Knowledge, attitude, practices among parents of β thalassemia children regarding thalassemia

Abstract

Introduction: Thalassemia is a hereditary hemglobinopathy and a chronic disorder requiring lifelong blood transfusions, investigations and medications; creating an emotional and financial burden on the family. Materials and Methods: After taking consent from parents/caregivers of β thalassemic children, a pre designed structured questionnaire was provided to one parent/caregiver per β thalassemic children. Results: 48.4% (126/260) were aware that thalassemia is a genetic disorder, 47.3% (123/260) know that thalassemia traits can be detected antenatally, 66. 1% (172/260) have awareness about need of blood transfusions. 74.6% (194/260) were worried about children’s education and also they are getting emotional distress about child future. 94.2% were taking their child to hospitals for regular blood transfusion, 90.3% were taking regular medications. Conclusion: Age, Education, Socioeconomic status were significant predictors in relation to practices of caregivers. Government agencies should take initiative activities like awareness campaigns, premarital counselling, prenatal diagnosis, and regular counselling sessions in their vernacular language.