Assessing the role of family well-being on the quality of life of Indian children with thalassemia

Abstract

Background The 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. Method A 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. Results We 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. Conclusion Family 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.

Factors Related to Quality of Life Among Children With Thalassemia Major: A Literature Review

“…A child with an educated mother had a better quality of life than a child with an uneducated mother. It is supported by research conducted by Thiyagarajan et al (2019), which found that parents' education was correlated with the quality of life of children with thalassemia.…”

Effect of hydroxyurea on quality of life with a moderating role of healthcare professionals’ performance: A view from the beta-thalassemia patients.

“…Patients addressed that the disease therapy and its complications have affected their daily routine and sleeping patterns. Although Hydroxyurea has improved certain factors associated with the physical health of TDT patients still, it is debatable 17 . These complications hurt the physical and psychological health of Thalassemia children.…”

Empowering Thalassemia Patients and Family to Increase Public Knowledge on Thalassemia

“…The knowledge about this disease, including the basic ones, the inheritance, the possibility, and the prevention, is a first key point to stop the increase of thalassemia case (Cao & Kan, 2013). This condition imposes not only physical burden but also an emotional and economic burden on the patient, their family, and the country (Colah et al, 2017;Riewpaiboon et al, 2010;Thiyagarajan et al, 2019). It is important to empower thalassemia patients and their families that have experience with this disease to convince the audience.…”