A study of quality of life among parents having children with Thalassemia

Abstract

Background: The present study investigated, ‘Quality of life among parents having children with Thalassemia. Thalassemia refers to a group of genetic disorders, characterized by insufficient production of hemoglobin. Children with thalassemia for survival have to regularly attend hospital for blood transfusion, which creates a lot of burden for the families, and hamper their quality of life. Methods: 40 participants (caregivers), 20 having children with thalassemia, and 20 as control group, from hospitals in Delhi were enrolled and they were given WHOQOL-BREF (Murphy et al., 2000), in a semi structured interview form. Results: indicated poor quality of life and health in, parents of children with thalassemia group, as compared to the control group. Further, due to the complex treatment and regular visits to hospitals, the psychological aspects in the caregivers of thalassemia group, was most affected. Conclusion: Poor quality of life in caregivers of children with thalassemia, indicates the importance of a lifelong psychosocial support for prevention of mental health issues, including promotion of a clear understanding of the disease.