Men with epilepsy—The lost tribe?

Sare, Gillian; Rawnsley, Margaret; Stoneman, Amanda; Duncan, Susan E.

doi:10.1016/j.seizure.2007.02.007

Cited by 23 publications

(6 citation statements)

References 19 publications

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“…For instance, a study from the United Kingdom noted that of 373 men with epilepsy, 88% reported being heterosexual, 4% gay, 2% bisexual and 6% preferred not to respond. Unfortunately, no further subanalysis of non-heterosexual participants was made (Sare, Rawnsley, Stoneman, & Duncan, 2007).…”

Section: Discussionmentioning

confidence: 99%

Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people

Moreno

Laoch

Zasler

2017

NRE

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Abstract. BACKGROUND:There is an increasing interest in sexual and gender diversity in neurorehabilitation. Healthcare professionals wanting to improve their practice know the importance of understanding the needs and expectations of specific communities. OBJECTIVE: To critically review the literature about neurological disorders in people who identify as lesbian, gay, bisexual, transgender, queer, intersex, asexual, and people with other sexual orientations and forms of gender expression (LGBTQIA+). METHODS: Systematic search in electronic databases (CINAHL, EMBASE, Medline, PsycINFO, Scopus, and Web of Science) and identification of relevant studies. RESULTS: Quantitative and qualitative findings are summarized and reported by neurological disorders: a) neurodisability/epilepsy (17.7%), b) intellectual disability/autism spectrum disorders (19.6%), c) dementia/HIV-related dementia (39.2%), d) spinal cord injury (7.8%), and e) traumatic brain injury/stroke (15.7%). CONCLUSIONS:LGBTQIA+ people with neurodisabilities and their partners/families of choice can conceal their sexual orientation or gender identity for fear of diminished quality of care. Their invisibility translates into health disparities, lack of policies and services that meet their unique needs. Dementia is the most common neurodisability documented in LGBTQIA+ people. We provide recommendations to increase LGBTQIA+ cultural competency for clinical practice, research, and policy to help different stakeholders to promote a positive change in the culture of neurodisability.

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Section: Discussionmentioning

confidence: 99%

Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people

Moreno

Laoch

Zasler

2017

NRE

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“…The relevance of infodemiological studies evaluating the online seeking behaviour for information on epilepsy and epileptic seizures is supported by the fact that nowadays an increasing number of patients have ready access to online information about health and disease (information on epilepsy is just "only a mouse click away" [Donner and Buchhalter, 2014]), and if health care providers do not provide the required information, patients may seek it online. In one survey conducted in men affected by epilepsy, the internet was the third source of information on epilepsy after the general physician and the neurologist (Sare et al, 2007), whereas other surveys found that 54 to 77% of patients with epilepsy seek online information on how to self-manage their epilepsy (Escoffery et al, 2008). Epileptologists should be aware of the specific information needs of patients with epilepsy and work towards providing them.…”

Section: Wikipedia and Epilepsymentioning

confidence: 99%

Information‐seeking behaviour for epilepsy: an infodemiological study of searches for Wikipedia articles

Brigo

Otte

Igwe

et al. 2015

Epileptic Disorders

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Millions of people worldwide use the internet daily as a source of health information. Wikipedia is a popular free online encyclopaedia used by patients and physicians to search for health‐related information. Our aim was to evaluate information‐seeking behaviour of English‐speaking internet users searching Wikipedia for articles related to epilepsy and epileptic seizures. Using Wiki Trends, which provides quantitative information on daily viewing of articles, data on global search queries for Wikipedia articles related to epilepsy and seizures were analysed. The daily Wikipedia article views on syncope, psychogenic non‐epileptic seizures, migraine, and multiple sclerosis served as comparative data. The period of analysis covered was from January 2008 to December 2014. Overall, the Wikipedia article “epilepsy and driving” was found to be more frequently visited than the articles “epilepsy and employment” or “epilepsy in children”. Since January 2008, the Wikipedia article “multiple sclerosis” was more often visited compared to the articles “epilepsy”, “syncope”, “psychogenic non‐epileptic seizures” or “migraine”; the article “epilepsy” ranked 3,779 and was less frequently visited than “multiple sclerosis”, ranked at 571, in traffic on Wikipedia. The highest peak in search volume for the article “epilepsy” coincided with the news of a celebrity having seizures. Fears and worries about epileptic seizures, their impact on driving and employment, and news about celebrities with epilepsy might be major determinants in searching Wikipedia for information.

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“…Some authors have pointed out that for several reasons literature on epilepsy has a selected focus on female issues. A nationwide survey on epilepsy in the UK demonstrated that men with epilepsy felt comfortable discussing their epilepsy, confident in asking for information and that the condition adversely affected their self-esteem and quality of life [17,18].…”

Section: Discussionmentioning

confidence: 99%

Does public attitude change by labeling a person as epileptic, person with epilepsy or the acronym PWE? A systematic review

Carrizosa-Moog

Salazar-Velásquez

Portillo-Benjumea

et al. 2019

Seizure

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It is still unknown if attitudinal differences by diverse labeling of persons with epilepsy could be universally accepted with the actual literature evidence. The manner in which questions are constructed could also have an impact in final results. The purpose of this systematic review was to examine the published articles regarding changes in public´s attitude towards epilepsy by labeling a person as epileptic, person with epilepsy or with the acronym PWE.Methods: We undertook a systematic review of the literature using common databases with specific keywords and combinations searching for original articles, meta-analysis and systematic reviews. Sociodemographic variables, attitude results and questions style were analyzed in included articles.Results: Four original articles were found. Significant attitudinal changes were described in three studies with the label person with epilepsy. One study failed to demonstrate an attitudinal change by distinct labeling of a person with epilepsy. All questions were formulated in a personal way. Few neutral and mostly induced questions were found in the studies.Conclusion: By the use of the label "person with epilepsy" there is a trend towards positive changes in public's attitudes, although evidence is scarce to consider this tendency as universally applicable. More studies are needed considering widespread social and cultural backgrounds and patient opinion. Language power by wording type could be a key consideration for future studies.

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Men with epilepsy—The lost tribe?

Cited by 23 publications

References 19 publications

Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people

Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people

Information‐seeking behaviour for epilepsy: an infodemiological study of searches for Wikipedia articles

Does public attitude change by labeling a person as epileptic, person with epilepsy or the acronym PWE? A systematic review

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