Social Worker Perceptions and Observations Regarding Men's Management of Hemophilia and Use of Community-Based Support.

The study reported in this article was conducted in response to Utah service provider concerns that men with hemophilia may be disengaged from their local community-based support network. This study explored the challenges, adaptations, and needs of men with hemophilia from the perspective of Hemophilia Treatment Center (HTC) social workers. Utah's two active HTC social workers participated in face-to-face interviews. Fourteen HTC social workers from surrounding regions completed written interviews. The researcher used a qualitative, grounded theory approach to analyze the data. Resilience theory provided a lens for interpreting the results. Findings from these professionals indicate that men with hemophilia appear to be ambivalent toward services that are available to them for reasons that include work and insurance status, prior personal history with the bleeding disorders community, strength of relationship with local service providers, degree of customization of HTC services, and the desire to maintain personal independence. Understanding this dynamic may be helpful in developing services that are more specifically tailored to the needs of men with hemophilia, in addition to potentially providing stronger community-based support to men with other genetic disorders.