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Epilepsy & Behavior 9 (2006) 83–88
Knowledge, attitudes, behaviors, and practices regardingepilepsy among Zambian clerics
M. Atadzhanov a, E. Chomba a, A. Haworth a, E. Mbewe a, G.L. Birbeck b,c,*
a University of Zambia, Lusaka, Zambiab International Neurologic and Psychiatric Epidemiology Program (INPEP), Michigan State University, East Lansing, MI, USA
c Chikankata Health Services, Mazabuka, Zambia
Received 18 November 2005; revised 17 March 2006; accepted 18 March 2006Available online 19 May 2006
Abstract
Background. Epilepsy carries a high burden of social morbidity. An understanding of who propagates stigma and the determinants ofstigmatizing attitudes is needed to develop effective interventions. Clerics represent an especially influential social group in Africa. There-fore, we conducted a survey of the knowledge, attitudes, behavior, and practices of Zambian clerics with respect to epilepsy.
Methods. We studied clerics in one large rural region as well as in the capital city. The rural survey was conducted door-to-door. Inthe urban areas, central administration for multiple denominations assisted in survey delivery. The survey, adapted from previously pub-lished instruments, included cleric-specific questions and demographic data. Composite scores for knowledge and tolerance were devel-oped. Determinants of higher knowledge and tolerance were assessed.
Results. Almost all Zambian clerics know someone with epilepsy and have witnessed a seizure. More than 40% report having a familymember with epilepsy. Unfortunately, this familiarity is not associated with more knowledge or tolerance for the condition. Youngerclerics, urban dwellers, those with fewer children, and those with more years of formal education were significantly more tolerant. Moreknowledgeable clerics are more likely to recommend that a person with epilepsy seek care from a physician rather than a traditionalhealer. Formal education was the most important factor in determining tolerance toward epilepsy.
Conclusions. Zambian clerics are very familiar with epilepsy, yet have relatively little knowledge of the etiology. Many view tradition-al healers as the appropriate care provider for epilepsy. To decrease stigma and improve the quality of advice offered by clerics to theircongregations, educational programs focusing on the biomedical nature of the disorder are needed, particularly in rural regions.� 2006 Elsevier Inc. All rights reserved.
Keywords: Epilepsy; Stigma; Developing countries; Religion
1. Introduction
Epilepsy represents one of the most common, chronicneurological disorders in the developing world [1]. Unfor-tunately, misconceptions and negative attitudes towardpeople with epilepsy (PWE) are still highly prevalentamong the general public [1–3]. Despite scientific advancesin understanding and treating epilepsy over the last severaldecades, epilepsy-associated stigma continues to adverselyimpact the psychosocial status and quality of life for
1525-5050/$ - see front matter � 2006 Elsevier Inc. All rights reserved.
doi:10.1016/j.yebeh.2006.03.012
* Corresponding author. Fax: +1 517 432 9414.E-mail address: [email protected] (G.L. Birbeck).
PWE [4]. Recently, stigma theorists reframed the conceptof stigma to focus less on the person who is stigmatizedand more on those who do the stigmatizing [5,6]. Knowl-edge, attitudes, behavior, and practice (KABP) surveysoffer some insight into how stigmatized epilepsy may bewithin a particular country or region. However, KABPmay differ among different social groups, even in relativelysmall geographic regions. Social background, religiousbeliefs, and cultural norms may contribute substantiallyto the propensity for some subgroups to serve as propaga-tors versus alleviators of epilepsy-associated stigma.
Zambia ranks among the poorest of nations, with anannual per capita gross domestic product of $478. Life
84 M. Atadzhanov et al. / Epilepsy & Behavior 9 (2006) 83–88
expectancy has dropped to 36.5 years and the mortalityrate for children 65 years is 182/1000. Primary educationis not compulsory. Forty percent of Zambians reside inrural regions, and the vast majority of rural people are sub-sistence farmers [7]. This environment of rampant poverty,high rates of disease and disability, and limited formaleducation is fertile ground for misinterpretation andmisunderstanding regarding epilepsy and resulting epilep-sy-associated stigma. Zambian clerics are an especiallyinfluential social and political group and may play animportant role in determining the level of epilepsy-associat-ed stigma among the general public. Little is known abouthow organized religion, religious experiences, or religiousbeliefs relate to the stigmatization of epilepsy. A reviewof the literature shows that most KABP surveys have beenconducted in the general population [3,8–12], amongteachers [13–18], or among PWE [19–21]. Therefore, weconducted an epilepsy KABP survey of Zambian clerics.
2. Methods
1 Note that in the survey, sons and daughters were asked in separatequestions, but there was virtually 100% concordance among respondents,so we combined these into a single item in the composite score.
2.1. Study population
We sampled clerics from one large rural region of Zambia as well asfrom Lusaka, the urban capital. In the rural area of Chikankata in Zam-bia’s Southern Province, local Epilepsy Care Team staff trained as commu-nity health workers (CHWs) and after becoming familiar with the regionused existing detailed maps delineating villages and churches in the catch-ment area. For the rural survey sample, a cleric was defined as a religiousleader affiliated with a physical structure dedicated to worship. A CHWvisited any physical structure identified on the map or by village headmenas a site of worship. On visiting the structure and its associated dwellings,the CHW identified any/all self-identified clergy who reported participat-ing in leading worship in the said structure and asked them to participatein the survey. ZMK 5000 (�US$1.00) was offered as compensation to par-ticipants. Participants were given the option of verbally answering a CHWwho read the survey questions or self-administering the survey. Surveyscould be completed immediately and given to the CHW or returned tothe local clinic.
For the urban sample of clerics we contacted the central office or head-quarters for all major churches in Zambia (United Church of Zambia,Lusaka Catholic Archdiocese, etc.) to seek their assistance in surveyadministration. Judeo-Christian sects constitute >87% of organized reli-gion in Zambia, and no other single sect comprises >2% of the population[22]. Compensation was offered, similar to the rural population. Surveyswere typically administered during the churches’ annual clergy retreat orregional meeting. For urban clergy, the survey was entirely self-adminis-tered. This study was reviewed and approved by the University of Zam-bia’s Research Ethics Committee, as well as Michigan State’s UniversityCommittee for Research Involving Human Subjects.
2.2. Instrument
After reviewing several KABP instruments used by other groups study-ing epilepsy-associated stigma [3,10,23–27], we developed an 18-item ques-tionnaire that included demographic characteristics, as well as itemsmeasuring knowledge, tolerance, and familiarity/experience with epilepsy.Cleric-specific items regarding anticipated advice to families affected byepilepsy were also included. The survey was piloted among clerics in neigh-boring areas to develop the final survey instrument (see Appendix A). Eng-lish is the official language of Zambia and the language used in all highereducation programs, but in rural regions, literacy and English fluency
rates vary. Therefore, in the rural region, we offered respondents theoption of responding verbally to the survey, which was then read to themby one of four CHWs who documented the respondent’s answers.
For the rural population, surveys were forward- and-back translationinto Chi Tonga by a three-person committee consisting of a nurse, clinicalofficer, and social worker fluent in both Chi Tonga and English. CHWsreceived a 3-day training course to standardize participant identificationand survey delivery.
2.3. Analysis
Data were double-entered into Microsoft Access for accuracy beforeimportation into EPI INFO Version 3.2.2 for analysis. By the use of 11items that assessed knowledge regarding epilepsy, a composite score wascalculated for each respondent; the potential score was ±11. Higher scoresreflected more knowledge regarding epilepsy. These items were:
‘‘Epilepsy is a form of’’: (Please tick all that apply)
h Madnessh Spirit or demon possessionh Brain disease
‘‘Epilepsy is a contagious condition.’’ (Please tick one)
h Alwaysh Sometimesh Never
What do you think is the cause of epilepsy? (Please tick all that apply)
h Brain injury
h Curse from Godh Runs in families
h Spirit possessionh Birth injury
h Witchcrafth Excessive worry
A tolerance score was similarly developed. The potential range of thetolerance score was 0–4. Tolerance items included:
‘‘A child with epilepsy can have a high level of intelligence.’’
h True
h False
Would you allow your child to play with a child who has epilepsy?
h Yes
h No
h Not familiar with epilepsy
‘‘A child with epilepsy should never attend school.’’
h True
h False
h Sometimes true
h Not familiar with epilepsy
Would you allow your son/daughter to marry a person with epilepsy?1
h Yes
h No
h Not familiar with epilepsy
Less than 2% of the sample comprised missing data for responses;therefore, no imputations for missing data in the tolerance and knowledgescores were required. Knowledge and tolerance scores were treated as con-tinuous variables in our analyses. Comparisons were completed using v2
test, Student’s t test, or ANOVA to assess the association between demo-graphic characteristics and KABP. Linear regression models using charac-teristics associated with more knowledge or tolerance were developed toassess independent determinants.
Table 2Epilepsy familiarity, knowledge, attitudes, beliefs, and practices amongclerics
FamiliarityHas heard of epilepsy 96.9%Knows someone with epilepsy 98.2%Has witnessed a seizure 94.9%Has a family member with epilepsy 43.1%
Knowledge/beliefs—Epilepsy is a form of:Madness 7.9%Spirit or demon possession 25.0%Brain disease 75.9%
Epilepsy may be contagious 42.5%Believes a child with epilepsy can have a high level of intelligence 56.8%
The cause of epilepsy is:Mental retardation 30.6%Brain injury 61.6%Blood disorder 24.8%Witchcraft 33.5%Curse from God 6.5%Excessive worry 13.0%
Would recommend treatment via:Doctor 88.5%Traditional healer 34.1%Church healing session 54.8%
Attitudes/toleranceWould allow their child to play with a child with epilepsy 82.9%Would allow their son to marry a woman with epilepsy 43.0%Would allow their daughter to marry a man with epilepsy 43.0%Believes a child with epilepsy should never attend school 5.1%
Cleric-specific behaviors—Would recommend that a familywith a member suffering from epilepsy should:Leave the person with epilepsy at home 2.3%Pray for him or her 84.9%
M. Atadzhanov et al. / Epilepsy & Behavior 9 (2006) 83–88 85
3. Results
The total number of respondents was 225. As urban sur-veys were collected by church administration, a specificresponse rate was not available, but based on the numberof clergy estimated to be affiliated with each church, ourresponse rate was >90%. In the rural region the responserate was 97.6%. Demographic data for respondents areprovided in Table 1. Among rural clerics, 78% requestedthe survey be delivered verbally by the CHW. We com-pared rural clerics who self-administered with those whoverbally received the survey on demographic variablesand knowledge and tolerance scores, and they differed onlyby years of formal educational (mean 9.2 vs 12.0 years,P = 0.032). Respondents’ familiarity with epilepsy, as wellas their response to KABP-specific questions, is outlined inTable 2. Familiarity with epilepsy was high, with almost allrespondents knowing a person with epilepsy and more than40% having a relative with the condition.
Clerics attributed epilepsy to both biomedical (61.6%brain injury, 25.9% birth injury) and supernatural (33.5%witchcraft, 25.0% spirit possession) causes. This dualitywas matched by dual recommendations for epilepsy care(34.1% would recommend a traditional healer, and 88.5%a physician).
The composite scores were as follows: knowledge rangedfrom �5 to 9 (mean 4.0, median 5.0, mode 7.0) and toler-ance from 0 to 4 (mean 2.4, median 2.0, mode 4.0). Char-acteristics associated with more knowledge and toleranceamong clerics are listed in Table 3. None of the demo-graphic characteristics we captured for the clerics were
Table 1Demographic characteristics (n = 225)
AgeMean 40.7Median 40.1Mode 42.0Range 18–76
Proportion of males 77.9%
Years of formal educationMean 10.8Median 12.0Mode 13.0Range 5–13
Proportion married 60.4%
Number of childrenMean 4.8Median 5Mode 5Range 0–15
Proportion with urban residence 26.5%Proportion fluent in Englisha 85.3%
DenominationCatholic 4.5%Liberal Protestant 63.8%Strict Protestant 28.6%Jehovah’s Witness 3.1%
a Self-reported assessment.
Hold a healing session 44.0%Keep the condition a secret 5.5%
associated with more knowledge of epilepsy. However,younger clerics, urban dwellers, those with fewer children,and those with more years of formal education were signif-icantly more tolerant of PWE. Although more than 40% ofclerics reported having a family member with epilepsy,these individuals were not more knowledgeable about ormore tolerant of the condition. More knowledgeable indi-viduals would recommend that a person with epilepsy seek
Table 3Characteristics associated with more knowledge and tolerance of epilepsy
Characteristic Knowledge Tolerance
Younger age 0.61 0.0018
Gender (male) 0.25 0.76Years of formal education 0.50 0.0002
Denomination 0.23 0.24Fewer children 0.89 0.003
Residency (urban) 0.19 0.0005
Knows someone with epilepsy 0.51 0.48Has witnessed a seizure 0.72 0.27Has a family member with epilepsy 0.24 0.83Would recommend a doctor 0.0001 0.02
Would not recommend a healer 0.40 0.0001
Would not recommend a church healing session <0.0001 0.67
Bold indicates, P < 0.05.
86 M. Atadzhanov et al. / Epilepsy & Behavior 9 (2006) 83–88
care from a doctor. Also, more tolerant attitudes towardPWE were evident among clerics who would recommenda doctor. Those who would recommend a healer for epilep-sy care were less tolerant of the condition. More knowl-edgeable clergy were also more tolerant (P = 0.009). Inthe linear regression model with tolerance as the dependentvariable and knowledge composite score, age, years of for-mal education, number of children, and residential statusas the independent variables, only more years of formaleducation was associated with higher tolerance(P = 0.003). This model explained only 15% of the variancefor tolerance among clerics.
4. Discussion
As in many other African countries, epilepsy is astigmatizing condition in Zambia. Previous studies of feltand enacted stigma as perceived by PWE have shown thatepilepsy-associated stigma is not determined by thefrequency and severity of seizures [28]. Qualitative studieshave demonstrated that the etiology of stigmatizing beliefand attitudes toward epilepsy is complex and depends onmultiple factors [29], with knowledge of the disease beingonly one factor. In this study of Zambian clerics, we foundknowledge to be the key determinant of tolerance for epi-lepsy. Stigma theorists have hypothesized that familiaritywith a condition may result in fewer stigmatizing attitudes.Unfortunately, among Zambian clerics, familiarity with thecondition was not associated with more tolerance towardit, even among clerics who reported having a family mem-ber with the disorder. This suggests that increasing clerics’exposure to people with epilepsy will not decrease stigma.
Our study sample was limited to Christian clerics affili-ated with recognized, organized religions in the urban areasand those associated with a physical structure as a place ofworship in the rural regions. Zambia was officially declareda Christian nation by its president in 1991 [7]. Indigenousand/or obscure religious sects are believed to represent lessthan 8% of the population, and even among this popula-tion, dual participation in organized religion is common[30]. However, Muslim, Hindu, and Baha’i citizens repre-sent only 2% of the Zambian population and are concen-trated in the Copperbelt (not in the region we studied).Therefore, this sample is probably reasonably representa-tive of Zambian clerics.
Zambian clerics with more knowledge about epilepsywere more likely to recommend a physician for care, ratherthan a traditional healer or church healing session. Fur-thermore, clerics who viewed epilepsy as a condition besttreated by traditional healers had especially poor tolerancefor PWE, suggesting that if the medical nature of the dis-ease is known, stigma may be less likely.
Clerics are recognized to be an influential social andpolitical group in Zambia. Many have expressed concernsthat religious clergy’s stance on condom usage and orga-nized religions’ approach to individuals with HIV/AIDSmay be serving to fuel AIDS-associated stigma [31]. As
Zambian clerics hold many supernatural and spiritualbeliefs regarding the etiology of epilepsy, their rolein potentially moderating epilepsy-associated stigmawarrants further consideration, and the results of this studyoffer some guidance in developing stigma-reduction inter-vention programs aimed at clerics. Familiarity with thecondition of epilepsy is quite high among clerics, but knowl-edge regarding disease etiology is poor, contagion beliefsare high, and being very familiar with the condition (i.e.,even having a family member with epilepsy) was not associ-ated with more knowledge or tolerance. Although moreknowledge of epilepsy did not clearly result in less stigmatiz-ing attitudes, knowledgeable clerics support PWE seekingbiomedically oriented care, rather than traditional medi-cines. Therefore, improving knowledge among clerics,whose opinions in such matters are frequently sought, isan important step toward decreasing the treatment gap,even if it does not impact stigmatizing attitudes directly.
Determinants of tolerance for epilepsy are morecomplex. Although clearly more knowledge is associatedwith higher tolerance, social factors such as urbanresidence and more formal education appear to be impor-tant and require further consideration. The Neurologicand Psychiatric Society of Zambia (a professional organi-zation) and the Epilepsy Association of Zambia, an affiliateof the International Bureau for Epilepsy, are currentlyworking with religious leaders to develop suchinterventions.
Acknowledgments
Funding for this work was provided by the U.S. Nation-al Institutes of Health (NINDS R21 NS48060). Thanks toMr. Daniel Kalichi, headmaster of Chikankata HighSchool, for assisting with instrument pilot testing, as wellas rural data collection and coordination. We alsoacknowledge the assistance provided by the Epilepsy Asso-ciation of Zambia.
Appendix A. KABP Survey—Clerics’ Version
1. Please provide the following information:
Age ______ (years) Sex: h Male h FemaleHighest grade attained __________ Other training_________________Marital status (Please check one)h Never marriedh Currently married (monogamous)h Currently married (polygamous)h Divorced/separated/widow/widower (not remarried)h Currently married (previously divorced)Number of children ____Residence h City h Rural2. What is your religious denomination?__________________
3. What is the name of your church?______________________________________
M. Atadzhanov et al. / Epilepsy & Behavior 9 (2006) 83–88 87
4. Please check the boxes below indicating the languagesyou speak.
Fluent
Some NoneEnglish
Nyanja
Bemba
Tonga
Lozi
Other (___________)
5. Have you ever heard or read about the disease called‘‘epilepsy’’?
h Noh Yes—If yes, please give the local names for thisdisease.6. Have you ever known anyone with epilepsy?
h Yesh Noh Not familiar with epilepsy
7. Have you ever witnessed a seizure?
h Noh Yes—If yes, please check all those things youobserved:h Loss of consciousnessh Tongue bitingh Stiffeningh Loss of urine or stoolh Confusionh Staring
8. ‘‘A child with epilepsy can have a high level ofintelligence.’’
h Trueh False9. Would you allow your child to play with a child whohas epilepsy?
h Yesh Noh Not familiar with epilepsy10. ‘‘A child with epilepsy should never attend school.’’
h Trueh Falseh Sometimes trueh Not familiar with epilepsy11. Would you allow your son to marry a person withepilepsy?
h Yesh Noh Not familiar with epilepsy12. Would you allow your daughter to marry a personwith epilepsy?
h Yesh Noh Not familiar with epilepsy13. ‘‘Epilepsy is a form of’’: (Please tick all that apply)
h Madnessh Spirit or demon possessionh Mental retardationh Brain disease
14. What do you think is the cause of epilepsy? (Please tickall that apply)
h Brain injury
h Curse from God h Runs in families h Spirit possession h Birth injury h Blood disorder h Excessive worry h Witchcraft15. If you had a friend or relative with epilepsy, what kindof treatment would you suggest? (Tick all that apply)
h See a doctorh See a traditional healerh Acupunctureh See a church healing sessionh Nothing—there is no treatmenth I don’t know what to recommend16. What would you do if you knew that one of the fami-lies attending your church had a family member withepilepsy? (Please tick all that apply)
h Ask the family not to bring the person with epilepsyto church
h Visit the person with epilepsy in their home to prayh Hold a church healing sessionh Help the family to keep this problem a secret
17. ‘‘Epilepsy is a contagious condition.’’
h Alwaysh Sometimesh Never18. Do you have a close family member with epilepsy?
h Yesh Noh Not familiar with epilepsyThank you for participating in this survey. We welcomeany comments you have regarding this survey. Please placethem below.
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