J Clin Neurol.
2020 Jul;16(3):423-432. 10.3988/jcn.2020.16.3.423.
Correlates of Stigma in People with Epilepsy
- Affiliations
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- 1Department of Psychiatry and Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine, Cleveland, OH, USA.
- 2School of Medicine, Case Western Reserve University, Cleveland, OH, USA.
- 3Department of Population and Quantitative Health Sciences, Case Western Reserve University, School of Medicine, Cleveland, OH, USA.
- 4Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
- 5Frances Payne Bolton School of Nursing, Case Western Reserve University and Louis Stokes VAMC, Cleveland, OH, USA.
- 6Department of Psychiatry and Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
- 7Department of Psychiatry and Neurology, Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals, Cleveland Medical Center, Cleveland, OH, USA.
- KMID: 2506612
- DOI: http://doi.org/10.3988/jcn.2020.16.3.423
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.
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