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Public awareness, perceptions, and attitudes with respect to epilepsy in Ebolowa and Sangmelima—Urban Cameroon
Epilepsy & Behavior 14 (2009) 628–633
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Public awareness, perceptions, and attitudes with respect to epilepsy in Ebolowa and Sangmelima—Urban Cameroon Alfred K. Njamnshi a,b,*, Faustin N. Yepnjio b,c, Earnest N. Tabah b,d, Fidèle Dema b,e, Samuel A. Angwafor b,f, Julius Y. Fonsah b, Fru F. Angwafo III g,h, Walinjom F.T. Muna a a
Department of Internal Medicine and Specialties, Faculty of Medicine and Biomedical Sciences, University of Yaounde I, Yaounde, Cameroon Neurology Department, Central Hospital Yaounde, Yaounde, Cameroon c Fann University Hospital Centre, Dakar, Senegal d Department of Disease Control, Ministry of Public Health, Yaounde, Cameroon e Sa’a District Hospital, Cameroon f Batibo District Hospital, Cameroon g Department of Surgery, Faculty of Medicine and Biomedical Sciences, University of Yaounde I, Yaounde, Cameroon h Ministry of Public Health, Yaounde, Cameroon b
a r t i c l e
i n f o
Article history: Received 14 December 2008 Revised 19 January 2009 Accepted 22 January 2009 Available online 4 February 2009 Keywords: Epilepsy Awareness Attitudes Beliefs Ebolowa and Sangmelima Suburban Cameroon
a b s t r a c t Within the framework of a series of studies mandated by the Ministry of Public Health of Cameroon to obtain baseline data for an epilepsy education program adapted to our communities, we interviewed 456 subjects without epilepsy in the Ebolowa Regional and Sangmelima District Hospitals. We found that 99.6 and 72.6% had heard or knew a person or people with epilepsy (PWE) and 76.8% had seen a seizure. About 58% of respondents would offer equal employment opportunities to PWE; 39.6% and 33.6% would respectively object to their children associating with or marrying PWE; 13% associated epilepsy with insanity and witchcraft, whereas 82.5% would recommend modern treatment for epilepsy. Predictors of negative attitudes were the beliefs that epilepsy is hereditary (26.3%) and epilepsy is a form of insanity (13%). Familiarity with epilepsy in Ebolowa and Sangmelima is high, and attitudes toward PWE are better there than in other areas of Cameroon. These results demonstrate a regional variation in public awareness and attitudes toward epilepsy and suggest that urban populations may constitute targets as well as channels for epilepsy sensitization campaigns in Cameroon. Ó 2009 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is the commonest neurological brain disorder worldwide [1]. There is a broad variation in the perception of this condition depending on the region and culture considered [2]. Many studies around the world have shown great variations in perceptions of, attitudes toward, and practices concerning epilepsy [2– 5]. Although Cameroon is among the most affected countries in the world [6], few such studies have been carried out in this country [7–9]. Given the reported and suspected high prevalence rates of epilepsy in some areas of Cameroon, the Ministry of Public Health has elaborated a National Epilepsy Control Programme that was recently implemented in the country. One of the activities of this program is to carry out nationwide surveys to ascertain the influence of Cameroon’s broad cultural variation on perceptions of and practices concerning epilepsy. It is within this framework that we carried out the current study in Ebolowa and Sangmelima,
* Corresponding author. Address: Neurology Department, Central Hospital Yaounde, P.O. Box 25625, Yaounde, Cameroon. Fax: +237 223 45 79. E-mail address: [email protected] (A.K. Njamnshi). 1525-5050/$ - see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2009.01.021
which are urban areas in the South Region (province) of Cameroon. Our main goal was to identify determinants of inappropriate attitudes toward and practices concerning epilepsy in these communities and to compare our findings with parallel studies in rural Cameroon [7,8] and similar studies in developing [3,10–14] and more developed [4,5,15,16] countries. The results from this study and others in the series will provide baseline data for an epilepsy education program adapted to our communities in Cameroon. 2. Methods 2.1. Place of study Cameroon is a country in the Central African subregion with an estimated population of about 16 million inhabitants in 10 administrative regions (see Fig. 1). Ebolowa and Sangmelima are urban towns in the South Region with respectively 97,589 and 80,000 inhabitants. Ebolowa is the capital city of Mvila Division which has a surface area of 8.697 km2, and Sangmelima, is the capital of Dja and Lobo Division with an area of 19.911 km2. The two towns are in the middle of the Cameroonian equatorial forest, and most of
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2.2. Participants We consecutively interviewed 226 and 230 adult subjects, visitors, and caregivers, 18 years of age and older, who provided informed consent to a hospital-based survey in the Ebolowa Regional Hospital and Sangmelima District Hospital, respectively. People with previous or current seizures were excluded from the study. 2.3. Questionnaire and interviews Each questionnaire form contained 12 questions in English and French designed to evaluate knowledge, attitudes, and practices with respect to epilepsy. The questionnaire was identical to that adapted and used by our study group in previous studies in Cameroon [7–9]. The face-to-face interviews were conducted consecutively by one of the co-authors (F.D.) in the Ebolowa Regional Hospital and Sangmelima District Hospital in 2006. 2.4. Ethical issues Ethical clearance was obtained from the National Ethics Committee and an Administrative Authorisation for Research was issued by the Minister of Public Health of Cameroon. All participants gave informed consent. 2.5. Data analysis
Fig. 1. Map of Cameroon showing the 10 administrative regions and the health districts of Ebolowa and Sangmelima. Adapted from Wikipedia free encyclopedia (http://en.wikipedia.org/wiki/Image: Administrative Regions (Provinces) of Cameroon EN.svg).
the inhabitants practice subsistence agriculture. Ebolowa has two hospitals (the Regional Hospital and a private hospital) and a nursing school. Sangmelima, on the other hand, has a District Hospital. The town of Ebolowa is in the Ebolowa Health District, and Sangmelima is in the Sangmelima Health District (see Fig. 2). The South Regional Delegation of Public Health supervises all health activities within the region.
Data were analyzed for statistical significance using EpiInfo Version 3.3.2 software (Centers for Disease Control and Prevention, Atlanta; Division of Integrated Surveillance Systems and Services, Atlanta, GA, USA). v2 tests were used to examine the association between responses and each demographic variable in a univariate analysis. We also used a v2 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. 3. Results Four hundred fifty-six of the 500 invited subjects agreed to be interviewed, yielding a response rate of 91%. Participants’ ages ranged from 18 to 75 years, with a mean of 27.4 ± 10.4. The main
Fig. 2. Map of South Regional Delegation of Public Health showing Ebolowa and Sangmelima Health Districts.
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occupation was agriculture, and 44.7% of the study sample practiced peasant farming.
Table 2 Responses to questions on attitudes toward and understanding of epilepsy by demographic variables.a
3.1. Familiarity with epilepsy
No. of responses
Although almost every participant (99.6%) had heard about epilepsy, only 12.3% had read about the disease. Nearly three of four subjects had witnessed a seizure (72.6%), and 76.8% knew someone with epilepsy. Observing a seizure was significantly associated with advanced age (P = 0.01), having more than five offspring (P = 0.03), and having had higher education (P = 0.05) (Table 1). 3.2. Attitudes toward epilepsy About 58% of respondents would offer equal employment opportunities to PWE, whereas 39.6% and 33.6% would respectively object to their children associating with and marrying someone with epilepsy. Age below 30 years and student status were associated with more positive attitudes with respect to employment of PWE (P = 0.01 and 0.004, respectively) (Table 2). 3.3. Understanding of and practices concerning epilepsy About 13% of respondents linked epilepsy to insanity. This belief was significantly associated with having many offspring, having an elementary education, and practicing agriculture (P = 0.03 in each case). The belief that epilepsy is contagious was held by 33.6% of participants, and this percentage was higher among females and those who practiced agriculture (P = 0.03 and 0.02, respectively). For those who considered epilepsy a contagious condition, the means of transmission most often mentioned were: saliva
Table 1 Responses to questions on familiarity with epilepsy by demographic variables.a
Total Age 18–29 30–49 >50 Sex Male Female Marital status Single Divorced Married Widowed Offspring 0 1–5 >5 Education None Primary Secondary Higher education Occupation Agriculture Civil servant Pupil/student Other
No. of responses
Yes (%) Q1a
Q1b
Q2
Q3
456
99.6
12.3
72.6
76.8
311 133 12
99.4 100 100
10.6 15.8 16.7
69.9 78.2 83.3
73.4 82.7 100.0a
256 200
99.2 100
12.8 11.5
72.4 73
78.2 75
326 4 123 3
99.7 100 99.2 100
12.2 25 9.8 100
70 50 80.5 66.7
74 75 83.7 100
267 154 34
99.6 99.4 100
11.2 14.9 12.3
69.8 72.7 94.1
74.3 77.3 94.1
0 24 381 51
0 100 99.7 98
0 16.7 11.5 15.7
0 62.5 72.5 78.4
0 70.8 75.4 90.2
38 57 270 91
100 100 99.6 98.9
15.8 19.8 11.8 7.7
68.4 84.2 69.7 75.8
81.6 86 74.9 74.7
a Values in boldface indicate statistical significance: P < 0.05. See text for exact P values Q1: Have you heard (Q1a) or read (Q1b) 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?
Total Age 18–29 30–49 >50 Sex Male Female Marital status Single Divorced Married Widowed Offspring 0 1–5 >5 Education None Primary Secondary Higher education Occupation Agriculture Civil servant Pupil/student Other
456
Yes (%) Q4
Q5
Q6
Q7
Q10
16.9
39.6
58.3
12.9
33.6
a
311 133 12
24.4 32.3 33.3
39.1 39.1 58.3
62.7 50.4 33.3
11.6 15 25
36.2 27.5 33.3
256 200
26.5 20.7
41.2 37.5
53.9 64.3
12.5 13.6
29.9 38.4
326 4 123 3
25.4 50 30.9 0
40.1 50 39 0
63.2 75 44.7 66.7
11.6 25 16.4 0
35.1 25 30.1 33.3
267 154 34
23.9 29.2 38.2
38.8 39.6 47.1
65.9 50.6 32.4
10.1 15 26.5
35.8 31.6 26.5
0 24 381 51
0 33.3 26.4 27.5
0 33.3 39.8 41.2
0 37.5 60.4 52.9
0 29.2 12.6 7.8
0 56.5 33.2 26
38 57 270 91
23.7 26.3 25.5 33
28.9 4.4 39.9 42.9
55.3 42.1 64.8 50.5
26.3 14 10 15.6
36.8 16.1 37.7 31.7
a Values in boldface indicate statistical significance: P < 0.05. See text for exact P values. 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? Q10: Do you think epilepsy is contagious?
(21.9%), sexual intercourse (5.5%), waste gas (5.5%), and blood (4.4%). The most often cited causes of epilepsy were brain disease (43.3%), heredity (26.3%), mental disorder (20.1%), and witchcraft Table 3 Understanding of and practices concerning epilepsy.a Cause of epilepsy (Q8) Brain disease Hereditary Birth defect Mental/emotional disorder Blood disorder Witchcraft Don’t know Manifestation of epilepsy (Q9) Convulsion Loss of consciousness Periods of amnesia Changes in behavior Other Treatment suggestions (Q12) Medical doctor God’s help Herbal medicine doctor Traditional healer Acupuncture Don’t know Witchdoctor Untreatable No need Number of responses a
Multiple choices were allowed.
43.3% 26.3% 4.8% 20.1% 7.7% 13.7% 28.3% 53.0% 52.5% 15.3% 17.1% 5.4% 82.5% 49.9% 11.8% 16.6% 6.6% 4.2% 0.9% 6.1% 0.4% 455
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(13.7%). Almost one-third of the participants could not name a cause of epilepsy. Convulsions and loss of consciousness were each identified as manifestations of seizures by about half of the respondents. Periods of amnesia (15.3%) and changes in behavior (17.1%) were also mentioned as symptoms of seizures (Table 3). Most of our sample population would recommend modern medicine (82.5%) for the treatment of epilepsy, although half of them endorsed divine help. Traditional healers (16.6%), herbalists (11.8%), and acupuncture (6.6%) were also recommended. A negligible proportion of the sample would recommend a witchdoctor, and 6.6% thought epilepsy cannot be treated.
more ready to offer employment equally to PWE (P = 0.0001) Neither acquaintance with PWE nor familiarity with seizures appeared to influence attitudes toward PWE and understanding of the disease (Table 4).
3.4. Relationship between beliefs about, attitudes toward, and familiarity with epilepsy
4.1. Familiarity with epilepsy
4. Discussion The main objective of our study was to assess familiarity with epilepsy, identify determinants of negative perceptions of and attitudes toward people with epilepsy, and compare our findings with other studies in Cameroon and abroad.
Our results show a high familiarity with epilepsy in Ebolowa and Sangmelima. The values, however, were lower than those reported in Batibo [8] and Badisssa (unpublished) communities, which are respectively suspected and confirmed [6] areas of high epilepsy prevalence in rural Cameroon (Table 5). We had suggested in an earlier report that the high level of familiarity with epilepsy could be an indirect reflection of the magnitude of the problem [8]. An alternative explanation is that acquaintance with PWE is likely to be higher in open rural communities like Batibo and Badissa where many people know each other than in urban communities like Ebolowa and Sangmelima. The small proportion of people who had read about epilepsy contrasts with the high educational level of our study population (95% had at least secondary education). Moreover, the level of education did not appear to significantly improve one’s chances of having read about epilepsy. This finding may suggest that most of the knowledge on epilepsy has been obtained through beliefs and myths that have been passed down orally or through acquaintance with PWE and observation of seizures. The implication of this finding is important in the choice of educational and sensitization material for this population.
Generally, the belief that epilepsy is contagious or is caused by witchcraft had little influence on attitudes toward PWE. However, those who believed that epilepsy is hereditary were more likely to object to their children marrying someone with epilepsy (P = 0.02), whereas those who did not associate epilepsy with insanity were
Table 4 Relationship between attitudes toward, understanding of, and familiarity with epilepsy.a No. of responses
Total Hereditary Yes No Witchcraft Yes No Contagious Yes No Insanity Yes No Seen a seizure Yes No Know PWE Yes No
Yes (%) Q4
Q5
Q6
456
26.9
39.6
58.3
120 337
20.8 29.1
47.5a 36.8
60.5 57.6
63 394
27 26.9
39.7 39.6
66.7 57
152 300
31.6 24.3
40.8 38.7
61.8 57.2
59 397
22 27.7
33.9 40.6
34.5 61.7
348 104
27.6 28.2
40.5 36.8
58.6 57.2
332 124
27.7 24.8
37.6 40.4
56.2 64
4.2. Attitudes toward epilepsy The attitudes of our sample population toward PWE are at least two times better than those reported for the Batibo [8] and Badissa (unpublished) communities in rural Cameroon (Table 5). The attitudes were also better than those reported in other African countries [10,12,13] and more developed countries like Vietnam [3], Italy [4], and Austria [5]. Differences in cultural values and belief systems between these communities and the different study periods could account for the differences observed. Discrimination against PWE with respect ot marriage was about two times higher than association with PWE but was not influenced by level of education. This is similar to our observation in
a Values in bold indicate statistical significance: P < 0.05. See text for exact P values. 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?
Table 5 Comparison of data on familiarity and attitudes with data from other studies in Cameroon: Percentage of affirmative responses. Study area/year
Study population
Q1
Q2
Q3
Q4
Q5
Q6
Batibo 2006 [8] Badissa 2006a Batibo 2006 [7] Yaounde 2006 [9] Ebolowa and Sangmelima 2006
Community (rural) Community (rural) Secondary students (rural) Medical students and M.D.s Community (urban)
99.3 100.0 95.5 99.5 99.6
89.7 98.7 73.3 66 72.6
87.7 97.5 76.4 78.9 76.8
42.7 26.2 25.4 14.6 26.9
75.8 32.3 64.2 45.7 39.6
35.1 55.5 58.6 15 58.3
a
Q1: Q2: Q3: Q4: Q5: Q6:
Njamnshi et al. (unpublished). Have you heard or read about the disease called ‘‘epilepsy” or convulsive seizure? Do you know anyone who has or had epilepsy? Have you ever seen someone who was having a seizure? Would you object to your children associating with someone who sometimes had seizures? Would you object if your son or daughter wanted to marry a person who sometimes had seizures? Do you think people with epilepsy should be employed in jobs like others?
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a recently published study [8] and was attributed to traditional African views that place the community’s desires above those of the individuals in the traditional marriage system [17]. The fact that education did not influence attitudes toward PWE contrasts with findings in a study of a Nigerian urban population, where education improved attitudes toward PWE [13]. Students and young people below 30 years of age were the most likely to favor employment of PWE. This supports our observation in an earlier study that young people in schools may constitute a good communication channel to improve on the attitudes of the general population toward PWE [7]. The beliefs that epilepsy is hereditary and epilepsy is a kind of insanity appeared to reinforce prejudice against marriage to and employment of PWE, respectively. On the whole, however, traditional beliefs hardly influenced attitudes toward PWE in this population (Table 4), in contrast with the results of a survey of a rural Cameroonian population [8]. Acquaintance with PWE did not appear to influence attitudes toward them, as we observed earlier [8]. This can be explained by the situation of forced disclosure of the condition [18]. The explanation of this situation is twofold. First, living in an open rural or suburban community means many people know one another and one is less likely to keep his or her condition a secret. Second, the high epilepsy treatment gap in Africa means that most PWE have uncontrolled seizures and are therefore prone to have them in public. 4.3. Understanding of and practices concerning epilepsy About 34% of respondents thought epilepsy is contagious, and this result was better than those reported in rural Cameroon (40%) [8], Tanzania (40.6%) [10], Ethiopia (45%) [19], and Senegal (35%) [14]. Approximately 13% of our subjects linked epilepsy to insanity and this misconception was better than results of studies in more developed countries like Vietnam (23.8%) [3], South India (27%) [20], and Korea (29%) [21]. Knowledge of the cause of epilepsy was fairly good: 43.3 and 26.3% of respondents mentioned brain disease and heredity, respectively. This was better than the 19% each of those who reported brain disease and heredity in an urban Nigerian population [13]. Fewer people linked epilepsy to witchcraft in the current study (13.7%) as compared with rural Cameroonian (34.7%) [8] and urban Ghanaian (27.9%) [12] populations. These differences can be explained by the possible variation in beliefs and cultures between these communities. Convulsions and loss of consciousness were each cited by about half of the respondents as manifestations of epilepsy. Similar observations were made in other studies in Cameroon [8] and Nigeria [13], and this was attributed to the easily noticeable nature of these symptoms. The higher values for convulsions (79.8%) and loss of consciousness (69.2%) in the Batibo community, which is a suspected area of high epilepsy prevalence in Northwest Region of Cameroon, compared with our current study population with a probably lower epilepsy prevalence, supports the hypothesis that most of this knowledge on epilepsy is obtained from observation of seizures or acquaintance with PWE. As subjects were recruited in health facilities, it was not surprising that about five times more people would recommend modern medicine over a traditional healer for the treatment of epilepsy. 4.4. Limitations The study design evidently had a selection bias because it was hospital-based. Ideally, we should have carried out a door-to-door
survey, but this design was limited by the available material, financial, and human resources. 5. Conclusions There is a high level of awareness with respect to epilepsy in Ebolowa and Sangmelima, just as in other areas in Cameroon. Unlike other parts of Cameroon, attitudes toward people with epilepsy in these communities in the South Region are better. Furthermore, the attitudes reported in our study are better than those reported in other African countries and some developed countries. Determinants of negative attitudes are the beliefs that epilepsy is hereditary and epilepsy is a form of insanity. These results demonstrate a regional variation in awareness and attitudes with respect to epilepsy and suggest that urban and semiurban populations may constitute targets as well as channels for epilepsy sensitization campaigns in Cameroon. Contributors A.K.N. conceived the study; A.K.N. and W.F.T.M. designed the study. D.F. collected the data. A.K.N., D.F., and S.A.A. analyzed the data and wrote the article. A.K.N., D.F., S.A.A., F.N.Y., E.N.T., F.F.A. III, and W.F.T.M. made critical contributions to improve the scientific content of and approved the final draft of the article. Conflict of interest statement The authors have no conflicts of interest to declare. Acknowledgments Special thanks to the volunteers in Ebolowa and Sangmelima who agreed to answer our questions and to the Regional Delegate of Public Health for the South for logistic assistance. References [1] WHO Regional Office for Africa and ILAE/IBE/WHO Global Campaign Against Epilepsy (2004). Epilepsy in the WHO African region: bridging the gap [online]. 2000 [cited September 2006]; Available from: http://www.who.int/ mentalhealth/management/epilepsy-in-african-region. [2] Andriantseheno LM, Rakotorivony. Aspects socioculturels de l’épilepsie chez le malgache. Enquête CAP faite à Antananarivo. Paper presented at the 3ème congrès de neurologie tropicale, 30 November–2 December 1998, Fort -deFrance, Martinique. [3] 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. [4] Canger R, Cornaggia C. Public attitudes toward epilepsy in Italy: results of a survey and comparison with USA and West Germany data. Epilepsia 1985;26:221–6. [5] Spatt J, Bauer G, Baumgartner C, et al. For the Austrian Section of the International League Against Epilepsy. Predictors of negative attitudes towards subjects with epilepsy: a representative survey in the general public in Austria. Epilepsia 2005;46:736–42. [6] Njamnshi AK, Dongmo L, Sini V, et al. Epilepsy in rural Cameroon: the alarming prevalence rates in the Mbam valley [abstract]. J Neurol Sci 2005;238(Suppl. 1):S136. [7] Njamnshi AK, Angwafor SA, Jallon P, Muna WFT. Secondary school students’ knowledge, attitudes and practice towards epilepsy in the Batibo Health District Cameroon. Epilepsia 2008. Epub ahead of print. doi: 10.1111/j.15281167.2008.01809.x. [8] Njamnshi AK, Angwafor SA, Tabah EN, Jallon P, Muna WFT. General public knowledge, attitudes and practice towards epilepsy in the Batibo Health District, Cameroon. Epilepsy Behav 2009;14:83–8. [9] Njamnshi AK, Angwafor SA, Baumann F, Jallon P, Angwafo F III, Muna WFT. Knowledge, attitudes and practice of Cameroonian medical students and graduating physicians towards epilepsy. Epilepsia. EPI-00861-2008. [10] Matuja WB, Rwiza HT. Knowledge, attitude and practice towards epilepsy in secondary school students in Tanzania. Rev Neurol 1998;26:1064–8. [11] Senanayake N, Roman GC. Epidemiolgy of epilepsy in developing countries. Bull Org Mond Santé 1993;71:247–58.
A.K. Njamnshi et al. / Epilepsy & Behavior 14 (2009) 628–633 [12] Nyame PK, Biriwum RB. Epilepsy: knowledge, attitude and practice in literate urban population, Accra, Ghana. West Afr J Med 1997;16:139–45. [13] Kabir M, Iliyasu Z, Abubakar AS, Kabir ZS, Farinyaro AS. Knowledge, attitude and beliefs about epilepsy among adults in a Northern Nigerian urban community. Ann Afr Med 2005;4:107–12. [14] 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. [15] Gambhir SK, Kumar V, Singhi PD, et al. Public awareness, understanding and attitudes toward epilepsy. Indian J Med Res 1995;102:34–8. [16] Hills MD. Mackenzie HC New Zealand community attitudes towards people with epilepsy. Epilepsia 2002;43:1583–9.
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Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Public awareness, perceptions, and attitudes with respect to epilepsy in Ebolowa and Sangmelima—Urban Cameroon Alfred K. Njamnshi a,b,*, Faustin N. Yepnjio b,c, Earnest N. Tabah b,d, Fidèle Dema b,e, Samuel A. Angwafor b,f, Julius Y. Fonsah b, Fru F. Angwafo III g,h, Walinjom F.T. Muna a a
Department of Internal Medicine and Specialties, Faculty of Medicine and Biomedical Sciences, University of Yaounde I, Yaounde, Cameroon Neurology Department, Central Hospital Yaounde, Yaounde, Cameroon c Fann University Hospital Centre, Dakar, Senegal d Department of Disease Control, Ministry of Public Health, Yaounde, Cameroon e Sa’a District Hospital, Cameroon f Batibo District Hospital, Cameroon g Department of Surgery, Faculty of Medicine and Biomedical Sciences, University of Yaounde I, Yaounde, Cameroon h Ministry of Public Health, Yaounde, Cameroon b
a r t i c l e
i n f o
Article history: Received 14 December 2008 Revised 19 January 2009 Accepted 22 January 2009 Available online 4 February 2009 Keywords: Epilepsy Awareness Attitudes Beliefs Ebolowa and Sangmelima Suburban Cameroon
a b s t r a c t Within the framework of a series of studies mandated by the Ministry of Public Health of Cameroon to obtain baseline data for an epilepsy education program adapted to our communities, we interviewed 456 subjects without epilepsy in the Ebolowa Regional and Sangmelima District Hospitals. We found that 99.6 and 72.6% had heard or knew a person or people with epilepsy (PWE) and 76.8% had seen a seizure. About 58% of respondents would offer equal employment opportunities to PWE; 39.6% and 33.6% would respectively object to their children associating with or marrying PWE; 13% associated epilepsy with insanity and witchcraft, whereas 82.5% would recommend modern treatment for epilepsy. Predictors of negative attitudes were the beliefs that epilepsy is hereditary (26.3%) and epilepsy is a form of insanity (13%). Familiarity with epilepsy in Ebolowa and Sangmelima is high, and attitudes toward PWE are better there than in other areas of Cameroon. These results demonstrate a regional variation in public awareness and attitudes toward epilepsy and suggest that urban populations may constitute targets as well as channels for epilepsy sensitization campaigns in Cameroon. Ó 2009 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is the commonest neurological brain disorder worldwide [1]. There is a broad variation in the perception of this condition depending on the region and culture considered [2]. Many studies around the world have shown great variations in perceptions of, attitudes toward, and practices concerning epilepsy [2– 5]. Although Cameroon is among the most affected countries in the world [6], few such studies have been carried out in this country [7–9]. Given the reported and suspected high prevalence rates of epilepsy in some areas of Cameroon, the Ministry of Public Health has elaborated a National Epilepsy Control Programme that was recently implemented in the country. One of the activities of this program is to carry out nationwide surveys to ascertain the influence of Cameroon’s broad cultural variation on perceptions of and practices concerning epilepsy. It is within this framework that we carried out the current study in Ebolowa and Sangmelima,
* Corresponding author. Address: Neurology Department, Central Hospital Yaounde, P.O. Box 25625, Yaounde, Cameroon. Fax: +237 223 45 79. E-mail address: [email protected] (A.K. Njamnshi). 1525-5050/$ - see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2009.01.021
which are urban areas in the South Region (province) of Cameroon. Our main goal was to identify determinants of inappropriate attitudes toward and practices concerning epilepsy in these communities and to compare our findings with parallel studies in rural Cameroon [7,8] and similar studies in developing [3,10–14] and more developed [4,5,15,16] countries. The results from this study and others in the series will provide baseline data for an epilepsy education program adapted to our communities in Cameroon. 2. Methods 2.1. Place of study Cameroon is a country in the Central African subregion with an estimated population of about 16 million inhabitants in 10 administrative regions (see Fig. 1). Ebolowa and Sangmelima are urban towns in the South Region with respectively 97,589 and 80,000 inhabitants. Ebolowa is the capital city of Mvila Division which has a surface area of 8.697 km2, and Sangmelima, is the capital of Dja and Lobo Division with an area of 19.911 km2. The two towns are in the middle of the Cameroonian equatorial forest, and most of
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2.2. Participants We consecutively interviewed 226 and 230 adult subjects, visitors, and caregivers, 18 years of age and older, who provided informed consent to a hospital-based survey in the Ebolowa Regional Hospital and Sangmelima District Hospital, respectively. People with previous or current seizures were excluded from the study. 2.3. Questionnaire and interviews Each questionnaire form contained 12 questions in English and French designed to evaluate knowledge, attitudes, and practices with respect to epilepsy. The questionnaire was identical to that adapted and used by our study group in previous studies in Cameroon [7–9]. The face-to-face interviews were conducted consecutively by one of the co-authors (F.D.) in the Ebolowa Regional Hospital and Sangmelima District Hospital in 2006. 2.4. Ethical issues Ethical clearance was obtained from the National Ethics Committee and an Administrative Authorisation for Research was issued by the Minister of Public Health of Cameroon. All participants gave informed consent. 2.5. Data analysis
Fig. 1. Map of Cameroon showing the 10 administrative regions and the health districts of Ebolowa and Sangmelima. Adapted from Wikipedia free encyclopedia (http://en.wikipedia.org/wiki/Image: Administrative Regions (Provinces) of Cameroon EN.svg).
the inhabitants practice subsistence agriculture. Ebolowa has two hospitals (the Regional Hospital and a private hospital) and a nursing school. Sangmelima, on the other hand, has a District Hospital. The town of Ebolowa is in the Ebolowa Health District, and Sangmelima is in the Sangmelima Health District (see Fig. 2). The South Regional Delegation of Public Health supervises all health activities within the region.
Data were analyzed for statistical significance using EpiInfo Version 3.3.2 software (Centers for Disease Control and Prevention, Atlanta; Division of Integrated Surveillance Systems and Services, Atlanta, GA, USA). v2 tests were used to examine the association between responses and each demographic variable in a univariate analysis. We also used a v2 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. 3. Results Four hundred fifty-six of the 500 invited subjects agreed to be interviewed, yielding a response rate of 91%. Participants’ ages ranged from 18 to 75 years, with a mean of 27.4 ± 10.4. The main
Fig. 2. Map of South Regional Delegation of Public Health showing Ebolowa and Sangmelima Health Districts.
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occupation was agriculture, and 44.7% of the study sample practiced peasant farming.
Table 2 Responses to questions on attitudes toward and understanding of epilepsy by demographic variables.a
3.1. Familiarity with epilepsy
No. of responses
Although almost every participant (99.6%) had heard about epilepsy, only 12.3% had read about the disease. Nearly three of four subjects had witnessed a seizure (72.6%), and 76.8% knew someone with epilepsy. Observing a seizure was significantly associated with advanced age (P = 0.01), having more than five offspring (P = 0.03), and having had higher education (P = 0.05) (Table 1). 3.2. Attitudes toward epilepsy About 58% of respondents would offer equal employment opportunities to PWE, whereas 39.6% and 33.6% would respectively object to their children associating with and marrying someone with epilepsy. Age below 30 years and student status were associated with more positive attitudes with respect to employment of PWE (P = 0.01 and 0.004, respectively) (Table 2). 3.3. Understanding of and practices concerning epilepsy About 13% of respondents linked epilepsy to insanity. This belief was significantly associated with having many offspring, having an elementary education, and practicing agriculture (P = 0.03 in each case). The belief that epilepsy is contagious was held by 33.6% of participants, and this percentage was higher among females and those who practiced agriculture (P = 0.03 and 0.02, respectively). For those who considered epilepsy a contagious condition, the means of transmission most often mentioned were: saliva
Table 1 Responses to questions on familiarity with epilepsy by demographic variables.a
Total Age 18–29 30–49 >50 Sex Male Female Marital status Single Divorced Married Widowed Offspring 0 1–5 >5 Education None Primary Secondary Higher education Occupation Agriculture Civil servant Pupil/student Other
No. of responses
Yes (%) Q1a
Q1b
Q2
Q3
456
99.6
12.3
72.6
76.8
311 133 12
99.4 100 100
10.6 15.8 16.7
69.9 78.2 83.3
73.4 82.7 100.0a
256 200
99.2 100
12.8 11.5
72.4 73
78.2 75
326 4 123 3
99.7 100 99.2 100
12.2 25 9.8 100
70 50 80.5 66.7
74 75 83.7 100
267 154 34
99.6 99.4 100
11.2 14.9 12.3
69.8 72.7 94.1
74.3 77.3 94.1
0 24 381 51
0 100 99.7 98
0 16.7 11.5 15.7
0 62.5 72.5 78.4
0 70.8 75.4 90.2
38 57 270 91
100 100 99.6 98.9
15.8 19.8 11.8 7.7
68.4 84.2 69.7 75.8
81.6 86 74.9 74.7
a Values in boldface indicate statistical significance: P < 0.05. See text for exact P values Q1: Have you heard (Q1a) or read (Q1b) 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?
Total Age 18–29 30–49 >50 Sex Male Female Marital status Single Divorced Married Widowed Offspring 0 1–5 >5 Education None Primary Secondary Higher education Occupation Agriculture Civil servant Pupil/student Other
456
Yes (%) Q4
Q5
Q6
Q7
Q10
16.9
39.6
58.3
12.9
33.6
a
311 133 12
24.4 32.3 33.3
39.1 39.1 58.3
62.7 50.4 33.3
11.6 15 25
36.2 27.5 33.3
256 200
26.5 20.7
41.2 37.5
53.9 64.3
12.5 13.6
29.9 38.4
326 4 123 3
25.4 50 30.9 0
40.1 50 39 0
63.2 75 44.7 66.7
11.6 25 16.4 0
35.1 25 30.1 33.3
267 154 34
23.9 29.2 38.2
38.8 39.6 47.1
65.9 50.6 32.4
10.1 15 26.5
35.8 31.6 26.5
0 24 381 51
0 33.3 26.4 27.5
0 33.3 39.8 41.2
0 37.5 60.4 52.9
0 29.2 12.6 7.8
0 56.5 33.2 26
38 57 270 91
23.7 26.3 25.5 33
28.9 4.4 39.9 42.9
55.3 42.1 64.8 50.5
26.3 14 10 15.6
36.8 16.1 37.7 31.7
a Values in boldface indicate statistical significance: P < 0.05. See text for exact P values. 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? Q10: Do you think epilepsy is contagious?
(21.9%), sexual intercourse (5.5%), waste gas (5.5%), and blood (4.4%). The most often cited causes of epilepsy were brain disease (43.3%), heredity (26.3%), mental disorder (20.1%), and witchcraft Table 3 Understanding of and practices concerning epilepsy.a Cause of epilepsy (Q8) Brain disease Hereditary Birth defect Mental/emotional disorder Blood disorder Witchcraft Don’t know Manifestation of epilepsy (Q9) Convulsion Loss of consciousness Periods of amnesia Changes in behavior Other Treatment suggestions (Q12) Medical doctor God’s help Herbal medicine doctor Traditional healer Acupuncture Don’t know Witchdoctor Untreatable No need Number of responses a
Multiple choices were allowed.
43.3% 26.3% 4.8% 20.1% 7.7% 13.7% 28.3% 53.0% 52.5% 15.3% 17.1% 5.4% 82.5% 49.9% 11.8% 16.6% 6.6% 4.2% 0.9% 6.1% 0.4% 455
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(13.7%). Almost one-third of the participants could not name a cause of epilepsy. Convulsions and loss of consciousness were each identified as manifestations of seizures by about half of the respondents. Periods of amnesia (15.3%) and changes in behavior (17.1%) were also mentioned as symptoms of seizures (Table 3). Most of our sample population would recommend modern medicine (82.5%) for the treatment of epilepsy, although half of them endorsed divine help. Traditional healers (16.6%), herbalists (11.8%), and acupuncture (6.6%) were also recommended. A negligible proportion of the sample would recommend a witchdoctor, and 6.6% thought epilepsy cannot be treated.
more ready to offer employment equally to PWE (P = 0.0001) Neither acquaintance with PWE nor familiarity with seizures appeared to influence attitudes toward PWE and understanding of the disease (Table 4).
3.4. Relationship between beliefs about, attitudes toward, and familiarity with epilepsy
4.1. Familiarity with epilepsy
4. Discussion The main objective of our study was to assess familiarity with epilepsy, identify determinants of negative perceptions of and attitudes toward people with epilepsy, and compare our findings with other studies in Cameroon and abroad.
Our results show a high familiarity with epilepsy in Ebolowa and Sangmelima. The values, however, were lower than those reported in Batibo [8] and Badisssa (unpublished) communities, which are respectively suspected and confirmed [6] areas of high epilepsy prevalence in rural Cameroon (Table 5). We had suggested in an earlier report that the high level of familiarity with epilepsy could be an indirect reflection of the magnitude of the problem [8]. An alternative explanation is that acquaintance with PWE is likely to be higher in open rural communities like Batibo and Badissa where many people know each other than in urban communities like Ebolowa and Sangmelima. The small proportion of people who had read about epilepsy contrasts with the high educational level of our study population (95% had at least secondary education). Moreover, the level of education did not appear to significantly improve one’s chances of having read about epilepsy. This finding may suggest that most of the knowledge on epilepsy has been obtained through beliefs and myths that have been passed down orally or through acquaintance with PWE and observation of seizures. The implication of this finding is important in the choice of educational and sensitization material for this population.
Generally, the belief that epilepsy is contagious or is caused by witchcraft had little influence on attitudes toward PWE. However, those who believed that epilepsy is hereditary were more likely to object to their children marrying someone with epilepsy (P = 0.02), whereas those who did not associate epilepsy with insanity were
Table 4 Relationship between attitudes toward, understanding of, and familiarity with epilepsy.a No. of responses
Total Hereditary Yes No Witchcraft Yes No Contagious Yes No Insanity Yes No Seen a seizure Yes No Know PWE Yes No
Yes (%) Q4
Q5
Q6
456
26.9
39.6
58.3
120 337
20.8 29.1
47.5a 36.8
60.5 57.6
63 394
27 26.9
39.7 39.6
66.7 57
152 300
31.6 24.3
40.8 38.7
61.8 57.2
59 397
22 27.7
33.9 40.6
34.5 61.7
348 104
27.6 28.2
40.5 36.8
58.6 57.2
332 124
27.7 24.8
37.6 40.4
56.2 64
4.2. Attitudes toward epilepsy The attitudes of our sample population toward PWE are at least two times better than those reported for the Batibo [8] and Badissa (unpublished) communities in rural Cameroon (Table 5). The attitudes were also better than those reported in other African countries [10,12,13] and more developed countries like Vietnam [3], Italy [4], and Austria [5]. Differences in cultural values and belief systems between these communities and the different study periods could account for the differences observed. Discrimination against PWE with respect ot marriage was about two times higher than association with PWE but was not influenced by level of education. This is similar to our observation in
a Values in bold indicate statistical significance: P < 0.05. See text for exact P values. 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?
Table 5 Comparison of data on familiarity and attitudes with data from other studies in Cameroon: Percentage of affirmative responses. Study area/year
Study population
Q1
Q2
Q3
Q4
Q5
Q6
Batibo 2006 [8] Badissa 2006a Batibo 2006 [7] Yaounde 2006 [9] Ebolowa and Sangmelima 2006
Community (rural) Community (rural) Secondary students (rural) Medical students and M.D.s Community (urban)
99.3 100.0 95.5 99.5 99.6
89.7 98.7 73.3 66 72.6
87.7 97.5 76.4 78.9 76.8
42.7 26.2 25.4 14.6 26.9
75.8 32.3 64.2 45.7 39.6
35.1 55.5 58.6 15 58.3
a
Q1: Q2: Q3: Q4: Q5: Q6:
Njamnshi et al. (unpublished). Have you heard or read about the disease called ‘‘epilepsy” or convulsive seizure? Do you know anyone who has or had epilepsy? Have you ever seen someone who was having a seizure? Would you object to your children associating with someone who sometimes had seizures? Would you object if your son or daughter wanted to marry a person who sometimes had seizures? Do you think people with epilepsy should be employed in jobs like others?
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a recently published study [8] and was attributed to traditional African views that place the community’s desires above those of the individuals in the traditional marriage system [17]. The fact that education did not influence attitudes toward PWE contrasts with findings in a study of a Nigerian urban population, where education improved attitudes toward PWE [13]. Students and young people below 30 years of age were the most likely to favor employment of PWE. This supports our observation in an earlier study that young people in schools may constitute a good communication channel to improve on the attitudes of the general population toward PWE [7]. The beliefs that epilepsy is hereditary and epilepsy is a kind of insanity appeared to reinforce prejudice against marriage to and employment of PWE, respectively. On the whole, however, traditional beliefs hardly influenced attitudes toward PWE in this population (Table 4), in contrast with the results of a survey of a rural Cameroonian population [8]. Acquaintance with PWE did not appear to influence attitudes toward them, as we observed earlier [8]. This can be explained by the situation of forced disclosure of the condition [18]. The explanation of this situation is twofold. First, living in an open rural or suburban community means many people know one another and one is less likely to keep his or her condition a secret. Second, the high epilepsy treatment gap in Africa means that most PWE have uncontrolled seizures and are therefore prone to have them in public. 4.3. Understanding of and practices concerning epilepsy About 34% of respondents thought epilepsy is contagious, and this result was better than those reported in rural Cameroon (40%) [8], Tanzania (40.6%) [10], Ethiopia (45%) [19], and Senegal (35%) [14]. Approximately 13% of our subjects linked epilepsy to insanity and this misconception was better than results of studies in more developed countries like Vietnam (23.8%) [3], South India (27%) [20], and Korea (29%) [21]. Knowledge of the cause of epilepsy was fairly good: 43.3 and 26.3% of respondents mentioned brain disease and heredity, respectively. This was better than the 19% each of those who reported brain disease and heredity in an urban Nigerian population [13]. Fewer people linked epilepsy to witchcraft in the current study (13.7%) as compared with rural Cameroonian (34.7%) [8] and urban Ghanaian (27.9%) [12] populations. These differences can be explained by the possible variation in beliefs and cultures between these communities. Convulsions and loss of consciousness were each cited by about half of the respondents as manifestations of epilepsy. Similar observations were made in other studies in Cameroon [8] and Nigeria [13], and this was attributed to the easily noticeable nature of these symptoms. The higher values for convulsions (79.8%) and loss of consciousness (69.2%) in the Batibo community, which is a suspected area of high epilepsy prevalence in Northwest Region of Cameroon, compared with our current study population with a probably lower epilepsy prevalence, supports the hypothesis that most of this knowledge on epilepsy is obtained from observation of seizures or acquaintance with PWE. As subjects were recruited in health facilities, it was not surprising that about five times more people would recommend modern medicine over a traditional healer for the treatment of epilepsy. 4.4. Limitations The study design evidently had a selection bias because it was hospital-based. Ideally, we should have carried out a door-to-door
survey, but this design was limited by the available material, financial, and human resources. 5. Conclusions There is a high level of awareness with respect to epilepsy in Ebolowa and Sangmelima, just as in other areas in Cameroon. Unlike other parts of Cameroon, attitudes toward people with epilepsy in these communities in the South Region are better. Furthermore, the attitudes reported in our study are better than those reported in other African countries and some developed countries. Determinants of negative attitudes are the beliefs that epilepsy is hereditary and epilepsy is a form of insanity. These results demonstrate a regional variation in awareness and attitudes with respect to epilepsy and suggest that urban and semiurban populations may constitute targets as well as channels for epilepsy sensitization campaigns in Cameroon. Contributors A.K.N. conceived the study; A.K.N. and W.F.T.M. designed the study. D.F. collected the data. A.K.N., D.F., and S.A.A. analyzed the data and wrote the article. A.K.N., D.F., S.A.A., F.N.Y., E.N.T., F.F.A. III, and W.F.T.M. made critical contributions to improve the scientific content of and approved the final draft of the article. Conflict of interest statement The authors have no conflicts of interest to declare. Acknowledgments Special thanks to the volunteers in Ebolowa and Sangmelima who agreed to answer our questions and to the Regional Delegate of Public Health for the South for logistic assistance. References [1] WHO Regional Office for Africa and ILAE/IBE/WHO Global Campaign Against Epilepsy (2004). Epilepsy in the WHO African region: bridging the gap [online]. 2000 [cited September 2006]; Available from: http://www.who.int/ mentalhealth/management/epilepsy-in-african-region. [2] Andriantseheno LM, Rakotorivony. Aspects socioculturels de l’épilepsie chez le malgache. Enquête CAP faite à Antananarivo. Paper presented at the 3ème congrès de neurologie tropicale, 30 November–2 December 1998, Fort -deFrance, Martinique. [3] 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. [4] Canger R, Cornaggia C. Public attitudes toward epilepsy in Italy: results of a survey and comparison with USA and West Germany data. Epilepsia 1985;26:221–6. [5] Spatt J, Bauer G, Baumgartner C, et al. For the Austrian Section of the International League Against Epilepsy. Predictors of negative attitudes towards subjects with epilepsy: a representative survey in the general public in Austria. Epilepsia 2005;46:736–42. [6] Njamnshi AK, Dongmo L, Sini V, et al. Epilepsy in rural Cameroon: the alarming prevalence rates in the Mbam valley [abstract]. J Neurol Sci 2005;238(Suppl. 1):S136. [7] Njamnshi AK, Angwafor SA, Jallon P, Muna WFT. Secondary school students’ knowledge, attitudes and practice towards epilepsy in the Batibo Health District Cameroon. Epilepsia 2008. Epub ahead of print. doi: 10.1111/j.15281167.2008.01809.x. [8] Njamnshi AK, Angwafor SA, Tabah EN, Jallon P, Muna WFT. General public knowledge, attitudes and practice towards epilepsy in the Batibo Health District, Cameroon. Epilepsy Behav 2009;14:83–8. [9] Njamnshi AK, Angwafor SA, Baumann F, Jallon P, Angwafo F III, Muna WFT. Knowledge, attitudes and practice of Cameroonian medical students and graduating physicians towards epilepsy. Epilepsia. EPI-00861-2008. [10] Matuja WB, Rwiza HT. Knowledge, attitude and practice towards epilepsy in secondary school students in Tanzania. Rev Neurol 1998;26:1064–8. [11] Senanayake N, Roman GC. Epidemiolgy of epilepsy in developing countries. Bull Org Mond Santé 1993;71:247–58.
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