Perceptions about Epilepsy in the Limpopo Province of the Republic of South Africa

In rural African communities, there are widespread beliefs that epilepsy is due to possession of bewitchment by evil spirits or the devil. There is also a belief that the transmis­ sion of the disease is by physical contact, such as by sa­ liva (Osuntokun 1990:106). In central Africa, as well as in Sub-Saharan Africa, epilepsy is attributed to the presence of a lizard in the brain, and epileptic fits occur whenever the lizard moves ( Haddock 1993:118 ; Nyame 1997:143 ). Such perceptions toward epilepsy and a person with epi­ lepsy, in indigenous Africa, are invariably unfavourable and unfounded as they reflect mythical beliefs about the disease.


Introduction and background information
In rural African communities, there are widespread beliefs that epilepsy is due to possession of bewitchment by evil spirits or the devil.There is also a belief that the transmis sion of the disease is by physical contact, such as by sa liva (Osuntokun 1990:106).In central Africa, as well as in Sub-Saharan Africa, epilepsy is attributed to the presence of a lizard in the brain, and epileptic fits occur whenever the lizard moves ( Haddock 1993:118 ;Nyame 1997:143 ).Such perceptions toward epilepsy and a person with epi lepsy, in indigenous Africa, are invariably unfavourable and unfounded as they reflect mythical beliefs about the disease.
Most professionals know epilepsy to be a nervous disor der causing the patient to suffer convulsions, with or with out the loss of consciousness (Oxford Handy Dictionary 1991).People with epilepsy tend to view themselves and their condition as unacceptable to themselves and to oth ers and are thus less likely to seek support (Uys & Middleton 1997:479).
Despite its high prevalence, epilepsy, like HIV/AIDS, con tinues to be socially stigmatised.Those suffering from epilepsy become ostracised and discriminated against by many communities in England, India and Africa (Brains et al 1992:14;Eisenschenk & Gilmore 1999:31).
Literature searched reveal that considerable research has been done on the incidence of epilepsy (and especially of seizures), but no previous research report could be traced which had studied public perceptions of persons with epi lepsy in the Limpopo Province (LP) of the Republic of South Africa (RS A), although epilepsy is known to be a common neurological disorder in this province.

The purpose of the study
The purpose of the survey was to ascertain the feelings and the perceptions the communities have about epilepsy and about persons suffering from epilepsy, so that the public could differentiate between myths, superstitions and facts associated with epilepsy.Based on the findings of this research, more effective health education could be launched to enhance the quality of life of persons suffering from epilepsy, in this province.

Research design and method
A non-experimental, exploratory, descriptive design was used to obtain data by means of questionnaires.Informa tion was obtained concerning perceptions about epilepsy and treatment of persons suffering from epilepsy in the Limpopo Province.This was an exploratory study because no earlier studies on this topic in this area could be traced, and it was descriptive because it aimed merely to ascertain and describe persons' perceptions about epilepsy, knowl edge of the respondents about care given to a person with epilepsy, during a seizure attack, as well as perception of communities and treatment modalities.

Population and research sample
The population consisted of the communities visiting clin ics in sub-district of Mutale under Vhembe District.The research sample comprised 1010 black men and women from community members who visited designated clinics during the period of conducting this study.A non-probability convenience sample was used.A convenience sampling consists of using the most readily available or most the convenient group of people for the sample ( Polit & Hungler 1997:244).Criteria for inclusion into the research popula tion was that, men and women between the ages of 30 to 70 years who visited designated clinics during the period be tween July 2000 and May 2001, comprised the population of this research.This age group was selected because such people care for epileptic persons in the communities served by the clinics participating in this study.No sam pling selection procedures were used, as each adult visit ing the participating clinics during the period of conduct ing the survey was requested to participate in this study.Participation remained voluntary.No participant was re munerated for his/her inputs.All participants were assured that their answers would be anonymous because their names would not appear anywhere on the questionnaire.All re sponses were treated as confidential.Using a conven ience sample might have influenced the generalisability of the research findings, because no assurances can be given that those 1 010 persons who participated had the same opinions as those who did not participate.However, a large number (1010) of participants was used to counteract possible prejudices which might occur amongst the minori ties in the community studied.

Research instrument
Based on the literature review open-ended questions were designed to obtain participants' perceptions about epilepsy.The questions were phrased as simply as possible.The questions were translated into Tshivenda language, spo ken by local people attending the three participating clin ics, and by the nurses working in these clinics.The ques tions were compiled and translated by the researcher, who speaks both languages.Both the English and Tshivenda versions were studied by an expert in both languages to ensure that the translated question conveyed the intended meaning.

Reliability and validity of the research instrument
The reliability of a measure denotes the consistency of measures obtained in the use of a particular instrument and is an indication of the extent of random error in the meas urement method (Bums & Grove 2001:395).The reliability of the questionnaire was enhanced by checking and re checking the translated items interpretations by academ ics, nurses and health care clients who did NOT form part of the research sample.As similar responses were obtained from these three diverse groups of persons, it was accepted that the questionnaire succeeded in obtaining peoples' perceptions about epilepsy.
The validity of an instrument is a determination of the ex tent to which the instrument actually reflects the abstract construct being examined... validity addresses the appro priateness, meaningfulness, and usefulness of the specific inferences made from instrument scores (Bums & Grove 2001:399).
The content-related validity of the questionnaire items (based on in-depth literature reviews) was judged by a number of academics, nurses and health care clients to be relevant to the topic of identifying persons' perceptions about epilepsy in the Limpopo Province.

Data collection
A non-experimental, exploratory descriptive survey was used to collect information about perceptions of people towards epilepsy in the Limpopo Province, including their knowledge of and care rendered to persons suffering from epilepsy.
Registered and enrolled nurses in each clinic participating in the survey (from the sub-district of Mutale under Vhembe District) acted as voluntary field workers.The researcher visited each clinic under this sub-district, explained the need for the research and promised that each participating clinic would receive a copy of the research report.It was ex plained that the data should enable nurses to provide more effective health care and health education to persons suf fering from epilepsy, and to their care-takers.The adminis tration of the questionnaires aimed at identifying people 's perceptions about epilepsy and about persons suffering from epilepsy in these communities.The registered and enrolled nurses interviewed adults who could not read and/ or write using the questionnaire as a structured interview and entered their responses on a questionnaire in the same way that the participant would have done if he/she could read and write.In these cases the nurses assured confiden tiality of responses and reassured the participants about the confidentiality of their responses.

Data analysis
The SPSS software was used to analyse the data obtained from the questionnaires used during the structured inter views with 1010 men and women who visited the desig nated clinics during the period of conducting this study.

Biographic Information
As many as 88,5% of the respondents' ages ranged from 30 to 60 years.Their major occupation was that of labourer (88.7%).More females (58.8%) than males participated (47,6%) in this survey.There were slightly more Zionist

Respondents' knowledge about epilepsy
Different names were used for epilepsy in the community, including tshiivha, tshifakhole, tshiririvha.Only 10% of the respondents indicated that the disorder is called "epi lepsy ".Of the participants, 90.0% indicated that they knew about or had read about epilepsy.70.9% had witnessed a seizure during their lifetime, but only 38,2% admitted that they had a family member suffering from epilepsy.

Perceptions about the nature o f epilepsy
Only (4.9%) of the respondents considered epilepsy to be a hereditary condition.The majority of the respondents (89.7%) reportedly did not know what caused epilepsy while (51,6) stated that an individual is bom with it, even though (55,5%) maintained that it was probably caused by evil spirits, (60.1%) believed that epi lepsy was a curse from God, and (2,0%) mentioned natural causes, such as accidents.

Perceptions about the treatment o f persons suffering from epilepsy
Religious charms on the body was indicated by (49.9%) of the re spondents to constitute an effec tive means of treating persons suf fering from epilepsy.The precise nature of these charms were not in dicated by any respondent, nor where or how these charms could be obtained.Medical drugs were reportedly the least favoured, and were seen as the least successful, method of treatment for epilepsy.As many as 69.9% of the respond ents favoured traditional medicines (unspecified) rather than modern drugs for treating persons suffering from epilepsy.This finding could imply that the majority of epileptic sufferers in the community did not receive and/or did not take their pre scribed anti-convulsive treatments.The majority of the respondents indicated that epilepsy was incurable, especially if these persons sustained bums during seizures -a real risk in this area of the Limpopo Province where the majority of households use open fires to prepare their meals.On ways in which society could care for persons suffering from epilepsy, only 20.4% of the respondents gave their opinions, whist the majority (79,6 %) claimed not to know how this could be achieved.Only 45.7% of the respond ents believed that sacrifice to the ancestors would be ben eficial while 9,5% indicated that patients need to be prayed for.The majority of the respondents did not know what care to render during seizures 87,1%, although 5.8% indicated that they would guard and protect the person having the con vulsion from hurting him/herself.Only 4.5% indicated that they would splash chilli water over the victim's face to frighten away the evil spirit causing the seizures.A small percentages of those interviewed indicated that they would give holy water to the victim 0,9%.Indigenous medicines were favoured by 69.9% of the respondents, but the types of traditional medicines were not specified.

Perceptions about social interactions with persons suffering from epilepsy
The study showed diat the men and women reported simi- Give herbal medicine 69.9 Give holy water 0.9 Splash chilli water over face 4.5 lar perceptions about epilepsy and about persons suffer ing from epilepsy, and followers of both the Christian and zionist reported similar perceptions about epilepsy.How ever, older respondents (above 60 years of age) reported more negative perceptions than those aged 40 or younger.Surprisingly, those respondents who had family members suffering from epilepsy did not portray markedly different perceptions from those who did not have affected family members.
The Limpopo Province's rural communities perceived epi lepsy as a scaring disorder because of its alleged associa tion with evil spirits and witchcraft.As a result of these perceptions (and superstitions), persons with epilepsy in rural African countries, might suffer from social depriva tion and discrimination.Of the participants, (90,0%) indi cated that they heard or read about epilepsy.In spite of these beliefs and fears as many as (98,2%) of the respond ents indicated that persons suffering from epilepsy should be kept in their homes and should not be kept away from their communities.The majority of the respondents (89,7%) considered contact during convulsions to be the most sig nificant method of transmission, explaining why contact with persons during seizures would be avoided at all costs.Although (70,6%) of the respondents would not employ a person suffering from epilepsy, 52,7% were willing to work with such a person, and 50,8% would shake hands with someone having the disorder.Only 40,2% of the respond ents were willing to establish friendships with persons suffering from epilepsy, but only 3,4% reportedly had such friendships at the time when the data was collected.Sur prisingly 70,6% of the respondents would not object to their children playing with children suffering from epilepsy.However, they agreed that they would instruct their chil dren to run away from their playmates during seizure at tacks or if convulsions occurred probably because the majority 89,7 regarded physical contact during convulsions as being the major means of contracting epilepsy.This per ception might explain why many persons sustain severe bums during seizures-accounting their relatives' fears of assisting them or of pulling them out of fires during sei zures .Lee and Lemmer (1995:199) reported similar percep tions among respondents, about the transmissions of epi lepsy by direct physical contact with persons or their se cretions during seizures.
The response of the interviewees from the rural community during this survey had succeeded in registering the preva lent beliefs on and perceptions toward epilepsy, concern ing the background of the community studied, it should be noted that the characteristics that were most relevant to the attitudinal study were the high illiteracy rate of 86,1% and the prevalence of epilepsy in the community, where the majority of those suffering from epilepsy were not receiv ing anticonvulsant treatment, because of the close social contacts and interactions within the community.The ma jority of the respondents in this study had witnessed sei zure attacks 70,9%, but were not aware of the causes of the disease 89,0%.Although epilepsy was still feared and dreaded in the rural community studied, the researcher was impressed by the fact that the respondents showed rea sonable understanding and tolerance to the person with epilepsy, particularly if the sufferer did not exhibit aggres sive tendencies and did not have after signs of affection by the disease such as mental retardation.
There was a particular sympathy for children with the dis ease, both from parents and the general public.It is inter esting to note that more people 70,6% were willing to allow their children to play with peers having epilepsy, compared to the experience of some ethnic groups in Nigeria ( Odeku and Dada ethnic groups ) where almost 84,9% of the re spondents in the two studies conducted in Nigeria, op posed such an association, probably due to the belief that epilepsy is a contagious disorder (Danesima 1994:26;Osuntokun 1990:104).
Only 14,9% of the respondents were willing to allow some one suffering from epilepsy to marry a member of their fami When asked if they would consider a person with epileptic fits well controlled/cured from his/her illness, 39,7% an swered in the affirmative, while 60,3% stated the disorder was incurable.
The wearing of amulets and/or specific bangles to prevent convulsions might aggravate the social isolation and stigmatisation of many persons suffering from epilepsy who live in rural communities in Africa, including the Limpopo Province.Carod (1998Carod ( :1067) ) indicates that in other African countries, a person suffering from epilepsy might face such serious social ostracism as to become an outcast from his/ her community.Chung (1995:491) asserts that in Taiwan and India, social rejection occurs when uncontrolled sei zures result in severe burns/deformities and/or mental re tardation.Similar perceptions about epilepsy were obtained during this survey in the Limpopo Province of the RSA, where a patient has no supporter and care from the family members.
In the Limpopo Province of the RSA, like other parts of Africa, indigenous medicine in the form of herbal remedies, holy water or charms to wear on the body, given by faith healers/spiritual healers were commonly used in the com munity to cure /treat or prevent epilepsy.However, this was not the evidence in this study.This may be due to a tendency of respondents to conceal the information, be cause the majority of the respondents are illiterate 86,1%, as they cannot read nor write, probably because they could not trust the voluntary field workers who were responsible for collecting data.

Limitations of the research
The descriptive exploratory survey attempted to identify the perceptions about epilepsy and about persons suffer ing from epilepsy in selected rural areas of Venda only.This geographic limitation might limit the generalisability of the research results to other rural areas, and/or to other provinces of the RSA.However, these research results should provide a point of departure to conduct similar re search in other geographic areas.
Another limitation might be related to the research popula tion being limited to those adults who visited specific clin ics in designated rural areas during one calendar year when the data was collected.However, it was attempted to over come this limitation by using a large sample, comprising 1010 respondents.

Recommendations
Health education efforts in the rural areas of the Limpopo Province should strive to convey knowledge about the causes of epilepsy as well as about the nature of anti-convulsive drugs.Much human suffering could be avoided if only persons witnessing seizures could rescue the victims from falling into fires-unlikely occurrences while the major ity of the community members perceive epilepsy to be con tagious during seizures.
Future research should strive to identify the health care professionals' perceptions about epilepsy and about per sons suffering from epilepsy.If the health care profession als portray similar perceptions, then health education ef forts should be geared towards these professional groups, prior to attempting to provide effective health education to the communities as such.
Health education efforts should also stress the importance of treating potential causes of seizures such as high tem peratures and pre-eclampsia/eclampsia during pregnancy.
Effective immunization against childhood diseases, includ ing measles, could reduce the incidence of seizures in any community.Neglected gastro-intestinal conditions could cause convulsions as a result of sever fluid and electrolyte imbalances.Malaria (endemic in the geographic area where the survey was conducted) could cause convulsions as a result of hyperpyrexia or in cases of cerebral malaria.If health education efforts could succeed in establishing these links between seizures and physical ailments, more per sons might be assisted (and saved from sustaining severe bums) during seizures.

Conclusion
Epilepsy might be a public health problem of unknown pro portions in many developing countries, due to under re porting of the condition in order to avoid social stigma.
The utilization of available anti-convulsive drugs in rural communities warrants further investigation.The problems of the epileptic anywhere in the world are compounded by social ostracism.In the context of the rural Limpopo Prov ince of the RSA, this survey indicated a dire need for inten sive efforts to disseminate proper information about epi lepsy through every means possible, together with im proved health care delivery systems which would provide health services to prevent, treat and manage seizures of all kinds, including epileptic convulsions.Primary health care services need to address common causes of seizures, such as obstetric complications, hyperpyrexia, childhood ill nesses, malaria and any central nervous system infections.Persons suffering from epilepsy should receive health edu cation and the necessary anti-convulsive drugs.The fami lies and friends of such persons could constitute focus groups to begin to disseminate accurate information about epilepsy, its causes, treatments and complications, and es pecially the fact that epilepsy is NOT a contagious disease, and that people who assist persons during seizures will NOT be at risk of contracting epilepsy.All health educa tion efforts in the rural areas of the Limpopo Province should continue to emphasize how persons suffering from epilepsy could be helped by community members.How ever, health care workers should remain aware of the pre dominant community perception that epilepsy can be trans ferred to healthy persons during convulsions.Health care workers, especially community health nurses, should act as role models by providing assistance to such persons and by demonstrating that they did not become "infected "with epilepsy as a result of their assistance.

Table . 2
: Question: Do you know the causes of epilepsy?

Table . 5
: Public response to attitudinal question