ASSESSMENT OF QUALITY OF LIFE AMONG PARENTS OF CHILDREN WITH THALASSEMIA

Background :Thalassemia is an serious public health issue in India. Thalassemia is an autosomal recessive disorder characterized by partial or no production of alpha or beta globin chains which form part of the structure of the hemoglobin in the red blood cells. The life expectancy and survival of the patient have been increased due to the introduction of treatments include frequent blood transfusions and iron chelating therapies. However the child may ended up with some complications. Parents of these children have many problems in various aspects of physical, psychological, social, economical and communications. Aim : The study was undertaken to assess the quality of life among parents of children with thalassemia. Methods : A cross-sectional study was conducted among 43 parents of thalassemic children Using convenient techniques the samples were selected. Data was collected using standardized tool (PedsQL? ) through personal interview. The data was analyzed using descriptive and inferential statistics. Results :The study revealed that overall mean and standard deviation score of quality of life of parents of children with thalassemia is 67.76?17.28. Majority of the parents of children with thalassemia had neither poor nor good quality of life 25 (58.1%), 14 (32.6%) had poor quality of life and less parents of children with thalassemia had good quality of life 4 (9.3%). Number of children had shown statistically significant association between level of quality of life among parents of children with thalassemiawith chi-square value of (2=13.9, d. f=6) at p<0.05 level. Conclusion :The worries of the parents about their child?s future affects the family in leading a normal life. So it is important to improve the physical, emotional and social wellbeing of parents by providing proper counselling and relaxation therapies.