Correlates of Stigma in People with Epilepsy

Carol Blixen, Daisy Ogede, Farren Briggs, Michelle E Aebi, Christopher Burant, Betsy Wilson, Javier Ponce Terashima, Martha Sajatovic
Journal of Clinical Neurology 2020, 16 (3): 423-432

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, self-management 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.

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