عنوان مقاله [English]
نویسندگان [English]چکیده [English]
Background and Purpose:
Thalassemia is a hereditary hematological disease divided into α and ß groups ,also divided into major and minor based on the genetic defect leading to defects in producing glubin. major Thalassemics need frequent transfusions which lead to iron sedimentations in vital organs such as liver, heart and endocrine system. this disease causese expensive cost for the victim and the society in treatment and lack of economic outcome leading to emotional, psychological and financial problems. its hereditary nature, disease manifestation at the first year of life, physical deformity and continual vieed for treatment influence physical development ,mentality and convenience of the family. As treatments have improved and longevity has increased, self-care and independence are of importance so that the quality of life style enhances.
Methods and Materials :
The present study is an analytical descriptive research designed to study the self-care problems of major Thalassemics in mashhad and Sabzevar/Iran. The sample included 265 patients. content validity was adopted to validate the questionnaire and test-retest for its reliability.Data analysis was done in spss using regression and chi-square.
the findings indicated that 30/2% of the subjects had a first-degree kinsman with Thalassemia.Also,77% had access to transfusion pumps,61.1% of whom did not know how to use it properly .the results also indicated that 60.8% suffered from psychological problems and almost all(97.7%)did not have counseling. but the rate of ignorance as to the nature of the disease ,frequent transfusion, complications and nutrition were 58.8%,66.8%,52.1%and 32.8%respectively.also,60.8%had received no informative brochures. .
As families of ten have multip thalassemics, genetic counseling is important. Also، psychological counseling can be helpful in all their families. This training can be specially helpful as the awareness of the disease and required care giving are high among the patients.