Effect of educational support for children with thalassemia on enhancement of their quality of life

ABSTRACT

Thalassemia is a genetic blood disorder which can be fatal if proper treatment is not received. It is 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. this study aims at assessing knowledge of children with major thalassemia about their illness and evaluate the effect of educational support on their quality of life, the study sample consisted of 50 thalassemic children. An experimental design was utilized in this study. the study was conducted at out patient clinics, Abo EL-Reech, pediatric Hospital, and Cairo University. Tools of data collection include, Interviewing questionnaire It was designed by the researchers after reviewing of related literature. It was constructed to elicit personal data about the afflicted child with thalassemia and Quality Of life Instrument [Ferrell 1995]. Results, the study results revealed that, age of 64% of studied children under 12 year, while 24% more than 15 year. Majority of studied children 80%had relative within their families affected with thalassemia. Meanwhile 68% of children had kinship relation between their parents. there is no statistical significant differences regarding the children physical well being as a domain within quality of life as ascribed to test [pre and post tests], Meanwhile there are statistical significant differences in their psychological well being, social concerns and spiritual well being and the entire domains of quality of life for these children as ascribed to test pre and post tests Recommendation, Thalassemia-prevention program must be developed, with the use of better education programs that provide acceptable care, including transfusion of safe blood and supportive therapy including chelating, Premarital counseling to reduce the frequency of births with major thalassemia should be encouraged