Epilepsy-Associated Stigma in Zambia: What factors predict greater felt stigma in a highly stigmatized population?

Abstract

Epilepsy-associated stigma in Africa has been largely described in terms of enacted stigma or discrimination. We conducted a study of 169 adults with epilepsy attending epilepsy clinics in Zambia’s Lusaka or Southern province using a 3-item instrument (maximum score 3). Potential determinants of felt stigma including age, gender, education, wealth, disclosure status (meaning whether or how their community members knew of their condition), seizure type (generalized vs. partial), seizure frequency, the presence of visible epilepsy-associated stigmata, personal contagion beliefs and community contagion beliefs were also assessed. The median stigma score was 2.5, suggesting some ceiling effect in the instrument. People with epilepsy who believed their condition to be contagious, who thought their community believed epilepsy to be contagious and whose condition had been revealed to their community against their wishes reported more felt stigma. Community and clinic-based educational campaigns to dispel contagion beliefs are needed.

Introduction

The concept of health-related stigma has been conflated somewhat since Goffman’s original descriptions.(1) According to the modern conceptualization, stigma exists when elements of labeling, stereotyping, separation, status loss, and discrimination co-occur in a power situation that allows the components of stigma to unfold.(2) This conceptualization suggests that stigma is likely to be a key determinant of many of the life chances from psychological well-being to employment, housing, and life/survival itself. Epilepsy has long been recognized as a condition generally associated with a significant burden of health-related stigma.

Stigma associated with epilepsy continues to be significant in both developed and developing countries, and stigma is a well-researched concept in the literature on psychosocial aspects of epilepsy. (3) Scambler and Hopkins(4) proposed that stigma has two forms for people with epilepsy (PWE): enacted and felt. Enacted stigma refers to discriminative situations against a person with epilepsy. (5) Felt stigma may result from enacted stigma, but stigma may be “felt” or perceived even if it has not been acted upon. The fear of being discriminated against or stigmatized because of one’s condition can be very troubling even if the actual stigmatizing event feared does not occur. (6) Felt stigma can cause individuals with epilepsy to substantially limit their life opportunities and trajectories.

The stigma literature shows the complexity of the stigma phenomenon and the need for further research. (7, 8) It was argued that some conditions of stigma are culturally dependent, others appear to be universal(9), and the factors associated with stigma are likely multifaceted. A cross-cultural study of epilepsy-associated stigma in ten European countries found that more than half of all respondents did not feel stigmatized at all by their epilepsy and only 17% reported feeling very stigmatized by it.(10) There were significant differences between countries reporting feelings of stigma. Respondents in the Netherlands (27%), and Spain (31%) were significantly less likely to feel stigmatized than were those in Poland (56%) and France (62%). Epilepsy-associated stigma remains prevalent in many Asian countries with significant differences between countries.(11) For example, in South Korea(12), Iran, Hong-Kong(13) and Thailand (MA43) respondents feel more stigma than respondents in Pakistan(14, 15), China and Vietnam. (16) Although people with epilepsy (PWE) in Pakistan do not appear to be highly stigmatized, people of Pakistani origin living in the north of England report experiencing significant stigma and discrimination.(17) Epilepsy-associated stigma remains high in India (18, 19)Laos (20) and Arab countries. (21–23)

Nowhere is epilepsy-associated sigma more disabling than in sub-Saharan Africa (SSA). (24) Possibly due to contagion fears, stigma in SSA extends beyond the individual to family members and other close associates. (25–29). The person with epilepsy is socioeconomically disadvantaged due to discrimination in employment and educational opportunities, the risk of abandonment by spouse and/or family and increased vulnerability to rape and physical abuse. (30) Review of the articles from Asia, Europe, and the US show that the most consistent predictor of stigma is seizure frequency; people with high seizure frequency being more likely have high level of stigma. (11, 16, 31, 32) To date most studies of epilepsy-associated stigma in Africa have focused upon enacted stigma (33) and few quantitative studies to identify determinants of epilepsy-associated stigma in SSA have been published. (29, 34)

Remarkable achievements in understanding the etiology, pathogenesis, genetics and treatment of epilepsy have resulted in excellent control of seizures in many people with epilepsy (PWE). However, the stigma surrounding epilepsy continues to be associated with many negative public attitudes evident in numerous knowledge, attitude and practice surveys. (27, 35–37) PWE continue to suffer from enacted or felt stigma that is presumably based on myths, misconceptions and misunderstandings that have persisted for thousands of years in all cultures. (6, 38) Moreover, cross-cultural comparisons revealed significant differences between cultures, continents, countries, and even between regions of the same country. (10, 11, 16, 39) A multivariate analysis in Europe identified significant contributors to stigma including, age of onset, country and region of origin, feelings about life, and injuries associated with epilepsy. (10) It has been proposed that stigmatization is the result of the continuous interaction between socio-cultural and biological processes in conditions of chronic illness. (40) Studies in poor-resource countries (18–20, 40, 41), including Zambia (30), suggest a greater burden of epilepsy associated stigma in developing countries vs. developed countries. (30, 42)

Understanding and reducing epilepsy-associated stigma is one of the stated aims of the World Health Organization’s Global Campaign Against Epilepsy (GCAE) “Out of the Shadows” initiative. (43) The impact of epilepsy-related stigma on both disease burden and quality of life is of great significance in resource-poor countries. In these countries, epilepsy represents a major public health problem. (2, 3, 44, 45) In sub-Saharan Africa (SSA) epilepsy rates remains very high and the combination of poverty, limited medical care, and traditional beliefs coalesce to severely limit the lives of PWE. In addition to clinical interventions, stigma-reduction interventions are important for improving the lives of PWE.

Stigma is thought to be distributed along power differentials where people with less power (the poor, marginalized, and vulnerable) are likely to be more stigmatized when exposed to the same stigmatizing disease state relative to a more powerful person with the same disorder would experience. (46) The potential burden of health-related stigma may lead people with stigmatizing condition, such as epilepsy, leprosy or HIV, to conceal their condition. Failure to disclose one’s potentially stigmatizing medical problems has implications for an individual’s health if they fail to seek medical care because of efforts to hide their condition. For contagious conditions, there are public health risks implicit if care seeking is delayed. We know little about how to change negative attitudes and experiences about epilepsy in an effective and sustainable fashion. (3) Developing stigma-reducing interventions requires a better understanding the fundamental causes of stigma. Any successful interventions will likely be multifaceted and multilevel. (47, 48)

To better understand determinants of epilepsy-associated felt stigma in a region where epilepsy is highly stigmatized, we undertook a study aimed at identifying underlying determinants of greater felt stigma in Zambia.

Methods

The study population consisted of PWE who were part of a case-control study comparing the social and economic impact of epilepsy to other non-stigmatizing chronic health conditions. (30)

Seven outpatient sites providing epilepsy care were included in this study—five urban, one rural, and one mixed site. The urban sites included the outpatient specialty clinic at the University of Zambia’s University Teaching Hospital in Lusaka and four free-standing clinics in Lusaka associated with Chainama Hills Hospital. Monze Mission Hospital, located on the main tarmac road between Lusaka and Livingstone, serves a mixed peri-urban and rural population in its outpatient department. Chikankata Health Service, located 31 km off the tarmac road 120 km south of Lusaka, operates a busy outpatient department serving a rural population of subsistence farmers. Each site provides care for people with epilepsy as well as for those with a range of medical problems common in the region.

Enrolment and interviews were undertaken between Sept 1, and Dec 31, 2005. Research staff consisted of local healthcare workers fluent in both English and the applicable local languages (Bemba, Tonga, or Nyanja). All research staff received a week of intensive training together as a group to decrease inter-site variability. Potential cases were patients at least 18 years of age who were receiving care for an established diagnosis of epilepsy and who were able to answer questions without assistance from a proxy respondent. At each site, clinical staff registering patients for outpatient visits as well as healthcare workers in the clinic alerted potential participants about the study, their possible eligibility, and where the research office could be found. Potential study participants who presented to the research staff were given further details about participation and eligibility was assessed. Eligible potential subjects were then engaged in a discussion regarding informed consent.

Consenting subjects were interviewed in a private setting. Answers to interview questions were recorded on paper copies of the instrument along with study identification numbers. Names were not recorded on the instrument, but clinic staff made note in their outpatient file of who had already been referred to the study team to avoid duplicate interviews. Interviewers obtained demographic data (age, gender, marital status, household wealth) as well as information regarding the nature of the person’s epilepsy (seizure type, seizure frequency, history of seizure-related injury), their contagion beliefs as well as their assessment of contagion beliefs within the community, and their disclosure status within the community, in terms of whether or not people in their community are aware of their epilepsy and if so whether disclosure was voluntary, or forced when they either had a public seizure or someone who knew about their epilepsy shared this information with others. Felt stigma was assessed via a previously validated three-item stigma scale comprised of dichotomous questions in which a positive response is indicative of felt or perceived stigma with an overall possible score ranging from 0 (no felt stigma) to 3 (maximally felt stigma). (49) Interviewers were also asked to report, rather than ask the respondent, whether or not the respondent had epilepsy-associated stigmata meaning scars consistent with/associated with seizure related injuries. In Zambia, these are visible burn scars and or facial scaring consistent with a facial injury.

Completed questionnaires were copied and copies stored in the central study office at Chikankata. Original hardcopies were used to double-enter data into Microsoft Access before importation into EPI INFO 3.2.2 for analysis. Descriptive data for demographic and clinical characteristics were reviewed as well as information on contagion beliefs, disclosure status, and the findings from the administration of the stigma scale. To examine whether demographic factors, clinical features, or social exposures including disclosure status and contagion beliefs predicted felt stigma, we treated the overall stigma score as a continuous variable and used the student’s t test, or the Kruskal-Wallis test. Based upon suggestions from local primary healthcare workers and patient advocacy groups after presentation of the preliminary data, we conducted a post hoc analysis to assess the relationship between disclosure status and wealth using the Kruskal-Wallis test.

This study was approved by the University of Zambia’s Research Ethics Committee and Michigan State University’s Committee for Research involving Human Subjects. Consent was sought in the potential participants’ preferred language (English, Tonga, Bemba, or Nyanja). The written consent form was provided and was read and discussed orally. Signed consent forms could include a formal signature, an “X”, or a thumbprint based upon the study subject’s preference.

Results

Among 176 potential study subjects, 169 (96.0%) agreed to participate. The demographic and clinical characteristics of participants are outlined in Table 1. The mean age of respondents was 35.5 (range, 16–77 years), and almost half of them (50.3%) were male. More than 94% patients experience generalized tonic-clonic (GTC) seizures. Most of them (81%) had 1–3 seizures per months. About 40% of respondents reported a history of a significant seizure-related injury.

Table 1.

Demographic and Clinical Characteristics (n=169)

Variable	Values
Demographic Data
Age (mean years; range; SD)	35.5 (16–77; 12.6)
Gender (males; n; %)	85 (50.3%)
Education (mean years; range; SD)	7.1 (0–12; 3.1)
Wealth (median US$ value of owned goods; interquartile range)	$64 (IQR $0-1,393)
Clinical Features
Seizure Frequency (n; %)	Less than 1 per month 1–3 per month 1 per week Greater than 1 per week Unsure	77 (45.6%) 60 (35.5%) 11 (6.5%) 20 (11.8%) 1 (0.6%)
Has Generalized Tonic–Clonic (n; %)	Always Sometimes Never Unsure	81 (47.9%) 78 (46.2%) 7 (4.1%) 3 (1.8%)
Gets aura prior to seizure (n; %)	Always Sometimes Never Unsure	55 (32.5%) 80 (47.6%) 0 34 (20.1%)
Reports history of significant seizure-related injury♣ (n;%)	67 (39.6%)
Seizure stigmata♦ noted by interviewer (n;%)	63 (37.3%)

^♣Defined as an injury requiring hospital admission or which led to prolonged disability or dysfunction

^♦Physical scars from burns or other injuries the interviewer attributes to seizures and which are commonly assumed to be a sign of incurable epilepsy in Zambia 24. Baskind R, Birbeck GL. Epilepsy-associated stigma in sub-Saharan Africa: the social landscape of a disease. Epilepsy Behav. 2005 Aug;7(1):68–3.

Characteristics associated with felt stigma are summarized in Table 2. Stigma score ranged from 0 to 3 (mean 1.8, median 2.5, mode 3, SD 1.3). Table 3 details the findings from the assessment to identify potential determinants of stigma. Higher stigma scores were associated with community disclosure, being greatest for those who had forced disclosure either through a public seizure or someone else revealing their condition to the community. People who believed their condition to be contagious or who reported contagion beliefs from within their community also had higher felt stigma. Stigma scores were not associated with age, gender, stigmata, wealth, seizure-type or seizure frequency. In our post hoc analysis, of the relationship between disclosure status and wealth, we found that the ability to choose to conceal one’s epilepsy was significantly associated with one’s wealth (mean wealth for voluntary disclosure $843; forced $770 and none $2,738; p=0.04).

Table 2.

Disclosure Status, Contagion Beliefs, and Felt Stigma (n=169)

Measure	Values
Disclosure:
Do people in your community know that you suffer from epilepsy? (n;%)	Yes, I told them (voluntary)	8 (4.7%)
	Yes, others told them/ they saw me fit forced 147 (87.0%)
	No	14 (8.3%)
Contagion beliefs
I believe my epilepsy is contagious (n; % agree/true)	36 (21.3%)
Do people you know believe your condition is contagious? (n; %)	Yes, most people I know A few people I know No, no one I know	40 (23.7%) 32 (18.9%) 97 (57.4%)
Stigma (answers “yes”=1 point)
I feel some people are uncomfortable with me because of my epilepsy (n; % yes)	105 (62.1%)
I feel some people treat me like an inferior person because of my epilepsy (n; % yes)	101 (59.8%)
I feel some people would prefer to avoid me because of my epilepsy (n;% yes)	98 (58.0%)
Overall score	Mean 1.8; Median 2.5; Mode 3; Range 0–3; SD 1.3 Score of 0: n=18; 10.7% Score of 1: n=49; 29.2% Score of 2: n=18; 10.7% Score of 3: n=84; 50.0%

Table 3.

Assessing for Predictors of Stigma

	Stigma Score	F (df)	p-value
Age (mean years)	Score of 0: 34.2 years Score of 1: 33.9 years Score of 2: 34.8 years Score of 3: 36.9 years	0.61 (3, 164)	p=0.61
Gender	Mean stigma score Men 1.8 Women 1.9	0.31 (1, 166)	p=0.58
Wealth (mean US$)	Score of 0: $1,260 Score of 1: $846 Score of 2: $658 Score of 3: $841	0.92 (3, 160)	p=0.56
Seizure type	Mean stigma score Ever Generalized Tonic Clonic (GTC) 2.0 Never GTC 1.7	1.95 (2, 165)	p=0.15
Seizure frequency	Mean stigma score Less than 1 per month 1.7 1–3 per month 1.9 1 per week 1.5 More than 1 per week 2.3	1.64 (4, 163)	p=0.17
Disclosure status	Mean stigma score Voluntary 1.5 Forced 1.9 None 0.92	3.89 (2, 165)	p=0.02
Personal Contagion Belief	Mean stigma score Present 2.6 Absent 1.3	11.84 (2, 165)	p<0.0001
Community Contagion Belief	Mean stigma score Most 2.0 A few 1.6 None 1.3	3.81 (3, 164)	p=0.01
Stigmata	Mean stigma score Present 2.0 Absent 1.8	1.14 (1, 159)	p=0.29

Discussion

Among this study of a large population of people with epilepsy from both rural and urban areas, disease and stigma burden was high. Voluntary disclosure of one’s status as a person with epilepsy was unusual in our study population. This may be very understandable since people who have been able to conceal their condition experienced less felt stigma. Felt stigma was less for those who were able to conceal their condition from their community and was greater for PWE who believed their condition to be contagious and/or who resided in communities where contagion beliefs were common. Our post hoc analysis of the relationship between wealth and disclosure status suggests that those with greater wealth may have domestic situations offering a level of privacy not routinely available to most (e.g. larger homes so less time spent out in the open, etc.)

Some limitations of this work deserve mention. All of the PWE surveyed were identified through the clinic where they receive care and as such all of them were on treatment. Since the epilepsy treatment gap is >80% in Zambia(50), this is not a representative population. PWE off treatment may have a greater seizure frequency and severity, though milder cases of epilepsy may also be less likely to present for care. Previous studies have indicated PWE in Zambia who are not receiving treatment have a greater risk of significant injury. (51) Our information on community contagion beliefs were obtained through the PWE and represent their perspective of what the community belief is. A more rigorous but methodologically difficult endeavor would be to measure contagion beliefs with each of the many communities. We only assessed felt stigma in this work and our measure was a limited 3-item tool. More detailed extensive stigma measurement tools have been recently developed and might offer better insights into the phenomena.(39)

Traditional beliefs regarding epilepsy in Zambia are often deeply flawed and incorrect (52–57), but in this quantitative study, the important role that contagion beliefs play in felt stigma in this population is notable. Other characteristics we hypothesized might be associated with less felt stigma, such as wealth and the absence of epilepsy stigmata, were not significant factors in this study. Contagion fears have been reported from other regions including Tanzania, Nigeria and even Spanish speaking adults in the US (27, 52, 58–63), but this is the first quantitaive study to delineate the strong relationship between felt stigma and contagion beliefs.

Based upon this study, stigma reduction programs should include major efforts to dispel contagion beliefs among PWE as well as the greater community. If only a single message or “sound bite” can be conveyed, addressing contagion beliefs and debunking these may be the most effective single message.