Psychosocial and financial burden on parents of children with thalassemia

Thalassemia are forms of inherited autosomal recessive blood disorders, characterized by abnormal production of hemoglobin and associated with low hemoglobin production and excessive destruction of red blood cells. Parents of thalassemic children have concerns regarding treatment for their children. There is a significant psychological impact on parents like emotional burden, hopelessness, and difficulty with social integration. They experience negative thoughts about their life, guilt, increased anxiety and low self-esteem. The immense medical cost makes a huge financial burden on the families of thalassemic children, which is of a major concern for the poor families. An exploratory study was conducted on 60 parents of 1-18 years old thalassemic children visiting thalassemia unit of DMC & Hospital, Ludhiana for treatment. An interview schedule was used to collect data. Results revealed that 35.0% of children were between age group 1-6 years. More than half of the children i.e. 57.7% were males, 58.34% of the parents had mild psychosocial burden, and Majority i.e., 70.00% of parents of thalassemic children feel some difficulties meeting the expenditure on their child’s treatment.