Perceptions of epilepsy among black students at a University in South Africa

The present study sought to investigate the relationship between familiarity, attitudes, causative and treatment beliefs about epilepsy in a sample of black young adults (university students) in South Africa. The sample included a convenient sample of 253 second year social science students, 98 (38.7%) males and 155 (61.3%) females in the age range from 18 to 42 years (A/=25.0 years, (SD=4.2). The questionnaire administered to students in a class room situation included sociodemographic data, and sections on familiarity, beliefs about cause and treatment, sources of information, attitudes about epileptics, and prevention of epilepsy. Results showed that the majority of students, in particular from a rural background, were familiar with epilepsy. Health care institutions were the most important source of information on epilepsy, especially for women. Those who believed in traditional causes of epilepsy also endorsed traditional treatment for it, though they did not see such treatment as curative. Those who believed in a medical treatment did however see such treatment as curative. Although the majority of the students had a positive attitude towards epileptics through sharing a meal or room and willingness to marry an epileptic, 17% thought that epileptics can infect others with their saliva during a seizure, 12% felt an epileptic is a witch or wizard, and about 10% said an epileptic must be isolated. Findings should be included in educational programmes for young adults. Introduction A seizure (fit) is the clinical manifestation of abnormal and excessive discharge from nerve cells in the brain. Seizures are classified as provoked (that is, secondary to another dis­ ease such as a parasitic infestation or a brain tumor) or as unprovoked idiopathic (that is, without an identifiable pre­ cipitating disease or injury). Epilepsy is a disorder of recur­ rent unprovoked seizures. The prevalence rate in African coun­ tries has been three to five times higher than in industrial countries. This is explicable in part by more adverse events in utero, higher likelihood of injury, lack of access to treat­ ment, and parasitic diseases. Desjarlais, Eisenberg, Good & Kleinman (1995: 169) note that why 90% of epileptic pa­ tients in a number of African societies do not receive bio­ medical treatment that has proven efficacy is a social ques­ tion. Epilepsy is not unique among neurological disorders in hav­ ing psychosocial consequences, but many myths, misconcep­ tions and prejudices surround epilepsy, and persons with epi­ lepsy face negative societal attitudes and discrimination (McQueen & Swartz 1995: 859). Epilepsy may be attributed to spirit possession or transgression of ancestral taboos. A person with epilepsy may be shunned and barred from all social intercourse. Marriage may be proscribed for the pa­ tient and other family members. Because of the stigma asso­ ciated with the disease, families often hide afflicted children. In an area of central Ethiopia with an epilepsy prevalence of 5.2 per thousand, a door-to-door survey of 1,500 households revealed that 45% of those interviewed believed the disorder could be transmitted by physical contact at the time of the attack; three-quarters would not allow a family member to marry a patient with epilepsy and would not employ such a person (Tekle-Haimanot, Abebe, Forsgren et al. 1991: 1363). In many developing countries knowledge about the cause, treatment and cure of epilepsy come from apparently contra­ dictory sources. For instance, in different South African soci­ eties, the influence of non-medical beliefs is still strong. McQueen, Swartz and Perfile (1995: 209) note about epilepsy and stigma in a South African rural and urban community that attributions of epilepsy to supernatural causes such as witchcraft were reasonably common, as was use of indigenous healing in addition to biomedicine. Among Northern Sotho traditional healers in South Africa it was found that epilepsy belongs to the major conditions treated by traditional healers. From 18 healers who treated epilepsy 12 said the cause was physical or natural and 6 attributed it to supernatural causes (witchcraft and violation of taboo) (Peltzer 1998a: 194). The choice of treatment for epilepsy was seen by 70 adult villag­ ers in South Africa as 71% traditional or faith healer, 16% medical and 13% do not know (Peltzer 1998b: 251). Few in­ digenous medicine men know how to treat convulsive disor­ ders effectively and except for some herbal remedies, their treatment mostly consists of ritual procedures performed for the patient and the protection of other family members against the dreaded affliction. Epilepsy therefore takes its natural course and the patients may suffer continued uncontrolled seizures (Jilek-Aall & Jilek 1989: 36If.). The fact that biomedical medicine can provide effective treat­ ment should not however rule out a role for traditional treat­ ments, if they are beneficial. A step to effective integration is to understand how African people view medical and non­ medical (traditional) ideas about cause and treatment, and how these relate to the belief that epilepsy can be effectively treated (Shaba, MacLachlan, Carr & Ager 1993: 165). There are only a few studies investigating the perception of epilepsy among students in tertiary education institutions in industrial countries indicating knowledge deficiencies and stigmatization (Gouvier, Brown & Prestholdt et al. 1995: 51; Harding, Betts & Darby 1989: 37; Raeder, Ritter & Schwibbe


Introduction
A seizure (fit) is the clinical manifestation of abnormal and excessive discharge from nerve cells in the brain.Seizures are classified as provoked (that is, secondary to another dis ease such as a parasitic infestation or a brain tumor) or as unprovoked idiopathic (that is, without an identifiable pre cipitating disease or injury).Epilepsy is a disorder of recur rent unprovoked seizures.The prevalence rate in African coun tries has been three to five times higher than in industrial countries.This is explicable in part by more adverse events in utero, higher likelihood of injury, lack of access to treat ment, and parasitic diseases.Desjarlais, Eisenberg, Good & Kleinman (1995: 169) note that why 90% of epileptic pa tients in a number of African societies do not receive bio medical treatment that has proven efficacy is a social ques tion.Epilepsy is not unique among neurological disorders in hav ing psychosocial consequences, but many myths, misconcep tions and prejudices surround epilepsy, and persons with epi lepsy face negative societal attitudes and discrimination (McQueen & Swartz 1995: 859).Epilepsy may be attributed to spirit possession or transgression of ancestral taboos.A person with epilepsy may be shunned and barred from all social intercourse.Marriage may be proscribed for the pa tient and other family members.Because of the stigma asso ciated with the disease, families often hide afflicted children.
In an area of central Ethiopia with an epilepsy prevalence of 5.2 per thousand, a door-to-door survey of 1,500 households revealed that 45% of those interviewed believed the disorder could be transmitted by physical contact at the time of the attack; three-quarters would not allow a family member to marry a patient with epilepsy and would not employ such a person (Tekle-Haimanot, Abebe, Forsgren et al. 1991: 1363).In many developing countries knowledge about the cause, treatment and cure of epilepsy come from apparently contra dictory sources.For instance, in different South African soci eties, the influence of non-medical beliefs is still strong.McQueen, Swartz and Perfile (1995: 209) note about epilepsy and stigma in a South African rural and urban community that attributions of epilepsy to supernatural causes such as witchcraft were reasonably common, as was use of indigenous healing in addition to biomedicine.Among Northern Sotho traditional healers in South Africa it was found that epilepsy belongs to the major conditions treated by traditional healers.From 18 healers who treated epilepsy 12 said the cause was physical or natural and 6 attributed it to supernatural causes (witchcraft and violation of taboo) (Peltzer 1998a: 194).The choice of treatment for epilepsy was seen by 70 adult villag ers in South Africa as 71% traditional or faith healer, 16% medical and 13% do not know (Peltzer 1998b: 251).Few in digenous medicine men know how to treat convulsive disor ders effectively and except for some herbal remedies, their treatment mostly consists of ritual procedures performed for the patient and the protection of other family members against the dreaded affliction.Epilepsy therefore takes its natural course and the patients may suffer continued uncontrolled seizures (Jilek-Aall & Jilek 1989: 36If.).The fact that biomedical medicine can provide effective treat ment should not however rule out a role for traditional treat ments, if they are beneficial.A step to effective integration is to understand how African people view medical and non medical (traditional) ideas about cause and treatment, and how these relate to the belief that epilepsy can be effectively treated (Shaba, MacLachlan, Carr & Ager 1993: 165) included: (1) to determine the sources of infor mation about epilepsy and familiarity with epi lepsy, (2) to identify the believed causes and treat ment modalities of epilepsy, (3) to determine the relationship between causative, treatment and curative beliefs, and (4) to find out socio-demo graphic differences in regard to familiarity, causa tive and treatment beliefs of epilepsy.Findings on the perceptions of epilepsy will inform health workers and may improve the management of epi lepsy.

Sample and procedure
The sample included a convenient sample of 253 second year social science students from the Uni versity of the North, South Africa.The question naire was administered to all students in a class room situa tion and confidentiality was assured.The students were 98 (38.7%) males and 155 (61.3%) fe males in the age range from 18 to 42 years (M=25.0years, (5£>=4.2).Distribution by ethnicity showed 184 (72.7%)Northern Sotho, 37 (14.6%)Tsonga, 12 (4.7%)Venda, and 20 (7.9%) belonging to different ethnic groups.The majority (162; 64%) come from the village and 91 (36%) grew up or come from town or a township.

Measure
A questionnaire was developed based on a literature review (e.g., Danesi 1994: 26f., McLin & de Boer 1995: 958, Nyame & Biritwum 1997: 140ff., Santos, Guerreiro, Mataet al. 1998: 33, Shaba et al. 1993: 166).Thus, the questionnaire included: (1) sociodemographic data (age, sex, ethnicity, and socio economic background); (2) 3 items on familiarity with epilepsy: Have you ever heard or read about the disease called 'epilepsy' or convulsive seizures or epileptic fits?Did you ever know anyone who had epilepsy?and Have you ever seen anyone who was having a seizure?(answer: yes or no); Cronbach alpha and split-half reliability coefficient for the 'familiarity' measure were .7 and .6,respectively, for this sample; (3) 11 items on believed causes of epilepsy (answer: yes or no); an example is "Epilepsy is caused by alcohol and drug abuse"; Cronbach alpha as well as split-half reliability coefficient for the 'causes' measure was .8 for this sample; (4) 5 items on the treatment of (chronic) epilepsy (answer: yes or no); an example is "herbs"; Cronbach alpha as well as split-half reliability coefficient for the 'treatment' measure was .7 for this sample; (5) 5 items on beliefs about conceptual causes and treat ment: a) traditional cause, b) medical cause, c) tradi tional treatment, d) medical treatment, and e) curable (rated from l=strongly disagree to 7=strongly agree) (see Table 4); Cronbach alpha as well as split-half reliability coefficient for the 'conceptual causes and treatment' measure was .8 for this sample; (6) 5 items on sources of information about epilepsy (answer: yes or no) (see Table 5); Cronbach alpha as well as split-half reliability coefficient for the 'infor mation' measure was .5 for this sample; (7) 17 items on attitudes about epileptics (answer: yes or no); an example is "An epilectic is mentally normal" (see Table 6); Cronbach alpha as well as split-half reliability coefficient for the 'conceptual causes and treatment' measure was .6 for this sample; and (8) 9 items on prevention of epilepsy; an example is "avoid alcohol" (answer: yes or no) (see Table 7).Cronbach alpha and split-half reliability coefficient for the 'fam iliarity' measure were .6 and .5, respectively, for this sample; Data analysis Data were analysed with descriptive, Chi-square, and corre lational statistics using SPSS (version 8.0).

Results
Fam iliarity with epilepsy ables were found with regard to urbanrural differences; more students who come from the village have heard or read about epilepsy, know a person with epilepsy, and have seen a person with a seizure than students who come from town.

Causes and treatm ent
The believed causes of epilepsy were mainly seen as brain/central nervous disorder and as brain damage.More than half of the participants (52% males and 70% females) felt that epilepsy was caused by a mental or emotional disor der, and also more than half saw it as caused by inheritance, specific diseases, trauma, etc., and alcohol and drug abuse.More than a quarter of the uni versity students (males 34% and fe males 22%) believed epilepsy was caused by witchcraft, mud (bad medicine) or evil spirits (see Table 2).Regarding the treatment of (chronic) epilepsy about 80% of the participants indicated the doctor and prayers.Women pre ferred herbs and doing nothing to men (see Table 3).
From Table 4 the degree of believing in a traditional cause of epilepsy is associated with the degree of belief in traditional treatment as well as the degree of believing in a medical cause is even stronger associated with the degree of belief in medi cal treatment.Strength of belief in a cure for epilepsy is not associated with traditional cause nor is traditional treatment.But, there is very significant relationship between strength of belief a medical cause as well as medical treatment and belief in a cure (pc.001 and p<.001 respectively).Degree of medi cal orientation to treatment predicts a belief in curative pow ers, whereas degree of traditional orientation to treatment, by implication, predicts a belief in palliative powers (a prefer ence for traditional treatment but with no expectation of cure) (see Table 4).Gender was not significantly related to any of the variables except for curable with female gender (p<.007).

Sources of information
Health care institutions are clearly (more than 70%) the most  important source of information on epilepsy, especially for women, followed by TV and radio, newspaper, centers for non/formal education and friends and relatives in that order.Men seem to have significantly more access to newspapers and TV and radio than women (see Table 5).

Attitudes about epileptics
The majority of the participants have a positive attitude to wards epileptics through sharing a meal or room and will ingness to marry an epileptic.Most thought epileptics were normal, education should not be denied to them, they should be gainfully employed and also marry.Almost half of the participants (45%) felt that an epileptic should be held responsible for actions during fit, 17% thought that epileptics can infect others with their saliva during a seizure, 12% felt an epileptic is a witch or wizard, and about 10% said an epileptic must be isolated (see Table 6).

Prevention of epilepsy
Participants rated as major rea sons for prevention of epilepsy avoiding alcohol, prayers, bal anced diet, avoiding an accident, and delivery in hospital in order of descending importance (see Table 7).

Discussion
The majority of the students were fam iliar with epilepsy (heard about it or know someone with epilepsy), which concurs with other studies (e.g. in a commu nity sample in Brasil, Santos et al. 1998: 35).The finding that fa miliarity with epilepsy was sig nificantly higher in the students from a rural background is inter esting and needs further investi gation.
The believed causes of epilepsy were similar to that found in other studies, such as brain/central nervous disorder and as brain damage, inheritance, and specific diseases, trauma, and alcohol and drug abuse, witchcraft, muti and spirits, etc.For ex ample, Danesi (1994: 26) found among Nigerian university graduates that 61.2% believed that epilepsy was caused by brain damage, 23.3% do not know, 13.2% heredity and 1.5% witchcraft.Nyame and Biritwum (1997: 140) found in a community sample in Accra, Ghana, that 31.8%believed heredity, 27.9% witchcraft, juju and spiritual, 8.1% brain growth, 7% accident, 5.9% alcohol and drug abuse, 4.2% high fever and infec tion and 15.1% other caused responsi ble for epilepsy.Awaritefe, Longe and Awaritefe (1985: 1) identified in a com munity sample in Nigeria that the major perceived causes of epilepsy reported were heredity, witch craft, and brain damage, in that order, not infection.More than half of the participants felt that epilepsy was caused by a mental or emotional disorder.Contrary to popular myth, in telligence is not impaired by epilepsy per se.However, child hood epilepsy is associated with a fourfold increase in risk for psychiatric disorder (Desjarlais et al. 1995: 167).
It is noteworthy that 84% of the participants would go to a doctor for the treatment of epilepsy but also more than 80% would pray and 50% use herbs.It appears that prayers are invariable in most treatment regimes in the South African context, whatever the illness.The finding that a belief in a traditional cause is strongly associated with a belief in traditional treatment, but that nei ther of these beliefs (in traditional cause or treatment) are associated with a belief that epilepsy is curable concurs with a community population in Malawi (Shaba et al. 1993: 167).A weak correlation between a belief in either a medical or traditional cause of epilepsy indicates that those who believe in a medical cause may or may not also believe in a tradi tional cause.Thus, some participants may see epilepsy as hav ing a dual cause both medical and traditional.This is further supported by a weak correlation between traditional cause and medical treatment.
Health care institutions are clearly the most important source of information on epilepsy, especially for women, followed by TV and radio.This finding may be included in health edu cation about epilepsy.
The finding that the majority of the participants had a posi tive attitude towards epileptics through sharing a meal or room and willingness to marry an epileptic concurred with other studies (e.g.Danesi 1994: 26, Nyame and Biritwum 1997: 141).In this sample, however, higher rates of nega tive attitudes towards epileptics was found in re gard to the following questions: (1) epileptics can infect others with their saliva during a seizure (16.9%), (2) epileptic should be held responsible for actions during fit (45.2%), (3) students with epilepsy should be separate from other students in class (12.9%), and (4) an epileptic is a witch/wiz ard (12.1%) (e.g.Nyame andBiritwum 1997: 141).People believe that the saliva or other excretions are contagious, especially during an attack, and that touching the convulsing person may cause the epilepsy spirit to leap over onto one (Jilek-Aall, Jilek, Kaaya et al. 1997: 784).With respect to at titudes towards epileptics this sample needs fur ther health education.

Conclusion and recommendation
The majority of the students were familiar with epilepsy (heard about it or know someone with epilepsy).Although the majority of the participants had a positive attitude towards epileptics through sharing a meal or room and willingness to marry an epileptic.However, there were some areas of concern such as that more than a quarter of the university students believed epilepsy was caused by witchcraft, muti or evil spirits, almost half (45%) felt that an epileptic should be held respon sible for actions during fit, 17% thought that epi leptics can infect others with their saliva during a seizure, 12% felt an epileptic is a witch or wizard, and about 10% said an epileptic must be isolated.These areas need health education considering the different sources of information about epilepsy.The perceptions of black South African Univer sity students suggest that there is a differentiation between the effects of medical and traditional treatment for epilepsy.Since a traditional cause was also associated with a medical cause and medical but not traditional treatment, it may be that the two approaches (traditional as palliative and medical as curative) could be blended into one approach (Shaba et al. 1993: 167).The ability of students to simultane ously hold medical and traditional beliefs about epilepsy is noted (Shaba et al. 1993: 165).Data should help in address ing health promotion by designing educational programmes among young adults

Table 1 :
Fam iliarity with epilepsy by gender and urbanisation level.

Table 5 :
Source of inform ation about epilepsy by frequency and in percent

Table 6 :
Attitudes about epileptics by frequency and percent