A-156 Development of an Online Intervention to Reduce Internalized Stigma in Epilepsy

Abstract

Abstract Objective: Stigma is common in people with epilepsy (PWE), detracting from quality of life. Yet, no effective anti-stigma self-management programs exist for PWE. Here, we showcase a multidisciplinary team’s effort to create a telehealth-accessible anti-stigma intervention. Method: Systematic review of empirical and theoretical research on epilepsy stigma was leveraged to create an online anti-stigma program for PWE. Drawing on experience in epilepsy care, intervention development, and digital health solutions, two neuropsychologists, a neurologist, and a computer engineer engaged in iterative biweekly meetings for one-year to determine critical intervention components. Results: Four critical intervention components were identified: 1) stress management to combat negative affect caused by stigma, 2) stigma education around PWE’s self-limiting internalized experience of discrimination (i.e., “stigma thoughts”), 3) cognitive restructuring of “stigma thoughts”, and 4) problem solving to overcome stigma challenges. A self-administered, modular, online platform with built-in demonstration and interactive practice exercises was developed accordingly. Module one emphasizes deep breathing, relaxation, mindfulness, and visualization techniques. Module two presents vignettes derived from the lives of real PWE and teaches users to recognize stigma thoughts in others and themselves. Module three teaches users to apply cognitive reframing skills to unbalanced stigma-related thoughts. Module four guides users to apply problem-solving skills to everyday stigma challenges experienced by PWE. Conclusion: Drawing on research, theory, and collaborative multidisciplinary interaction, psychoeducational content employing a cognitive-behavioral framework was adapted to a self-administered, modular, online platform to mitigate the stigma felt by PWE. Future research will elicit feedback on the intervention’s concept, features, and content from community stakeholders with epilepsy.