Masculinity Challenges for Men With Severe Hemophilia.

Area of Science:

• Medical Sociology
• Qualitative Health Research
• Men's Health

Background:

• Hemophilia is a congenital bleeding disorder primarily affecting men.
• Severe hemophilia can lead to stigma due to societal expectations of masculinity.
• Men may struggle to reconcile their identity with functional impairments caused by the disorder.

Purpose of the Study:

• To qualitatively analyze how men with severe hemophilia manage daily life and identity.
• To explore the role of the body in identity negotiations for men with hemophilia.
• To understand the impact of hemophilia on men's roles, particularly as fathers.

Main Methods:

• Qualitative analysis of interviews with nine Danish men aged 40-54 with severe hemophilia.
• Focus on daily management, identity construction, and bodily experiences.
• Analysis of strategies used to neutralize stigma and manage the disorder.

Main Results:

• Men with severe hemophilia employ strategies to distance themselves from the disorder and assert expertise.
• Fatherhood roles are a significant source of frustration due to limitations imposed by hemophilia.
• Participants expressed frustration with the lack of guidance from the healthcare sector.

Conclusions:

• Men with severe hemophilia actively negotiate their identity and masculinity in response to stigma.
• There is a need for improved health sector advice and peer support networks for men with hemophilia.
• Addressing the psychosocial impact of hemophilia is crucial for improving quality of life.