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

Study of the relationship between disease and the sense of emotion has always been an interesting area of research. 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.

Thalassemia is a chronic disorder. It is a life-threatening and life-limiting condition that affects the patient clinically and psychologically by its burdensome treatment process: regular blood transfusions, iron chelation, frequent hospitalization and medical follow-up [5]. Globally, the prevalence of thalassemia ranges between 2 and 25% [6]. For every 100,000 live births, approximately 4.4 children are affected by thalassemia throughout the world [7]. Disease burden also increases because of repeated visits to the hospital, repeated laboratory tests and frequent monitoring of symptoms in detecting complications [8]. The paucity of healthcare policies, inadequate treatment support and lack of regular screening contribute to an increase in vulnerability to the disease. India likely to have a higher burden as there are no health policies or preventive checks like in other countries (Cyprus, Iran, Pakistan, Palestine territories) [9, 10]. Every year, 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].

Majority of thalassemia patients suffer from depressive symptoms and mental disorders [12‐14]. Children, teenagers, and families that have patients with thalassemia are more susceptible to facing emotional and behavioral problems. The burden of thalassemia challenges the entire family at physical, cognitive, and emotional levels and disrupts their life as a whole [15]. The recurring and complex treatment procedure often places undue psychological and financial burden on the individual and the family.

Researchers have documented the status of well-being, health-related quality of life and burden in families that have children with thalassemia. There is lack of evidence in regard to factors contributing to their quality of life. For improving the quality of life of thalassemia patients, it is imperative to understand the factors that contribute to it.

In this research, we aim to assess the factors influencing the health-related quality of life and also hypothesise whether the parent’s psychological well-being has an impact on children’s quality of life. It could possibly pave the way to understand the area that needs to be focused upon for improving the quality of life among thalassemia patients.

1. To assess the factors influencing the health-related quality of life.

2. To hypothesise whether the parent’s psychological well-being, sociodemographic characteristics and transfusion interval have an impact on children’s quality of life.

On 125 thalassemia-affected children, 68 were boys and 57 were girls. All the children are suffered from transfusion-dependent thalassemia major. Out of the study population, 50% of the children needed at least once a month blood transfusion; 47% needed transfusion twice a month and 3% required more than twice a month. Table 1 shows the demographic characteristics of the study population. The mean age of the children and parents were 6 years and 26 years, respectively. Average HRQoL was 16.28 with a standard deviation of 3.432. Out of this, 45% of them had an above average score (Fig. 1). The mean psychological well-being score for the parent is 83.99 with a standard deviation of 11.41 (Fig. 2). Two parents had a high well-being score of 114 and 116, which are outliers in the study. Independent sample t-test showed no significant difference in psychological well-being score among mothers and fathers (t (125) = − 0.646, p = 0.519). The well-being score of the parents remains the same irrespective of their gender difference. Similarly, no difference in scores of HRQoL among male and female children (t (123) = − 0.776, p = 0.969). A positive correlation was found to exist between parents’ psychological well-being and children’s HRQoL (r = 0.329, n = 125, p < 0.001).

Multiple regression analysis was used to ascertain the factors influencing the HRQoL of thalassemia-affected children. Six predictors accounted for 37% of the variance (R² = .37, F (11,113) =4.023, p < .01); out of which three predictors significantly provided information on children’s HRQoL (Table 2).

In the current study, we have found certain factors that have an influence on the HRQoL thalassemia-affected children. Among them, a major factor focused in this study was the parents’ psychological well-being, which was proved to be significantly associated with children’s HRQoL. Certain factors like children’s and parent’s education status, and family’s monthly income were found to have a significant influence on children’s HRQoL.

Education is a key indicator of income, family growth, sustenance, and well-being. Educated parents bring a warm and pleasing social climate at home comparing to non-educated parents [20]. Children with educated parents are more inclined to have educational support, moral advice, economic background, nutritional support, assisted in taking right decisions, and help to face a problem with a positive attitude. Education plays a role in psychological, emotional, social well-being than the other aspects of well-being [21]. Health outcomes are also influenced by education [22]. Education makes a person have a job; income; fulfillment of needs; better well-being; better health. Likewise, family income also has a major impact on children’s life [23, 24]. Our results validate the fact that education and income have a direct influence on the children’s quality of life [25].

As child ages, his or her maturity level and self-satisfaction also increase. However, in this study, it was found that children’s age plays no role in predicting their HRQoL. The frequency of transfusion is dependent on the severity of the disease condition. But, our study results suggested that transfusion interval doesn’t influence the children’s quality of life.

Through this study, we found that factors like family income, education of parents and children may have a positive influence on the HRQOL of children with thalassemia. Our study also suggests children’s HRQoL has a positive correlation with the parent’s psychological well-being. Parent’s well-being (economic, social and psychological) has even a greater influence on a disabled child’s health [26]. Children’s quality of life is connected with parent’s well-being, as the parent remain the main pillar of support to children grow in all aspects [24, 27, 28]. Family well-being is definitely a foundation for children’s quality of life. Other influencing factors need to be explored and targeted for improving the quality of life of thalassemia patients. As this is an observational study, factors associated with HRQoL are conjectural and should be viewed in that perspective. More studies to be conducted for validation of our results.

Family well-being is the foundation for the quality of life of children It was found that factors such as family income and parent’s and children’s education have a direct association with HRQoL of children with thalassemia. However, more studies need to be done in order to ascertain the factors contributing to HRQoL of children affected with thalassemia to improve the quality of life of thalassemia patients.