Exploring Public Attitudes and Barriers toward Thalassemia Screening Strategies: A Systematic Review of Qualitative Studies

Abstract

Background: Over the last decade, several countries have sought to mitigate the rise in thalassaemia through preventive screening policies; however, incidence remains high. While existing studies, predominantly quantitative, have examined thalassaemia screening, limited attention has been given to synthesizing qualitative evidence on public attitudes and barriers. Consequently, a comprehensive qualitative synthesis is needed to inform contextually relevant, effective, and equitable screening strategies. Purpose: This review systematically explores public attitudes and barriers toward thalassemia screening strategies (TSS). Methods: A literature search was conducted according to PRISMA guidelines, using four electronic databases−Scopus, PubMed, ProQuest, and ScienceDirect− using specific keywords. The study population included the general public or parents of children with thalassaemia or sickle cell disease, and studies that investigated attitudes or barriers toward thalassaemia screening. A thorough screening of abstracts and full texts was conducted based on predetermined criteria. Overall, 11 of 472 studies were selected for qualitative analysis. The quality of abstracts and full papers was reviewed using the CASP tool, and thematic analysis was conducted line by line with assistance from OpenCode 4.03 software. Results: The findings were mapped according to attitudes and barriers toward TSS. Five main themes emerged from the thematic content analysis: (1) negative attitudes influenced by cultural and personal factors; (2) inadequate family support and decision-making; (3) limited knowledge of hereditary and genetic conditions; (4) low self and parental awareness of thalassaemia; and (5) poor communication with healthcare professionals and barriers to screening accessibility. Conclusion: Thalassaemia screening barriers are a complex socio-cultural and behavioural issue, especially at crucial life stages such as premarital life. Education on thalassaemia and genetic inheritance should be incorporated into youth programmes prior to marriage. Family-centred therapies, training in nursing and health communication, and proactive counselling to encourage regular screening and integrate thalassaemia screening into primary care are crucial for the future.