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Masculinity Challenges for Men With Severe Hemophilia.

Kenneth Reinicke1, Ida Stjerne Søgaard1, Sarah Mentzler1

  • 11 Department of Social Sciences and Business, Roskilde University, Roskilde, Denmark.

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Summary

Men with severe hemophilia face stigma, impacting their masculine identity and fatherhood roles. They develop strategies to manage the disorder and its social challenges, seeking better health advice and peer support.

Keywords:
adolescent mendialogue workshophemophiliamasculinitymen’s healthqualitative methods

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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.