Correlates of Stigma in People with Epilepsy

Abstract

Background and Purpose Epilepsy is often associated with substantial stigma. This study evaluated clinical correlates of stigma in a sample of people living with epilepsy (PLWE) considered high risk due to frequent seizures or other negative health events. Methods Data were derived from an epilepsy self-management clinical trial. Standardized measures assessed socio-demographics, epilepsy stigma, epilepsy severity, self-efficacy, selfmanagement competency, health literacy, depressive symptoms severity, functional status, social support and quality of life. Results There were 120 individuals, mean age of 41.73 (SD=17.08), 81 men (66.9%), and 79 (65.3%) African-American. Individual factors correlated with worse stigma w ere indicative of more severe or poorly controlled seizures (frequent seizures, worse seizure severity scores, more antiepileptic drugs), mental health comorbidity (worse depression severity, other comorbidities) and factors related to individual functioning and perceived competency in managing their health (health literacy, health functioning, self-efficacy, quality of life). Multivariable linear regression found that worse quality of life, and having a mental condition were associated with more stigma (β=6.4 and 6.8, respectively), while higher self-efficacy, health literacy and social support were associated with less stigma (β=-0.06,-2.1, and-0.3, respectively). These five variables explained 50% of stigma variation. Conclusions Stigma burden can be substantial among PLWE and may vary depending on contextual factors such as mental health comorbidity. Care approaches that screen for psychiatric comorbidities, address low health literacy, institute promising self-management programs, and employ effective health communication strategies about epilepsy misconceptions, may reduce epilepsy related burden.

People with epilepsy still feel stigmatized

“…However, we did not find any correlation between depression and experienced stigma. In a recent study in patients who had recently had seizures, Blixen et al 23 found a strong correlation between depression and stigma and that stigma had additional negative health effects. In our study, in contrast, many patients were seizure free and thus probably had less severe epilepsy and lower disease burden.…”

Presenting complaint: use of language that disempowers patients

“…It may be better to acknowledge that patients can never truly control their blood glucose concentrations by using terms such as influence 26. Use of “poorly controlled” is also damaging in other conditions such as epilepsy, where describing patients as having poorly controlled seizures is correlated with worsened stigma 27…”

“… 26 Use of “poorly controlled” is also damaging in other conditions such as epilepsy, where describing patients as having poorly controlled seizures is correlated with worsened stigma. 27 …”

Social Anxiety, Social Support, and Quality of Life in Patients With Epilepsy at a Tertiary Care Hospital in Saudi Arabia

“…Several studies have been conducted on social anxiety among the general population. The reason why social anxiety is more significant for PWE is due to the extreme fear of having a seizure in public and feeling humiliated and judged, which prevents the patients from carrying out their daily activities [ 22 ]. As a result, PWEs begin to avoid social interactions, and their mobility becomes restricted.…”