Knowledge, practice and experiences of parents with a thalassemic child

Abstract

Background: Thalassaemia is a chronic disorder requiring lifelong transfusions and medications causing emotional and financial burden to the family. This study was done to assess the knowledge and awareness of parents having a thalassemic child and to ameliorate their experiences in the upbringing of their child.Methods:A cross sectional, descriptive study was conducted in Pediatric Ward of a Tertiary care Hospital in Navi Mumbai from May-August 2016 in which parents of 40 beta Thalassemia major children between age group of 6 months to 15 years were enrolled. Parents were interviewed through a questionnaire to assess their knowledge, awareness, the practices they follow in regard to the transfusion, treatment, vaccination and prevention of thalassemia. The study also focuses on the emotional suffering of the parents.Results: 47.5% of parents were aware of thalassemia being a genetic disorder.62.5% were aware of regular blood transfusion. 23 parents were aware of the regular medications taken by their children. 42.5% parents had adequate knowledge of the optional vaccines to be taken. 90% parents followed a good practice of getting their child for regular blood transfusion and 92.5% gave them regular medicines.31 parents would periodically get their child investigated but 65% of parents lacked in giving optional vaccines to the child.60% agreed to undergo MTP while only 45% knew about the antenatal detection.Conclusions:Majority of parents followed good practice and had a positive attitude, though the knowledge and awareness about the disease was inadequate.