Knowledge and attitudes about epilepsy: A survey of high school students in Germany

Jansen, P.A.F.; Neininger, Martina Patrizia; Bernhard, Matthias K.; Kieß, Wieland; Merkenschlager, Andreas; Bertsche, Thilo; Bertsche, Astrid

doi:10.1016/j.seizure.2017.08.008

Cited by 24 publications

(14 citation statements)

References 21 publications

(38 reference statements)

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“…Between 2005 and 2013, the percentage of people who said they would be nervous around people with epilepsy increased [6]. In a German survey of more than 1000 students aged approximately 14 years, one-fifth of the participants reported that they would not want to go on a romantic date with a person with epilepsy [12]. Parents of children with epilepsy and developmental disorders reported discrimination against their children [21].…”

Section: Discussionmentioning

confidence: 99%

“…In an earlier survey, a quarter of pediatric epilepsy patients reported that they thought they were generally worse off than healthy children [18]. A number of healthy adolescents still have reservations about, for example, being in a romantic relationship with a person with epilepsy [12]. Such reservations could prompt pediatric epilepsy patients to conceal their condition, but having to conceal something as important as a chronic condition can put enormous stress on patients.…”

Section: Introductionmentioning

confidence: 99%

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Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?

et al. 2020

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A diagnosis of epilepsy substantially influences the lives of affected children and adolescents, and concealing the diagnosis can generate additional stress. However, little is known about whether children and adolescents communicate their diagnosis to their friends. We performed a survey at two German university hospitals. Epilepsy patients aged 6–18 years were asked why they did or did not disclose their condition to their friends. A total of 101 patients (44 female, 57 male) were interviewed. Twenty-one (21%) informed all their friends about their epilepsy, 63 (62%) informed only certain friends, and 3 (3%) did not specify. Fourteen (14%) did not inform any friends. Their reasons for informing their friends were trust in friends (47/87; 54%); questions from friends, e.g., about missed school days (29/87; 33%); a wish for friends to be informed in case of an emergency (15/87; 17%); and a desire to live openly with the condition (8/87; 9%). The reasons for not informing friends were fear of stigmatization/shame (4/14; 29%), discouragement from parents (3/14; 21%), and a wish for confidentiality (3/14; 21%). Conclusion: Most children and adolescents inform their friends about their epilepsy. Fear of stigmatization is the main reason for not informing friends about this condition. What is Known• An epilepsy diagnosis is a life-changing event for affected children and adolescents.• Having to conceal the diagnosis can be very stressful. What is New• Most pediatric epilepsy patients informed at least some close friends about their diagnosis motivated by trust in friends; questions from friends, e.g., about missed school days; and a wish for friends to be informed in case of an emergency.• Fear of stigmatization/shame, discouragement from parents, and a wish for confidentiality were the motivations for concealing the disease.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?

et al. 2020

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“… 5 6 A range of incorrect and even harmful practices to regulate seizure are frequently embraced; for instance, keeping iron rod in the hand, rubbing irritants to eyes, holding the patient in fire, burns, and ingestion of cow urine. 7 8 9 It is imperative to educate about management of this chronic disease to the caregivers and patients with epilepsy to improve self-care. 10 11 12 …”

Section: Introductionmentioning

confidence: 99%

The Effect of Comprehensive Video-Assisted Epilepsy Education on Drug Adherence and Self-Care in People with Epilepsy

Jothi

Ramamoorthy

Nair

2020

JNRP

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Abstract Background Epilepsy is a chronic neurological disorder which needs proper drug adherence and follow-up care to control the recurrent seizure events as one of the most common reasons for “breakthrough” seizures is nonadherence to antiepileptic drugs. In addition to usual therapeutic management, patients are encouraged to involve in epilepsy self-management by understanding the nature of the disease and its control measures to prevent the complications. Methods A single group experimental design (pretest–posttest) was conducted to evaluate the effect of comprehensive video-assisted teaching program on self-care efficacy and level of knowledge of patients with epilepsy. Data was collected by direct interview with Epilepsy Self-Management Scale and epilepsy knowledge questionnaire. A video-assisted teaching covering all aspects of epilepsy was given on the day of pretest. At the interval of 3 months, the level of drug adherence, self-care, and knowledge level were assessed. Results Majority of the study participants (47.1%) belonged to the age group between 19 and 30 years, 54.3% participants were male, majority of them (70%) had tonic-clonic seizure, and 40% of them reported the onset of seizures as above 20 years. Eighty-seven percent of participants had no family history of seizures or epilepsy. Note that 38.6% of the participants had at least one seizure episode/month. Majority of the caregivers were either parents (41.4%) or spouse (48.6%). The study revealed that, following video-assisted teaching, the proportion of participants with adequate knowledge has increased from 14 to 64.3%. Similarly, the percentage of participants who had good drug adherence increased from 52 to 65% and no participant had poor drug adherence. Participants who had high level of self-care increased from 71.4 to 88.6%. Conclusion To overcome the poor drug adherence-related complications, people with epilepsy are to be personally educated adequately to increase the factual information about the condition and their self-care practices.

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“…As a number of children with epilepsy already feel worse off than healthy children (Pauschek et al, 2016), adverse drug events, such as challenging behaviour, can increase the difficulties associated with social integration. In a German study, 3% of high school students even stated that they would not want to be friends with Physicians' experiences of epilepsy a person suffering from epilepsy (Jansen et al, 2017). In older age, adverse drug events, such as dizziness, unsteady gait, and falls, might become more relevant, as the prevalence of falls increases with age (Peeters et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

“…Several studies have explored the extent of knowledge and experiences regarding these issues. These have focussed on teachers (Dumeier et al, 2015;2017a;2017b), parents (Lewis et al, 2010;Bertsche et al, 2013;Spindler et al, 2017), patients (Lewis et al, 2010;Bertsche et al, 2013;Spindler et al, 2017), patients (Lewis et al, 2010;Pauschek et al, 2016;Kadel et al, 2018), or the public (Fong and Hung, 2002;Kartal and Akyıldız, 2016;Jansen et al, 2017). A recent study investigated the educational needs of physicians working in paediatric epileptology with emphasis on neurologists and neuropaediatricians (Murray et al, 2018).…”

mentioning

confidence: 99%

Epilepsy: a cross‐sectional study of paediatricians and general practitioners on their experiences, knowledge and handling of the disease

Schnabel¹,

Neininger

Bernhard³

et al. 2019

Epileptic Disorders

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Aims : Epilepsy is a life‐changing disease, and patients with epilepsy may face a number of issues. Paediatricians and general practitioners are often the first to be asked for advice. This cross‐sectional study was performed to gain information on the knowledge and experiences of paediatricians and general practitioners on epilepsy. Methods : From September 2015 to July 2017, paediatricians and general practitioners in Leipzig, Germany, were asked to take part in a face‐to‐face interview. Results : Overall, 40 paediatricians and 60 general practitioners participated in the study. A total of 99/100 (99%) kept emergency medication available and 96/100 (96%) would administer it during a seizure. Also, 40/40 (100%) of the paediatricians and 34/60 (57%) of the general practitioners recommended that non‐professionals should administer emergency medication, and 18/40 (45%) of the paediatricians and 35/60 (58%) of the general practitioners would put an object in the patient's mouth during a seizure. With regards to safety precautions, paediatricians mentioned the risks associated with swimming (30/40; 75%) and the potential of falling from a height (23/40; 58%), whereas general practitioners focused on being around vehicles including driving regulations (43/60; 72%). Only 5/60 (8%) of the general practitioners advised that precautions should be taken during swimming. Fatigue/exhaustion was the most common adverse drug event associated with long‐term anticonvulsive therapy mentioned by paediatricians (13/40; 33%) and general practitioners (27/60; 45%). Of all the participants, 23/100 (23%) recommended epilepsy training programmes for patients and families, however, none were able to name a specific programme. Conclusion : Nearly half of the general practitioners did not recommend the use of rescue medication by non‐professionals. This measure, however, can prevent the occurrence of prolonged non‐treatable seizures. Both paediatricians and general practitioners should bear in mind that placing an object in the mouth during a seizure should be avoided due to the risk of additional injury. To reduce the risk of drowning, physicians should recommend safety precautions during swimming. Information on epilepsy training programmes for patients and families should be diffused to all physicians taking care of patients with epilepsy.

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Knowledge and attitudes about epilepsy: A survey of high school students in Germany

Abstract: To improve knowledge and attitudes and reduce misconceptions further education seems necessary.

Cited by 24 publications

References 21 publications

Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?

Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?

The Effect of Comprehensive Video-Assisted Epilepsy Education on Drug Adherence and Self-Care in People with Epilepsy

Epilepsy: a cross‐sectional study of paediatricians and general practitioners on their experiences, knowledge and handling of the disease

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