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"Don't let it hold you back" : men, masculinities, and severe hemophilia Kalmar, Laszlo


Hemophilia is a congenital bleeding disorder that predominantly affects men. Prophylactic intravenous replacement of missing clotting factor, known as prophylaxis, is the most effective treatment method to prevent all internal bleeds caused by hemophilia. Despite availability of prophylaxis, it is not well understood why adult men with severe hemophilia still experience bleeding episodes resulting in irreversible joint damage and disability, particularly in adolescence and young adulthood. The purpose of this qualitative study was to explore men’s experiences of hemophilia across age groups and to explore the connections to masculinity in relation to men’s hemophilia management decisions. Adult men with severe and moderately severe hemophilia A (less than 2% factor levels) participated in three age stratified focus groups: 19 to 24 years old (n=3), 25 to 39 years old (n=4), and 40 years and older (n=4). Qualitative descriptive and constructivist grounded theory methods were used to analyze the data. Findings suggest that pain, and not earlier symptoms of a bleed, is the primary sign that prompts men to treat or seek medical help. Older men were most insightful about hemophilia and experienced the most physical and work limitations, particularly those who acquired viral infections through factor use. Many men reported experiencing a high number of injuries in adolescence, particularly in high school, a critical time period in the development of a man’s identity. Findings suggest that the process of learning to manage hemophilia extends into young adulthood and masculinities impact men’s experiences of severe hemophilia and hemophilia management decisions. Limitations imposed on men by hemophilia prompted them to rebel or protest against it by engaging in risky physical activities or delaying treatment regardless of perceptions of long-term health consequences. Men with hemophilia may benefit from education about early signs of bleeds and improved support in transitioning from adolescence into adulthood. Some masculine ideals can be mobilized to optimize hemophilia management practices that could enable men to surmount limitations and achieve personal goals across their lifespan.

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Attribution-NonCommercial-NoDerivs 2.5 Canada