Semester

Summer

Date of Graduation

2026

Document Type

Dissertation

Degree Type

PhD

College

Eberly College of Arts and Sciences

Department

Psychology

Committee Chair

Christina L. Duncan

Committee Co-Chair

Kevin Larkin

Committee Member

Melissa Blank

Committee Member

Kathryn Kestner

Committee Member

Elizabeth Claydon

Abstract

Navigating the transition to adulthood presents unique challenges for young adults with epilepsy, particularly concerning stigma and the fear of disease disclosure. While significant social difficulties, such as increased unemployment rates and decreased relationship satisfaction, are prevalent among individuals with epilepsy, current transition programs often fail to address these psychological and social aspects that are vital for an independent adult life. Instead, the majority of the attention for young adults transitioning into adulthood is focused on the shift to adult-oriented healthcare systems. Consequently, there is a critical need for research that goes beyond a healthcare focus and explores the social and lifestyle aspects of transitioning to adulthood. As such, this study explored the lived experiences of young adults with epilepsy across key domains, including driving, alcohol use, romantic relationships, employment, and independent living. Using a phenomenological qualitative design, semi-structured interviews were conducted with 25 participants with epilepsy aged 21-26 years (Mage = 23.57). Thematic analysis using NVivo identified four overarching themes: (1) Living With Uncertainty and Vigilance, highlighting the constant monitoring and planning required to manage seizure risk; (2) Medical Management as a Trade-Off Between Safety and Quality of Life, illustrating the balance between treatment adherence and functional well-being; (3) Navigating Social Worlds Under Conditions of Risk and Stigma, emphasizing how anticipated stigma and selective disclosure shape social engagement; and (4) Redefining Adulthood and Identity Through Interdependence, showing how participants reframe independence and adulthood in the context of epilepsy. Collectively, these themes reveal that the transition to adulthood for young adults with epilepsy is characterized by ongoing negotiation between health management, social participation, and identity development, rather than a linear progression toward autonomy. These findings underscore the need for interventions and support services that address not only medical management but also stigma, social inclusion, and adaptive strategies for independent living, thereby enhancing quality of life and facilitating a more holistic transition to adulthood for young adults with epilepsy.

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