1 Department of Social Sciences and Business, Roskilde University, Roskilde, Denmark.
Am J Mens Health. 2019 Jul-Aug;13(4):1557988319872626. doi: 10.1177/1557988319872626.
Hemophilia is a congenital bleeding disorder that mainly affects men. Men with severe hemophilia experience stigma because they are unable to live up to various ideals of masculinity. This study involves a qualitative analysis of how nine Danish men aged 40-54 years with severe hemophilia manage life as functionally impaired relative to their masculine identity. The analytical focus is on how the men manage on a daily basis, how they construct their identity as a result of the disorder, and the body's importance in these identity negotiations. The source of their biggest defeat is that the disorder often prevents them from living up to social expectations about men as fathers. This results in a variety of management strategies that they apply to neutralize the stigma, allowing them to (a) distance themselves from the disorder in various practical and verbal ways and to (b) assume primary responsibility for managing the disorder, including internalizing being experts on the disorder. The results identify that men with severe hemophilia are frustrated by the lack of advice provided by the health sector. The article proposes initiatives that can be taken to address the lack of knowledge and to create a broader network of peers for men with hemophilia across varying age groups.
血友病是一种先天性出血性疾病，主要影响男性。患有严重血友病的男性会受到污名化，因为他们无法达到各种男性气质的理想标准。本研究采用定性分析方法，探讨了 9 名年龄在 40-54 岁之间的丹麦男性如何应对因严重血友病导致的身体功能障碍，以及他们如何根据自身疾病身份和身体在这些身份协商中的重要性来管理生活。他们最大的挫败感来源于这种疾病常常使他们无法满足社会对男性作为父亲的期望。这导致他们采用了各种管理策略来消除污名化，包括（a）通过各种实际和口头方式将自己与疾病隔离开来，以及（b）承担起管理疾病的主要责任，包括将自己内化成为疾病的专家。研究结果表明，患有严重血友病的男性对卫生部门提供的建议不足感到沮丧。本文提出了一些倡议，可以用来解决知识不足的问题，并为不同年龄段的血友病男性创建一个更广泛的同龄人网络。
