Investigating Challenges Facing Self-Management Empowerment Education in Adolescents and Youths with Major Thalassemia

Background: Thalassemia is considered an important public health problem worldwide, especially in developing and poor countries. Although several advanced techniques have been developed for prevention of thalassemia in the recent years, many adolescents and youths are still living with this disease. Independence from parents, decisions about high-risk behaviors, uncovering the identity, and adapting to mental and physical effects of the disease occur together in adolescents.. Objectives: This study was conducted to explore challenges of self-management empowerment in adolescents and youths with major thalassemia.. Materials and Methods: This was a descriptive-exploratory study. The study population consisted of adolescents and youths with major thalassemia who had medical records in the Bushehr Thalassemia Center, affiliated with Bushehr University of Medical Sciences. The study samples were purposively selected. Demographic information questionnaire and empowerment questionnaire were used to collect data from the semistructured interview. We analyzed qualitative data by content analysis method and quantitative data by descriptive (mean, standard deviation) and analytical (Studentʹs t-test, ANOVA and Pearson’s correlation coefficient) statistical methods, using the statistical software SPSS 18.. Results: In qualitative part of the study, data from semistructured in-depth interviews with 15 participants were coded and summarized in five themes including: 1) awareness of personal changes; 2) need for adaptation; 3) maintaining independence and self-management; 4) uncovering the identity and role playing; and 5) sense of control and satisfaction. Results of the quantitative part showed that the overall score of participants on empowerment was 92.46 of 149 scores, which showed a moderate situation in the empowerment of these individuals. In addition, the empowerment score showed no statistically significant correlation with demographic characteristics.. Conclusions: Given the importance of self-management in chronic diseases and age characteristics of adolescents and youths, it seems necessary to make appropriate interventions and modify self-management patterns with interventions appropriate to their needs in obtained dimensions.. Keywords: Thalassemia; Adolescents; Youth; Education; Empowerment; Self-management.