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Epilepsy beliefs and misconceptions among patient and community samples in Uganda
Abstract
Objective
The objective of the study was to characterize and compare the attitudes, beliefs, and perceptions about epilepsy across community and patient cohorts in Uganda.
Methods
This was a descriptive study utilizing two samples: a randomly selected, national survey community sample and a hospital-based patient sample of people with epilepsy (PWE) and their caregivers attending clinic settings in Kampala and Mbarara, Uganda for epilepsy care. Both samples were surveyed about their beliefs about epilepsy, its treatment, and people who have the illness. Multivariate linear regression was used to examine group differences and variables associated with specific beliefs.
Results
Among the 15,818 community survey participants who participated in this study, 435 study participants reported symptoms suggestive of recurrent seizures, and all 626 subjects in the hospital-based sample had confirmed epilepsy. Results revealed significant differences across groups in their endorsement of epilepsy as a contagion; 37% of people in the community unaffected by epilepsy, and 39% of people with suspected epilepsy who did not seek care believed that epilepsy was contagious by touch, in contrast to 8% of PWE or their caregivers attending regular hospital-based care. Higher educational attainment and income, and seeking regular hospital-based medical care were associated with less endorsement of epilepsy as a contagion, while age, education, income, area of residence, and presence of seizure symptoms, were significant predictors of support or belief in the basic rights of PWE. Study participants within the community who screened negative for seizures placed the most restrictions on rights for PWE. To varying degrees, the samples all endorsed the effectiveness of allopathic, traditional, and religious providers, and the use of pharmaceutical drugs, traditional rituals and herbs, and prayer.
Conclusions
People with epilepsy who are attending biomedical care for routine epilepsy care think differently about epilepsy, its treatment, and the rights of those with the disease than the general population. Within the community setting, more erroneous beliefs and negative attitudes about epilepsy and PWE persist, and they not only contribute to stigma but also interfere with the patients' health-seeking behavior. Further confounding the care of PWE, the pluralistic healthcare system in Uganda is evident in endorsements spanning biomedical, traditional, and religious treatment methods. Focused awareness campaigns utilizing local epilepsy societies are needed to promote epilepsy health literacy, to favorably impact acceptance and opportunities for PWE in Uganda, and to facilitate efficient uptake of biomedical care.
This article is part of the Special Issue “The intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda"
... The study of beliefs and misconceptions across community and hospital samples demonstrated that having limited exposure or experience with PWE greatly impacts one's attitude towards them, beliefs about communicability, considerations of the rights and entitlement of PWE, and ideas about the management of the disease [13]. While there are few similar studies in Africa, negative attitudes and stigma towards PWE resulting from lack of understanding and exposure are a global phenomenon [14,15]. ...
... The majority of community members in Uganda believe that epilepsy is a communicable, contagious disease [13]. This sociocultural belief has overshadowed the misconceptions about epilepsy in a number of African settings [16][17][18] with urine, saliva, flatus, or feces implicated as conferring the contagion. ...
... Our study confirms prolific misconceptions about epilepsy, its origins, and its treatment in community settings [13]. Those with limited exposure or experience with epilepsy are the most likely to maintain that epilepsy is communicable and to limit the rights of PWE [13]. ...
In this summary paper, we review the body of research contained in this special issue, The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda, and corollary recommendations for a way forward. We review key findings and conclusions for the studies, which tell a story of culture and care-seeking through discussions and data gleaned from a rich research landscape traversing community village dwellings, shared communal areas, churches, and urban hospitals. The voices and perspectives of over 16,000 study participants inclusive of people living with epilepsy, their neighbors and healthcare workers, traditional healers, and faith leaders are reported. From this, we synthesize findings and prioritize a set of recommendations to advance epilepsy care in Uganda. Progress will require infrastructure strengthening, multilevel educational investments, and an ambitious, extensive program of community sensitization. These proposed priorities and actions outline a way forward through formidable but surmountable challenges but require harmonized efforts by government and other relevant stakeholders, scholars, clinicians, and community leaders.
This article is part of the Special Issue “The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda”
... Prevalence of psychiatric comorbidities of epilepsy: the prevalence of 38.9% in our study is lower than the 58% reported in south-western Uganda in 2020 [16]. Although health services in the central region (urban) are more improved, caregivers of children with epilepsy wish their children to stay in remote areas due to stigma associated with the disease [35]. Additionally, those who may have serious behavioral challenges are kept in remote areas as they may not stabilize in school, yet parents are busy at work in the urban settings. ...
... In turn, they are admitted and put under observation. While mental health awareness has gained global attention, the community remains unjust in endorsing the basic rights for children and adolescents with epilepsy, such as health care [35]. This is evidenced by the fact that participants in this study had a two-year delay to initiate health care. ...
Abstract
Introduction: psychiatric comorbidities of Epilepsy are common. In order to improve the overall quality of life of the affected individuals it is imperative for clinicians to screen and treat these conditions early. We aimed at determining prevalence of psychiatric comorbidities of Epilepsy and treatment gap among children and adolescents (6-17) at Butabika Hospital.
Methods: we conducted a cross sectional study; psychiatric disorders were assessed using the Mini International Neuropsychiatric Interview for Children (MINI-kid 7.0.2 version) and clinical data abstraction was used to collect data from patient file. Quantitative data was analyzed using SPSS v25 software while qualitative data was analyzed using thematic analysis. The study followed the Consolidated criteria for Reporting Qualitative research (COREQ) and statement on guidelines for Strengthening The Reporting of Observational studies in epidemiology (STROBE).
Results: a total of 157 participants were enrolled and, 38.9% (95%CI: 31.5-46.6%) had at least one psychiatric disorder whereas 12.1% had two or more psychiatric disorders. Attention Deficit Hyperactivity Disorder (11.5%), Autism Spectrum Disorder (7.0%) and Major Depressive Disorder (5.1%) were the most common psychiatric disorders. The treatment gap was 33.1% (95%CI: 26.1-40.7%). The barriers to screening were challenging psychiatric disorders, exhausting to screen; and inadequate diagnostic information. The barriers to treatment were poor compliance to treatment, poorly controlled seizures and inadequate human resource.
Conclusion: psychiatric disorders are highly prevalent among children and adolescents with Epilepsy but there is substantial screening and treatment gap. To close the gap, there is need to address institutional, caregiver and patient barriers to screening and treatment of the psychiatric comorbidities. Improving human resources, capacity building and provision of basic requirements for screening, could reduce the assessment and treatment gap.
... Typically, the patient is likely to enjoy lengthier individual attention in this setting, with open communication over a one-to four-hour period [26]. In contrast, while the biomedical setting typically affords less time for the doctorpatient interaction, PWE and their caregivers seeking care in these clinics have more accurate knowledge and perceptions about epilepsy, likely due to the essential psychoeducation that takes place in the context of specialized epilepsy care [31,34]. Discussion and negotiation between patients and healthcare providers establish an important contract of disease management. ...
... In resource limited settings, communities lack information about epilepsy as a chronic, noncommunicable disease, and misconceptions are ubiquitous [34]. Many are unaware of the possibility of treatment and control of the disease, the potential triggers and precipitants of seizures, and the role and side effects of AEDs [39]. ...
Objective:
Epilepsy, a neurological disorder with effective biomedical treatment, remains largely untreated in Uganda. Potential reasons for this treatment gap (TG) include limited access to trained providers and clinics, social stigmata of seizures, cultural beliefs, or lack of public understanding of epilepsy as a treatable condition. The current study aimed to formally evaluate barriers faced by people with epilepsy (PWE) in Uganda when seeking biomedical care.
Methods:
In a cross-sectional study, 435 participants drawn from a community prevalence study were enrolled. We included participants reporting a history of recurrent seizures suggestive of epilepsy, who completed a survey about barriers to obtaining care for their symptoms. Principal axis factor analysis (PFA) using a promax rotation was conducted for data reduction. Frequencies of barrier factors were compared across those who did not seek care for epilepsy (n = 228), those who sought care from biomedical facilities (n = 166), and those who sought care from a traditional or pastoral healer (n = 41).
Results:
The PFA yielded a five-factor solution: 1) logistical and actual costs; 2) treatment effectiveness; 3) influence of the opinion of others; 4) doctors' care; and 5) contextual factors impacting decision-making. Variables related to logistical and actual costs were most endorsed. Comparison of groups by care sought did not reveal a difference in endorsement of factors, with the exception that those who sought biomedical care were more likely to endorse factors related to doctors' care compared with those that sought care from traditional or pastoral healers (P = .005).
Conclusions:
People with repetitive seizures in Uganda report several barriers to obtaining biomedical care in Uganda, with those related to practical and actual costs endorsed the most. It is imperative that interventions developed to reduce the TG in Uganda consider these practical issues to improve access to effective epilepsy care. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda.
... 24,25 In Uganda, for example, almost 40% of the population believes that traditional healers can treat epilepsy, with almost 10% of affected patients and families going to a traditional healer before a physician. 17,26 Therefore, before training neurosurgeons to perform epilepsy surgery, DGNN continues to work with Ugandan neurologists and governmental entities to establish infrastructure and perform patient education around epilepsy. 27 To navigate cross-cultural collaborations, it is critical to emphasize clear communication and the development of mutual trust between stakeholders. ...
Neurosurgery has long faced significant disparities in access to care in low- and middle-income countries (LMICs), where millions lack access to timely, lifesaving neurosurgical interventions. The Duke Division of Global Neurosurgery and Neurology (DGNN) was established to address these inequities by building sustainable neurosurgical capacity through strategic partnerships, training programs, and service initiatives. DGNN’s framework evolved from the initial "3-Ts" approach—technology, twinning, and training—to a broader focus on service, research, and training, prioritizing local ownership of neurosurgical systems. Key challenges, such as resource limitations, cross-cultural collaboration, and the retention of trained professionals, were overcome through collaborative efforts and a commitment to capacity building. The introduction of digitized health records and data systems, along with research projects in epilepsy and traumatic brain injury, contributed to a comprehensive model of growth. Through these initiatives, DGNN has expanded neurosurgical services and increased the number of trained neurosurgeons in Uganda, creating a sustainable model that can be adapted to other countries. This paper outlines DGNN’s history, challenges, and strategies with the goal of establishing a framework for other institutions to grow similar initiatives and divisions.
... The reason for these disruptions in social relationships could be attributed to the beliefs, myths, and misconceptions of the public towards epilepsy. Evidence from the Ugandan community showed that the public still had beliefs that epilepsy was contagious and spiritual and that it needs traditional healers or prayers [41], More evidence from Uganda from rural and urban areas demonstrated limited knowledge in regards to epilepsy among the general public [42]. A systematic review in Sub-Saharan Africa further demonstrated that there is a substantial misconception, negative attitude, and stigma surrounding epilepsy in this region where Uganda falls [43]. ...
Introduction
Epilepsy has been found to affect caregivers’ quality of life, lifestyle, psychological health, social well-being, and working time. Caregivers in Uganda as in the rest of the world are important in assisting a person with epilepsy in complying with medical directions and are actively involved in communicating with healthcare professionals. Little is known about the lived experiences of caregivers of persons afflicted with epilepsy in Uganda. The purpose of this study was to determine the lived experiences of caregivers of persons with epilepsy attending the epilepsy clinic at Mbale regional referral hospital, eastern Uganda.
Methods and materials
The caregivers’ lived experiences were elicited directly from them and their health workers who work with them in the care of the patients. Forty participants which consisted of 30 caregivers and 10 key informant health workers were selected for the study through purposive sampling. Face-to-face in-depth interviews with an unstructured interview guide were conducted to gather participants’ information. The principal investigator conceptualized the interview guide, the guide was then reviewed by co-investigators, and revised and approved as the final data collection instrument after an extensive and comprehensive literature review. The interview guide comprised two sections; the first section comprised the questions that elicited the participants’ social-demographic information. The second section comprised questions that explored caregivers’ experiences of persons afflicted with epilepsy. Notations were taken and a digital recorder was used purposely for audio recordings. All interviews lasted for an hour and were audio-recorded with the participant’s consent. An inductive thematic analysis was employed and adopted to identify the patterns emerging from the texts.
Results
The caregivers majorly perceived epilepsy as a burden. Four main themes were revealed from the analysis and these are: psychological burdens which included, worries about the future of the patient, being looked down upon; social burdens which entailed, affected public relations, feelings of stigma; an economic burden which included interference with the source of income, affected productivity at work; and physical burdens which included, Feelings of uneasiness and disrupted sleep among others.
Conclusion
The caregivers majorly perceived epilepsy as a serious burden. This burden can be psychological, social, economic, and physical. Therefore, services and plans targeting patients with epilepsy need to consider the burden that caregivers encounter to comprehensively manage epilepsy.
... Family history of neuropsychiatric disorders is hardly believed to be negative as several association studies have already established the crucial relationship of parental psychopathology in patients with epilepsy, autistic spectrum disorder, attention deficit hyperkinetic disorder, and tics. [96][97][98][99][100][101][102][103][104][105][106] ...
Neurological disorders and psychiatric ailments often lead to cognitive disabilities and low attainment of education, pivoting misconceptions, myths, and misbeliefs. Poverty and low educational attainment are intriguingly associated with poor awareness and perception of these diseases that add to the suffering. Poverty goes parallel with a low level of education and is intricately associated with neuropsychiatric ailments, which have the potential to spread transgenerationally. Robust education policies, proper government rules and regulations against the spread of disease-related myths and misconceptions, uplifting medical education in its true sense, voices against consanguinity, and programs to raise scientific perception about diseases can help to throw light at the end of this dark tunnel. In this article, the authors intend to 1) decipher the potential psychosocial basis of human suffering and poverty in patients with neurological and psychiatric disorders, and 2) discuss the apropos way-outs that would potentially mitigate suffering, and alleviate the economic burden and cognitive disabilities of families with neuropsychiatric diseases.
... The presence of depressive disorders in PwE is associated with poorer QoL and increased healthcare utilization, and may affect worse medical outcomes, e.g., poorer seizure control and increased side effects associated with antiseizure medication (ASM) [2,8,9,10]. Furthermore, depression may exacerbate adverse events associated with ASM, e.g., suicidal ideation, and may add to the perceived and felt stigma in PwE [2,11,12,13,14,15]. Screening for depression in PwE has therefore been recommended in clinical practice [16]. ...
Introduction
Depression is the most common psychiatric comorbidity for persons living with epilepsy. In Rwanda, the prevalence of epilepsy and depression are high, with 4,9% and 13.0% respectively. This prospective interventional study aimed to determine the prevalence and incidence of depression and the outcome of persons living with epilepsy (PwE) with depression attending the outpatient neurology department of a tertiary center.
Methods
Persons living with epilepsy enrolled between February and June 2018 in a screening cohort with a 12-month follow-up. At every 3-month study visit, PwE were screened for depression using the Patient Health Questionnaire (PHQ-9) questionnaire. Any positively screened subject was administered the Hamilton Depression Rating Scale (HDRS) to confirm the diagnosis and severity of depression. Subjects with moderate to severe depression (MSD), were started on treatment and were followed for another year. We describe the prevalence and incidence of depression, baseline characteristics, epilepsy and depression outcomes, and changes in PGI-C.
Results
Of 572 PwE enrolled, 46 were diagnosed with MSD in a twelve-month period, resulting in an incidence of MSD of 32.7/1000 patient-years. The prevalence of any depression and MSD was 14.2% and 4.7%, respectively. Longer epilepsy duration and seizure status at baseline were associated with MSD. Significant improvements in PGI-C and seizure frequency were observed after treatment optimization.
Conclusion
The use of PHQ-9 and HDRS proved successful in identifying depression in PwE. Combined treatment of epilepsy and depression resulted in improved outcomes, warranting the implementation of depression screening every six months in daily neurology practice.
... Conceptualizations of the etiology of epilepsy vary among cultures, often involving biological, sociospiritual, or biospiritual factors. A common belief is that epilepsy is a communicable and contagious disease [60][61][62][63]. Other explanations for the cause of epilepsy include possession by an evil spirit, a form of dementia, a type of mental disorder, a blood disorder, or solely a psychiatric disease [63][64][65][66][67][68][69][70]. ...
Surgical resection and neuromodulation are well-established treatments for those with medically refractory epilepsy. These treatments entail important ethical considerations beyond those which extend to the treatment of epilepsy generally. In this paper, the authors explore these unique considerations through a framework that relates foundational principles of bioethics to features of resective epilepsy surgery and neuromodulation. The authors conducted a literature review to identify ethical considerations for a variety of epilepsy surgery procedures and to examine how foundational principles in bioethics may inform treatment decisions. Healthcare providers should be cognizant of how an increased prevalence of somatic and psychiatric comorbidities, the dynamic nature of symptom burden over time, the individual and systemic barriers to treatment, and variable sociocultural contexts constitute important ethical considerations regarding the use of surgery or neuromodulation for the treatment of epilepsy. Moreover, careful attention should be paid to how resective epilepsy surgery and neuromodulation relate to notions of patient autonomy, safety and privacy, and the shared responsibility for device management and maintenance. A three-tiered approach—(1) gathering information and assessing the risks and benefits of different treatment options, (2) clear communication with patient or proxy with awareness of patient values and barriers to treatment, and (3) long-term decision maintenance through continued identification of gaps in understanding and provision of information—allows for optimal treatment of the individual person with epilepsy while minimizing disparities in epilepsy care.
... It is prudent to consider that traditional belief systems will influence patient decisions about treatment options and their efficacy, as it is well-established that community misconceptions about epilepsy and its treatment perpetuate stigma, isolation, and ineffective care-seeking patterns [8,[19][20][21][22]. Community sensitization efforts are thus a necessary component of shifting the landscape of epilepsy care, and these efforts must be designed in a way that resonates with the community in order to be effective. ...
Objective
In Uganda, causal attributions for epilepsy reflect a variety of beliefs and impact care-seeking behavior, perpetuate stigma, and undermine the effectiveness of interventions to narrow the epilepsy treatment gap. The objective of this study was to characterize beliefs about seizure etiology to gain a better understanding of how epilepsy is conceptualized in the community in order to inform culturally appropriate educational policies and interventions.
Methods
In a community-based study, 15,383 participants were surveyed about beliefs related to 15 potential causes for epilepsy. Principal axis factor analysis (PFA) was performed to identify causative factors and then utilized to classify singular versus pluralistic belief systems related to epilepsy etiology. Analysis of variance (ANOVA) and Mann–Whitney U-tests were conducted to examine the differences in background characteristics across the etiology belief groups.
Results
Three main causative factors emerged from the PFA: biological, sociospiritual, and biospiritual. Among those endorsing at least one factor (n = 13,036), the biological factor was endorsed most frequently as a potential cause for epilepsy (88.0%), followed by the sociospiritual (63.4%), then biospiritual (47.6%). Review of the patterns of endorsement found that only 22.2% endorsed the biological factor alone, 6.7% the sociospiritual factor alone, and 2.8% the biospiritual factor alone (total 31.7%). The remainder endorsed a combination of two or all three factors as being potentially causal, and most (65.7%) endorsed a pluralistic combination inclusive of a biological etiology. Group comparisons showed that endorsing only the biological factor was associated with the highest levels of education (p < 0.01), the pluralistic group had the highest ratio of people in the household who needed assistance to those that could provide aid (p < 0.01), and there were significant differences in income across specific groups (p < 0.01).
Conclusions
Pluralistic attributions for epilepsy are common in Uganda, with the majority of community members drawing from biomedical and traditional concepts to construct complex explanations for seizures that transcend discrete belief categories traditionally depicted in the literature. These findings emphasize the need to understand cultural beliefs about epilepsy in order to design contextually specific interventions and education programs, which respect the fundamental beliefs and values of the community.
... Healthcare seeking history was ascertained, including time to seek treatment, first-treatment point (government health centre, general hospital, national referral hospital, private clinic, traditional healer, pastoral healer), next-treatment point, and so on, until current care. Participants' scores on sociocultural factors reflecting barriers experienced while seeking BMC derived from the Barriers to Care Survey [36] and included the following five barrier factors: logistic barriers, treatment efficacy barriers, influence of others, doctor's care barriers, and contextual barriers. Scores on sociocultural factors reflecting causal attribution for epilepsy derived from the following Causes of Epilepsy Survey [37] were also included: biological causes, bio-spiritual causes, and socio-spiritual causes. ...
Objective
Epilepsy is a global public health concern, with the majority of cases occurring in lower- and middle-income countries where the treatment gap remains formidable. In this study, we simultaneously explore how beliefs about epilepsy causation, perceived barriers to care, seizure disorder characteristics, and demographics influence the initial choice of healthcare for epilepsy and its impact on attaining biomedical care (BMC).
Methods
This study utilized the baseline sample (n = 626) from a prospective cohort study of people with epilepsy (PWE) attending three public hospitals in Uganda (Mulago National Referral Hospital, Butabika National Referral Mental Hospital, and Mbarara Regional Referral Hospital) for epilepsy care. Patient and household demographics, clinical seizure disorder characteristics, and sociocultural questionnaires were administered. Logistic regression and principal component analyses (PCA) were conducted to examine associations with the choice of primary seizure treatment.
Results
The sample was 49% female, and 24% lived in rural settings. A biomedical health facility was the first point of care for 355 (56.7%) participants, while 229 (36.6%) first sought care from a traditional healer and 42 (6.7%) from a pastoral healer. Preliminary inspection of candidate predictors using relaxed criteria for significance (p < 0.20) identified several factors potentially associated with a greater odds of seeking BMC first. Demographic predictors included older caredriver (decision-maker for the participant) age (odds ratio [OR]: 1.01, 95% confidence interval [CI]: [0.99, 1.02], p-value: 0.09), greater caredriver education level (OR = 1.21, 95% CI: [1.07, 1.37], p-value = 0.003), and lower ratio of sick to healthy family members (OR = 0.77 [0.56, 1.05], P = 0.097). For clinical predictors, none of the proposed predictors associated significantly with seeking BMC first. Self-report causation predictors associated with a greater odds of seeking BMC first included higher belief in biological causes of epilepsy (OR = 1.31 [0.92, 1.88], P = 0.133) and lower belief in socio-spiritual causes of epilepsy (OR = 0.68 [0.56, 0.84], P < 0.001). In the multivariate model, only higher caredriver education (OR = 1.19 [1.04, 1.36], P = 0.009) and lower belief in socio-spiritual causes of epilepsy (OR = 0.69 [0.56, 0.86], P < 0.01) remained as predictors of seeking BMC first. Additionally, PCA revealed a pattern which included high income with low beliefs in nonbiological causes of epilepsy as being associated with seeking BMC first (OR = 1.32 [1.12, 1.55], p = 0.001). Despite reaching some form of care faster, individuals seeking care from traditional or pastoral healers experienced a significant delay to eventual BMC (P < 0.001), with an average delay of more than two years (traditional healer: 2.53 years [1.98, 3.24]; pastoral care: 2.18 [1.21, 3.91]).
Conclusions
Coupled with low economic and educational status, belief in spiritual causation of epilepsy is a dominant determinant of opting for traditional or pastoral healing over BMC, regardless of concurrent belief in biological etiologies. There is a prolonged delay to eventual BMC for PWE who begin their treatment seeking with nonallopathic providers, and although nonallopathic healers provide PWE with benefits not provided by BMC, this notable delay likely prevents earlier administration of evidence-based care with known efficacy. Based on these findings, initiatives to increase public awareness of neurobiological causes of epilepsy and effectiveness of biomedical drug treatments may be effective in preventing delays to care, as would programs designed to facilitate cooperation and referral among traditional, faith-based, and biomedical providers.
This article is part of the Special Issue “The intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda”
Epilepsy is a chronic neurological condition that has been reported among people of all ages on the global front. Beyond this physical burden, people with epilepsy are stigmatized and discriminated against, underscoring the need for coordinated interventions to reduce stigma and expand access to healthcare services. Acknowledging the presence of multiple stigma and misconceptions, and the widespread consequences, there is an indispensable need to overcome them through a multipronged approach. In conclusion, epilepsy is a global public health problem and has been associated with multiple stigmas and misconceptions. These issues can be addressed by strengthening awareness campaigns in different settings by involving cultural leaders and leveraging social media to counter myths. In addition, training of healthcare professionals, creating peer support networks, advocating for antidiscrimination policies, and conducting research activities are essential to promote acceptance and improve treatment outcomes.
Objective:
This report documents the creation of a practical communication skills module about epilepsy care, specifically targeted at first-line care providers who treat patients with epilepsy in Uganda.
Methods:
Our team conducted semi-structured interviews, utilizing Zoom video conferencing, with Ugandan physicians specializing in epilepsy care. Our interview guide promoted a semi-structured conversational interview that explored aspects related to developing a patient-provider relationship, how epilepsy is described in a culturally appropriate manner, exploration of alternative treatments, the impact of the stigma of epilepsy, and facilitators and barriers to antiepileptic drug treatment adherence. Each interview was then transcribed, and an inductive thematic content analysis approach was utilized to facilitate the development of thematic communication and care subcategories. The resulting PowerPoint presentation included numerous short audio clips of our Ugandan experts suggesting effective ways of communicating with patients and their families.
Results:
Our interviews with experts yielded valuable results to customize the WHO mhGAP v2.0 training program to be culturally relevant and effective in Uganda. The educational content consisted of topic summaries integrated with audio clips taken directly from our interviews with the Ugandan providers. Six themes emerged that would serve as the outline for the communication module we co-created with our Ugandan colleagues: The six major themes of the module included: (1) Greeting the patient, (2) Getting the story, (3) Traditional healers, (4) Stigma of epilepsy, (5) Explaining epilepsy, and (6) Treatment adherence.
Conclusions:
The communications skills teaching module addresses the most critical aspects of communicating with patients and families living with epilepsy. The format of the presentation, which includes the written and spoken words of experts in epilepsy care, provides a practical approach to the provider-patient interaction, and confronts the stigma associated with this disease. This formatting highlights an effective way for international groups to co-create content in a culturally effective manner.
Objective
To evaluate the impact of the coronavirus disease 2019 (COVID-19) pandemic on the disease course, lives and psychosocial wellbeing of persons with epilepsy (PWE) in Uganda.
Methods
From April 2021 till May 2021, we carried out a descriptive cross-sectional study at four hospitals located in four regions of Uganda. PWE presenting at the study sites were offered a structured questionnaire in the local language. We used the PHQ-9 questionnaire to screen for depression and the GAD-7 to screen for anxiety. Univariate and multivariable logistic regression was used to investigate factors associated with anxiety and depression.
Results
A total of 370 responses were collected. The median age of the respondents was 20.5 years (IQR 15-29), and 51.9% were males. During the lockdown period, the seizure frequency increased in 87 (23.5%) PWE. Various forms of physical and psychological violence were inflicted upon 106 (28.6%) PWE. Fifty-eight (15.7%) screened positive for anxiety and 65 (17.6%) positive for depression. Both increased seizure frequency and experienced violence were associated with experiencing depression and anxiety.
Conclusion
The COVID-19 pandemic and lockdown impacted seizure frequency and the psychosocial wellbeing of PWE in Uganda. Increased seizure frequency was associated with higher rates of anxiety and depression. This underlines the importance of continued follow-up of PWE and a low threshold to screen for depression, anxiety and domestic violence.
Aim
We aimed to evaluate the knowledge levels and attitudes of the students of the Department of Health Management about epilepsy.
Method
This descriptive and cross-sectional study was conducted with the voluntary participation of 238 health management department students in their first and third years of study who were registered at the Faculty of Health Sciences summer school exam. We collected the data through a research questionnaire form and the Epilepsy Knowledge and Attitude Scales.
Results
Girls accounted for 66.6% (n = 157) all participants, 53.4% of them were 1st year (n = 127), whereas 46.6% (n = 111) were third-year students. Their mean age was 19.97 ± 1.46 years. Among these participants, 52.9% grew in the province (n = 126), 20.6% were smoking, 5% had epilepsy, and 36.6% had relatives with epilepsy. The mean epilepsy knowledge scale score was 5.64 ± 4.41 and the mean epilepsy attitude scale score was 52.55 ± 9.98. The third-year students' epilepsy knowledge score was significantly higher than their first-year counter parts (p < 0.001). We found no statistically significant difference between the first and third-year participants in attitude scores (p = 0.907). A moderate positive correlation was found between the students' knowledge level scores about epilepsy and their total attitude scores (r = 0.405, p < 0.001). The female students had a more positive attitude toward epilepsy and higher scores on the epilepsy knowledge scale than their male counterparts (p = 0.001, p = 0.005, respectively). Students who knew someone with epilepsy had higher epilepsy knowledge and attitude scale scores than those who did not (p = 0.001, p = 0.005 respectively).
Conclusion
The epilepsy knowledge levels and attitude scale scores of health management students were found to be low. Third-year students were found to have higher knowledge levels than first-year students but there was no statistically significant difference between their attitude scores. More education opportunities should be provided for students of the Department of Health Management about this common chronic disease.
Problem
Little is known about university students' knowledge of and attitudes towards epilepsy.
Methods
We invited first- and second-year students of different study subjects at Rostock University to complete a questionnaire.
Results
Overall, 497 students took part in the survey (209 medicine, 105 theology, 94 primary education, 89 computer science). Of all students, 38.0% knew someone with epilepsy, and 27.2% had already witnessed a seizure. Fewer computer science students than medical students knew someone with epilepsy (p = 0.002) and had witnessed a seizure (p < 0.001). From five presented symptoms, all were correctly assigned to a possible seizure by 27.0% of all students. If they had epilepsy themselves, 43.7% would tell their fellow students about it; and 76.1% would definitely be friends with someone with epilepsy, and 53.7% would definitely date a person with epilepsy. On a 5-point Likert scale, computer science students expressed less willingness to be friends with (p < 0.001) or to date someone with epilepsy (p = 0.004) than medical students. The willingness of theology and primary education students did not significantly differ from that of medical students. We found no statistical differences between medical students and the other student groups for correct assignment of all symptoms and the readiness to tell others if they had epilepsy themselves.
Conclusion
First- and second-year students showed gaps in knowledge and reservations about people with epilepsy, regardless of their study subject. However, computer science students have had particularly little contact with people with epilepsy and expressed less positive attitudes. Medical students, on the other hand, hardly differed from students of theology and primary education.
This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
Background:
Epilepsy is a common neurological disease with substantial impact on the subject and their caretakers. This exploratory study identified barriers to care for persons living with epilepsy (PLWE) to develop a culturally acceptable nurse led self-management intervention for PLWE previously developed in the United States.
Methods:
The study involving 48 participants (31 PLWE and 17 caregivers) with in depth interviews and focus groups was conducted. We obtained insights into barriers to care in PLWE and their caregivers. Using a thematic analytic procedure emphasizing the dominant themes the qualitative responses were analyzed. Median age of PLWE was 24 years (IQR 19-30), and10 (52.6%) were male. The median age of epilepsy onset was 12 years (IQR 6-18), range of 1-37 years. The median age of caregivers was 50 years (IQR 45-50.5), with a range of 18-78 years. Seventy five percent of caregivers (6/8) were females.
Results:
Three major areas of perceived barriers involving individual, family or community and provider and healthcare system barriers to epilepsy care emerged. Individual factors like limited epilepsy knowledge and medication non-adherence were reported to be key barriers to epilepsy care. Caregiver burden and lack of family support as well as poor health care access were identified from the family and health care systems.
Conclusions:
The main barrier to epilepsy care is limited epilepsy knowledge in PLWE and their caregivers. Improving epilepsy care awareness and knowledge within communities and appropriate health care provider service for epilepsy would help reduce epilepsy barriers and improve care.
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. 217/220 randomly selected adults above 18 years 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
217 participants out of 220 invited community members completed the study. Females comprised the majority (51.6%) while males constituted 48.4%. Majority of the respondents had a low level of knowledge on epilepsy. The mean ATPE scale knowledge score was 4.57 (SD=3.24) out of a maximum score of 11. The male respondents almost had equal mean knowledge scores as their female counter parts (4.23, SD=2.48 & 4.51, SD=2.54) respectively. Most respondents had negative attitudes towards epilepsy with a mean ATPE attitude score of 73.2 (SD=2.11) out 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 policy makers, 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 stigmatisation in the communities where they live.
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Background
Traditional healers are acceptable and highly accessible health practitioners throughout sub-Saharan Africa. Patients in South Africa often seek concurrent traditional and allopathic treatment leading to medical pluralism.
Methods & findings
We studied the cause of five traditional illnesses known locally as “Mavabyi ya nhloko” (sickness of the head), by conducting 27 in-depth interviews and 133 surveys with a randomly selected sample of traditional healers living and working in rural, northeastern South Africa. These interviews were carried out to identify treatment practices of mental, neurological, and substance abuse (MNS) disorders. Participating healers were primarily female (77%), older in age (median: 58.0 years; interquartile range [IQR]: 50–67), had very little formal education (median: 3.7 years; IQR: 3.2–4.2), and had practiced traditional medicine for many years (median: 17 years; IQR: 9.5–30). Healers reported having the ability to successfully treat: seizure disorders (47%), patients who have lost touch with reality (47%), paralysis on one side of the body (59%), and substance abuse (21%). Female healers reported a lower odds of treating seizure disorders (Odds Ratio (OR):0.47), patients who had lost touch with reality (OR:0.26; p-value<0.05), paralysis of one side of the body (OR:0.36), and substance abuse (OR:0.36) versus males. Each additional year of education received was found to be associated with lower odds, ranging from 0.13–0.27, of treating these symptoms. Each additional patient seen by healers in the past week was associated with roughly 1.10 higher odds of treating seizure disorders, patients who have lost touch with reality, paralysis of one side of the body, and substance abuse. Healers charged a median of 500 South African Rand (~US70) for seizure disorders or paralysis of one side of the body, and 1500 Rand (~US$105) for patients who have lost touch with reality.
Conclusions
While not all healers elect to treat MNS disorders, many continue to do so, delaying allopathic health services to acutely ill patients.
Background
Access to mental health care services for patients with neuropsychiatric disorders remains low especially in post-conflict, low and middle income countries. Persons with mental health conditions and epilepsy take many different paths when they access formal and informal care for their conditions. This study conducted across three countries sought to provide preliminary data to inform program development on access to care. It thus sought to assess the different pathways persons with severe mental disorders and epilepsy take when accessing care. It also sought to identify the barriers to accessing care that patients face. Methods
Six in depth interviews, 27 focus group discussions and 77 key informants’ interviews were conducted on a purposively selected sample of health care workers, policy makers, service users and care takers in Uganda, Liberia and Nepal. Data collected along predetermined themes was analysed using Atlas ti software in Uganda and QSR Nvivo 10 in Liberia and Nepal ResultsIndividual’s beliefs guide the paths they take when accessing care. Unlike other studies done in this area, majority of the study participants reported the hospital as their main source of care. Whereas traditional healers lie last in the hierarchy in Liberia and Nepal, they come after the hospital as a care option in Uganda. Systemic barriers such as: lack of psychotropic medicines, inadequate mental health specialists and services and negative attitudes of health care workers, family related and community related barriers were reported. Conclusion
Access to mental health care services by persons living with severe mental disorders and epilepsy remains low in these three post conflict countries. The reasons contributing to it are multi-faceted ranging from systemic, familial, community and individual. It is imperative that policies and programming address: negative attitudes and stigma from health care workers and community, regular provision of medicines and other supplies, enhancement of health care workers skills. Ultimately reducing the accessibility gap will also require use of expert clients and families to strengthen the treatment coalition.
Objectives:
This study aimed to evaluate the validity and the reliability of two components of the Attitudes and Beliefs about Living with Epilepsy (ABLE) scale and to measure the magnitude of the public's attitudes and behaviors toward persons with epilepsy using U.S. nationally representative samples in 2005 and 2013.
Methods:
We used data from the cross-sectional 2005 SummerStyles and 2013 FallStyles surveys to test the underlying structure of 16 items of the work and role expectations and personal fear and social avoidance subscales of ABLE by performing exploratory factor analysis (EFA). We estimated the percentages and 95% confidence intervals of adults who agreed or disagreed with each item. We also calculated the mean score of each subscale and used linear regression to obtain means adjusted for selected sociodemographic characteristics.
Results:
Exploratory factor analysis confirmed a two-factor structure, but with the exception of omitting one item regarding work activities persons with epilepsy cannot do work activities safely, from one subscale. Both subscales also showed a high level of reliability (Cronbach's α=0.8 and Cronbach's α=0.9, respectively). Among the items in the work and role expectations subscale, a significantly higher percentage of adults in 2013 than in 2005 reported strongly or moderately agreeing that persons with epilepsy can do anything as well as anyone else (56.4%, 95% CI=54.1-58.7 vs. 47.6%, 95% CI=45.8-49.3) and can cope with everyday life (69.8%, 95% CI=67.5-72.0 vs. 55.0%, 95% CI=53.2-56.7). Among the items in the personal fear and social avoidance subscale, a significantly higher percentage of adults reported in 2013 than in 2005 strongly or moderately agreeing that they would be nervous around persons with epilepsy (25.4%, 95% CI=23.4-27.5 vs. 16.8%, 95% CI=15.4-18.2) and would avoid those with frequent seizures (12.4%, 95% CI=11.0-13.9 vs. 7.6%, 95% CI=6.7-8.7). The adjusted mean score for work and role expectations differed by sex, age, race/ethnicity, education, and income in both years. The adjusted mean score for personal fear and social avoidance differed by sex, age, race/ethnicity, education, and marital status. Negative attitudes were slightly but significantly higher in 2013 than in 2005.
Conclusions:
Centers for Disease Control and Prevention's ABLE scale is a valid and reliable scale that can be used to study and to track the public's attitudes and behaviors toward persons with epilepsy. Compared with 2005, US adults' reported level of expectations for persons with epilepsy improved only in certain aspects by 2013. Adults' level of personal fear and intention for social avoidance worsened from 2005 to 2013. Because the levels of expectations and of fear and social avoidance differed by sociodemographic characteristics, continued efforts tailored to specific groups are needed. To supplement educational programs focused on improving knowledge, new communication approaches grounded in decision theory that quell risk perceptions and allay negative emotional responses are recommended.
Religious and sociocultural beliefs influence the nature of treatment and care received by people with epilepsy. Many communities in Africa and other developing nations believe that epilepsy results from evil spirits, and thus, treatment should be through the use of herbaceous plants from traditional doctors and religious leadership. Community-based cross-sectional study designs were used to assess the knowledge, attitude, and practice related to epilepsy and its associated factors by using a pretested, semi-structured questionnaire among 660 respondents living in Sululta Woreda, Oromia, Ethiopia. According to the results of this study, 59.8% of the respondents possessed knowledge about epilepsy, 35.6% had a favorable attitude, and 33.5% of them adopted safe practices related to epilepsy. The following factors had significant association to knowledge, attitude, and practice related to epilepsy: being rural dwellers, living alone, those with more years of formal education, heard information about epilepsy, distance of health facility from the community, had witnessed an epileptic seizure, age range from 46 years to 55 years, had heard about epilepsy, prior knowledge of epilepsy, occupational history of being self-employed or a laborer, history of epilepsy, and history of epilepsy in family member. The findings indicated that the Sululta community is familiar with epilepsy, has an unfavorable attitude toward epilepsy, and unsafe practices related to epilepsy, but has a relatively promising knowledge of epilepsy.
Purpose
In Mali, epilepsy affects 15 individuals per thousand. Perceptions and attitudes have not seemingly evolved with advancing medical knowledge. The objective of this study was to assess parental beliefs and attitudes in families with and without affected children.
Methods
We enrolled 720 pediatric patients, half of whom had epilepsy, at Mali's largest hospital. We conducted semistructured interviews with the accompanying parent. Control families with unaffected patients and also had affected children were excluded.
Results
In total, 67% and 24% of families with and without epilepsy, respectively, lived in rural environments. Interviewees were mostly mothers in their 30s; 80% had not completed high school. About 22% of parents without an affected child had witnessed a seizure. During a seizure, 94% of parents with an affected child and 49% of parents without an affected child, respectively, would intervene; 7.5% and 21%, respectively, would wet the patient's face with cool water. Although parents with an affected child had more intimate knowledge of seizures, misconceptions prevailed, perhaps more so than in families without epilepsy: 79% and 66% of parents, respectively, considered epilepsy contagious; 43% vs. 69% thought that it inevitably led to psychosis; and 53% vs. 29% attributed epilepsy to supernatural causes. Finally, 63% of parents with an affected child reported consulting a traditional healer as first-line management for epilepsy.
Conclusions
Our study demonstrates widespread misconceptions in Mali regarding epilepsy. Our findings argue for more education initiatives focused on the entire population, including traditional healers, to provide knowledge, reduce stigma, and improve quality of life for individuals living with epilepsy.
Purpose:
The purpose of this study was to determine the knowledge and attitude of secondary school students to epilepsy and its treatment that could pose as barriers in the treatment and care of epilepsy patients within the community.
Methods:
This study was cross-sectional and descriptive in design using a self administered custom designed multiple choice questionnaire with sections on general information on epilepsy, awareness and perception of epilepsy, treatment of epilepsy/seizures and attitude towards people living with epilepsy.
Results:
Out of 969 questionnaires analyzed, the majority of the students (87.6%) had heard of epilepsy as a disease. The commonest sources of information were the electronic media (36.4%) and family members (25.6%). More than half (59.4%) had witnessed a convulsion in the past and 8.9% had a family member with epilepsy. Jerking (50.6%) and loss of consciousness (47.4%) were identified as the commonest manifestations of epilepsy. Epilepsy was considered a psychiatric disorder by 51.9% and as an infectious disease by 40.6%. About 39.3% considered epilepsy to be due to spiritual causes, old age or poisoning/bad blood. A total of 63.1% regarded orthodox medicine and prayers as the best means to treat epilepsy, while 6.8% chose herbal remedies. Concerning first aid treatment, 50.6% agreed that an object should be inserted into the mouth, while 49.5% would call for medical help and 28.8% would remove the person from harm. On attitude, 64.9% would not keep a friend with epilepsy, 69.1% would not play with someone with epilepsy, 84.2% would not marry someone with epilepsy. 41.1% of the students said that people with epilepsy should neither marry while 42.2% say they should not have children. Only 39.1.5% had an overall positive attitude towards people living with epilepsy.
Conclusions:
There is a persisting poor knowledge, attitude and practice of epilepsy among secondary school students in SE Nigeria. Efforts should be made to include basic facts about disorders with social consequences such as epilepsy in school health education curriculum.
To estimate the burden of lifetime epilepsy (LTE) and active epilepsy (AE) and examine the influence of study characteristics on prevalence estimates.
We searched online databases and identified articles using prespecified criteria. Random-effects meta-analyses were used to estimate the median prevalence in developed countries and in urban and rural settings in developing countries. The impact of study characteristics on prevalence estimates was determined using meta-regression models.
The median LTE prevalence for developed countries was 5.8 per 1,000 (5th-95th percentile range 2.7-12.4) compared to 15.4 per 1,000 (4.8-49.6) for rural and 10.3 (2.8-37.7) for urban studies in developing countries. The median prevalence of AE was 4.9 per 1,000 (2.3-10.3) for developed countries and 12.7 per 1,000 (3.5-45.5) and 5.9 (3.4-10.2) in rural and urban studies in developing countries. The estimates of burden for LTE and AE in developed countries were 6.8 million (5th-95th percentile range 3.2-14.7) and 5.7 million (2.7-12.2), respectively. In developing countries these were 45 (14-145) million LTE and 17 (10-133) million AE in rural areas and 17 (5-61) million LTE and 10 (5-17) million AE in urban areas. Studies involving all ages or only adults showed higher estimates than pediatric studies. Higher prevalence estimates were also associated with rural location and small study size.
This study estimates the global burden of epilepsy and the proportions with AE, which may benefit from treatment. There are systematic differences in reported prevalence estimates, which are only partially explained by study characteristics.
The purpose of this study was to gain an understanding of the approach of traditional healers to epilepsy care, in order to develop a community-based epilepsy care program in Batibo Health District.
With an 18-item questionnaire, interviews were carried out with 102 traditional healers randomly selected from two associations of traditional healers in the Batibo Health District.
Most traditional healers had heard about epilepsy (98.0%), knew someone with epilepsy (97.8%), or had witnessed a seizure (92.2%). About 40% would object to their children associating with people with epilepsy (PWE), 46.1% would object to their children marrying PWE, and 51% linked the disease to insanity. Though 61.8% of the traditional healers could not offer any treatment for epilepsy, most of them thought it was treatable (74.5%) and would readily refer a patient to the hospital (95.1%). The independent predictors of attitudes were: middle age (30-49 years), P=0.00003; female gender, P=0.007; correct knowledge of the cause(s) of epilepsy, P=0.001; and the misconceptions that epilepsy is contagious and that epilepsy is a form of insanity, P=0.003 and 0.019, respectively.
Traditional healers constituted the focus group studied so far in Cameroon that is most familiar with epilepsy. Although they still have some negative practices, the attitudes of traditional healers toward PWE in Batibo Health District are satisfactory, compared with those of the general public and students in the same community. These findings provide evidence for the first time in Cameroon suggesting that collaboration between the modern and traditional health systems with the view of bridging the epilepsy treatment gap is possible. There is a need to train traditional healers in epilepsy care in our context.
Objective
This study sets out to describe the current demographics of people with epilepsy (PWE) attending hospital-based care in Uganda and the epilepsy treatment practices within three of the largest Ugandan public referral hospitals.
Methods
In a six-month prospective cohort study, 626 children and adults attending epilepsy clinics at Mulago National Referral Hospital, Butabika National Referral Mental Hospital and Mbarara Regional Referral Hospital were enrolled. Using a study questionnaire, data were collected at baseline and at 3 weeks, 3 months, and 6 months following enrollment. Specific data surrounding individual patient demographics, clinical characteristics and severity of epilepsy, and treatment of epilepsy with antiepileptic drugs (AEDs) were collected.
Results
Female patients totaled to 50.8%, with a nearly equal gender distribution at each hospital. There was no statistical difference in gender or age between sites. The majority of PWE had completed primary school, with less than 15% of patients completing more than a secondary education. Seizure severity was high, with most patients having multiple seizures per week at the initial onset of epilepsy, and greater than 90% of patients reporting a loss of consciousness with seizures. The majority of patients (54.95%) also reported a developmental or learning delay. Most patients were on 1 AED (46.01%) or 2 AEDs (36.90%), with carbamazepine being the most frequently prescribed AED. There was a trend towards improved seizure severity over the follow-up period, as assessed by the corresponding Personal Impact of Epilepsy Scale (PIES) subscale.
Conclusions
People with epilepsy attending hospital-based care in Uganda tend to have severe forms of epilepsy requiring management with AEDs. Current hospital-based practices show a positive trend for seizure burden and quality of life of PWE in Uganda. Further interventions to improve overall access to biomedical care are required to continue to advance the management of PWE across all communities.
This article is part of the Special Issue “The intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda"
Purpose:
Perceptions, beliefs and culture influence attitude towards epilepsy in sub-Saharan Africa. Misconceptions on epilepsy contribute to the persistence of negative attitudes in children with epilepsy particularly on their school enrollment. The aim of the study was to assess knowledge, attitudes, and sociocultural factors affecting schooling of children with epilepsy in Gabon.
Methods:
Teachers and health workers from two urban and four rural localities of Gabon were assessed using a self-administered questionnaire.
Results:
Overall 1310 subjects filled the survey questionnaire, including 813 teachers and 497 health workers. Knowledge on risk factors and suggestive signs of childhood epilepsy were globally poor. Misconceptions on etiology of epilepsy were significant with contagiousness (27.5%) and demonic possession (16.0%) representing the major prevalent idea about the origin of epilepsy in children. Attitudes of teachers and health workers towards schooling of children with epilepsy were positive (85.0%). However, more than half recommended enrollment of these children in specialized school programs. In multivariate analysis, education level (OR = 1.40; 95% confidence interval 1.01-1.81) and marital status (OR = 1.62; 95% confidence interval 1.18-2.22) were sociocultural factors likely to affect chances of school enrollment of children with epilepsy.
Conclusion:
Understanding the influence of socio-cultural factors surrounding school enrollment of children with epilepsy could enhance public awareness campaigns about epilepsy and to improve school integration of these children.
Objective:
This systematic review identified papers that described epilepsy misconceptions or stigma in sub-Saharan Africa (SSA) and research interventions focused on reducing these misconceptions.
Materials and methods:
Publications in the English language from January 2000 to October 2017 that described original research conducted in SSA on misconceptions about epilepsy were utilized.
Results:
Twenty-three publications were identified. Studies were from Nigeria (N = 4), Cameroon (N = 4), Uganda (N = 3), Zambia (N = 2), Ethiopia (N = 2), Tanzania (N = 2), Kenya (N = 2), Ghana, Zimbabwe, Benin, and Mali (N = 1 each). The studies included assessments of misconceptions among healthcare providers and medical students (N = 3), high school students (N = 2), teachers (N = 2), the general public (N = 10), people with epilepsy (N = 7), and traditional healers (N = 1). Only two studies had stigma-focused interventions. Majority of the studies reported limitations to socialization with people with epilepsy and various beliefs associated with epilepsy.
Conclusions:
Epilepsy misconceptions, stigmatizing cultural beliefs, and perceptions were widely prevalent in SSA, and there are a few studies targeting epilepsy stigma. Existing stigma-reduction educational approaches may be impractical for general population implementation. Scalable approaches to reduce stigma are urgently needed within SSA.
Objective:
Patients with epilepsy (PWE) are more likely to have unmet healthcare needs than the general population. This systematic review assessed the reasons for unmet needs in PWE.
Methods:
Medline, Embase, PsycINFO, Cochrane, and Web of Science databases were searched using keywords relating to unmet healthcare needs, treatment barriers, and access to care. The search included all countries, adult and pediatric populations, survey and qualitative studies, but excluded non-English articles and articles published before 2001. Reasons for unmet needs were extracted.
Results:
Nineteen survey and 22 qualitative studies were included. Three survey and five qualitative studies excluded patients with comorbidities. There were twice as many studies on unmet mental healthcare needs than unmet physical care needs in PWE. Poor availability of health services, accessibility issues, and lack of health information contributed to unmet needs in both Western and developing countries. Lack of health services, long wait lists, uncoordinated care, and difficulty getting needed health information were prevalent in the United States (US) as well as countries with a universal healthcare system. However, unmet needs due to costs of care were reported more commonly in studies from the US.
Significance:
This systematic review identified reasons for unmet needs in PWE across different countries, which will inform specific interventions required to address these unmet needs. Unmet needs may have been underestimated due to exclusion of PWE with comorbidities in some studies. Additional studies are needed to understand the contribution of comorbidities on unmet needs and their interaction with caregiver and family factors.
Background:
Epilepsy is one of the most common serious chronic brain disorders and is poorly understood by the public and has been associated with numerous misconceptions and beliefs. This, coupled with its dramatic clinical manifestations, has resulted in a strong social stigma. Since teachers have a key role in society as educators, the purpose of this study was to find out the knowledge, attitude, and practice towards epilepsy among school teachers.
Methods:
A cross-sectional study design was used to assess the knowledge, attitude, and practice of 135 teachers about epilepsy using a semi-structured, self-administered questionnaire. Data were entered into IBM SPSS version 20.0 and analyzed. Descriptive statistics including frequencies, means, and standard deviations were used to describe the data. Associations were computed using a chi-square test and p-value<0.05 was considered significant.
Results:
Nearly all teachers 122 (96.3 %) were aware of epilepsy. Only 41% of the respondents had good knowledge about epilepsy whereas 26.8% and 32.3% had fair and poor knowledge about the disease, respectively. About 74% of them had a positive attitude about epilepsy. Only 60.3% of the respondents had proper first aid training. Literacy status and years of experience were not significantly associated with the level of knowledge about epilepsy.
Conclusion:
A significant proportion of teachers had deficits in terms of general knowledge, attitude, and the appropriate management of epilepsy in the classroom. Therefore, it is important to train and update teachers on epilepsy by the responsible health authorities.
Introduction:
Despite being a common disorder, epilepsy is misunderstood by the general public, leading to fear, secrecy, stigmatization, and the risk of social discrimination.
Objective:
This study aimed to compare knowledge, attitudes, and practices (KAP) towards persons with epilepsy among rural and urban dwellers in South Ethiopia.
Methods:
A comparative cross-sectional community-based study was conducted among 1316 (656 from rural and 660 from urban) adult respondents in South Ethiopia.
Results:
The most cited causes of epilepsy were brain disease (40.6%) by urban respondents and evil spirits (34.6%) by rural respondents. More urban (21.7%) than rural (16.5%) respondents believed that epilepsy is contagious (P=0.016). About 39% of rural compared with 7% of urban respondents would not allow their children to associate with a person with epilepsy (P<0.001), and 56.7% of rural compared with 24.8% of urban respondents objected to themselves or their children marrying someone with epilepsy (P<0.001). The majority of the respondents in both groups (75.5% from urban and 56.4% from rural) would recommend a medical doctor for the treatment of epilepsy, but herbal medicine and spiritual treatments such as prayers and Holy water were still commonly practiced.
Conclusion:
This study demonstrated a significant difference in epilepsy KAP between urban and rural dwellers, with the former having more positive attitudes. A comprehensive epilepsy educational campaign is necessary to advance understanding among the general population, thereby improving patient care.
We report the results of a descriptive 3-month observational study concerning the experience and knowledge about epilepsy of 30 traditional health practitioners in the Ivory Coast. Most respondents were men over 30 years of age. They had an average of 14.3 years of professional experience. More than half of respondents (54%) had not attended school. All traditional practitioners knew that epilepsy was a brain disease. For 83.3% of them, the disease was supernatural, due to a curse. These traditional healers knew all the clinical manifestations of generalized tonico-clonic seizure. For over 72% of them, noise, presence of a public, nervousness and coffee consumption were factors favoring seizures. Sixty percent of the traditional healers still believed in the contagiousness of epilepsy, and all claimed to cure it by traditional treatment. Most all healers (97%) used plant products, but only 10% released the name of the plants used (Rubiaceae or Lamiaceae families). This survey highlights the urgency of awareness campaigns and the need for training of Ivorian traditional healers and the necessity to improve the collaboration between modern and traditional medicine.
Stigma associated with any chronic disease is one of the greatest challenges to the treatment of the disease. Stigma in health is a complex concept, and it causes people with a stigmatizing disease to conceal their disorder. Epilepsy is one such condition with numerous outdated, sometimes inhumane, and sometimes absurd perceptions that tend to fuel its stigma. Health-care workers who participated in an epilepsy training program as part of a World Health Organization/Ghana Health Service collaboration were asked to compile the perceptions associated with epilepsy in their communities. The comments they gathered are presented here.
The attitude towards people with epilepsy is influenced by the level of their knowledge about the condition. Parents usually do not accept the diagnosis of epilepsy in their children easily. This study was to assess 280 parents' knowledge and their attitude toward children suffering from epilepsy by answering a questionnaire.
To evaluate the knowledge and attitudes of parents toward children with epilepsy.
This was a prospective study in a tertiary hospital. All parents who had children suffering from epilepsy seen from April 1st 2009 to March 31st 2010 were recruited. Questionnaires were administered to all the parents who attended the neurology clinic with their children diagnosed of epilepsy.
A total of 914 neurological patients were seen and treated during the study period. Of these, 280 parents whose children suffered from epilepsy participated in the study. Almost all, 267 (95.36%) parents had heard about epilepsy prior to presentation in the clinic. Some parents thought that epilepsy was contagious and linked with evil spirit/demonic attack. A few of them rejected the word epilepsy and did not think that an epileptic child could achieve much in life. The knowledge about the clinical characteristics and initial procedures to attend a person during a seizure were unscientific.
We concluded that more than 90% of parents and caregivers know about epileptic seizures. However, there is a need to disseminate more information to the public about its causes, clinical manifestation, approach to managing a convulsing child, and its outcome. In addition, periodic medical campaigns aimed at educating the public about epilepsy through the media could go a long way in reducing the morbidity and mortality associated with this disorder.
The social stigma toward people with epilepsy (PWE) varies greatly between cultures. In this study, 167 people (59 PWE, 62 relatives, 46 villagers) in a rural area of northern Tanzania were interviewed at the hospital and in the community regarding their prevailing beliefs about epilepsy and attitudes toward PWE. Seventy-eight of those interviewed (46.7%) thought that epilepsy was due to supernatural causes, but 86 (51.5%) assumed that epilepsy is caused by brain disorders or is inherited. According to the interviewees, epilepsy impacts on the lives of affected people. 65.3% (n=109) thought that PWE should not attend school or go to work and 38.3% (n=64) were of the opinion that PWE had decreased chances of getting married. A minority (11.4%; n=19) thought that epilepsy was a reason not to have children. In summary, supernatural and more scientific ideas about the causes of epilepsy seem to coexist. Nevertheless, there is considerable stigma toward PWE, which needs to be interpreted within the sociocultural context of the study.
In the farming community of the sub-district of Meskan and Mareko in central Ethiopia, where the prevalence of epilepsy is known to be 5.2/1000, a door-to-door survey was undertaken in 1546 sampled households to find out public attitudes to epilepsy. Nearly 64% of the respondents were in the age group of 14-50 years, and 58.6% were women. The majority (86%) were illiterate, and 94% had incomes of a subsistence level; 89% had heard or witnessed seizures. Traditional views on the association of evil spirits and superstition was prevalent. By 45% of the interviewees, the disease was believed to be contagious through physical contacts during an attack. Although there was sympathetic concern in the community for the person suffering from epilepsy, negative attitudes were strong on matrimonial associations, sharing of accommodation and physical contacts with affected persons, particularly when there were obvious signs and frequent attacks by seizures. The study demonstrates that the rural community has very poor knowledge of the causes and nature of epilepsy, and this has resulted in social deprivations and at times, rejection of the sufferers.
Before a health education program can be established, one must first know what the target population believes and does with respect to the disease in question. Therefore, we performed a study among Tanzanian rural inhabitants to identify their knowledge, attitude, and practice (KAP) toward epilepsy: 3,256 heads of households (mean age 40.2 years, range 15-90 years; M/F ratio 1:1) were interviewed. Of the respondents, 32.9% said they had never seen a seizure; 67.7% said they did not know the cause of epilepsy; 33.3% mentioned various causes including heredity, witchcraft, infection of the spinal cord, hernia; 40.6% believed epilepsy was infectious through physical contact, flatus, breath, excretions, sharing food; 36.8% believed epilepsy could not be cured and 17.1% believed it could not even be controlled; 45.3% believed epilepsy could be treated by traditional healers, and only 50.8% believed hospital drugs were of any use; and 62.7% of the respondents would not allow an epileptic child to go to school for various reasons, including mental subnormality (54.0%), fear of the child falling while alone (65.9%), and fear that the epileptic child would infect other children (11.2%). Concerning what is to be done when a seizure occurs, 33.5% of the respondents would keep away and not touch the person; 16.5% would take some potentially harmful measure such as forcing a mouth gag or forcing a drink such as water (1 even mentioned urine); 5.2% would take unnecessary measures such as rushing the patient to a hospital. Only 35.7% of respondents would perform at least some of the currently recommended first-aid measures.(ABSTRACT TRUNCATED AT 250 WORDS)
Many studies in developed regions of the world have confirmed that stigma contributes substantially to the psychological and social burden of epilepsy. Relatively few studies of epilepsy-associated stigma have been conducted in Africa, where much of the world's burden of epilepsy exists. In sub-Saharan Africa (SSA), particularly in rural regions, close family ties, communal living situations, and traditional belief systems undoubtedly influence the expression of stigmatization. A review of the epidemiologic, anthropologic, and sociologic studies of epilepsy in SSA provides significant insights into how people with epilepsy (PWE) are perceived by their communities and families and how these perceptions translate into limited social and economic opportunities and possibly worsen the physical vulnerability of PWE in this region. The medical community is not exempt from the social process of stigmatization, and poor public health infrastructure and medical services undoubtedly contribute to the cycle of epilepsy-associated stigma through wide treatment gaps, poor seizure control, and high rates of seizure-related injury. In this review, we extrapolate data from existing studies of epilepsy in SSA coupled with our own experience providing epilepsy care in the region to give an overview of the social landscape of this common, devastating condition.
Most people with epilepsy (PWE) reside in developing countries with limited access to medical care. In sub-Saharan Africa (SSA), traditional healers (THs) play a prominent role in caring for PWE, yet little is known about epilepsy care by THs. We conducted a multimethod, qualitative study to better understand the epilepsy care delivered by THs in Zambia.
We conducted focus-group discussions with THs, in-depth semistructured interviews with a well-recognized TH at his place of work, and multiple informal interviews with healthcare providers in rural Zambia.
THs recognize the same symptoms that a neurologist elicits to characterize seizure onset (e.g., olfactory hallucinations, jacksonian march, automatisms). Although THs acknowledge a familial propensity for some seizures and endorse causes of symptomatic epilepsy, they believe witchcraft plays a central, provocative role in most seizures. Treatment is initiated after the first seizure and usually incorporates certain plant and animal products. Patients who do not experience further seizures are considered cured. Those who do not respond to therapy may be referred to other healers. Signs of concomitant systemic illness are the most common reason for referral to a hospital. As a consequence of this work, our local Epilepsy Care Team has developed a more collaborative relationship with THs in the region.
THs obtain detailed event histories, are treatment focused, and may refer patients who have refractory seizures to therapy to other healers. Under some circumstances, they recognize a role for modern health care and refer patients to the hospital. Given their predominance as care providers for PWE, further understanding of their approach to care is important. Collaborative relationships between physicians and THs are needed if we hope to bridge the treatment gap in SSA.
Compared with the disability associated with repeated seizures or side-effects of antiepileptic medications, the social stigma associated with epilepsy is often a major handicap to people living with this condition. This study therefore looked at the knowledge, attitude and perception of teachers who see a lot of epileptics, relates on daily bases and have a high influence on students with epilepsy.
Self-administered questionnaires were used to obtain information from 460 randomly selected teachers in primary, secondary and tertiary educational institutions in Kwara State-middle belt of Nigeria. The response rate was 75%. Almost all of the teachers had heard about epilepsy, but their awareness does not equate with the acceptance and understanding of epilepsy. About 30.5% believed that it could be contracted through the saliva of an epileptic, 27.7% thought it was synonymous with possession with evil spirit, while 10% misunderstood epilepsy for insanity. Close to one-fifth of the teachers were of the opinion that epileptic students have a below average mental capacity compared with other students and so cannot attainment the highest possible education.
Negative attitude and bias towards epilepsy is still deeply ingrained among teachers in Nigeria. Apart from formal education, teachers need to have health education courses on common disease conditions such as epilepsy that are prevalent in school age. This might help to reduce prejudice and increase the acceptance of epileptic individuals into the classroom.