Knowledge of thalassemia major and the complications among parents of thalassemia children

Abstract

Thalassemia is the commonest genetic disease in Sri Lanka. Sri Lanka has been identified as a country which has an intermediate prevalence of thalassemia. It is a country with 22 million people, nearly 2000 patients have been identified in Sri Lanka at 2022, two-thirds of whom have beta thalassemia major, a third have Hb /beta thalassemia. Half-a-million thalassemia carriers. There was a review of 82 amniocenteses performed from 2006 to 2016, in the largest prenatal diagnoses study for thalassemia carried out in Sri Lanka. Researching on knowledge of thalassemia major and its complications among parents of thalassemia children helps to identify the knowledge about thalassemia among the parents and reduce the complication due to poor knowledge. To describe knowledge among parents on Thalassemia major and its complications of blood transfusion and iron overload in Thalassemia children who visit to paediatric ward in Teaching Hospital Batticaloa. After getting ethical clearance from the Ethical Review Committee, permission obtained from the Director of Teaching Hospital Batticaloa and the Consultants in charge of the paediatric ward setting included in the study through written letters to collect data from parents of Thalassemia Major patients. Parents of Thalassemia patients who visit along with children at the Paediatric ward approached by the researchers and invited verbally, after checking their eligibility to take part in their studies, get the verbal consent from them, those who agreed to participate interviewed and the data filled by the investigators. Before the interview, the aim of the study, confidentiality and anonymity of the presented data clearly explained. In our study 58 (99.6%) of the parents were participated in the total parents. Within the participants, 16 (27.6%) of the parents were educated up to G.C.E (A/L) and 32(55.2%) of the parents were educated up to secondary level. 34(58.6%) participants were in the background of low income and 2(3.4%) were in the background of high income. This study reveals, 30(51.7%) have moderate knowledge about thalassemia, 22(37.9%) have moderate knowledge about the complication about blood transfusion and 28(48.3%) have moderate knowledge about the complication of iron overload at Teaching hospital Batticaloa. Results of this study expressed that majority of the parents’ knowledge about thalassemia is moderate knowledge in overall. Most of the parents were low income and educated up to secondary level who have inadequate knowledge about the thalassemia and the complication of blood transfusion Majority of the parents have moderate knowledge about iron overload.