in the Akwaya Health District. Compared with results of parallel studies in Cameroon by our research group [10–12,14] and elsewhere in the world (see Table 6, an adaptation from Njamnshi et al., 2008), the percentage of a ‘‘yes” responses to the question ‘‘Have you ever heard or read about epilepsy” in our study was among the highest in Cameroon and was higher than that in developed countries. Relatively similar proportions were obtained for those who knew someone with epilepsy (90.2%) and those who had witnessed a seizure (90.4%). As argued by Njamnshi et al. [10], the high level of familiarity with epilepsy among the participants of our study could suggest a high magnitude of active epilepsy in Akwaya Health District. A community-based survey on epilepsy will, however, be necessary to confirm this suspicion based on previous observation. In fact, as shown in Table 6, our group has observed that in Badissa, where the prevalence of epilepsy is one of the highest in Cameroon, up to 6% [8], the level of awareness is also very high as 100, 98.7, and 97.5% of participants had heard/read about epilepsy, knew a PWE, or had witnessed a seizure, respectively. The large proportion of our study sample with little or low level of education (75%) suggests that knowledge of epilepsy could mainly be attributed to close interpersonal relationships with PWE [1,15] and acquaintanceship with seizures [16]. As observed
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Table 5 Independent predictors of attitudes.
Cited causes of epilepsy Brain disease Witch craft Hereditary Punishment Mental illness Birth defect Blood disorder Don’t know
387 98 73 46 37 22 14 11 86
100% 25% 19% 12% 10% 6% 4% 3% 22%
Cited modes of transmission Saliva Blood contact Sexual intercourse Waste gas from patient Other Urine Food Don’t know
183 83 32 15 2 2 1 1 47
100% 45% 17% 8% 1% 1% 1% 1% 26%
Cited manifestations of epilepsy Convulsions Foams from the mouth Loss of consciousness Change in behavior Screaming Periods of amnesia Falls Don’t know
387 94 93 63 46 34 3 2 52
100% 24% 24% 16% 12% 9% 1% 1% 13%
Recommended sources of treatment Medical doctor Traditional healer Witch doctor Medical doctor and traditional healer Prayers No need to treat Other Don’t know
387 192 72 45 19 17 15 1 26
100% 50% 19% 12% 5% 4% 4% 0% 7%
in Batibo Health District [10] and New Zealand [1], the youngest age group (15–29) was the least familiar with epilepsy. The Akwaya Health District shares common boundaries with Batibo Health District to the east and with both districts having similar climate and vegetation and inhabitants leading almost the same mode of life. Epilepsy in both districts may have evolved in a similar manner in these districts, allowing the elderly to be more likely to be acquainted with PWE or seizures. Familiarity with PWE was
OR
95% CI Lower
Upper
Would object to children associating with PWE Male gender 2.33 No formal education 1.95 Primary education 3.75 Think epilepsy is a form of insanity 1.78
1.50 1.06 2.18 1.16
3.63 3.58 6.44 2.73
Would object to children marrying with PWE Male gender No formal education Primary education Have 1–5 offspring Have >5 offspring Think epilepsy is contagious
3.15 3.44 3.37 1.92 3.65 0.39
1.81 1.60 1.84 1.02 1.51 0.23
5.51 7.39 6.16 3.61 8.83 0.65
Would offer equal employment to PWE Think epilepsy is a form of insanity Know the cause of epilepsy
0.24 0.56
0.15 0.36
0.37 0.88
also associated with marriage, number of offspring, and occupation (civil servant). Probably, participants were mostly close relatives or associates of PWE. The Muslims were also the least likely to know someone with epilepsy or to have witnessed a seizure, although 90.9% had heard or read about epilepsy. In a predominantly Fulani (81.5%) and Muslim (89%) community in Kaduna-Nigeria, Kabir et al. found that out of a sample of 200 participants, 100% had heard or read about epilepsy but only 26.5% of them had witnessed a seizure. It would be interesting in a subsequent study targeting the Fulanis to find out what it is in their social structure that limits acquaintance with PWE. Fong and Hung [15] argued that the relatively lower proportion among the inhabitants of Hong Kong who know someone with epilepsy or who have witnessed a seizure is explained by their social culture, whereby PWE tend to limit their social circles and therefore would not be known by anyone outside the social circle of the patient. 4.2. Attitudes toward epilepsy A comparison of our data on attitudes with those obtained from parallel studies in Cameroon [10,11,14] and elsewhere in the world is shown in Table 6. Our sample population registered relatively
Table 4 Familiarity and understanding of epilepsy versus attitudes. No. of participants
Q4
Q5
Total No Yes
387 8 379
51.4 37.5 51.7
68.7 50.0 69.1
Know someone who has or had epilepsy
No Yes
38 349
60.5 50.4
P = 0.237
73.7 68.2
P = 0.488
36.8 42.1
P = 0.531
Have ever seen someone having seizures
No Yes
37 350
45.9 52.0
P = 0.483
62.2 69.4
P = 0.365
40.5 41.7
P = 0.890
Think epilepsy is a form of insanity
No Yes
184 203
43.5 58.6
66.8 70.4
P = 0.446
57.1 27.6
P < 0.001
Know the cause of epilepsy
No Yes
229 158
51.1 51.9
65.9 72.8
P = 0.153
46.7 34.2
P = 0.014
Think epilepsy is contagious
No Yes
212 175
46.2 57.7
75.9 60.0
P = 0.001
46.7 35.4
P = 0.025
Heard or read about epilepsy or convulsive seizure
P = 0.426
P = 0.003 P = 0.876
P = 0.024
Figures under the question columns represent percentages of participants with a ’Yes’ response to the question. Q4: Would you object to your children associating with someone who sometimes had seizures? Q5: Would you object if your son or daughter wanted to marry a person who sometimes had seizures? Q6: Do you think people with epilepsy should be employed in jobs like others?
Q6 P = 0.248
41.6 37.5 41.7
P = 0.812
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Table 6 Comparison of familiarity and attitudes with other studies in Cameroon and other countries. Country/year of publication
No. of participants
Q1
Q2
Q3
Q4
Q5
Q6
Cameroon 2009: Akwaya [present study] Cameroon 2009: Ebolowa and Sangmelima [11] Cameroon 2009: Batibo (Community) [10] Cameroon 2008: Batibo (Secondary students) [14] Cameroon 2008: Badissa [12] Senegal 2005 [23] Nigeria 2005 [2] Austria 2005 [17] Vietnam 2003 [16] New Zealand 2002 [1] Hong Kong 2002 [15] Hungary 2001[24] UAE 1998 [25] Ethiopia 1991 [21]
387 456 302 910 164 4500 200 2128 1000 400 1128 2000 892 1546*
97.9 99.6 99.3 95.0 100 NA 100 89 54.6 95 58.2 93.7 75 89
90.2 74.3 89.7 73.3 98.7 NA NA 40 45.5 73 18.9 51.9 NA NA
90.4 77.8 87.7 76.4 97.5 66 26.5 36 49.2 67 55 55.3 34 NA
51.4 26.8 42.7 25.4 26.2 40 NA 11 18.7 2 11.2 16 NA NA
68.7 40.3 75.8 64.2 32.3 68 NA 15 56.0 5 32.3 41.1 NA NA
41.6 55.3 35.1 58.6 55.5 NA NA 84 57.9 69 77.5 62 NA NA
Figures under question columns represent percentages of participants with a ‘‘Yes” response to the question. * Total No. of households.
very high negative attitudes compared with those reported in other studies. They had the highest proportion of refusing the association of their children with PWE (51.4%). The attitudes in our sample are similar to those in Batibo where 75.8% of the respondents would object to marriage with PWE and only 35% would offer equal employment to PWE. Compared to Badissa [12], Ebolowa, and Sagmelima [11] in the Southern Region of Cameroon, the attitudes in our sample were more negative. Although cross-cultural differences between regions could account for this, the lack of an awareness program on epilepsy in the Akwaya Health District, in particular, and many other regions of Cameroon in general, could be to blame. Such a program was piloted some 8 years ago in the Mbagassina administrative subdivision (to which the Badissa village belongs), with subsequent constitution of the Cameroon chapter of the International Bureau of Epilepsy in Mbagassina [4]. These factors, at least in part, could explain the relatively lower level of negative attitudes in Badissa [10] compared to Akwaya. Kim et al. have demonstrated that public education campaigns promote positive change of attitudes toward epilepsy and PWE [5]. The greatest negative attitude was the refusal of one’s children to marry PWE. Although in Africa marriage is considered an alliance between two families, it nevertheless remains a very personal and emotional issue. In Akwaya, epilepsy is thought to be a curse or punishment by witches or wizards for wrong committed by the patient or parents of the patient. Thus, marrying someone with epilepsy is tantamount to importing the curse or punishment into the family. In this community, people also hold the view that PWE lack concentration and ‘‘are not balanced” in their heads. For this reason, men with epilepsy would not be able to take care of their families. Similarly, women with epilepsy will not be able to raise children. Furthermore, there is a rare belief in this community that a seizure contaminates house food. Therefore, women with epilepsy, especially those with recurrent seizures, would be a source of starvation in the family. All these, coupled with the belief that epilepsy is a form of insanity or is hereditary, may explain why marriage to PWE appears to be the greatest cause of discrimination compared to association with and employment of PWE. Refusing equal employment for PWE due to the belief that epilepsy is a form of insanity is not surprising as insane people would not concentrate at work and could be a danger to themselves and their colleagues at work. Knowledge of the cause of epilepsy was significantly associated with not offering equal employment to PWE. Although this attitude is appropriate for some specific kinds of employment like driving, we lack its full explanation, given that our interview instrument did not include a follow-up question, to find out the kinds of employment that would not be recommended to PWE.
Knowledge about the cause of epilepsy was highly correlated with an advanced level of education. However, an advanced level of education did not appear to affect the beliefs that epilepsy is a form of insanity or is contagious in this study sample. Our finding suggests that a community epilepsy education program limited only to the improvement of knowledge, for example, on the causes of the condition may not be enough to reverse the negative attitudes toward epilepsy. Such a program will need to address the issue of false beliefs in order to bring about a positive change in attitudes that would eventually reduce stigma and treatment gap. A low level of education seemed to be a predictor of negative attitudes toward PWE and was demonstrated by logistic regression analysis to be an independent predictor for two negative attitudes examined. This implies that embarking on strategies to improve on the level of general education in a community like Akwaya, where 75% of the inhabitants have at most a primary level of education, are worth considering if prejudices against PWE and other stigmatizing conditions must be redressed. In our sample, there was a male predominance on issues of education at all levels except for the ‘‘no education” level (P = 0.003). Given that the male gender portrayed more negative attitudes toward PWE, improving on the level of general education especially of the female folk of this community may positively contribute to change attitudes toward epilepsy. 4.3. Understanding and practices with respect to epilepsy About 53% of our sample population had the misconception that epilepsy is a form of insanity. This finding was higher than that obtained in neighboring Batibo Health District (35%) [10], in Korea (34%) [5], Austria (11%) [17], and Hong Kong (10.4%) [15]. Witchcraft (19%) was among the most common cited causes of epilepsy in this area. In addition, punishment (usually believed to be inflicted through witchcraft) was cited by 10% of participants, bringing to 29%, witchcraft or witchcraft-related causes of epilepsy. The belief that epilepsy is due to witchcraft or possession by evil spirits is widely held in many communities in Cameroon and Africa. In Cameroon, 34.4% of a study sample in Batibo [10] linked epilepsy to witchcraft, while 73 and 76% of PWE in the Mifi Province [18] attributed their disease to evil spirit possession or a spell, respectively. About 28% of participants in a Ghanian study [19] linked epilepsy to witchcraft while 16.3% in Kaduna-Nigeria [2] attributed it to spirit possession. All traditional healers interviewed in a study in Zambia [20] believed that witchcraft was responsible for seizures. Another serious misconception was the belief among our participants that epilepsy is contagious (45.2%), similar to the findings from a parallel study in Batibo (46%) [10], Ethiopia (45%) [21],
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Tanzania (40.6%) [22], Senegal (35%) [23], and Korea (13%) [5]. In our study, 45% of those who thought epilepsy was contagious said it was transmitted through saliva. This kind of belief may seriously hinder helping a patient during seizures since tonic-clonic seizures are usually accompanied by hypersalivation. Although the majority (25%) of our participants cited brain disease as the cause of epilepsy, another 11% of them mentioned heredity, which was close to results obtained from studies in Batibo (15.7%) [10], Nigeria (19.9%) [2], and Austria (22%) [17] but less than those in Korea (29%) [5] and Hong Kong (71%) [15]. Convulsions and foams from the mouth were the most cited manifestation of epilepsy. Kabir et al. [2] reported similar findings in Nigeria, attributing this to the fact that they were the most easily noticeable symptoms. Another explanation why most participants cited convulsions as the manifestation for epilepsy can be linked to its local name: Gwaigungu which refers to the act of head-hitting by goats during a fight. Although 50% of respondents would recommend a medical doctor for treatment of epilepsy, up to 19 and 12% would either recommend a traditional healer or a witch doctor. This finding is consistent with the belief in the area that epilepsy is caused by witchcraft or inflicted on the sufferer as punishment for wrongdoing. Similar beliefs prevail elsewhere in the world [7,10,18,22]. There is, however, some contrast here to the notion of ‘‘good witchcraft” reported in Batibo [10] where inflicting epilepsy on one’s offspring protects them from ritual sacrifice. This concept needs to be further examined in the Akwaya area. 4.4. Limitations of study The Route method we used for sampling because of logistical problems, could have been replaced by random sampling. Furthermore, we could have done back translation of the questions from the local languages into English to improve its quality. 5. Conclusions The high level of public awareness on epilepsy in the Akwaya Health District may be a reflection of a possible high prevalence of the condition. The high level of awareness, however, contrasts with the prevalence of negative attitudes which were among the highest reported. Predictors of attitudes were male gender, low or no level of education, having children, knowledge of the cause of epilepsy and false beliefs that epilepsy is contagious or is a form of insanity. These data provides new evidence for our hypothesis of regional variation in the determinants of epilepsy stigma in Cameroon. These new findings call for further research on the epidemiology of epilepsy in this health district and provide baseline data for a comprehensive education program aimed at improving attitudes toward epilepsy in this area. Such an education program must take into account the belief and value systems of this community. Acknowledgement The authors thank all the participants and the interviewers for their collaboration. AKN conceived the study; AKN, ENT and WFTM
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designed the study; AKN and ENT analyzed the data and wrote the paper. Al authors contributed significantly to improve the scientific content of the paper and approved its final version.
References [1] Hills MD, Mackenzie HC. New Zealand community attitudes toward people with epilepsy. Epilepsia 2002;43(12):1583–9. [2] Kabir M, Iliyasu Z, Abubakar IS, et al. Knowledge, attitude, and beliefs, about epilepsy among adults in a northern Nigerian urban community. Ann Afr Med 2005;4(3):107–12. [3] Ismail H, Wright J, Rhodes P, et al. Religious beliefs about causes and treatment of epilepsy. Br J Gen Practice 2005;55:26–31. [4] Dongmo L, Echouffo TJB, Njamnshi AK, et al. Difficulties faced in the management of epilepsy in rural Cameroon: the case of Mbangassina locality. AJNS 2003;22(1). Available from: www.ajns.paans.org. [5] Kim MK, Kim IK, Kim BC, et al. Positive trends of public attitudes towards epilepsy after public education campaign among rural Korean residents. J Korean Med Sci 2003;18:248–54. [6] Kobau R, Zahran H, Thurman DJ, et al. Epilepsy surveillance among adults—19 States, behavioral risk factor surveillance system, 2005. MMWR 2008;57(SS06):1–20 [available at PubMed Central]. [7] Rhodes PJ, Small N, Ismail H, et al. The use of biomedicine, complementary and alternative medicine, and ethnomedicine for the treatment of epilepsy among people of South Asian origin in the UK. BioMed Central Open Access 2008;8:7. doi:10.1186/1472-6882-8-7 [Online]. [8] Njamnshi AK, Dongmo L, Sini V, et al. Epilepsy in rural Cameroon: the alarming prevalence rates in the Mbam valley. J Neuro Sci 2005;238(Suppl. 1):S136 [abstract]. [9] Ngoh VJ. Histrory of Cameroon since 1800. Limbe: Pressbook; 1996. [10] Njamnshi AK, Angwafor SA, Tabah EN, et al. General public knowledge, attitudes, and practices with respect to epilepsy in the Batibo Health District, Cameroon. Epilepsy Behav 2009;14:83-3. [11] Njamnshi AK, Yepnjio FN, Tabah EN, et al. Perception of epilepsy by the communities of Ebolowa and Sangmelima in the South Province, Cameroon. Epilepsy Behav 2009; 14:628–633. [12] Njamnshi AK, Dema F, Angwafor S, et al. Knowledge, attitudes and practices towards epilepsy in the village of Badissa–Cameroon. Pan African Association of Neurological Sciences Congress, Yaounde, (Cameroon) 2008 Abstract Booklet [abstract]. p. 29. [13] Research, Adelphi. Pharma Glossary—S. [Online] [Cited: January 23, 2009]. Available from: http://www.adelphigroup.com/marketresearch/glossary/ glossary_s.html. [14] Njamnshi AK, Angwafo SA, Jallon P, et al. Secondary school students’ knowledge, attitudes and practice towards epilepsy in Batibo Health District–Cameroon. Epilepsia 2008. doi:10.1111/j-1528-1167.2008.01809.x. [15] Fong CG, Hung A. Public awareness, attitudes and understanding of epilepsy in Hong Kong special administrative region, China. Epilepsia 2002;43(3):311–6. [16] Cuong LQ, Thien DD, Jallon P. Survey of public awareness, attitudes, and understanding towards epilepsy in Nhan Chinh, Hanoi, Vietnam. Epilepsy Behav 2006;8:176–80. [17] Spatt J, Bauer G, Baumgartner C, et al. Predictors for negative attitudes toward subjects with epilepsy: a representative survey in the general public in Austria. Epilepsia 2005;46(5):735–42. [18] Preux PM, Tiemagni F, Fodzo L, et al. Antiepileptic therapies in the Mifi Province in Cameroon. Epilepsia 2000;41(4):432–9. [19] Nyame PK, Biriwum RB. Epilepsy: knowledge, attitude and practice in literate urban population, Accra Ghana. West Afr J Med 1997;16:139–45. [20] Baskind R, Birbeck G. Epilepsy care in Zambia: a study of traditional healers. Epilepsia 2005;46(7):1121–6. [21] Tekle-Haimanot R, Abebe M, Gorgren L, et al. Attitudes of rural people in Central Ethopia towards epilepsy. Soc Sci Med 1991;32:2003–9. [22] Matuja WB, Rwiza HT. Knowledge, attitude and practice towards epilepsy in secondary school students in Tanzania. Rev Neurol 1998;26:1064–8. [23] Ndoye NF, Sow AD, Diop AG, et al. Prevalence of epilepsy, its treatment gap and knowledge attitudes and practice of its population in sub-urban Senegal: an ILAE/IBE/WHO study. Seizure 2005;14:106–11. [24] Mirnics Z, Czikora G, Zavecz T, et al. Changes in public attitudes toward epilepsy in Hungary: results of surveys conducted in 1994 and 2000. Epilepsia 2001;42:86–93. [25] Bener A, Al-Marzooqui FH, Sztriha L. Public awareness and attitudes towards epilepsy in the United Arab Emirates. Seizure 1998;7:219–22.
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
General public awareness, perceptions, and attitudes with respect to epilepsy in the Akwaya Health District, South-West Region, Cameroon Alfred K. Njamnshi a,f,*, Earnest N. Tabah b, Faustin N. Yepnjio c, Samuel A. Angwafor d, Fidele Dema e, Julius Y. Fonsah f, Callixte T. Kuate f, Vincent de Paul Djientcheu g, Fru Angwafo III h, Walinjom F.T. Muna a a
Department of Internal Medicine and Specialties, Faculty of Medicine and Biomedical Sciences, University of Yaounde I, Cameroon Neurology Department, Central Hospital Yaounde and National Leprosy and Buruli Ulcer Control Program, Department of Disease Control, Ministry of Public Health, Yaounde, Cameroon c Neurology Department, Central Hospital Yaounde, Cameroon and Fann University Hospital Centre, Dakar, Senegal d Neurology Department, Central Hospital Yaounde and Batibo District Hospital, North West Region, Cameroon e Neurology Department, Central Hospital Yaounde and Sa’a District Hospital, Centre Region, Cameroon f Neurology Department, Central Hospital Yaounde, Cameroon g Department of Surgery (Neurosurgery) FMBS, University of Yaounde I, Cameroon h Department of Surgery, FMBS, University of Yaounde I, Cameroon b
a r t i c l e
i n f o
Article history: Received 23 December 2008 Revised 7 March 2009 Accepted 13 March 2009 Available online 25 April 2009 Keywords: Epilepsy Awareness Attitudes Beliefs Practices Akwaya Cameroon
a b s t r a c t Background: This study was part of a series mandated by the Ministry of Public Health’s National Epilepsy Control Program to obtain baseline data for a community–adapted epilepsy education program. Methods: We conducted 387 face-to-face interviews with subjects without epilepsy aged 15 years and above in 12 villages of the Akwaya Health District, Cameroon. Results: Most respondents (97.9%) had heard or read about epilepsy, 90.2% knew someone with epilepsy, and 90.4% had witnessed a seizure. About 51.4% would object to association with people with epilepsy (PWE), 68.7% would object to marriage to PWE, while 41.6% would offer them equal employment. For treatment, 30.2% would suggest going to a traditional healer or witch doctor, while 3.9% would not recommend any treatment at all. Predictors of attitudes were male gender, low or no level of education, having children, knowledge of the cause of epilepsy, and beliefs that epilepsy is contagious or is a form of insanity. Conclusion: The high level of public awareness on epilepsy in the Akwaya Health District may suggest a high prevalence. This contrasts with prevailing negative attitudes. Our data provide new evidence for our hypothesis of regional variation in the determinants of epilepsy stigma in Cameroon. Ó 2009 Elsevier Inc. All rights reserved.
1. Introduction In many communities around the world and especially in Africa, epilepsy is a highly stigmatizing condition, characterized by recurrent seizures. Seizures result from a sudden and recurrent excessive disorderly discharge of cerebral neurons. They are unpredictable, uncontrollable, and distressful to the sufferer, and thus arouse fear [1]. The perception of epilepsy as due to witchcraft, possession of evil spirits, punishment for wrong doing, some form of insanity, and other misconceptions [2–4] is to blame for social discrimination and stigma against people with epilepsy (PWE) [5].
* Corresponding author. Address: Central Hospital Yaounde, P.O. Box 25625 Yaounde, Cameroon. Fax: +237 22 23 04 68. E-mail addresses: [email protected] (A.K. Njamnshi), [email protected] (E.N. Tabah), [email protected] (W.F.T. Muna). 1525-5050/$ - see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2009.03.013
Discrimination and stigma against PWE compromise their treatment and quality of life [6]. Misconceptions about the cause of epilepsy have influenced the care-seeking behavior of PWE, with a large proportion of them resorting to complementary and alternative medicine for treatment [4,7]. In Cameroon, epilepsy is a public health problem with prevalence rates as high as 6% in some endemic areas [8]. Cameroon has a rich and diverse culture, counting over 250 ethnic groups [9], providing an ideal setting for possible variations in the perceptions of epilepsy. Each ethnic group in Cameroon has a different name for epilepsy, the meanings of which instill fear, resulting in prejudice toward PWE. The magnitude of negative attitudes toward PWE has not been well explored in Cameroon. To our knowledge, few studies [10–12] have been carried out in this respect in Cameroon. The current study was designed as part of a nationwide survey within the framework of the National Epilepsy Control Program of the Ministry of Public Health to investigate the influence of Cameroon’s rich
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cultural and ethnic diversity on the perceptions and attitudes concerning epilepsy. The goal was to obtain baseline data on awareness, attitudes, and practices, to inform the development of an epilepsy educational program, targeted at the general population. 2. Methods 2.1. Respondents A survey of a sample of 387 adults resident in Akwaya health district was carried out as part of national KAP study on epilepsy in July 2008. We excluded persons below 15 years, persons with previous or current seizures, mentally ill people, and medical professionals. 2.2. Survey setting This community-based survey was carried out in Akwaya Health District, of the South-West Region of the Republic of Cameroon (See maps in Figs. 1 and 2). Akwaya health district has a population of 77,773 inhabitants, living in about 98 communities, grouped into four health areas that make up the district. There are eight major tribes in the district and the majority of the inhabitants are peasant farmers. The health district has one hospital (District Hospital) and five functional health centers and many traditional healers. The Akwaya Health District is the most enclave health district Region of Cameroon, with a harsh topography, very poor road network, making accessibility to health facilities a real challenge to
Fig. 2. Map of Akwaya Health District.
the population. The inhabitants of this rural district are a very hard-working people, occupied essentially by peasant farming and hunting. 2.3. Sampling method Four villages were selected from each of these three health areas in Akwaya Health District: Akwaya health area (Akwaya, Manko, Ngali and Kajinga villages), Akwa health area (Atolo, Tinta, Bachama, Makumunu), and Bagundu health area (Ballin, Bakinjaw, Bagundu and Enjawbaw villages). The fourth health area was left out because of geographical inaccessibility. Using the random route method [13], 35 households were selected from each of these villages. Within each selected household, one person fulfilling the inclusion criteria was selected for the interview. 2.4. Data collection Data were collected using a 12-item questionnaire in English, designed to evaluate knowledge, attitudes, and practice toward epilepsy. The questionnaire was the same used by our study group in the Batibo Health District, Cameroon [10]. Five interviewers with at least a General Certificate of Education, Advanced Level, and fluent in at least one of the local languages were recruited and trained for 3 days on the administration of the questionnaire by one of the co-authors (E.N.T.). The training included, among other things, the full understanding of and appropriate translation of the questionnaire into the major local languages (Olity, Becheve, Assumbo, Anyang, Ogal, and Fulbe) and field testing of the questionnaire by these interviewers. After the training, the interviewers were assigned to selected villages where they conducted face-to-face interviews with the subjects. 2.5. Ethical issues
Fig. 1. Map of Cameroon showing the 10 administrative regions and Akwaya Health District. Source: Adapted from Wikipedia free encyclopedia (http://en.wikipedia.org/wiki/Image: Regions (Provinces) of Cameroon EN.svg).
Ethical clearance was obtained from the National Ethics Committee and the series of studies was mandated by the Ministry of
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Public Health of Cameroon within the framework of the National Epilepsy Program. All participants gave an informed verbal consent. 2.6. Data analysis Data management and statistical analysis were done using SPSS for Windows version 15.0 statistical software. Chi-square tests were used to examine the association between responses and each demographic variable in a univariate analysis. We also used a chisquare test to examine the association between responses to questions on attitudes and those on awareness and understanding. The significance level was set at P < 0.05. After performing the orienting univariate analyses, we did a logistic regression to analyze predictors for negative attitudes. 3. Results 3.1. Characteristics of study sample Three hundred and eighty seven (387) out of the 420 invited subjects accepted to be interviewed, giving a response rate of 92.14%. The mean age of the participants was 34.6 ± 1.9 years, for an interquartile age range of 20 years (Q1, 23 years; and Q3, 43 years). The male/female sex ratio was 1.2/1. The main occupation was peasant farming. The majority of our subjects were Christians (91.7%), and 59.4% of them were or had been married. About 27% of the sample had no formal education while 48 and 25% had primary and secondary or higher levels of education, respectively.
3.2. Familiarity with epilepsy (Table 1) There was a high level of familiarity with epilepsy among our participants, 97.9% had heard or read about epilepsy, 90.2% knew someone with epilepsy, and 90.4% had witnessed a seizure. In a univariate analysis, familiarity with epilepsy was associated with advanced age, being married, having a child, being a civil servant, or being a Christian or animist. The most common symptoms of epilepsy (Table 3) cited by the participants included foaming, convulsions, loss of consciousness, change of behavior, and screaming. Nevertheless, 13.4% of the participants did not know any form of manifestation of epilepsy. 3.3. Attitudes, understanding, and practices with respect to epilepsy (Table 2) Of the 387 participants, 51.4% would object to their children associating with PWE, 68.7% would object to marrying someone with epilepsy, while 41.6% would offer equal employment to PWE. In the univariate analysis, all the three negative attitudes were associated with a low or no level of education, male gender, belonging to the Islamic religion, and having more than five children. While age and marital status did not seem to influence attitudes, more favorable attitudes toward PWE were observed among civil servants. Regarding the questions on the understanding of epilepsy, 43.7% of the participants knew at least one correct cause of epilepsy, meanwhile 45.2 and 52.5%, respectively, thought that epilepsy was contagious or a form of insanity. Male participants, those with a secondary or higher level of education, and civil servants were more likely to know the cause of epilepsy. None of
Table 1 Responses to Questions on Familiarity with epilepsy by demographic variables. No of participants
Q1
Q2
Q3
Total
387
97.9
90.2
90.4
Age 15–29 30–49 P50
173 177 37
96.5 99.4 97.3
P = 0.12
84.4 95.5 91.9
P = 0.002
86.1 94.4 91.9
P = 0.03
Gender Male Female
209 178
98.1 97.8
P = 0.82
90.4 89.9
P = 0.86
90.9 89.9
P = 0.73
Religion Animist Catholic Muslim Protestant
21 194 11 161
100 98.5 90.9 97.9
P = 0.32
90.5 91.2 36.4 92.5
Marital status Single Married Widowed or divorced
157 206 24
94.9 100 100
P = 0.003
87.3 91.7 95.8
P = 0.229
86 93.7 91.7
P = 0.046
No. of offspring 0 1–5 >5
116 186 85
94 99.5 100
P = 0.002
84.5 91.3 95.3
P = 0.029
82.8 91.9 97.6
P = 0.001
Level of education None Primary Secondary or higher
105 185 97
98.1 97.8 97.9
P = 0.989
88.6 88.6 94.8
P = 0.204
90.5 90.8 89.7
P = 0.955
Occupation Agriculture Civil servant Pupil/student Other
239 20 70 58
98.7 100 95.7 96.6
P = 0.327
93.7 100 88.6 74.1
Figures under question columns represent percentages of participants with a ‘‘Yes” response to the question. Q1: Have you heard or read about the disease called ‘‘epilepsy” or convulsive seizure? Q2: Do you know anyone who has or had epilepsy? Q3: Have you ever seen someone who was having a seizure?
P < 0.001
P < 0.001
90.5 92.3 54.5 90.7
93.7 100 85.7 79.3
P = 0.001
P = 0.002
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Table 2 Responses to questions of understanding and attitudes towards epilepsy by demographic variables. No. of participants
Q4
Q5
Q6
Q7
Q8
Q10
68.7
41.6
52.5
43.7
45.2
Total
387
51.4
Age 15–29 30–49 P50
173 177 37
53.2 49.7 51.4
P = 0.811
68.2 67.2 78.4
P = 0.405
45.1 37.9 43.2
P = 0.381
52.0 52.0 56.8
P = 0.859
45.7 43.5 35.1
P = 0.502
49.7 42.4 37.8
P = 0.246
Gender Male Female
209 178
59.3 42.1
P = 0.001
75.6 60.7
P = 0.002
38.8 44.9
P = 0.218
50.2 55.1
P = 0.344
49.3 37.1
P = 0.016
43.1 45.2
P = 0.355
Religion Animist Catholic Muslim Protestant
21 194 11 161
57.1 54.1 81.8 45.3
30.0 43.3 27.3 46.9
P = 0.331
71.4 44.3 36.4 43.5
P = 0.092
Marital status Single Married Widowed or divorced
157 206 24
52.9 49.5 58.3
P = 0.641
63.7 71.4 79.2
No. of offspring 0 1–5 >5
116 186 85
51.7 50.5 52.9
P = 0.932
62.1 67.2 81.2
Level of Education None Primary Secondary or higher
105 185 97
44.8 64.3 34.0
Occupation Agriculture Civil servant Pupil/student Other
239 20 70 58
53.1 15.0 52.9 55.2
P = 0.054
P < 0.001
P = 0.010
42.9 74.7 90.9 63.4
71.4 75.7 52.6 74.5 45.0 62.9 60.3
P = 0.002
P = 0.155
47.6 42.8 0 42.2
P = 0.006
57.1 51.0 9.1 56.5
P = 0.021
42.7 41.3 37.5
P = 0.882
47.8 54.4 66.7
P = 0.163
45.2 45.1 20.8
P = 0.066
49.0 42.7 41.7
P = 0.456
P = 0.192
44.8 55.9 55.3
P = 0.144
42.2 44.6 43.5
P = 0.920
46.6 47.3 38.8
P = 0.403
P = 0.010
48.3 39.8 36.5
P = 0.171
52.4 57.3 43.3
P = 0.082
26.7 47.0 55.7
47.6 48.1 37.1
P = 0.179
P < 0.001
37.1 40.0 49.5 40.6 55.0 48.6 32.8
P = 0.183
57.3 40.0 39.7 50.0
P = 0.058
44.4 25.0 48.3 51.4
P = 0.197
P = 0.008
40.6 80.0 47.1 39.7
P < 0.001
P = 0.006
Figures under the question columns represent percentages of participants with a ’Yes’ response to the question. Q4: Would you object to your children associating with someone who sometimes had seizures? Q5: Would you object if your son or daughter wanted to marry a person who sometimes had seizures? Q6: Do you think people with epilepsy should be employed in jobs like others? Q7: Do you think epilepsy is a form of insanity? Q8: Knowledge of cause of epilepsy (rephrased): YES = hereditary, brain disease, birth defect, blood disorder; NO = witch craft, punishment, mental illness, don’t know. Q10: Do you think epilepsy is contagious?
the variables examined influenced the misconception that epilepsy is a form of insanity or is contagious. Table 3 shows the common causes of epilepsy cited by the participants and the modes of transmission for those who thought epilepsy was contagious. The main question on practice was to know what source of treatment the participants would recommend for any of their relatives if they had epilepsy. About 50% of participants would recommend a medical doctor, while 31% suggested a traditional healer, or a witch doctor. More details are given in Table 3. In a bid to study the relationship between understanding of epilepsy and attitudes (Table 4), we found out that those who thought epilepsy was a form of insanity or contagious were least likely to allow their children to associate with or offer equal employment to PWE. Unexpectedly, those who knew the cause of epilepsy were least likely to offer equal employment to PWE (P = 0.014) and were more likely to object marriage to PWE, although the difference was not significant. 3.4. Independent predictors of attitudes (Table 5) After controlling for confounders in a logistic regression analysis, the male gender, low or no level of education, and the belief that epilepsy is contagious were found to be independent predictors for two of the three attitudes examined (object to association or marriage with PWE). The belief that epilepsy is a form of insanity was, however, the only predictor for the attitude of offering equal employment to PWE.
4. Discussion 4.1. Familiarity Our results revealed a high level of familiarity with epilepsy in the Akwaya Health District. Compared with results of parallel studies in Cameroon by our research group [10–12,14] and elsewhere in the world (see Table 6, an adaptation from Njamnshi et al., 2008), the percentage of a ‘‘yes” responses to the question ‘‘Have you ever heard or read about epilepsy” in our study was among the highest in Cameroon and was higher than that in developed countries. Relatively similar proportions were obtained for those who knew someone with epilepsy (90.2%) and those who had witnessed a seizure (90.4%). As argued by Njamnshi et al. [10], the high level of familiarity with epilepsy among the participants of our study could suggest a high magnitude of active epilepsy in Akwaya Health District. A community-based survey on epilepsy will, however, be necessary to confirm this suspicion based on previous observation. In fact, as shown in Table 6, our group has observed that in Badissa, where the prevalence of epilepsy is one of the highest in Cameroon, up to 6% [8], the level of awareness is also very high as 100, 98.7, and 97.5% of participants had heard/read about epilepsy, knew a PWE, or had witnessed a seizure, respectively. The large proportion of our study sample with little or low level of education (75%) suggests that knowledge of epilepsy could mainly be attributed to close interpersonal relationships with PWE [1,15] and acquaintanceship with seizures [16]. As observed
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Table 5 Independent predictors of attitudes.
Cited causes of epilepsy Brain disease Witch craft Hereditary Punishment Mental illness Birth defect Blood disorder Don’t know
387 98 73 46 37 22 14 11 86
100% 25% 19% 12% 10% 6% 4% 3% 22%
Cited modes of transmission Saliva Blood contact Sexual intercourse Waste gas from patient Other Urine Food Don’t know
183 83 32 15 2 2 1 1 47
100% 45% 17% 8% 1% 1% 1% 1% 26%
Cited manifestations of epilepsy Convulsions Foams from the mouth Loss of consciousness Change in behavior Screaming Periods of amnesia Falls Don’t know
387 94 93 63 46 34 3 2 52
100% 24% 24% 16% 12% 9% 1% 1% 13%
Recommended sources of treatment Medical doctor Traditional healer Witch doctor Medical doctor and traditional healer Prayers No need to treat Other Don’t know
387 192 72 45 19 17 15 1 26
100% 50% 19% 12% 5% 4% 4% 0% 7%
in Batibo Health District [10] and New Zealand [1], the youngest age group (15–29) was the least familiar with epilepsy. The Akwaya Health District shares common boundaries with Batibo Health District to the east and with both districts having similar climate and vegetation and inhabitants leading almost the same mode of life. Epilepsy in both districts may have evolved in a similar manner in these districts, allowing the elderly to be more likely to be acquainted with PWE or seizures. Familiarity with PWE was
OR
95% CI Lower
Upper
Would object to children associating with PWE Male gender 2.33 No formal education 1.95 Primary education 3.75 Think epilepsy is a form of insanity 1.78
1.50 1.06 2.18 1.16
3.63 3.58 6.44 2.73
Would object to children marrying with PWE Male gender No formal education Primary education Have 1–5 offspring Have >5 offspring Think epilepsy is contagious
3.15 3.44 3.37 1.92 3.65 0.39
1.81 1.60 1.84 1.02 1.51 0.23
5.51 7.39 6.16 3.61 8.83 0.65
Would offer equal employment to PWE Think epilepsy is a form of insanity Know the cause of epilepsy
0.24 0.56
0.15 0.36
0.37 0.88
also associated with marriage, number of offspring, and occupation (civil servant). Probably, participants were mostly close relatives or associates of PWE. The Muslims were also the least likely to know someone with epilepsy or to have witnessed a seizure, although 90.9% had heard or read about epilepsy. In a predominantly Fulani (81.5%) and Muslim (89%) community in Kaduna-Nigeria, Kabir et al. found that out of a sample of 200 participants, 100% had heard or read about epilepsy but only 26.5% of them had witnessed a seizure. It would be interesting in a subsequent study targeting the Fulanis to find out what it is in their social structure that limits acquaintance with PWE. Fong and Hung [15] argued that the relatively lower proportion among the inhabitants of Hong Kong who know someone with epilepsy or who have witnessed a seizure is explained by their social culture, whereby PWE tend to limit their social circles and therefore would not be known by anyone outside the social circle of the patient. 4.2. Attitudes toward epilepsy A comparison of our data on attitudes with those obtained from parallel studies in Cameroon [10,11,14] and elsewhere in the world is shown in Table 6. Our sample population registered relatively
Table 4 Familiarity and understanding of epilepsy versus attitudes. No. of participants
Q4
Q5
Total No Yes
387 8 379
51.4 37.5 51.7
68.7 50.0 69.1
Know someone who has or had epilepsy
No Yes
38 349
60.5 50.4
P = 0.237
73.7 68.2
P = 0.488
36.8 42.1
P = 0.531
Have ever seen someone having seizures
No Yes
37 350
45.9 52.0
P = 0.483
62.2 69.4
P = 0.365
40.5 41.7
P = 0.890
Think epilepsy is a form of insanity
No Yes
184 203
43.5 58.6
66.8 70.4
P = 0.446
57.1 27.6
P < 0.001
Know the cause of epilepsy
No Yes
229 158
51.1 51.9
65.9 72.8
P = 0.153
46.7 34.2
P = 0.014
Think epilepsy is contagious
No Yes
212 175
46.2 57.7
75.9 60.0
P = 0.001
46.7 35.4
P = 0.025
Heard or read about epilepsy or convulsive seizure
P = 0.426
P = 0.003 P = 0.876
P = 0.024
Figures under the question columns represent percentages of participants with a ’Yes’ response to the question. Q4: Would you object to your children associating with someone who sometimes had seizures? Q5: Would you object if your son or daughter wanted to marry a person who sometimes had seizures? Q6: Do you think people with epilepsy should be employed in jobs like others?
Q6 P = 0.248
41.6 37.5 41.7
P = 0.812
184
A.K. Njamnshi et al. / Epilepsy & Behavior 15 (2009) 179–185
Table 6 Comparison of familiarity and attitudes with other studies in Cameroon and other countries. Country/year of publication
No. of participants
Q1
Q2
Q3
Q4
Q5
Q6
Cameroon 2009: Akwaya [present study] Cameroon 2009: Ebolowa and Sangmelima [11] Cameroon 2009: Batibo (Community) [10] Cameroon 2008: Batibo (Secondary students) [14] Cameroon 2008: Badissa [12] Senegal 2005 [23] Nigeria 2005 [2] Austria 2005 [17] Vietnam 2003 [16] New Zealand 2002 [1] Hong Kong 2002 [15] Hungary 2001[24] UAE 1998 [25] Ethiopia 1991 [21]
387 456 302 910 164 4500 200 2128 1000 400 1128 2000 892 1546*
97.9 99.6 99.3 95.0 100 NA 100 89 54.6 95 58.2 93.7 75 89
90.2 74.3 89.7 73.3 98.7 NA NA 40 45.5 73 18.9 51.9 NA NA
90.4 77.8 87.7 76.4 97.5 66 26.5 36 49.2 67 55 55.3 34 NA
51.4 26.8 42.7 25.4 26.2 40 NA 11 18.7 2 11.2 16 NA NA
68.7 40.3 75.8 64.2 32.3 68 NA 15 56.0 5 32.3 41.1 NA NA
41.6 55.3 35.1 58.6 55.5 NA NA 84 57.9 69 77.5 62 NA NA
Figures under question columns represent percentages of participants with a ‘‘Yes” response to the question. * Total No. of households.
very high negative attitudes compared with those reported in other studies. They had the highest proportion of refusing the association of their children with PWE (51.4%). The attitudes in our sample are similar to those in Batibo where 75.8% of the respondents would object to marriage with PWE and only 35% would offer equal employment to PWE. Compared to Badissa [12], Ebolowa, and Sagmelima [11] in the Southern Region of Cameroon, the attitudes in our sample were more negative. Although cross-cultural differences between regions could account for this, the lack of an awareness program on epilepsy in the Akwaya Health District, in particular, and many other regions of Cameroon in general, could be to blame. Such a program was piloted some 8 years ago in the Mbagassina administrative subdivision (to which the Badissa village belongs), with subsequent constitution of the Cameroon chapter of the International Bureau of Epilepsy in Mbagassina [4]. These factors, at least in part, could explain the relatively lower level of negative attitudes in Badissa [10] compared to Akwaya. Kim et al. have demonstrated that public education campaigns promote positive change of attitudes toward epilepsy and PWE [5]. The greatest negative attitude was the refusal of one’s children to marry PWE. Although in Africa marriage is considered an alliance between two families, it nevertheless remains a very personal and emotional issue. In Akwaya, epilepsy is thought to be a curse or punishment by witches or wizards for wrong committed by the patient or parents of the patient. Thus, marrying someone with epilepsy is tantamount to importing the curse or punishment into the family. In this community, people also hold the view that PWE lack concentration and ‘‘are not balanced” in their heads. For this reason, men with epilepsy would not be able to take care of their families. Similarly, women with epilepsy will not be able to raise children. Furthermore, there is a rare belief in this community that a seizure contaminates house food. Therefore, women with epilepsy, especially those with recurrent seizures, would be a source of starvation in the family. All these, coupled with the belief that epilepsy is a form of insanity or is hereditary, may explain why marriage to PWE appears to be the greatest cause of discrimination compared to association with and employment of PWE. Refusing equal employment for PWE due to the belief that epilepsy is a form of insanity is not surprising as insane people would not concentrate at work and could be a danger to themselves and their colleagues at work. Knowledge of the cause of epilepsy was significantly associated with not offering equal employment to PWE. Although this attitude is appropriate for some specific kinds of employment like driving, we lack its full explanation, given that our interview instrument did not include a follow-up question, to find out the kinds of employment that would not be recommended to PWE.
Knowledge about the cause of epilepsy was highly correlated with an advanced level of education. However, an advanced level of education did not appear to affect the beliefs that epilepsy is a form of insanity or is contagious in this study sample. Our finding suggests that a community epilepsy education program limited only to the improvement of knowledge, for example, on the causes of the condition may not be enough to reverse the negative attitudes toward epilepsy. Such a program will need to address the issue of false beliefs in order to bring about a positive change in attitudes that would eventually reduce stigma and treatment gap. A low level of education seemed to be a predictor of negative attitudes toward PWE and was demonstrated by logistic regression analysis to be an independent predictor for two negative attitudes examined. This implies that embarking on strategies to improve on the level of general education in a community like Akwaya, where 75% of the inhabitants have at most a primary level of education, are worth considering if prejudices against PWE and other stigmatizing conditions must be redressed. In our sample, there was a male predominance on issues of education at all levels except for the ‘‘no education” level (P = 0.003). Given that the male gender portrayed more negative attitudes toward PWE, improving on the level of general education especially of the female folk of this community may positively contribute to change attitudes toward epilepsy. 4.3. Understanding and practices with respect to epilepsy About 53% of our sample population had the misconception that epilepsy is a form of insanity. This finding was higher than that obtained in neighboring Batibo Health District (35%) [10], in Korea (34%) [5], Austria (11%) [17], and Hong Kong (10.4%) [15]. Witchcraft (19%) was among the most common cited causes of epilepsy in this area. In addition, punishment (usually believed to be inflicted through witchcraft) was cited by 10% of participants, bringing to 29%, witchcraft or witchcraft-related causes of epilepsy. The belief that epilepsy is due to witchcraft or possession by evil spirits is widely held in many communities in Cameroon and Africa. In Cameroon, 34.4% of a study sample in Batibo [10] linked epilepsy to witchcraft, while 73 and 76% of PWE in the Mifi Province [18] attributed their disease to evil spirit possession or a spell, respectively. About 28% of participants in a Ghanian study [19] linked epilepsy to witchcraft while 16.3% in Kaduna-Nigeria [2] attributed it to spirit possession. All traditional healers interviewed in a study in Zambia [20] believed that witchcraft was responsible for seizures. Another serious misconception was the belief among our participants that epilepsy is contagious (45.2%), similar to the findings from a parallel study in Batibo (46%) [10], Ethiopia (45%) [21],
A.K. Njamnshi et al. / Epilepsy & Behavior 15 (2009) 179–185
Tanzania (40.6%) [22], Senegal (35%) [23], and Korea (13%) [5]. In our study, 45% of those who thought epilepsy was contagious said it was transmitted through saliva. This kind of belief may seriously hinder helping a patient during seizures since tonic-clonic seizures are usually accompanied by hypersalivation. Although the majority (25%) of our participants cited brain disease as the cause of epilepsy, another 11% of them mentioned heredity, which was close to results obtained from studies in Batibo (15.7%) [10], Nigeria (19.9%) [2], and Austria (22%) [17] but less than those in Korea (29%) [5] and Hong Kong (71%) [15]. Convulsions and foams from the mouth were the most cited manifestation of epilepsy. Kabir et al. [2] reported similar findings in Nigeria, attributing this to the fact that they were the most easily noticeable symptoms. Another explanation why most participants cited convulsions as the manifestation for epilepsy can be linked to its local name: Gwaigungu which refers to the act of head-hitting by goats during a fight. Although 50% of respondents would recommend a medical doctor for treatment of epilepsy, up to 19 and 12% would either recommend a traditional healer or a witch doctor. This finding is consistent with the belief in the area that epilepsy is caused by witchcraft or inflicted on the sufferer as punishment for wrongdoing. Similar beliefs prevail elsewhere in the world [7,10,18,22]. There is, however, some contrast here to the notion of ‘‘good witchcraft” reported in Batibo [10] where inflicting epilepsy on one’s offspring protects them from ritual sacrifice. This concept needs to be further examined in the Akwaya area. 4.4. Limitations of study The Route method we used for sampling because of logistical problems, could have been replaced by random sampling. Furthermore, we could have done back translation of the questions from the local languages into English to improve its quality. 5. Conclusions The high level of public awareness on epilepsy in the Akwaya Health District may be a reflection of a possible high prevalence of the condition. The high level of awareness, however, contrasts with the prevalence of negative attitudes which were among the highest reported. Predictors of attitudes were male gender, low or no level of education, having children, knowledge of the cause of epilepsy and false beliefs that epilepsy is contagious or is a form of insanity. These data provides new evidence for our hypothesis of regional variation in the determinants of epilepsy stigma in Cameroon. These new findings call for further research on the epidemiology of epilepsy in this health district and provide baseline data for a comprehensive education program aimed at improving attitudes toward epilepsy in this area. Such an education program must take into account the belief and value systems of this community. Acknowledgement The authors thank all the participants and the interviewers for their collaboration. AKN conceived the study; AKN, ENT and WFTM
185
designed the study; AKN and ENT analyzed the data and wrote the paper. Al authors contributed significantly to improve the scientific content of the paper and approved its final version.
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