AbstractIntroduction: Thalassemia is a heterogeneous group of genetic disorders of haemoglobin (Hb) characterized by decline or absent production of globins protein chains. The disorder results in excessive destruction of red blood cells, which leads to anaemia. Nearly 3.9% of Indian population is carrier of thalassemia and the prevalence of thalassemia is more common in south Asian countries. The knowledge and home care management regarding thalassemia is crucial for caregivers and parents. Methodology: the present quantitative study was conducted among 120 parents of thalassemic children at P.B.M. Paediatric Hospital, Bikaner (Rajasthan). The samples were selected by purposive sampling technique. Data collection was done with the help of structured knowledge questionnaire. The study was conducted from August 2017 to December 2017. Results: most of participants (59.16%) were male. Mainly subjects (40%) were belonging to 30–35 years of age group. The mean knowledge score and standard deviation were 24.87 and 6.11 respectively. Only 30 (25%) parents had good knowledge regarding thalassemia and its home care management. The study communicated that poor knowledge and average knowledge regarding thalassemia were 31.66% and 25.83% respectively. There were positive correlations between income of the parents, religion of parents with knowledge. Discussion: thalassemia is passed on through parents who carry the thalassemia gene in their cells. The parents had poor knowledge regarding thalassemia and its home care management. There is a need of sound educational programme for the parents and community to enhance their knowledge and home care management regarding thalassemia. A better home based care of thalassemic children can reduce the disease burden and treatment cost of thalassemia.
Keywords: Thalassemia; Knowledge; Home care management; Parents