Assessment of Awareness Among Parents of Children with Thalassemia Major in Bangladesh: A Hospital Based Study

Abstract

<i>Introduction</i>: Thalassemia is the world’s most common hereditary disease and is a paradigm of monogenic genetic disease. Many children in Bangladesh are carrier of thalassemia which is a major threat for the upcoming generation. The aim of this study was to determine the awareness among parents of children with thalassemia major. <i>Methodology & Materials</i>: This descriptive cross-sectional study was conducted in the Department of Pediatrics, Chittagong Medical College Hospital, Bangladesh during July 2010 to December 2010. A total of 131 parents of diagnosed cases of thalassemia major children attended for blood transfusion in the Pediatric Ward of Chittagong Medical College Hospital and Thalassemia Centre, Jamal Khan, Chittagong, Bangladesh were enrolled in this study. The collected data were analyzed by the SPSS 23.0 windows version and the association between the categorical variables was assessed through Chi-Squared test where p<0.05 considered as significant. <i>Result</i>: A total of 131 parents of children with thalassemia major were included in this study. The socio-demographic characteristics of the majority parents were low. The educational qualification of the majority father was up to secondary level (29.77%) and the maximum mother’s educational qualification was up to primary level (31.30%). Most of the parents fully immunized their children according to EPI schedule (73.28%) but majority of them not received Hepatitis B vaccine (74.05%). A large number of parents had no knowledge about consanguinity of marriage (68.70%), 92 (70.23%) parents had no knowledge about mode of inheritance of the disease, 100 (76.34%) parents had no knowledge about premarital screening, 74.81% had no other affected children in their family, 42 (32.06%) parents collected blood from professional blood donors, 47 (35.88%) parents screened the blood of their children regularly and had knowledge about screening of blood before transfusion for HBV, HCV, HIV, malaria and syphilis were being 19 (14.50%), 12 (9.16%), 7 (5.34%), 6 (4.58%) and 4 (3.05%). Parents’ knowledge regarding iron overload, iron chelation, oral iron chelation, parenteral iron chelation and use of infusion pump also were being 48 (36.64%), 42 (32.06%), 27 (20.61%), 09 (6.87%), 06 (4.58%) and 29 (22.14%). All the above factors were statistically significant (p<0.05). <i>Conclusion</i>: The awareness and knowledge among parents of children with thalassemia major were insufficient. They have inadequate knowledge regarding the disease, safe blood transfusion and treatments of associated complications. Awareness programs should be taken to improve knowledge among the parents of the children with thalassemia.