Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy—Report from the International League Against Epilepsy Task Force on Stigma in Epilepsy

Abstract

Objective: To review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors.Methods: Thirteen databases were searched . Abstracts were reviewed in duplicate and data were independently extracted using a standardized form. Studies were characterized using descriptive analysis by whether they addressed "felt" or "enacted" stigma and "attitudes" toward persons living with epilepsy.Results: Of 4234 abstracts, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an "undesirable difference" and so anticipated being treated differently. Felt stigma was associated with increased risk of psychological difficulties and impaired quality of life. Felt stigma was linked to higher seizure frequency, recency of seizures, younger age at epilepsy onset or longer duration, lower educational level, poorer knowledge about epilepsy, and younger age. An important finding was the potential contribution of epilepsy terminology to the production of stigma. Negative attitudes toward those with epilepsy were described in 100% of included studies, and originated in any population group (students, teachers, healthcare professionals, general public, and those living with epilepsy). Better attitudes were generally noted in those of younger age or higher educational status.Significance: Whatever the specific beliefs about epilepsy, implications for felt and enacted stigma show considerable commonality worldwide. Although some studies show improvement in attitudes toward those living with epilepsy over time, much work remains to be done to improve attitudes and understand the true occurrence of discrimination against persons with epilepsy.

The association between illness perception and quality of life among Chinese adults with epilepsy: The mediating role of coping style

“…Personal coping styles have been reported to be closely correlated with illness perceptions [17], and may thus represent independently modifiable predictors of QOL among PWE. The report of the International League Against Epilepsy showed that there was a common sense of stigma in PWE, which was closely related to coping style and their psychology [19]. These results suggest that negative coping styles, which are particularly common among PWE owing to the chronicity, complexity, and stigma associated with this disease [20], may thus represent an important link between illness perception and the QOL.…”

Felt Stigma and Its Underlying Contributors in Epilepsy Patients

“…Various factors might be contributing to the stigma of epilepsy. Felt stigma was linked to higher seizure frequency, recency of seizures, younger age at epilepsy onset or longer duration, lower educational level, poorer knowledge about epilepsy, and younger age ( 47 ). Consistently, we found shorter education years, longer duration, and younger age of onset might have impacts on felt stigma.…”

“…Consistently, we found shorter education years, longer duration, and younger age of onset might have impacts on felt stigma. Previous studies demonstrated that perceived stigma was shown to vary inversely with age, with younger groups tending to feel more stigmatized compared to the older population ( 47 ). And younger age was significantly associated with greater perceptions of stigma in patients with 9 and 14 years of age ( 19 ).…”

“…The variability of age enrollment might be the explanation for the uncorrelated with age in this study. The presence of seizures emerged as the most common factor associated with higher degrees of perceived stigma, with stigma increasing with seizure severity ( 19 , 47 , 48 ). Our results indicated a similar tendency in patients with seizure frequency less than once per year, compared to those with more than once per week.…”

Perceived epilepsy-related stigma is linked to the socioeconomic status of the residence

“…Stigma represents a major limitation of quality of life (QoL) for PWE, even beyond seizure-related factors or other psychosocial comorbidities (9). Up to 80% of PWE report feeling stigmatized (10), but research shows a great variability in stigma prevalence depending on the specific patient population. This underlines that it is necessary to understand correlates of stigma to identify risk populations, and to develop adequate intervention and prevention strategies.…”