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Dataset Information

Healthcare Experiences of African American Women with the Fragile X Premutation.


ABSTRACT: This study aims to understand the healthcare experiences of African American women with a fragile X premutation (PM). PM carriers are at risk for fragile X-associated conditions, including primary ovarian insufficiency (FXPOI) and neuropsychiatric disorders (FXAND). There is no racial/ethnic association with carrying a PM, but African American women historically experience barriers receiving quality healthcare in the USA. Obstacles to care may increase mental health conditions like anxiety and depression. Eight African American women with a PM were interviewed to explore disparities in receiving healthcare and to learn about psychosocial experiences during and after their diagnoses. Interviews were transcribed verbatim and independently coded by two researchers. A deductive-inductive appro

SUBMITTER: King AP 

PROVIDER: S-EPMC11086630 | biostudies-literature | 2024 Dec

REPOSITORIES: biostudies-literature