Introduction
Distress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these populations, disease‐specific distress is associated with health outcomes. Haemophilia‐related distress is less understood.
Aim
To identify qualitative features of haemophilia‐related distress among affected adults to ultimately inform the creation of a measurement tool.
Methods
Adults with haemophilia A or B associated with a large haemophilia treatment centre in the south‐eastern U.S. were recruited to participate in this qualitative study. Fifteen participants completed semi‐structured telephone interviews. Interviews lasted 1‐2 hours and explored experiences of distress related to various aspects of haemophilia. Interviews were audio taped, transcribed and coded using NVIVO, software for organizing, managing and analysing qualitative data. Coding was deductive and inductive, and the analysis was thematic.
Results
Haemophilia‐related distress was broadly related to feelings of isolation and vulnerability which incorporated health system factors, physical functioning, caretaker roles and psychological considerations. Specific features associated with haemophilia‐related distress included lack of trust in the knowledge of haemophilia and care provided by staff in community healthcare settings, concerns about the future such as health insurance access and ageing/disability, long‐standing feelings of being different from others and feeling like an outsider, treatment burdens and fear of acute bleeds. Protective factors included supportive relationships with family, friends and haemophilia care teams through which participants received practical and emotional support.
Conclusion
Features of haemophilia‐related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia.
Non-Latino natives often conflate “Latino” with “Mexican,” treating Mexican as a stigmatized group. Latinos often engage in “identity work” to neutralize this stigmatized identity. We link these micro processes of identity work with macro structures of stratification through “intersectional typicality.” We argue that the selection of which positive traits immigrants highlight to avoid stigma is systematic and tied to intersecting dimensions of race and class stratification at the macro level. We argue that this process is context-specific. We use the case of middle-class Dominicans and Mexicans living in Atlanta. Our findings show that both groups perceive that the pervasive image of the typical Latino in Atlanta is that of a working-class Mexican. While both groups perceive this image to be low-status, they diverge in their strategies for countering this presumption. Mexicans emphasize their middle-class status and often try to change the typical image of Latinos. Dominicans emphasize that they are not Mexican and highlight their atypicality. Interview data show that Dominicans are concerned about the Mexican label because of embedded working-class assumptions. We argue that although many respondents successfully avoid negative stereotyping, their identity work actually reaffirms the low-status meaning of the typical Latino category.
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