Prejudices against people with epilepsy as perceived by affected people and their families

Lang, J; Jeschke, Sarah; Herziger, Birthe; Müller, Ruth Melinda; Bertsche, Thilo; Neininger, Martina Patrizia; Bertsche, Astrid

doi:10.1016/j.yebeh.2021.108535

Cited by 8 publications

(8 citation statements)

References 32 publications

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“…Compared with previous findings, perceived stigma was rather high in our cohort, with 70.6% reporting a perception of stigmatization at baseline and 61.3% at 3‐month follow‐up. In Europe, the frequency of PWE experiencing stigma has been reported to be between 31% and 69% 23,24,49,50 . Furthermore, the satisfaction with provision of SUDEP information was high, which might also reflect the satisfaction with the experience of a longer conversation with a physician in a friendly atmosphere in contrast to everyday medical practice.…”

Section: Limitationsmentioning

confidence: 99%

“…In Europe, the frequency of PWE experiencing stigma has been reported to be between 31% and 69%. 23,24,49,50 Furthermore, the satisfaction with provision of SUDEP information was high, which might also reflect the satisfaction with the experience of a longer conversation with a physician in a friendly atmosphere in contrast to everyday medical practice.…”

Section: Limitationsmentioning

confidence: 99%

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Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy

et al. 2022

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Objective: Despite increased awareness of the serious epilepsy complication sudden unexpected death in epilepsy (SUDEP), a substantial population of people with epilepsy (PWE) remain poorly informed. Physicians indicate concern that SUDEP information may adversely affect patients' health and quality of life. We examined SUDEP awareness and the immediate and long-term effects of providing SUDEP information to PWE.Methods: Baseline knowledge and behaviors among PWE and behavioral adjustments following the provision of SUDEP information were evaluated in a prospective, multicenter survey using the following validated scales: Neurological Disorders Depression Inventory for Epilepsy for depression symptoms, the EuroQoL five-dimension scale for health-related quality of life (HRQoL), a visual analog scale for overall health, the revised Epilepsy Stigma Scale for perceived stigma, and the Seizure Worry Scale for seizure-related worries. The prospective study collected data through semiquantitative interviews before (baseline), immediately after, and 3 months after the provision of SUDEP information. Results: In total, 236 participants (mean age = 39.3 years, range = 18-77 years, 51.7% women) were enrolled, and 205 (86.9%) completed long-term, 3-month follow-up. One patient died from SUDEP before follow-up. No worsening symptoms from baseline to 3-month follow-up were observed on any scale. At baseline, 27.5% of participants were aware of SUDEP. More than 85% of participants were satisfied with receiving SUDEP information. Three quarters of participants were not concerned by the information, and >80% of participants recommended the provision of SUDEP information to all PWE. Although most patients reported no behavioral adjustments, 24.8% reported strong behavioral adjustments at 3-month follow-up.

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Section: Limitationsmentioning

confidence: 99%

Section: Limitationsmentioning

confidence: 99%

Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy

et al. 2022

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“…Individuals with epilepsy may encounter several forms of discrimination, preventing them from employment opportunities, discouraging their participation in school activities, and jeopardizing their romantic relationships. In a survey of prejudices against PWE in Germany, 64% of PWE experienced it 8 . These stereotypical perceptions, attitudes, and feelings toward a particular person or group are called “Stigma” and have been identified as problematic in mental illness 9 …”

Section: Introductionmentioning

confidence: 99%

“…In a survey of prejudices against PWE in Germany, 64% of PWE experienced it. 8 These stereotypical perceptions, attitudes, and feelings toward a particular person or group are called "Stigma" and have been identified as problematic in mental illness. 9 1.2 | Self-stigma of people with epilepsy Stigma originates from ancient Greek, meaning "to carve, to mark as a sign of shame, punishment or disgrace".…”

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confidence: 99%

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Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)

et al. 2023

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ObjectiveSelf‐stigma is the internalization of unfavorable public perceptions, which people with epilepsy (PWE) frequently experience. PWE with strong self‐stigma have low self‐esteem and are less likely to engage in treatment behavior. The Epilepsy Self‐Stigma Scale (ESSS) has been developed and validated in Japan. We translated the ESSS into German for this study to examine its reliability and validity.MethodsWe created the German version of ESSS (ESSS‐G) based on the original Japanese version. From May to October 2022, we recruited out‐ and inpatients from Bethel Epilepsy Centre, University Hospital for Epileptology, for psychometric evaluation. Inclusion criteria were an age of ≥18 years, sufficient reading and speaking skills in German, and the ability to comprehend the German questionnaires. Participants also completed the Rosenberg Self‐Esteem Scale (RSES), Neurological Disorders Depression Inventory for Epilepsy (NDDI‐E), Generalized Anxiety Disorder 7 (GAD‐7), Epilepsy Knowledge Scale, and items on “overall quality of life (QOL)” and “overall health” (items from QOLIE‐31).ResultsOne hundred twenty‐eight of 146 patients asked to participate granted informed consent and completed the study questionnaire (87.7% response rate). 115 cases were analyzed since 13 did not match the inclusion criteria. The analysis revealed a single factor explaining 49.2% of the total variance. All factor loadings were >0.40, and the reliability was high (Cronbach's α = 0.80). Higher ESSS total scores were associated with higher anxiety (GAD‐7, r = 0.54, P < 0.001) and depression (NDDI‐E, r = 0.45, P < 0.001), lower self‐esteem (RSES, r = −0.41, P < 0.001), overall QOL (r = −0.40, P < 0.001), and overall health (r = −0.35, P < 0.001), but not with knowledge about epilepsy (r = 0.03, P = 0.770). In Germany, females, younger individuals, patients with earlier seizure onset, and those with generalized epilepsy had significantly higher self‐stigma.SignificanceThe German version of the ESSS proved reliable and valid. It allows to evaluate the efficacy of treatment strategies in lowering self‐stigma and conducting intercultural comparisons of epilepsy self‐stigma.

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Factors linked with perceived stigma amid people with Epilepsy -across sectional study

Verma,

Pathak,

Mishra

et al. 2024

Epilepsy Research

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Prejudices against people with epilepsy as perceived by affected people and their families

Cited by 8 publications

References 32 publications

Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy

Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy

Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)

Factors linked with perceived stigma amid people with Epilepsy -across sectional study

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