Disease Knowledge and General Self-Efficacy Among Adolescents with Thalassemia Major and Their Parents’ Perspective

Thalassemia major can affect physical, psycho-social and economic life of patients and their parents. The aim of the study was to assess the disease knowledge and general self-efficacy among adolescents with Thalassemia major and their parents’ perspective with a view to develop an informational booklet on thalassemia. In a cross-sectional study 50 adolescents along with 48 parents were recruited from the hematology day care centre of a tertiary care facility. Ethical clearance from institute ethics committee, written informed consent from parent and assent from the adolescent were taken. Consecutive participants those who consented were enrolled in the study. Adolescents between the age group of 10–18 years, and their parents completed the self-developed subject data sheet, knowledge questionnaire and standardized general self-efficacy tools. The mean knowledge scores of the adolescent and their parents related to thalassemia were 13.9 ± 2.9 and 13.7 ± 3.6 respectively, while the perceived GSE scores of the adolescent along with the parents’ perspective were 30.1 ± 6.1 and 29.3 ± 6.5. Positive correlation between the adolescents’ knowledge with GSE (r = 0.464, p = 0.007) was observed. The knowledge of the adolescents and their parents showed significant association with the education (p = 0.001, p = 0.002) residence (p = 0.04 and p = 0.01) and parents’ employment (p = 0.04). The knowledge of adolescents with thalassemia and their parents is limited. There is need to counsel the adolescents and their parents about the disease and its management in order to improve the GSE of these adolescents.