Experiences of Families With Children Diagnosed With Beta-Thalassemia: A Meta-Synthesis of Qualitative Studies
Özkan, İ., Kılıç, K. M., & Taylan, S. Journal of Pediatric Nursing, 89, 301-316. (2026)
Background and purpose
This meta-synthesis aimed to integrate qualitative studies examining the emotional, social, and practical experiences of families caring for children diagnosed with thalassemia.
Methods
Following Thomas and Harden’s thematic synthesis approach, a systematic literature search was conducted in Web of Science, MEDLINE, Complementary Index, CINAHL, Academic Search Ultimate, and Scopus up to June 2025. Studies were included if they employed qualitative designs, explored family or parent experiences, were available in full text, and were published in English or Turkish. Methodological quality was assessed using the JBI Qualitative Critical Appraisal Checklist.
Results
Fifteen studies were analyzed, revealing 5 analytical themes (1) acceptance of diagnosis and initial emotional reactions; (2) daily care burden and parental burnout; (3) social support and family relationships; (4) economic hardships; and (5) family expectations regarding awareness, prevention, and health policy. Families experienced intense shock, guilt, and uncertainty following diagnosis. Mothers were most affected by caregiving burden, and social isolation and stigma reduced overall psychological resilience. Economic challenges, including treatment costs, further strained families. Participants highlighted the need for public awareness, carrier testing, and supportive health policies.
Conclusions
Families caring for children with thalassemia face significant emotional, social, and financial burdens. Findings underscore the importance of culturally sensitive, family-centered healthcare, preventive programs, community awareness, and accessible psychosocial and financial resources.
Practice implications
Healthcare professionals should implement multi-level interventions-emotional, educational, financial, and policy support-to enhance coping capacity and well-being for both children with thalassemia and their families.
