Investigating the Awareness and Educational Requirements of Adolescents with Thalassemia and Active Members of the Afflicted Families in Bandar Abbas, Iran

Thalassemia can impose adverse effects on the individual, family and community. It is therefore important to specify the needs of children with thalassemia and their parents. This study intended to assess the knowledge and educational needs of adolescents suffering from thalassemia major and active members of the family in Bandar Abbas.
This cross-sectional descriptive-analytic study was conducted in 2014 in Bandar Abbas on 70 adolescents with thalassemia major and active members of the family. The Data were gathered by interview and using a questionnaire. The research instrument used in this study was demographic information questionnaire and need assessment self-made questionnaire for needs assessment. The need assessment self-made questionnaire was two parts. The first part consisted of 22 questions in three areas: the recognition of the nature of the disease (16 questions), nutrition (3 questions) and prevention (3 questions). And the second part contains 24 terms that specified the educational needs of the individual. The collected data was analyzed using SPSS software version 16.
Regarding the measurement of awareness, the highest score in the area of prevention and the lowest score belonged to the nature of the disease. The "I do not know" response to the 4 questions on the nature of the disease was 50% percent among the adolescents and more than 75% among the active members. Also, in relation to the need assessment, the highest score in both groups was related to "need more information about modern treatment methods".
According to the results, adolescents with thalassemia major and active members of the family need to be trained in all areas studied, especially the nature of the disease, treatment and complications of the disease.