Psychosocial and Economic Study of Families with β Thalassemic Children in Northern Jordan

Abstract

Some aspects of β thalassemia major in Jordan were defined. The study included interviews with 77 out of 81 families with multi-transfused β thalassemia children. The interviewed families had a total of 107 affected children. In this study, we assessed the knowledge and attitudes of the affected families toward family planning, the complications of the disease, and the screening of the heterozygote condition before marriage. The majority of these families were properly informed about the disease at the time of the interview but 75 percent of them had not heard about it before having their first affected child. The immense national cost of medical care and the tremendous psychosocial burdens on the patients and their families indicate the urgent need for clinical promotion through patient educational programs and counseling for these families, and justify the establishment of systematic programs for the prevention of β thalassemia in Jordan.