Double Invisible Stigma in Young Adults with PFO-Related Stroke: A Qualitative Study
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BACKGROUND AND PURPOSE
Patent foramen ovale (PFO) accounts for 40% of cryptogenic strokes in adults under 60 years. While percutaneous closure effectively prevents recurrence, psychosocial impacts remain unexplored. We aimed to develop a theoretical framework for understanding stigma experiences in young adults with PFO-related stroke.
METHODS
Using constructivist grounded theory, we interviewed 26 young adults (median age 42.5 years) who underwent PFO closure following cryptogenic stroke at a tertiary center in China (2022-2024). Semi-structured interviews explored stigma experiences. Data were analyzed using constant comparative method until theoretical saturation.
RESULTS
Analysis revealed "double invisible stigma", a novel phenomenon where intersection of congenital cardiac defect invisibility and age-inappropriate stroke creates compound psychological distress exceeding either condition alone. Five themes emerged: emotional landscape of compound stigma, social consequences and relational disruption, multilevel stigma sources, coping strategies and adaptation, and healthcare navigation challenges. A temporal evolution model identified three phases: Acute Bewilderment (0-3 months), Strategic Navigation (3-9 months with peak stigma), and Crystallized Duality (9+ months). High-stigma participants showed 2.3-fold higher healthcare utilization and 75% longer work disability duration. We developed the Double Invisible Stigma Screen (DIS-Screen) for clinical assessment.
CONCLUSIONS
Young adults with PFO-related stroke experience unique compound stigma with predictable temporal evolution. The 3-9 month window represents critical intervention opportunity. Integration of stigma screening and phase-specific support into PFO-stroke programs may improve psychological and healthcare outcomes.
