Maternal knowledge and attitudinal insights on childhood thalassaemia – a hospital based study

Abstract

Background: Thalassaemia major is a lifelong condition and parents’ beliefs and knowledge influence everyday management and prevention. To manage this condition effectively, addressing the knowledge gaps of the parents and their perception towards thalassaemia is very crucial. Objective: to assess the extent of parental knowledge and their perceptions regarding thalassemia. Materials and Method: In a cross‑sectional survey of 52 mothers of thalassaemic children admitted to paediatric department of a tertiary medical college hospital, a validated questionnaire was used to document knowledge of inheritance, screening, treatment, and prevention as well social and ethical issues; Results: Knowledge gaps were considerable,3.8% had known that thalassaemia exists prior to having their first affected child; 53.8% did not know that the disease is hereditary; another 86.5% did not know that positive family history increases risk; and only 36.5% knew about consanguinity relevance. Despite 84.6% identifying transfusion as a mode of treatment, only 3.8% were aware that bone marrow transplantation is one of the treatment modalities; 86.5% accepted the necessity for regular transfers (and) more than half believed this would be necessary for life. Preventive literacy was poor—80.8% did not know about prenatal diagnosis and only 23.1% had heard of premarital screening, while 73.1% were not able to name any preventable method. Attitude wise, 65.4% were against carrier inter-marriage; 82.7% were in favor of premarital screening for the general population; 48.1% agreed with termination when a fetus is thalassaemia major and 76.9% supported the necessity for legislation of premarital screening to prevent affected births. Financial and emotional distress were reported by many (80.8% and 67.3%, respectively), and over half (55.8%) felt that their child’s education was involved in some way or other with the condition. Conclusion: These findings underlie the importance for culturally appropriate counselling, available screening pathways and practical support in improving care giving and minimizing avoidable complications.

J Med Coll Women Hosp.2026; 22(2): 50-58