Honors College Thesis
 

The Intersection of Race on the Psychosocial Experiences of Adults with Fanconi Anemia

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https://ir.library.oregonstate.edu/concern/honors_college_theses/z890s352s

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  • Fanconi Anemia (FA) is a genetic rare disease characterized by bone marrow failure and increased cancer predisposition. Although the adult FA population is growing due to medical advancements in bone marrow transplants, there has been little research on the psychosocial aspects of their lives as they enter adulthood. Additionally, the biomedical research that has been conducted on FA populations has primarily focused on White FA patients. This study was a two-part, mixed methods, participatory action research project that involved an advisory board made up of four to five individuals with FA. The second part of the study was qualitative interviews that focused on the psychosocial experiences of living with FA. For the purposes of this honors thesis, the experiences of participants of color will be centered as assessed in the qualitative study. Five overarching themes were found from the interviews using conventional qualitative analysis, such as “FA is All Encompassing” and Connection is Bittersweet. Some codes within these themes were more specific to the experience of adults of color with FA compared to White adults with FA, including Provider Fit and Discrimination. Our results show that the discrimination adults of color with FA experience because of their FA is amplified compared to the experiences of White adults of color with FA due to greater societal discrimination. There is room for improvement regarding the mental healthcare adults of color with FA receive. To improve these problems, focus should be placed on educating providers on the FA experience and expanding the FA community outside of Western countries.
  • Key Words: Fanconi Anemia, rare disease, race, psychosocial experiences, participatory research
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