Abstract
BackgroundThe association between chronic diseases and psychological problems is well established. As thalassemia is chronic blood disorder with burdensome treatment procedures, patients are likely to have psychological health problems. Many studies reported evidences regarding the quality of life. But, factors influencing the health-related quality of life with focus on psychological well-being were minimally studied. We aimed to find the factors contributing to the health-related quality of life among thalassemia affected children and hypothesising whether the parent’s psychological well-being, sociodemographic characteristics and transfusion interval have an impact on children’s quality of life.MethodA cross-sectional analytical study conducted on 125 thalassemia patients and 125 parents (either father or mother) referred to the clinic of Thalassemia treatment center. KIDSCREEN-10 and Ryff Psychological well-being scale is used for measuring the health-related quality of life and well-being of children and parent respectively.ResultsWe have found the three factors such as family income, children education, and, parent education significantly contributed to the children’s health-related quality of life among thalassemia affected children. The average score of Health-related quality of life among children is 16.28 with a standard deviation of 3.432 and the mean psychological well-being score for the parent is 83.99 with a standard deviation of 11.41. A positive correlation exists between parent psychological well-being and children’s health-related quality of life.ConclusionFamily well-being is the foundation for quality of life of the children. It was found that factors such as family income and parents’ and children’s education have a direct association with HRQoL of life of children with thalassemia. However, more studies need to be done in order to ascertain the factors contributing to HRQoL of children with thalassemia to improve the quality of life of thalassemia patients.
Highlights
The association between chronic diseases and psychological problems is well established
It was found that factors such as family income and parents’ and children’s education have a direct association with health-related quality of life (HRQoL) of life of children with thalassemia
More studies need to be done in order to ascertain the factors contributing to HRQoL of children with thalassemia to improve the quality of life of thalassemia patients
Summary
The association between chronic diseases and psychological problems is well established. We aimed to find the factors contributing to the health-related quality of life among thalassemia affected children and hypothesising whether the parent’s psychological well-being, sociodemographic characteristics and transfusion interval have an impact on children’s quality of life. The associations between chronic disease conditions and psychological problems is well established [1, 2]. The topics of psychology and concentration of well-being have grown popular in ambit of public policy [3, 4] This has led to an interest in a less researched aspect of the relationship between emotion and disease, namely, the impact of disease condition and well-being. It is a life-threatening and life-limiting condition that affects the patient clinically. 10,000 children are born with thalassemia, which approximately accounts for 10% of the world’s total incidence of thalassemia and one in eight of thalassemia patients’ lives in India [11]
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