Epilepsy Stigma Research Articles

Does Epilepsy Have an Impact on Locus of Control?

Many chronic diseases impair patients’ quality of life and may also affect their control perceptions. This could particularly happen for patients with epilepsy whose seizures often imply loss of control as a deeply disturbing experience. In 1980, a study on learned helplessness in epilepsy found a highly significant reduction of internal general locus of control (GLOC) and an increase of chance and powerful others health-related LOC (HLOC). In consequence, LOC became a frequent target of investigations relating to depression and anxiety, quality of life, coping, compliance, and other psychosocial aspects of epilepsy. Both GLOC and HLOC were investigated, and special groups like children, elderly, mentally handicapped persons, and those with psychogenic non-epileptic seizures were addressed. Most studies attempted to relate in-group differences of LOC to other parameters. Seizure-free patients were found to have a more internal HLOC, and patients with severe epilepsies have a more external HLOC. Patients with a high external HLOC seem to have more difficulties with coping and to be more anxious. Whereas external GLOC was correlated with learned helplessness, internal GLOC was associated with high self-efficacy and better life quality. An association of external LOC with depression seemed not to be a stable co-relation as clinical improvement following epilepsy surgery dissociated the two. A hypothesis was confirmed that the ability of some patients to counteract seizures at their onset, thus preserving control, was correlated with a higher internal HLOC. Some other theoretically well-founded hypotheses were not supported. Absolute figures as reported in several papers are of limited use because the only normative data for comparison come from a local sample of 1976 from Tennessee, whereas LOC scores may differ largely dependent on cultural and societal conditions. Very few controlled studies exist, and the early finding of a generally externalized LOC in epilepsy was confirmed only in one study performed in a South Indian community known for strong stigma against epilepsy. A recent transcultural investigation conducted in Brazil and Lithuania found no differences from healthy controls and between countries. It seems worthwhile to further investigate relations of LOC with epilepsy stigma.

Community integration, self-esteem, and perceived stigma in a Nigerian sample with epilepsy

ObjectiveThe objective of the study was to investigate the levels, interrelationships, and associated factors of community integration (CI), perceived stigma (PS), and self-esteem in people living with epilepsy (PWE) in Anambra and Enugu States of south-east Nigeria. MethodsThis was a cross-sectional survey involving 70 consenting adults living with epilepsy consecutively recruited from three purposively sampled specialized clinics in Anambra State. The Reintegration to Normal Living Index, the Epilepsy Stigma Scale, and the Rosenberg Self-Esteem Scale were used to estimate CI, PS, and self-esteem, respectively among the participants. Data were analyzed at 0.05 level of significance. ResultsThe mean age of the participants (28.6% females) was 34.91 ± 16.21 years. The participants had moderate PS score (43.54 ± 14.20), poor self-esteem score (17.63 ± 6.12), and mild-to-moderately restricted CI score (67.83 ± 24.72). Participants' PS, CI, and self-esteem significantly correlated with one another (p < 0.05) with PS and self-esteem being significant predictors of CI. Participants' PS had a significant correlation with their age at onset of epilepsy, while their self-esteem and CI significantly correlated with their seizure episodes (p < 0.05). Participants' PS and CI were significantly different across different categories of their occupational and educational statuses. Perceived stigma also varied across participants' marital status with divorced participants having the worst score (p < 0.05). ConclusionPeople living with epilepsy had moderate PS, poor self-esteem, and mild-to-moderate CI, which correlated significantly with one another. Results suggest the possibility of using CI as an outcome for assessing the effectiveness of stigma and self-esteem interventions during epilepsy rehabilitation.

A study of psychogenic non-epileptic seizures in an inpatient video-electroencephalography monitoring service in Tabriz, Northwest of Iran

Background: Psychogenic non-epileptic seizures (PNES) are manifested as paroxysmal alterations in motor, sensory, autonomic, and/or cognitive and behavioral signs and symptoms, without associated ictal epileptiform discharges. A misdiagnosis of PNES as epilepsy results in a prolonged and unnecessary (antiepileptic) drug treatment and social and psychological stigma of epilepsy in these patients. This study aimed to determine the epidemiology, clinical manifestations, and associated factors of PNES in hospitalized patients in the video-electroencephalography (EEG) monitoring (VEM) service of Razi Hospital, Tabriz, Iran. Methods: In this cross-sectional descriptive study, 55 patients with a final diagnosis of PNES were selected from the patients referred to the VEM unit of Razi Hospital for the evaluation of epilepsy. The study was performed from May 2017 to June 2019. Patient information included demographic data and medical history (drug history, comorbidities, trauma, and family history). The clinical manifestations (semiology and duration of attacks) and EEG findings, as recorded by VEM during hospitalization, were collected. Results: 55 patients with PNES were studied with VEM, 27 (49.1%) of which were men, and 28 (50.9%) were women. The mean and standard deviation (SD) of age of the patients was 34.16 ± 12.64 years. No significant differences were observed in the semiology of PNES between men and women. Depression was the most common psychiatric comorbidity. Conclusion: The clinical manifestations of PNES in the present study were similar to those in most previous studies from other countries. The culture and sex of the patients did not seem to be a contributing factor in PNES semiology.

Quality of life, psychiatric symptoms, and stigma perception in three groups of persons with epilepsy

ObjectiveThe current study aimed to describe quality of life (QoL) levels, psychiatric symptoms prevalence, and perceived stigma levels in persons with either drug-resistant epilepsy (DRE) or drug-sensitive epilepsy (DSE) and in persons with epilepsy (PwE) with DRE that underwent epilepsy surgery (DREES). MethodsPersons with epilepsy diagnosed as having DRE according to International League Against Epilepsy (ILAE) criteria, DSE, and DREES were enrolled at the Epilepsy Unit of the Neurological Institute Carlo Besta of Milan. Sociodemographic and clinical data, Quality of Life in Epilepsy Inventory (QOLIE-31), Symptom Checklist-90 (SCL-90), and the Epilepsy Stigma Scale (ESS) were collected based on self-reported information and on medical records. ResultsSociodemographic, medical, and psychological data were obtained from 181 PwE: 80 with DRE, 31 with DSE, and 70 with DREES. We found that QoL is higher and psychiatric symptoms are lower in persons with DSE compared with DRE and that patients with DREES, who were drug-resistant before surgery, are in between DSE and DRE for both measures. Perceived stigma level is different in DSE and in DRE, that report the highest levels of stigma, and is between the other two groups in DREES. SignificanceThis study suggests that low QoL levels and high psychiatric symptoms prevalence in drug-resistant PwE may be significantly improved after epilepsy surgery and suggests the importance of a biopsychosocial approach when planning therapeutic intervention.

A Survey on the Impact of Metacognitive Beliefs, Anxiety, and Depression on the Stigma of Epilepsy in Khoram-Abad, Iran

A Survey on the Impact of Metacognitive Beliefs, Anxiety, and Depression on the Stigma of Epilepsy in Khoram-Abad, Iran

Agreement of Palestinian nursing students with recommendations to eliminate epilepsy stigma and change perception of the general public about epilepsy: A cross-sectional study

ObjectiveThis study was conducted to assess the degree of agreement of Palestinian nursing students with recommendations and key messages to eliminate/reduce epilepsy stigma and change perception of the general public about epilepsy and people with epilepsy (PWE). MethodsA cross-sectional observational study was conducted among undergraduate nursing students. The study tool was a questionnaire with 24 items which collected the sociodemographic and academic characteristics of the participants (6 items) and agreements with 18 recommendations and key messages to eliminate/reduce epilepsy stigma. ResultsA total of 342 nursing students completed the questionnaire with a response rate of 68.4%. The participants agreed with the 6 recommendations to inform media, improve awareness, and educate the general public on epilepsy (agreement rates: 87.7% to 92.4%), 4 recommendations to coordinate efforts to improve awareness and educate the general public on epilepsy and PWE (agreement rates: 89.8% to 93.0%), and 8 key messages to eliminate/reduce epilepsy stigma (agreement rates: 70.2% to 93.9%). In general, female students tended to express significantly higher levels of agreement with the recommendations and key messages (p-value < 0.05). ConclusionResults of the present study highlighted the importance of involving nurses and future nurses in eliminating/reducing epilepsy stigma and changing perception of the general public about epilepsy and PWE. Further studies are to be conducted to investigate if these recommendations and messages can eliminate or significantly reduce epilepsy stigma and change perception of the general public about epilepsy and PWE.

The Correlation Factors on Epilepsy Stigma amongst People in Indonesia.

The Correlation Factors on Epilepsy Stigma amongst People in Indonesia.

Knowledge, attitude, and practice towards epilepsy among religious cleric and traditional healers of Addis Ababa, Ethiopia

PurposeUnderstanding clerics and healers' knowledge, attitude, and practice towards epilepsy are crucial to identify the mechanisms of epilepsy stigma in Ethiopia. The objective of this study is to characterize the social and demographic determinants of knowledge, attitude, and practices of clerics and healers towards people with epilepsy in Addis Ababa, Ethiopia. MethodsA total of 440 clerics and healers were interviewed by trained data collectors using a pretested structured questionnaire. The count sum of outcome variables was grouped into “biological and cultural” knowledge attitude and practice scores. Ordinal regression analysis was performed for each outcome variable against socio-demographic variables of interest. ResultsThe percentage of responses matching cultural causes (58%) surpassed biological causes. The most frequently mentioned cultural cause was an evil spirit (22.5%). While the most frequently mentioned biological cause was a head injury (12%). Consistent with the above findings, cultural treatment responses (77%) exceeded biological treatment responses. The most commonly referred cultural treatment response was Church healing session (12%). The type of faith followed by the study participants positively correlated with higher cultural knowledge, attitude, and practice score. ConclusionsClerics and traditional healers in Ethiopia have a partiality to the cultural epilepsy explanation model. Cultural metaphors attached to an evil spirit, curse of God, and witchcraft have formed and fostered existing ‘epilepsy societal norms’ in Ethiopia. The findings of this study contribute to the understanding of epilepsy stigma and treatment gap. Besides, it provided direction to design and implement epilepsy stigma intervention programs in Ethiopia.

O discurso médico-científico acerca da relação epilepsia e trabalho: Prescrições, limites e possibilidades ao sujeito trabalhador

O ensaio busca problematizar as concepções relativas à epilepsia e, em especial, ao discurso médico-científico sobre as relações existentes entre essa doença e a vida de trabalho. A partir de uma revisão de literatura não exaustiva, são retomados elementos históricos e conceituais, tendo como objetivo identificar como a epilepsia foi concebida no ocidente até ser encampada pelo saber científico e como esse saber discorreu a respeito da capacitação ou da incapacitação do sujeito acometido para o trabalho remunerado. Constata-se que, declinado o discurso pré-moderno, a ciência médica apropria-se da epilepsia, dando a ela o status de doença orgânica. Entretanto, o estigma, antes incitado por interpretações obscuras, não foi extinto, interferindo na relação do sujeito acometido com o outro, sobretudo quando se compreende que trabalhar é uma forma de relação social, em que o corpo e a subjetividade estão envolvidos. Nota-se que argumentos técnicos sustentados na perspectiva do risco e da segurança geram prescrições limitadoras à vida laboral, leitura esta, ponderada em âmbito acadêmico por discursos que visam preservar a autonomia pessoal na epilepsia, havendo a coabitação desses discursos na contemporaneidade. Os pressupostos foucaultianos relativos a tais discursos, na perspectiva do saber-poder, permitem ampliar a lucidez acerca da efetiva materialidade orgânica desse mal, destacando-a da apreensão discursiva do fenômeno e seus efeitos.

Public Stigma Associated with Epilepsy among Sudanese Residents in Alttondob Abu Kleioa Village, 2018-2019

Introduction: Epilepsy associated stigma in Africa has been described largely in terms of enacted stigma or discrimination. We conducted a study of 157 original inhabitants. Stigma is known as a sign of disgrace or collection of wrong thoughts towards something. Objectives: The aim of this study is to study the social stigma associated with epilepsy in Alttondob Abukleioa village, Al-Jazeera state, Sudan. Methods: A community-based cross-sectional descriptive study involving 157 original inhabitants is designed to examine the knowledge, attitude, practice, and stigma of epilepsy in Alttondob Abukleioa. Results: A total of 157 participants were interviewed. The median age of respondents was 34 and were females (88.5%). Most (87%) of participants had a formal education. According to the impact of epilepsy, (64%) think that epileptic patients can't pose risk to others, and (53%) having a normal IQ. (53%) admitted they will not marry an epileptic patient, while (84%) of them are willing to participate with an epileptic patient in any social work, and (85%) said that they will admit their illness. Conclusion: The findings indicated a need to increase epilepsy awareness programs as a means of increasing public knowledge of epilepsy with the aim of reducing stigma.

Correlates of Stigma in People with Epilepsy.

Background and PurposeEpilepsy is often associated with substantial stigma. This study evaluated clinical correlates of stigma in a sample of people living with epilepsy (PLWE) considered high risk due to frequent seizures or other negative health events.MethodsData were derived from an epilepsy self-management clinical trial. Standardized measures assessed socio-demographics, epilepsy stigma, epilepsy severity, self-efficacy, self-management competency, health literacy, depressive symptoms severity, functional status, social support and quality of life.ResultsThere were 120 individuals, mean age of 41.73 (SD=17.08), 81 men (66.9%), and 79 (65.3%) African-American. Individual factors correlated with worse stigma w ere indicative of more severe or poorly controlled seizures (frequent seizures, worse seizure severity scores, more antiepileptic drugs), mental health comorbidity (worse depression severity, other comorbidities) and factors related to individual functioning and perceived competency in managing their health (health literacy, health functioning, self-efficacy, quality of life). Multivariable linear regression found that worse quality of life, and having a mental condition were associated with more stigma (β=6.4 and 6.8, respectively), while higher self-efficacy, health literacy and social support were associated with less stigma (β=−0.06, −2.1, and −0.3, respectively). These five variables explained 50% of stigma variation.ConclusionsStigma burden can be substantial among PLWE and may vary depending on contextual factors such as mental health comorbidity. Care approaches that screen for psychiatric comorbidities, address low health literacy, institute promising self-management programs, and employ effective health communication strategies about epilepsy misconceptions, may reduce epilepsy related burden.

Epilepsi ve Stigma

The lack of information on epilepsy in those with epilepsy and those around them and the misconceptions about the disease result in the stigmatization of people with epilepsy. Consequently, the marriage and the employment rates of people with epilepsy have decreased, while the probability of depression has increased. The biopsychosocial health of the individuals with epilepsy must improve in order to combat stigma of epilepsy.

Indonesian Public Attitudes Toward Epilepsy (PATE) scale: Translation and psychometric evaluation

IntroductionEpilepsy stigma has been associated with poor quality of life among people with epilepsy (PWE). It is important to understand the variation and degree of epilepsy stigma in one of the most populous and culturally diverse nations in the world, Indonesia. Hence, this study aimed to test the validity and reliability of the Indonesian version of the Public Attitudes Toward Epilepsy (PATE) scale. MethodThe translation was performed according to standard principles and tested in 200 native Indonesian speakers who were aged above 18-year-old for psychometric validation. ResultsThe items in each domain had similar means and standard deviations (equal item variance), means ranging from 2.17 to 2.86 in general domain and 2.75 to 3.56 in personal domain and, standard deviations ranging from 0.87 to 1.05 and 0.88 to 1.01 in general and personal domain, respectively. Item-domain correlations were more than 0.5 for all items, and they correlate higher within their own domain compare with the other domain (convergent and divergent validity). Multitrait analysis showed similar variance, floor, and ceiling patterns to a great extent compared with the initial study. The Indonesian PATE scale also showed mostly similar correlation with demographic characteristics except monthly income. Principle axis analysis revealed strong factor loading (>0.3) in their hypothesized domain, except item 14. The Cronbach's α values for general and personal domains were 0.836 and 0.765, which were within the accepted range of 0.7 to 0.9. ConclusionThe Indonesian PATE scale is a validated and reliable translation for measuring public attitudes toward epilepsy.

Epilepsy-related knowledge and attitudes toward people with epilepsy among hospital staff in Van City, Turkey

BackgroundThe level of knowledge and exhibited attitudes of hospital staff may affect the quality of healthcare for people with epilepsy, and they may have a direct impact on epilepsy stigma in the general population. AimThe aim of this study was to evaluate knowledge and attitudes of hospital staff regarding epilepsy at a hospital located in the eastern side of Turkey. MethodThis study was conducted with 210 hospital staff working at Van Regional Educational and Training Hospital in Van, Turkey. Data regarding the demographics and familiarity with epilepsy were obtained. Epilepsy knowledge scale and epilepsy attitude scale were used to evaluate the level of knowledge and attitudes regarding epilepsy, respectively. ResultsThe mean score of epilepsy knowledge scale was 11.3 ± 3.8 and the mean score of epilepsy attitude scale was 58.2 ± 6.3. The level of knowledge was positively associated with being familiar with epilepsy. Positive attitudes regarding epilepsy correlated with higher level of knowledge (p < 0.001). Negative attitude regarding epilepsy was particularly present toward relationship and marriage involving people with epilepsy. ConclusionOur study results showed that hospital staff had a moderate level of knowledge regarding epilepsy. The study sample generally displayed a positive attitude, but not in the items related to relationship and marriage involving people with epilepsy. More knowledge was associated with a more positive attitude. Education programs can help to increase knowledge, and thus to improve attitudes regarding epilepsy.

Anxiety disorders in predominantly African American and Caribbean American adults with intractable epilepsy: The role of perceived epilepsy stigma

IntroductionAnxiety disproportionately affects people with epilepsy (PWE) and leads to poor outcomes. Yet, risk factors are not well understood especially among underserved groups. This cross-sectional study aimed to identify epilepsy-specific predictors of anxiety disorders in predominantly African American and Caribbean American PWE. Materials and methodsThe prevalence of anxiety disorders was established via diagnostic interview (Mini-International Neuropsychiatric Interview (MINI)). We identified the extent to which aspects of seizure burden (seizure frequency, seizure severity, convulsive vs. nonconvulsive seizures), seizure worry, and perceived epilepsy stigma were associated with anxiety disorder diagnosis. Finally, logistic regression assessed the overall and independent contributions of significant risk factors. ResultsThere were 60 participants (62% women, 52% African American, 27% Caribbean American, 20% Hispanic/Latino) with an average of 2 seizures per month. Nearly half of the sample (43%) had ≥1 anxiety disorder, with 62% of affected individuals qualifying for agoraphobia. Those with anxiety disorders tended to have convulsive seizures (p = 0.037) and endorsed greater seizure worry (p = 0.012), more general symptoms of anxiety (p = 0.005), and worse perceived epilepsy stigma (p = 0.003). Logistic regression accounted for 28% to 37.6% of the variance in anxiety disorder diagnostic status and correctly classified 73% of cases; however, only perceived epilepsy stigma made a unique contribution. ConclusionsAnxiety disorders were prevalent in these predominantly African American and Caribbean American PWE. Epilepsy-specific risk factors included convulsive seizures, seizure worry, and perceived epilepsy stigma. Interventions aimed at treating anxiety disorders in diverse PWE may especially benefit from targeting stigma beliefs.

Advancing research toward faster diagnosis, better treatment, and end of stigma in epilepsy.

Seven large European Union (EU)-funded epilepsy-related research projects joined forces in May 2018 in Brussels, Belgium, in a unique community building event-the epiXchange conference. During this conference, 170 investigators from the projects DESIRE, EpimiRNA, EPISTOP, EpiTarget, EpiXchange, and EpiPGX as well as the European Reference Network EpiCARE, met up with key stakeholders including representatives of the European Commission, patient organizations, commercial partners, and other European and International groups. The epiXchange conference focused on sharing and reviewing the advances made by each project in the previous 5years; describing the infrastructures generated; and discussing the innovations and commercial applications across five thematic areas: biomarkers, genetics, therapeutics, comorbidities, and biobanks and resources. These projects have, in fact, generated major breakthroughs including the discovery of biofluid-based molecules for diagnosis, elucidating new genetic causes of epilepsy, creating advanced new models of epilepsy, and the pre-clinical development of novel compounds. Workshop-style discussions focused on how to overcome scientific and clinical challenges for accelerating translation of research outcomes and how to increase synergies between the projects and stakeholders at a European level. The resulting advances would lead toward a measurable impact of epilepsy research through better diagnostics, treatments, and quality-of-life for persons with epilepsy. In addition, epiXchange provided a unique forum for examining how the different projects could build momentum for future novel groundbreaking epilepsy research in Europe and beyond. This report includes the main recommendations that resulted from these discussions.

The relationship between the perceptions of stigma expressed by the relatives of patients with epilepsy and sociodemographic factors: The case of eastern Turkey

PurposeStigma is a significant risk that exists in the immediate vicinity of patients with epilepsy. The present study was performed to determine the stigma perceptions of the relatives of patients with epilepsy in Turkey. MethodThe study was conducted with the relatives (aged 18–70 years) of 137 patients with epilepsy who were referred to a neurology outpatient clinic in a city east of Turkey. The Epilepsy Stigma Scale Patient's Relative Form and a Personal Information Form were used to collect data. ResultThe relatives of the patients were found to be moderately stigmatized. There was a statistically significant difference between the stigma mean scores of the relatives of the patients whose income was more than their expenditures and other income groups. It was also determined that those whose income was more than their expenditures had higher scores in the discrimination and prejudgment subdimensions; those residing in villages had higher scores in the prejudgment subdimension; those with a low education level had higher scores in the false belief subdimension; and the siblings of patients with epilepsy had higher scores in the prejudgment subdimension. ConclusionThe results of our study indicate that the relatives of patients with epilepsy suffer from stigma. The differences in terms of the discrimination, prejudgment, and false belief subdimensions between different income statuses, education statuses, places of residence, and degrees of relationship refer to the problems that need to be overcome.

Epilepsy stigma in Saudi Arabia: The roles of mind–body dualism, supernatural beliefs, and religiosity

IntroductionThe stigma of epilepsy continues to negatively impact people with epilepsy (PWE) in many Arab Middle Eastern countries, including Saudi Arabia. Socioreligious, cultural, and philosophical ideas prevalent in the region may contribute to the underpinnings of stigma toward PWE, but this has not been sufficiently studied. Materials and methodsThis study recruited a convenience sample of people without epilepsy from clinic waiting rooms and through social media. Participants completed a questionnaire with questions about demographics, mind–body dualism (MBD), supernatural beliefs (SB), attitudes toward epilepsy (ATE), and religiosity. ResultsA total of 210 participants were recruited. Analysis of variance (ANOVA) showed a significant difference in the mean total ATE scores, indicating better ATE with higher education (p < 0.001). Despite the relatively high level of education and a high proportion of participants with medical training, only slightly more than half rejected the possibility that demonic possession may be a cause of epilepsy. Attitudes toward epilepsy were correlated with MDB and SB but not with religiosity. Mind–body dualism and religiosity correlated significantly with negative attitudes toward PWE (p < 0.05). A linear regression model using ATE as the dependent variable and MDB, SB, and educational level as independent variables significantly predicted ATE (F = 15.6, p < 0.001, R2 = 0.24), although SB dropped out as a predictor of ATE in that model. Another regression used SB as the dependent variable, and MBD, religiosity, and educational level as independent variables were also significant with all three variables predicting SB (F = 64.0, p < 0.001). ConclusionsMind–body dualism was related to the cognitive process leading to supernatural misconceptions about epilepsy and negative attitudes toward PWE in Saudi Arabia. Although misconceptions that supernatural possession was the cause of epilepsy (justifying treatment by religious healing) and was likely derived from prevalent religious beliefs of the region, religiosity was not associated with negative attitudes toward PWE. The merits and efficacy of an intervention focused on reducing the negative effects of MBD and SB on ATE warrants further investigation.

A systematic review protocol of stigma among children and adolescents with epilepsy

BackgroundEpilepsy is a neurological condition that is highly prevalent among children and adolescents with 80% of the victims living in low- and middle-income countries (LMIC). Epilepsy is associated with high levels of both perceived and enacted stigma, which vary geographically and greatly affects the victims’ quality of life and self-esteem. High rates of stigma are also a significant barrier to accessing medical care. Perceived and enacted epilepsy-related stigma is associated with various sociodemographic and clinical factors, which vary from place to place. Therefore, this review will determine the prevalence of stigma of epilepsy among children and adolescents and the associated factors worldwide.MethodsWe will search for literature in PubMed, EMBASE, PsycINFO, and CINAHL databases as well as grey literature. We will also search via Google Scholar to capture relevant literature that may not be in the searched databases. We will then screen reference lists of included studies for more studies. Studies that have documented the prevalence of epilepsy-related perceived or enacted stigma and the associated factors will be eligible for inclusion. Data will be extracted in duplicates using a pre-piloted tool consisting of study and participant characteristics as well as pre-determined factors associated with epilepsy. Heterogeneity will be assessed by a forest plot and quantified by I2 statistic, and in case it is high, results will be reported as a narrative and it will further be explored by subgroup analysis. In case of homogeneity, meta-analysis will be done. Bias will be assessed using a critical appraisal tool developed for prevalence studies. The strength of evidence among the studies will be assessed using the GRADE approach.DiscussionFindings from this review will document the burden of stigma of epilepsy and the common contributing factors, which will form the building blocks of interventions that address this health challenge.Systematic review registrationPROSPERO CRD42017058957

Epilepsy and identity: a linguistic analysis of seizure label semantics

ABSTRACT Background: The stigma of epilepsy still holds fast today, and consequently results in people with epilepsy not seeking the support they require. To date, little research has been conducted into seizure label preferences. This paper contributes new findings to this growing body of research. Methods: Participants with epilepsy completed an online survey stating their preferences for seizure labels: seizure; fit; attack; episode; s/he is having a seizure/fit; and s/he is fitting/seizing. Through a thematic linguistic analysis of the participants’ comments, this paper investigates the influence of semantics and grammatical variation to assess how these linguistic features portray epilepsy. The semantic implications of individuals’ personal seizure labels are also explored. Results: The consensus falls with seizure and s/he is having a seizure, as the alternative choices were comparatively less popular and illustrated many negative connotations. The participants’ explanations their ‘least preferable’ rankings were categorized and thematically aligned. This proposed taxonomy offers insight into how different labels shape identity and contribute to the stigma. The grammatical variations of the phrases appear to contribute to (mis)representing seizure trajectory and imagery. The personalized seizure labels offered by a selection of participants may also be suggestive of the seizure experience itself. Conclusions: The consensus of these results can guide healthcare professionals and the media to opt, in the first instance, for the terms/ phrases that have been thought as the most preferable, and to avoid using those ranked by the majority as least preferable.