People with epilepsy still feel stigmatized

Abstract

Objectives Those affected with epilepsy have long been subject to stigmatization. This may have manifold negative effects, for example social isolation, low self‐esteem, reduced quality of life and worsening of seizures. In Norway educational programs have been arranged at the National Centre for Epilepsy, aiming at reducing stigma and shame associated with epilepsy, and thereby increase the quality of life for those affected and their families. Thus, we wanted to explore the extent of self‐reported perceived stigma and experienced discrimination in a Norwegian cohort with epilepsy. Materials and Methods We conducted a web‐based questionnaire survey in Norway. Participants were asked to provide background and epilepsy‐related information. In addition, they were encouraged to answer questions regarding felt stigmatization in different situations and to rate stigma according to the Jacoby stigma scale. Results Of 1182 respondents, 56% reported to have felt being stigmatized, and 35% reported to have experienced discrimination solely on the ground of the disease. 70% of respondents reported at least one type of perceived or experienced stigma. After controlling for gender, age, perceived depression and seizure freedom, reports of experienced stigmatization was a statistically significant independent predictor for reduced quality of life. Conclusions A considerable proportion of people with epilepsy in Norway feel stigmatized and/or subject to discrimination, which negatively affects their quality of life.

Assessment of knowledge, attitude and practice (KAP) of parents/caregivers towards epilepsy in children – A cross- sectional observational study

“…This slight discordance in the results of the present study and previously done studies from India and abroad could be attributed to the different study setting as well as the difference in the status of education level of the caregivers [ [14] , [15] , [16] ]. Children suffering from epilepsy have long been subject to stigmatization, which has manifold effects leading to social isolation, low self-esteem, reduced quality of life and worsening of seizures [ 17 , 18 ].…”

Social Isolation and Associated Factors in Chinese Adults With Epilepsy: A Cross-Sectional Study

“…The NDDI-E is specific to the population with epilepsy. Patients with epilepsy feel stigmatized and subject to discrimination if they have a seizure in front of others, which leads to limited social interaction and further exacerbates depression ( 32 , 33 ). Social isolation acts as a stressor that leads to alterations in reactivity to stress and social behavior in people ( 34 ).…”

Career development in individuals living with epilepsy: A reflective lifeworld phenomenological study

“…Enacted stigmas within the workplace persist regardless of advances in public health initiatives aimed at educating the larger populous about epilepsy (Braga et al, 2020;Deroche et al, 2024;Henning et al, 2021;Jacoby et al, 2005;Parfene et al, 2009). These stigmas extend to individuals who have close associations with PWE, exacerbating barriers by contributing to interpersonal conflicts (Parfene et al, 2009).…”