Empowerment children with beta thalassemia major

Aim: In this study, it was aimed to identify the problems related to the disease process of children with Beta Thalassemia Major between the ages of 12 and 18, and to be strengthened that training them with individualized care training. Methods: This research is a mixed type study. In the first stage, it is aimed to determine the problems and needs of children with Beta Thalassemia Major in relation to the disease process; phenomenological method was used. In the second stage, the issues that are required by the qualitative method are discussed within the scope of the empowerment model. The quantitative method was used to provide training for these requirements and to examine the effectiveness of the model. The sample of the study consisted of 15 children with Beta Thalassemia Major aged 12-18 years. Data were collected through individual interviews. In the process of collecting data, "The Introductory Information Form", "Semi-Structured Interview Form" and "The Determination of the Needs of Children with Beta Thalassemia Major Questionnaire" were used. Results: The mean age of the participants was 15.46 ± 0.42.In the interview with children, three themes were formed: treatment process, family process and social life. Six children with Beta Thalassemia Major stated that they did not know that the disease was genetically inherited and that they had health problems such as fatigue, headache, weakness a few days before erythrocyte transfusion and that they did not know how to manage this problem. It was determined that 12 of the children did not use iron chelation therapy and not all of them regularly. It was observed that they did not know the side effects of treatment, the exact treatment of the disease and what the future treatments were and did not pay attention to the nutrition principles. It was found that the children felt unhappy, sad, angry, angry and bad because of the side effects of Beta Thalassemia Major treatment process and had anxiety about the future. It was seen that the mothers took the primary responsibility during the care process. In addition, it was found that families exhibited excessive protective attitude towards their children and were economically challenged. It was determined that the children were hiding the disease from their friends and did not give detailed disease information to their teachers. Similarly, the disease was found to affect academic achievement and daily life. While the total score average of the pre-test requirement determination questionnaire of the children was 30.73 ± 2.38, the first post-test total score was 48 ± 3.50 and the second post-test mean score was 47.86 ± 3.52. Conclusion: As a result of the study, it was determined that children have information about disease, treatment process, mother/father relationship and social life. According to these requirements, individualized education was found to be effective in empowering children with post-test averages.