South Asian Women’s Perceptions of Prenatal Thalassemia Screening

Abstract

Thalassemia is a hereditary blood disorder disproportionately prevalent among South Asian populations, yet limited research has examined how South Asian immigrant women perceive prenatal thalassemia carrier screening. This mixed-methods study investigated how knowledge, attitudes, cultural beliefs, and trust in healthcare systems influence perceptions of prenatal thalassemia carrier screening among first-generation South Asian American women in the Portland Metropolitan Area. Data were collected through a 7-point Likert-scale questionnaire completed by 34 participants and structured interviews with six participants. Quantitative data were analyzed using descriptive statistics and Pearson correlation analyses, while interview responses were examined through thematic analysis. Participants demonstrated generally positive attitudes toward prenatal thalassemia carrier screening (M = 5.22, SD = 0.34), while knowledge, cultural beliefs, trust and access, and willingness to pursue screening showed moderate average scores. Knowledge of thalassemia and genetic testing was positively correlated with willingness to undergo screening (r = .60, p < .001), as were attitudes toward screening (r = .50, p = .002), cultural beliefs (r = .53, p = .001), and trust and access to healthcare (r = .59, p < .001). Qualitative findings identified three recurring themes: cultural considerations in genetic decision-making, knowledge and awareness of screening, and trust in healthcare providers and access to information. The findings support the hypothesis that greater awareness is associated with increased willingness to pursue screening, but also demonstrate that knowledge alone does not eliminate cultural stigma or other barriers. These results suggest that culturally responsive education, improved provider communication, and stronger community-based outreach may be necessary to increase access to prenatal thalassemia screening among South Asian immigrant populations.