Background: Felt stigma is a major social and psychological problem in epilepsy and manifests the fear or expectations of such “reactions” from people. Understanding of the pattern and prevalence of felt stigma gives an insight into the burden of this “second illness” of epilepsy in southeast Nigeria. Methods: Consecutive consenting adult epilepsy patients attending a neurology outpatient in Enugu southeast Nigeria were interviewed. Data on felt stigma was also collected using a scale for collection of stigma data on stigma designed by Jacoby et al. Results: A total of 295 patients were interviewed during the study (165 (55.9%) males and 130 (44.1%) females). About 29.4% (88/295) felt stigmatized and 82.1% of them highly so. Correlates of felt stigma were age of onset (negatively), seizure frequency, duration of epilepsy, use of non-orthodox treatment, seizures occurring in public and the presence of physical injuries. Predictors of felt stigma were having seizures in public (R2 = 0.232, p < 0.001) and seizure related injuries (R2 = 0.277, p < 0.001). Conclusions: Felt epilepsy stigma is common among patients attending urban tertiary hospital in southeast Nigeria. Several preventable factors are associated with this phenomenon hence efforts aimed at preventing epilepsy should also target felt stigma prevention.
Stigma remains a major social and psychological problem in epilepsy. It refers to the extent to which people with epilepsy are separated from society on the basis of the meanings that are attached to the term “epilepsy” [
The pattern, intensity and prevalence of both enacted and felt stigma depend on socio-cultural, economic, religious as well as several seizure-related and patient dependent variables [
The prevalence and pattern of felt stigma vary widely depending on the region studied and instrument used. Reports from sub Saharan Africa (SSA) range from 31.2% to 81% [
Aims: The major aim of this study was to evaluate the determinants and predictors of felt stigma among PLWE attending a tertiary facility in southeast Nigeria.
This was a cross-sectional descriptive study conducted among individuals receiving treatment for epilepsy in a tertiary referral specialist hospital. The study was carried out at the outpatient neurology service of the University of Nigeria Teaching Hospital, Ituku Ozalla Enugu. All consecutive consenting patients age 18 and above attending the medical neurology clinic of the University of Nigeria Teaching Hospital and Enugu State University Teaching Hospital were included in the study. Exclusion criteria were 1) refusal to participate, 2) chronic stigmatizing conditions such as HIV/AIDs and psychiatric disorders, 3) history of pseudo-seizures and 4) inability to speak simple English.
Participants who met the outlined inclusion criteria were interviewed with a semi-structured questionnaire, specifically designed by the investigators after a review of the relevant literature. Subjects were interviewed in the clinic. The questionnaire sought to elicit data on socio-demographic variables (sex, age, marital status and education), Seizure related variables (seizure frequency, age of onset, family history of epilepsy, use of non-orthodox treatment (NOT), history of seizure-related injury, having seizures in public). Data on felt stigma was also collected using a scale for assessing felt stigma designed by Jacoby et al. [
Sample size was determined using standard tables for populations up to 1000 (based on the number of epilepsy patients attending our clinic), p was assumed to be 0.5 and a normal deviate of 5% level of significance (2-sided test) = 1.96 [
Ethical clearance was obtained from the Hospital Ethical Committee.
Definition of terms.
NOT of epilepsy was defined as the use of herbal medicine, prayers and other forms of rituals as the sole treatment of epilepsy in the past.
Data were analyzed using SPSS version 22, after due data cleaning. The raw scores were assembled, tallied, put in frequency table and analyzed. The scoring for each item was either “yes” or “no”. Each “YESs” answer was scored as “1” and “NO” as “0”. The answers were summed up and their respective weights are as follows: No stigma = 0, mild stigma = 1, moderate stigma = 2 and severe stigma = 3. The relationships between variables were explored using the Chi squared test for comparison of proportions, and the students’ T-test for comparing the differences in mean age of the participants. Correlation between felt stigma and other variables was calculated using Spearman’s rho statistic. The level of statistical significance for all analyses was set at p < 0.05.
A total of 295 PLWE were interviewed during the study. One hundred and sixty-five (55.9%) were males and 130 (44.1%) were females. Most of the patients were less than 35 years (67% (200/295)). Males were significantly older (mean age 35.6 (±16.4) than females (mean age 30.9 (±13.8), p = 0.01. Although the peak age-of-onset of epilepsy was 11 - 20 years in both males and females, epilepsy started earlier in females (16.6 ± 14.7 years) than males (22.9 ± 20), P < 0.01. Educational status and other variables are shown in
About 29.4% (88/295) of PLWE in the index study had experienced felt stigma at least once. The distribution of positive answers to the three categories of felt stigma is shown in
Male n (%) | Female | Total | p-value | |
---|---|---|---|---|
Age (years) <25 25 - 34 35 - 44 ≥ 45 | - 47 (28.5) 53 (32.1) 22 (13.3) 43 (26.1) | - 50 (38.5) 50 (38.5) 12 (9.2) 18 (13.8) | - 97 (32.9) 103 (34.9) 34 (11.5) 61 (20.7) | 0.03 |
Age of onset (years) 0 - 10 11 - 20 21 - 30 >30 | - 45 (27.3) 56 (33.9) 20 (12.1) 44 (26.7) | - 47 (36.2) 46 (35.4) 25 (19.2) 12 (9.2) | - 92 (31.2) 102 (34.6) 45 (15.3) 56 (19) | 0.01 |
Time of last seizure <24 hours 1 week 1 week- < 1 month 1 - 6 months >6 months-1 year >1 year to 3 years >3 years | - 28 (17) 29 (17.6) 18 (10.9) 13 (7.9) 4 (2.4) 4 (2.4) 69 (41.8) | - 28 (21.5) 17 (13.1) 18 (13.8) 12 (9.2) 3 (2.3) 5 (3.8) 47 (36.2) | - 56 (19) 46 (15.6) 36 (12.2) 25 (8.5) 7 (2.3) 9 (3.1) 116 (39.3) | |
Educational status None Primary Secondary Tertiary | - 18 (10.9) 35 (21.2) 78 (47.3) 34 (20.6) | - 8 (6.2) 14 (10.8) 82 (51.2) 26 (20) | - 26 (8.8) 49 (16.6) 160 (54.20 60 (20.3) | - 0.02 |
Employment status Employed Not employed Students | - 84 (50.9) 32 (19.4) 49 (29.7) | - 54 (41.5) 42 (32.3) 34 (26.2) | - 157 (46.8) 74 (25.1) 21 (28.1) | - |
Total | 165 (55.9) | 130 (44.1) | 295 (100) | 0.04 |
Male n (%) | Female n (%) | Total n (%) | p-value for mean | |
---|---|---|---|---|
Age (years) mean (sd) Median (range) | - 35.6 (16.4) 30 (17 - 88) | - 30.9 (13.8) 27 (16 - 88) | - 33.5 (15.5) 29 (16 - 88) | - 0.01 |
Age of onset (years) mean (sd) Median (range) | - 22.9 (20) 17 (0 - 81) | - 16.6 (14.7) 15 (0 - 80) | - 20.1 (18.1) 16 (0 - 81) | - 0.003 |
Duration of seizures mean (sd) Median (range) | - 12.8 (11.7) 9 (0 - 64) | - 14.3 (11.9) 12 (0 - 58) | - 13.5 (11.8) 10 (0 - 64) | - 0.25 |
Family history of epilepsy Yes | - 30 (18.2) | - 15 (11.5) | - 45 (15.3) | - 0.12 |
Ability to predict seizures Yes | - 89 (53.9) | - 74 (56.9) | - 163 (55.3) | - 0.61 |
I used non-orthodox treatment in the past. | - 74 (44.8) | - 54 (41.5) | - 128 (43.4) | - 0.57 |
I have had seizures in the public Yes | - 73 (44.2) | - 71 (54.6) | - 144 (48.8) | - 0.08 |
History of seizure related severe Injuries Yes | - 71 (43) | - 61 (46.9) | - 132 (44.7) | - 0.5 |
Male | Female | Total | p-value | |
---|---|---|---|---|
a) Some people are uncomfortable with you | 40 (24.2) | 44 (33.8) | 84 (28.5) | 0.07 |
b) Some people look down on you and treat you like an inferior person | 41 (24.8%) | 37 (28.5%) | 78 (26.4) | 0.05 |
c) Some people avoid you | 42 (25.5) | 36 (27.7) | 78 (26.4) | 0.67 |
Total number with felt stigma | 43 (26.1) | 45 (34.6) | 88 (29.4) | 0.11 |
*derived from Jacoby, A et al.26.
Level of stigma (0 none, 1 mild, 2 Moderate, 3 severe). | Male | Female | Total |
---|---|---|---|
No perceived stigma | 122 (73.9) | 85 (65.4) | 207 (70.2) |
Mild | 2 (1.2) | 6 (4.6) | 8 (2.7) |
Moderate | 2 (1.2) | 6 (4.6) | 8 (2.7) |
Severe | 39 (23.6) | 33 (25.4) | 72 (24.4) |
of stigma in males and females were 73.3% (33/45) and 90.7% (39/43) respectively.
Several variables correlated with felt stigma depending on the age of the patients,
Current Age | |||||
---|---|---|---|---|---|
16 - 24 (n = 97) | 25 - 34 (n = 103) | 35 - 44 (n = 34) | ≥45 (n = 61) | 16 - 88 (n = 295) | |
Age | 0.01 (0.92) | 0.01 (0.94) | −0.05 (0.76) | −0.13 (0.32) | −0.11 (0.07) |
Gender | 0.15 (0.14) | 0.08 (0.4) | 0.03 (0.89) | −0.9 (0.49) | 0.08 (0.2) |
Level of education | −0.32 (0.002) | −0.24 (0.02) | 0.1 (0.57) | 0.15 (0.25) | −0.08 (0.17) |
Occupational status (1 yes, 0 No) | 0.02 (0.83) | −0.03 (0.79) | −0.08 (0.66) | 0.38 (0.002) | 0.047 (0.42) |
Age of onset | −0.13 (0.2) | −0.13 (0.2) | −0.23 (0.2) | −0.02 (0.87) | −0.17 (0.005) |
Affected siblings (1 yes, 0 no) | −0.08 (0.44) | −0.13 (0.2) | 0.44 (0.01) | 0.17 (0.17) | 0.1 (0.1) |
Seizure frequency | 0.08 (0.44) | 0.17 (0.09) | 0.32 (0.06) | 0.16 (0.21) | 0.14 (0.01) |
Duration of epilepsy | 0.14 (0.16) | 0.16 (0.11) | 0.27 (0.12) | −0.06 (0.62) | 0.11 (0.01) |
Seizure predictability | 0.09 (0.39) | 0.13 (0.2) | 0.2 (0.26) | −0.04 (0.76) | 0.11 (0.07) |
Use of NOT | 0.1 (0.35) | 0.34 (<0.001) | 0.2 (0.27) | −0.14 (0.28) | 0.17 (0.003) |
Seizure occurring outside home | 0.56 (<0.001) | 0.48 (<0.001) | 0.34 (0.001) | 0.37 (0.004) | 0.38 (<0.001) |
Injury | 0.33 (0.001) | 0.38 (<0.001) | 0.74 (<0.001) | 0.05 (0.73) | 0.38 (<0.001) |
Variable seizure types | 0.08 (0.433) | −0.19 (0.05) | −0.1 (0.57) | 0.06 (0.63) | −0.05 (0.39) |
injuries correlated with felt stigma. Having seizures in public correlated with felt stigma irrespective of age. Before the age of 45, seizure related injury was a significant correlate of felt stigma. In patients older than 44 years, having a job correlated with felt stigma. Predictors of felt stigma were having seizures in public (R2 = 0.23, p < 0.001) and seizure related injuries (R2 = 0.28, p < 0.001),
In SSA, PLWE experiences stigma in several areas of life [
Patient and seizures related characteristics in this study are similar to previous studies from the same region [
Variable | R2 | Beta (SE) | p-value |
---|---|---|---|
Age of onset | - | −0.005 (0.004) | 0.233 |
Seizure frequency | - | 0.123 (0.177) | 0.489 |
Duration of epilepsy | - | 0.002 (0.007) | 0.812 |
Use of non-orthodox medicine | - | −0.061 (0.142) | 0.668 |
Having seizure in public | 0.232 | 1.002 (0.144) | <0.001 |
Seizure related injuries | 0.277 | 0.583 (0.147) | <0.001 |
in about 15.3% of the patients which is lower than 25% - 60% reported by Preux and Druet-Cabanac [
Most PLWE who felt stigmatized (29.4%) were highly stigmatized (81.8%). Highly stigmatized females and males were 73.3% (33/45) and 90.7% (39/43) respectively. Reports on gender differences in epilepsy related felt stigma has been conflicting [
In the index study, age-of-onset negatively correlated with felt stigma while seizure frequency, duration of epilepsy, use of NOT, having seizures in public and seizure related injuries positively correlated with felt stigma. Occupational status correlated with felt stigma in PLWE aged 45 years and above. Unlike previous studies, we did not find a significant correlate between felt stigma and current age of the patients [
The use of NOT also correlated with felt stigma. The relationship between felt stigma and NOT practices may not be direct. Although these patients used NOT prior to the index study, using these forms of treatment increases the risk of having seizures in public, seizure related injuries, forced disclosure and status epilepticus. The contribution of seizure related injuries to epilepsy related stigma becomes more burdensome if NOT-treatment related scarification marks are taking into consideration in SSA.
Having seizures in public spaces which is equivalent to forced disclosure and seizure related injuries were the only significant predictors of felt stigma. This indicates that measures aimed at reducing these two variables would go a long way in reducing the burden of felt stigma. These include medication adherence, access to care as well as lifestyle modifications/avoidance of certain activities like climbing heights. This underscores the need to promote epilepsy care, counseling and treatment at the primary healthcare levels especially in rural and isolated communities in Nigeria. Efforts should be made to give epilepsy more emphasis in the curriculum of medical/nursing schools as well as those of allied professions. There is also the need to provide correct information about epilepsy through sources that are credible to target the larger community, PLWE and their families.
The impact of epilepsy-related felt stigma on both disease burden and quality of life cannot be over emphasized in SSA where epilepsy rates remain very high. Working towards improved treatment accessibility for PLWE should be coupled with efforts directed toward public education about the condition.
Some of the limitations of this study are worthy of note. Our cohort was selected from a pool of PLWE attending tertiary hospital. This may lead to over recruitment of people with severe forms of epilepsy. Although the assessment of felt stigma was done with a three-item instrument which has been validated in Zambia, the use of more complex ethnographically derived instruments might yield different results. Seizure frequency and some other variables might have been affected by recall bias. Nevertheless, this study has provided reference data for future studies in Nigeria and other parts of SSA.
The burden of felt epilepsy stigma is high among patients attending urban tertiary hospital in southeast Nigeria. Several preventable factors are associated with this phenomenon. Efforts aimed at preventing epilepsy should also target stigma prevention.
The authors would like to acknowledge Miss Loveth Emmanuel, Secretary, Neurology and EEG services, Mount Carmel Hospital Enugu, for her help in the office.
The authors have nothing to disclose.
The present work did not receive any external funding.
BAEA, AUJ conceived the study; BAEA, AUJ designed the study protocol; BAEA, CCO, EIA, CLO, NPEA carried out the survey and sorted out the final data; BAEA, AUJ, EIA, OON NCM UNI drafted the manuscript; BAEA, AUJ, CCO, EIA, CLO, NPEA OON NCM UNI critically revised the manuscript for intellectual content; all authors read and approved the final manuscript. BAEA, AUJ are guarantors of the paper.
The authors declare no conflicts of interest regarding the publication of this paper.
Onodugo, O.O., Ezeala-Adikaibe, B.A., Ijoma, U.C., Achor, J.U., Onyekonwu, C.L., Mbadiwe, N.C., Orjioke, C.C., Aneke, E.I. and Ezeala-Adikaibe, N.P. (2018) Determinants of Felt Stigma among Patients Living with Epilepsy Attending a Tertiary Neurology Clinic in South East Nigeria. Open Journal of Psychiatry, 8, 377-389. https://doi.org/10.4236/ojpsych.2018.84029
This questionnaire is designed to find out if have felt stigmatized in the past because of epilepsy. By “felt stigma” we mean your personal opinion or feelings about what people were doing or saying as they relate to you.
Please feel free to ask for clarification if you want.
Every information given will be kept confidential. (Please check all that apply)
Date of assessment _________
Folder number _________
Demographic/Personal
Name: (initials) _________ Age _____ Gender M _____ F ____ Level of education _________
Occupation ____ Working ____ Not working ____ Student ____
Marital status ____ Married ____ Single ____ Widowed ____ Separated ____
Phone Number: ____________________ (or Phone number of next-of-kin)
Tribe ________________ Town _____________
Referred from: ________________
Clinical characteristics
At what age did you start having convulsions? _________________
At what age did you first go to the Hospital? ___________________
Family/Genetic History
Are your parents from the same town Y N
Are your parents distant relatives Y N
Affected siblings? No If yes, how many: ________________
Any other family members
with seizures? No If yes, please explain: ________________
Seizures
1) How often can you predict a seizure (check one)? (Always) (Most of the time) (Rarely) (Never)
2) If you can predict your seizures, what changes or experiences do you have?
Describe ________________
3) Are all the seizures alike? Y N
4) Date of Last Seizure _____ (Approximate length of time in moths or weeks)
5) Have you had seizures outside your family setting e.g. at school, church or market?
Y N
6) Have you sustained ever sustained injuries while having seizures?
Y N
7) Since the onset of seizures (epilepsy) have used traditional or local\herbal medicine?
Y N
8) Since the onset of seizures (epilepsy) have used prayers, deliverance sessions and other spiritual remedies as sole means of treating seizures (epilepsy)?
Y N
Stigma Scale by Jacoby et al.
Because of my sickness (epilepsy):
a) I feel that some people are uncomfortable with me. Y N
b) I feel some people treat me like an inferior person. Y N
c) I feel some people would prefer to avoid me. Y N