Summary
Objective
To assess the knowledge, attitudes, and beliefs of adults on epilepsy in Erute South County, Lira District, Uganda.
Methods
A cross‐sectional study was conducted in rural Erute South County. Two hundred seventeen of 220 randomly selected adults 18 years or older participated in the study. A standardized self‐administered questionnaire (Attitudes towards persons with Epilepsy “ATPE”) was used for data collection. Protocol approval was sought from International Health Sciences University, and informed consent was obtained from participants at all times.
Results
Two hundred seventeen of 220 invited community members completed the study. Females comprised the majority 51.6%.. Most of the respondents had a low level of knowledge on epilepsy. The mean ATPE scale knowledge score was 4.57 (standard deviation [SD] = 3.24) of a maximum score of 11. The male respondents almost had mean knowledge scores almost equal to their female counterparts (4.23, SD = 2.48; 4.51, SD = 2.54, respectively). Most respondents had negative attitudes toward epilepsy, with a mean ATPE attitude score of 73.2 (SD = 2.11) of a possible maximum score of 126. The mean attitude scores for the male and female respondents were 58.18 (SD = 4.23) and 86.62 (SD = 5.23), respectively. Most respondents had negative beliefs such as attributing epilepsy to supernatural spirits, heredity, and preference of traditional medicine and healers to conventional medicine as a treatment for epilepsy. A significant number of respondents expressed sympathetic feelings toward people living with epilepsy, specifically tolerance and kindness to those living with epilepsy.
Significance
Findings could benefit policymakers, the district health team, researchers, community members, affected families, and people with epilepsy in designing awareness strategies. Knowledge on epilepsy could improve the quality of life and care for people living with epilepsy, through reducing misconceptions and stigmatization in the communities where they live.
Keywords: Knowledge, Attitude, Beliefs, Epilepsy, Africa
Key Points.
Knowledge on epilepsy is still low among adults in Uganda
Epilepsy is still attributed to evil spirits
Negative attitudes and misconceptions about epilepsy seem to coexist
Epilepsy is defined as a disease of the brain characterized by the presence of the following: (1) at least 2 unprovoked seizures occurring >24 h apart; (2) one unprovoked seizure and a probability of further seizures similar to the general recurrence risk of at least 60% after 2 provoked occurring over the next 10 years; (3) diagnosis of an epilepsy syndrome.1 Epilepsy affects approximately 50 million people worldwide, making it the most common neurological disorder globally.2 Most people with epilepsy (PWE) live in low‐ and middle‐income countries.2
In the United States, the prevalence of epilepsy is approximately 6 to 8 per 1,000 population, with higher rates among infants and persons older than 60 years of age.2
Causes of epilepsy include stroke, head trauma, alcohol, neurodegenerative diseases, encephalopathy, brain tumors, and infection.2, 3
Epilepsy is a common disorder among adults and in childhood. In children there is an estimated prevalence of 300–600 per 100,000.2
According to the International League Against Epilepsy (ILAE), seizure types and epilepsy syndromes are classified based on clinical grounds, biochemical tests, and neurophysiologic and radiographic studies.4 There are 2 broad categories of seizures: focal (or partial) and generalized seizures.3, 4
People living with epilepsy (PWE) and their next of kin should have knowledge of the availability of antiseizure drugs, drug‐drug interactions, causes of epilepsy, and adverse effects of these management modalities.3
Communities and family members are important in providing information on behavioral or environmental factors that trigger seizures among PWE. They can provide information on seizure triggers such as sleep deprivation, alcohol intake, and stress.5, 6 This information is important for the health care team during the assessment of epilepsy.
Such information is important in diagnosis and epilepsy treatment.
Misconceptions continue to prevail in communities, which leads to poorly managed epilepsy, and thus many epileptic patients continue to get seizures. This creates a treatment gap that triggers patients and their caretakers to seek alternative sources of treatment such as cannabinoids.7, 8
The burden of epilepsy in sub‐Saharan African is high. A study in Kenya reported a lifetime epilepsy prevalence of 20.9 per 1,000 and that of active epilepsy was 11.5 per 1,000.9 A cross‐sectional study conducted among 3,000 adult Ugandans in the rural and urban Mukono district showed that the prevalence of epilepsy was 8.5% from a sub‐sample of 98 respondents with confirmed neurological disorders.10
Although the causes of stigma toward epilepsy among the population are complex, lack of knowledge has been considered an important determinant of negative attitudes towards PWE. There is a need to ascertain the knowledge, attitude, and beliefs about epilepsy so as to inform policymakers and service providers on the community's needs with regard to causes, transmission, and treatment of epilepsy. The aim of this study was to assess the knowledge, attitudes, and beliefs of adults with regard to epilepsy.
Methodology
Study design
The study used a cross‐sectional design. Data collection was conducted from April to July 2017.
Study area
The study was conducted in Erute South County, a rural village located in the eastern part of Lira District. Erute South County is one of the 4 counties that form Lira District. Lira District is located in the Lango sub‐region in Northern Uganda and is bordered by the districts of Pader, Otuke, Alebtong, and Apac. The setting constitutes part of the region affected by the war against rebels of the Lord's Resistance army in Northern Uganda.
Study population
The study population was predominantly a rural population comprising of members of the community of Erute South. Inclusion criteria: Community members of Erute South, above 18 years, who had lived in the area for more than one year were included in the study. Exclusion criteria: community members with major mental illnesses such as schizophrenia were excluded from the study.
Sampling technique
Simple random sampling techniques were used to select the participants. A list of community members was obtained from the Local Council Authority and this was used as the sampling frame. A list of random numbers was used to select the participants from the sampling frame. This was done until the sample size was reached. A sample size of 220 was required for this study.
The Village Local Council Leaders communicated to the community about the study during village meetings and during village rounds. After selection of the participants, the local leaders contacted the selected participants and gave the researcher directions to their homes. The researcher then administered the questionnaires at the homes of the participants.
Data collection instruments
A structured questionnaire was developed from Antonak's tool of assessing Attitudes Towards Persons with Epilepsy (ATPE).11 The final tool consisted of 4 parts. Part 1 assessed sociodemographic variables. Part 2 assessed knowledge regarding epilepsy. Part 3 assessed attitudes toward epilepsy. Part 4 assessed the beliefs toward epilepsy. The tool was pretested among 20 participants and adjustments were done to the initial tool. The final tool was further validated by 4 experts at International Health Sciences University.
Data analysis
The questionnaires were checked for completeness immediately after the interview. Data were then entered into Microsoft Excel; this was later exported to Statistical package for Social Scientists (SPSS) Version 20 for analysis. A 95% confidence interval was considered for the study.
Ethical considerations
The research protocol was approved by the research and ethics committee of the School of Nursing of International Health Sciences University (IHSU). The researcher then introduced the protocol to the local authority with an introductory letter from IHSU for authorization to conduct the study in the area. In addition, informed consent was at all times availed to the participants before the interview and participation in the study was voluntary.
Results
Two hundred twenty participants were invited to participate; 217 completed the study. Therefore a 98.6% response rate was achieved in this study. Three participants declined to participate in the study. Demographic characteristics of the respondents in the study sample are summarized in Table 1. The median age of the respondents was 25 (18–75 years). Females comprised the majority 51.6%. Most respondents were aged between 26–35 years (49.3%).
Table 1.
Demographic characteristics of the respondents in Erute South County, Lira District, Uganda (N = 217)
| Characteristics | Frequency (n) | Percentage (%) |
|---|---|---|
| Age in years | ||
| 18–25 | 80 | 36.8 |
| 26–35 | 107 | 49.3 |
| Above 35 | 30 | 13.9 |
| Gender | ||
| Male | 105 | 48.4 |
| Female | 112 | 51.6 |
| Marital status | ||
| Single | 57 | 26.3 |
| Married | 114 | 52.5 |
| Widowed | 12 | 5.5 |
| Separated | 15 | 7.01 |
| Divorced | 19 | 8.7 |
| Employment status | ||
| Employed | 97 | 44.7 |
| Unemployed | 120 | 55.3 |
| Level of education | ||
| None | 30 | 13.8 |
| Certificate | 94 | 43.3 |
| Diploma | 70 | 32.2 |
| Degree | 23 | 10.7 |
| Religion | ||
| Muslim | 20 | 9.2 |
| Traditionalist | 10 | 4.6 |
| Christian | 172 | 79.3 |
| Other | 15 | 6.9 |
| Tribe | ||
| Langi | 74 | 34.1 |
| Acholi | 113 | 52. |
| Other | 30 | 13.9 |
| Had a family member affected by epilepsy | ||
| Yes | 20 | 9.2 |
| No | 197 | 90.8 |
| Relationship with family member with epilepsy | ||
| Mother | 2 | 10 |
| Father | 4 | 20 |
| Sister | 4 | 25 |
| Brother or male relative | 6 | 20 |
| Other | 5 | 25 |
With regard to marital status, most respondents were married (52.5%). Most respondents reported that they were unemployed (55.3%). Most respondents had attained a certificate in education (43.3%), whereas with regard to religion, most of the respondents were Christians. The Acholi constituted the majority tribe (52%).
Most respondents reported that they never had a family relative with epilepsy. Those who had a family member with epilepsy mostly reported that a male child or sibling had epilepsy (Table 1).
Knowledge on epilepsy
All respondents had at least ever heard of epilepsy, primarily from a family member (32.7%) or friends (25.3%). The most common cause of epilepsy reported included evil spirits (40.2%) and inherited disease (30.2%). Other causes reported by the participants included mental retardation, mental illness, and other causes. The majority reported that they had never taken care of a person with epilepsy (Table 2).
Table 2.
Awareness on epilepsy among adults in Erute South County, Lira District, Uganda
| Variable | Frequency | Percentage |
|---|---|---|
| Ever heard of epilepsy | ||
| Yes | 217 | 100 |
| No | 00 | 0 |
| Source of information | ||
| Friend | 55 | 25.3 |
| Family member | 71 | 32.7 |
| Newspaper | 16 | 7.3 |
| Television | 25 | 11.5 |
| Radio | 50 | 23.0 |
| Causes of epilepsy | ||
| Evil spirits | 87 | 40.2 |
| Mental retardation | 15 | 6.7 |
| Mental illness | 10 | 4.6 |
| Inherited disease | 65 | 30.2 |
| Other | 40 | 18.3 |
| Ever had a member of family with epilepsy | ||
| Yes | 22 | 10.1 |
| No | 195 | 89.9 |
| What was the relationship with member of family with epilepsy (n = 22)** | ||
| Mother | 4 | 18.8 |
| Father | 3 | 13.6 |
| Sister | 2 | 9.09 |
| Brother | 6 | 27.3 |
| Child | 7 | 31.8 |
| Ever taken care of person with epilepsy | ||
| Yes | 20 | 9.2 |
| No | 197 | 90.8 |
N = 217.
**Only respondents who reported to have ever had a family member with epilepsy.
Generally, the majority of the respondents had a low level of knowledge on epilepsy. The mean ATPE knowledge score was 4.57 (SD = 3.24) of a maximum score of 11. The male respondents almost had mean knowledge scores equal to the female counterparts (4.23, SD = 2.48; 4.51, SD = 2.54, respectively).
Attitude toward epilepsy
The mean ATPE scale attitude score for the entire sample was 73.2 (SD = 2.11) of a possible maximum score of 126. The mean attitude scores for the male and female respondents were 58.18 (SD = 4.23) and 86.62 (SD = 5.23), respectively. The majority of the respondents had wrong attitude toward staying with a person with epilepsy; they reported that staying with PWE is not good (61.7%). However, most respondents reported that PWE should not be discriminated in society (96.3%). Most participants reported that they wouldn't help a person with epilepsy during a seizure, whereas the majority agreed that PWE should also have a family (Table 3).
Table 3.
Attitudes toward epilepsy among adults in Erute South County, Lira District, Uganda
| Attitude | Frequency (n) | Percentage (%) |
|---|---|---|
| Living with a person with epilepsy is not good | ||
| Agree | 134 | 61.7 |
| Disagree | 83 | 38.3 |
| Epilepsy occurs following alcohol/drug abuse. | ||
| Agree | 13 | 6.0 |
| Disagree | 204 | 94.0 |
| Do you think that society should discriminate persons with epilepsy | ||
| Agree | 8 | 3.7 |
| Disagree | 209 | 96.3 |
| Willing to help people with epilepsy during an episode of a seizure | ||
| Agree | 22 | 10.13 |
| Disagree | 195 | 89.87 |
| Persons with epilepsy should have families | ||
| Agree | 211 | 97.2 |
| Disagree | 6 | 2.8 |
N = 217.
Beliefs on epilepsy among respondents
With regard to beliefs toward epilepsy, most of the respondents reported that they believed that PWE have good capabilities (50.7%). Indeed, the majority believed that PWE are allowed to associate with others in the society (94%) (Table 4).
Table 4.
Beliefs on epilepsy among adults in Erute South County, Lira District, Uganda
| Belief categories | Frequency (n) | Percentage (%) |
|---|---|---|
| Capabilities of persons with epilepsy | ||
| Good | 110 | 50.7 |
| Moderate | 36 | 16.5 |
| Poor | 71 | 32.8 |
| Persons with epilepsy allowed to associate with others | ||
| Yes | 204 | 94 |
| No | 3 | 6 |
| Would you object to a person with epilepsy marrying a close relative | ||
| Yes | 29 | 13.4 |
| No | 188 | 86.6 |
| Persons with epilepsy should have children | ||
| Yes | 122 | 56.2 |
| No | 40 | 18.4 |
| Not sure | 55 | 25.4 |
| Associate with persons with epilepsy in social gatherings | ||
| Yes | 187 | 86.1 |
| No | 30 | 13.9 |
| I would change my attitude to an acquaintance with proper knowledge on epilepsy | ||
| Yes | 193 | 88.9 |
| No | 24 | 11.1 |
| I could have a person with epilepsy as a close friend | ||
| Agree | 194 | 89.4 |
| Disagree | 23 | 10.6 |
| What would you prefer as a treatment for epilepsy? | ||
| Medical treatment | 104 | 47.9 |
| Traditional medicine or healers | 113 | 52.1 |
N = 217.
More than a half of the respondents had a negative belief toward the marital plight of PWE. They reported that they couldn't accept a close relative marrying a person with epilepsy (86.6%, n = 188). On the other hand, most believed that persons with epilepsy should have children (56.2%).
Socially, most respondents (86.1%) had a positive belief toward associating with persons living with epilepsy during social gatherings. More than half (88.9%) of the respondents reported that they could change their beliefs and attitude toward epilepsy with proper acquaintance of knowledge on epilepsy. The majority (89.4%) believed that they could have a person with epilepsy as a close friend.
The majority of the families harbored negative beliefs such as intolerance, attributing epilepsy to possession by spirits, and preferred to treat epilepsy with the help of traditional healers and herbal medicine. Heredity was also identified as one of the causes of epilepsy (Table 4).
On the other hand, most of the respondents had sympathy, tolerance, and kindness towards PWE. Forty‐five percent of the respondents were sympathetic toward the plight of persons with epilepsy, with females showing more inclination for sympathy compared to their male counterparts. The female respondents, however, tended to be more fearful and suspicious and to avoid the persons with epilepsy more than their male counterparts did (Table 4).
Discussion
This study provides important information on the knowledge, attitude, and beliefs on epilepsy among an adult sample from a war‐affected area in Northern Uganda. The study setting is a rural village with many of its members having experienced some effects of war such as psychological stress and trauma. The demographic characteristics of the sample are similar to those from the recent national population survey in terms of gender, age, level of education, and employment status.12 Our study demonstrates a low knowledge on epilepsy among adults. The male respondents had mean knowledge scores almost equal to that of their female counterparts. This is lower than that reported among a Ghanaian cohort.8 Our study demonstrates a need to health educate people on the causes, transmission, and management of epilepsy so as to modify their knowledge on epilepsy.
Emerging evidence on sources of information on epilepsy from our study findings indicated that family members and friends were the most common sources of evidence on epilepsy. This could ultimately help interventionists to design appropriate strategies of creating awareness on epilepsy.
The most common cause of epilepsy reported included evil spirits and inherited disease. This is similar to findings reported from Winkler's study conducted in a rural community in northern Tanzania. A significant number of respondents (46.7%) reported that epilepsy was due to supernatural causes.13 A similar study in Kenya also noted that many people associated epilepsy with witchcraft.12
The majority reported that they had never taken care of a person with epilepsy. This could be attributed to a lack of knowledge on how to live and care for PWE. On the other hand, misconceptions on the causes of epilepsy such evil spirits could limit some person from caring for a person with epilepsy. Similar studies conducted in Uganda also reported that respondents had ever heard of epilepsy but attribute it to supernatural causes.10, 14
Attitude toward epilepsy
Given the low level of knowledge on epilepsy, it is not surprising that the mean ATPE scale attitude score for the entire sample was moderate. These unfavorable attitudes can in turn lead to neglecting PWE and stigma in the community. Various studies have also reported similar findings from different communities.13, 14, 15, 16 Many organizations including the office of the Prime Minister are working in this area to improve literacy and livelihood of the people living in the war‐torn Northern Uganda.17 Organizations working in the war affected northern region of Uganda could benefit from finding on the level of knowledge, attitude and beliefs of community members on epilepsy.
The majority of the respondents had a wrong attitude toward staying with a person with epilepsy, indicating that it was not good. While most respondents disagreed that that society should discriminate persons with epilepsy. Most participants reported that they wouldn't help an person with epilepsy during a seizure, whereas a majority agreed that persons with epilepsy should have a family. This is right, since persons with epilepsy if properly managed can live a good quality of life.
Beliefs on epilepsy among respondents
This study unveiled that many people had positive beliefs about the capabilities and social life of PWE. Indeed, people with epilepsy have good functional status in the absence of seizures and can perform activities of daily living normally. This finding is similar to that reported in Kolahi's study conducted in a teaching hospital among mothers of children with epilepsy.16
On the other hand, negative beliefs existed toward the marital plight of PWE. However, the majority believed that persons with epilepsy should have children. The objection to marrying PWEs could be due to the negative attitudes and low knowledge on epilepsy in the community. This finding is in line with that of Berhe18 reported about an Ethiopian community.
Most respondents noted they could socialize with PWE during social gatherings and could accept PWE as friends. Ideally, PWE can socialize with others easily in the absence of seizures and are usually not violent.
The fact that more than half of the respondents reported that they could change their beliefs and attitudes toward epilepsy with proper acquaintance of knowledge on epilepsy is a good indicator that interventionists can use to create awareness.
Most respondents expressed sympathy for PWE. Similar findings have been reported in other studies.15, 17, 19, 20 The female respondents, however, tend to be more fearful. Public beliefs and stigma toward epilepsy may limit patient motivation for treatment and participation in social activities.21
The study showed that there is low knowledge, negative attitudes, and misconceptions about the causes, treatment, and other aspects of epilepsy in Uganda. Therefore, there is need to educate the communities on epilepsy. Community awareness campaigns should be directed toward improving knowledge on cause, management, and transmission of epilepsy.
Disclosures
The authors declare that they have no competing interests. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
Authors’ contributions
Both authors took part in conception, design, and the final version of the manuscript. FK was involved in literature review, data analysis, and writing of the manuscript, while ACO was involved in methodology and writing of the manuscript.
Funding
The authors received no funding for this project.
Acknowledgement
The authors extend special thanks to Mrs. Catherine Lwanira, Mrs. Okecho Florence, and Ayot Evelyn Grace of International Health Sciences University.
Biography
Frank Kiwanuka is an MSc Intensive Care Nursing Candidate at Tehran University of Medical Sciences
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