Stigma experience of people with epilepsy in Mexico and views of health care providers

Espínola-Nadurille, Mariana; Crail-Meléndez, Daniel; Sánchez-Guzmán, María Alejandra

doi:10.1016/j.yebeh.2013.12.007

Cited by 28 publications

(19 citation statements)

References 20 publications

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“…These provided some novel insights. A study from Mexico, 45 which utilized in-depth interviews with patients, care-givers, and medical providers, indicated that if seizures were fully controlled, there was no epilepsy stigma, implying that patients might be to blame if their seizures were not adequately controlled.…”

Section: Resultsmentioning

confidence: 99%

Epilepsy misconceptions and stigma reduction: Current status in Western countries

Herrmann

Welter

Berg

et al. 2016

Epilepsy & Behavior

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Objective: This systematized literature review identified reports describing epilepsy misconceptions in the developed Western countries and research interventions focused on reducing these misconceptions. Materials and Methods: English language publications from January 2004 to January 2015 that described original research conducted in Europe, North/Central/South America or Australia on misconceptions about epilepsy among the general public. Results: 81 publications were selected. Most studies were conducted in the Americas (N=30) and Europe (N=31). Misconceptions and attitudes about epilepsy were assessed among clinical providers (N= 9), family members of people with epilepsy (PWE, N=5), teachers (N= 11), students (N=22), and the general public (N= 25). Most studies used structured questionnaires, sometimes adding open-ended questions. Misconceptions reflected socially exclusionary attitudes directed at PWE, ignorance about treatment, and over-generalizations that are stigmatizing when applied to all PWE. Misconceptions were more prevalent in those with less education, lower socioeconomic status, and no exposure to PWE. There were only 12 intervention studies. While intervention studies were generally effective in improving attitudes, many were targeted to healthcare and education settings, were time intensive, and impractical for broad general population implementation. None incorporated newer technology-based strategies regarding effective health communication approaches. Conclusions: Types of epilepsy misconceptions were similar in reports published over the last decade, although most referred to misconceptions that have already been previously described. Existing questionnaires may fail to identify more subtle forms of current misconceptions and negative attitudes. Few interventional studies specifically target epilepsy stigma. Practical and broad scalable approaches to de-stigmatize epilepsy may help reduce misconceptions.

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Section: Resultsmentioning

confidence: 99%

Epilepsy misconceptions and stigma reduction: Current status in Western countries

Herrmann

Welter

Berg

et al. 2016

Epilepsy & Behavior

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“…Participants are convinced that no one wants a partner who represents a burden. Espínola-Nadurille and colleagues have found similar responses when PWE experienced an end of a relationship with a partner or immediate relatives due to epilepsy or when partner or relatives were present during an episode [ 20 ]. Our study shows that the expectation that a disclosure in person might be better for a relationship is not always fulfilled.…”

Section: Discussionmentioning

confidence: 99%

“…Discrimination and stigmatisation of PWE are social determinants of health with poor social prognosis [ 19 , 20 ]. Both affect PWE more than epileptic episodes [ 21 ].…”

Section: Introductionmentioning

confidence: 99%

Persons with Epilepsy: Between Social Inclusion and Marginalisation

Mlinar

Petek

Cotič

et al. 2016

Behavioural Neurology

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Background. Epilepsy is a chronic neurological disorder that can lead to complex psychosocial consequences. Epilepsy can change the social status of persons with epilepsy (PWE) and has an effect on their social inclusion as well as their perception of social inclusion. This study aims to explore subjective experiences with social inclusion of PWE in Slovenia. Methods. This study takes a qualitative approach. Eleven semistructured interviews were conducted with eleven participants. Interviews were analysed using thematic analysis. Results. Epilepsy has physical, emotional, and social consequences. Physical consequences of epilepsy are mainly tiredness and exhaustion following an epileptic episode, frequently accompanied by headaches. Emotional consequences are different forms of fear. The main social consequence identified is a negative effect on PWE's social network, which leads to (self-)isolation and social distrust. Conclusion. PWE experience of social inclusion depends on various psychosocial factors and differs from person to person. The consequences of epilepsy are shown in PWE social contacts and their sense of social inclusion and autonomy.

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“…Adolescents can be mentally and emotionally fragile, therefore, epilepsy can stigmatize children and impair their independence, social abilities, peer relations, self-esteem, mood, and cognition during this turbulent stage of life [6]. Epileptic seizures are not permanently evident within individuals, but their unexpected and dramatic nature triggers a very negative impression from strangers in public places towards people with epilepsy [7]. Accordingly, there can be negative effects on social identity in children with epilepsy because of the stigma associated with having epilepsy.…”

Section: Sigma In Children With Epilepsymentioning

confidence: 99%

Perceived Stigma in Children with Epilepsy

Kanemura¹,

Aihara²

2016

Pediat Therapeut

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Children with epilepsy are more likely to have poorer quality of life (QOL) than the general population. Stigma is a global phenomenon associated with several chronic diseases with great negative impact on patients and their families and deleterious consequences in their QOL. People with epilepsy report that stigma is one of the greatest challenges that they face. Adolescents can be mentally and emotionally fragile, therefore, epilepsy can stigmatize children and impair their independence, social abilities, peer relations, self-esteem, mood, and cognition during this turbulent stage of life. To develop and implement interventions to improve the psychosocial health of individuals with epilepsy, it is important for researchers and clinicians to understand the effects of the stigma accompanying epilepsy. Our previous study using Child Stigma Scale showed that children with frequent seizures perceived themselves as significantly more stigmatized compared to seizure-free children (p < 0.01). These findings suggest that a relationship may be seen between current seizure frequency and perceived stigma. On the other hand, the responses of children with epilepsy on the Child Stigma Scale were different depending on the localization of EEG paroxysmal abnormality (PA). The scores of all questions were significantly higher in the frontal group than those with PA in other regions (p < 0.01). Frontal EEG PA may function as a mediator of emotional responses such as stigma. Organizing children and adolescents support groups and effective educational intervention programs for children with and without epilepsy should be given priority in reduced stigma of children with epilepsy.

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Stigma experience of people with epilepsy in Mexico and views of health care providers

Cited by 28 publications

References 20 publications

Epilepsy misconceptions and stigma reduction: Current status in Western countries

Epilepsy misconceptions and stigma reduction: Current status in Western countries

Persons with Epilepsy: Between Social Inclusion and Marginalisation

Perceived Stigma in Children with Epilepsy

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