Abstract

Background:Beta thalassemia major is one of those diseases in which the natural growth of individuals can be disrupted due to complications of the disease. Despite the recent advances ​​in treating these patients, growth retardation in a significant percentage of them is observed. This study was conducted to determine the growth criteria in thalassemia major patients and compare them with NCHS standards.

Methods:This study is a Cross-sectional study. The study population included all patients with thalassemia major (n=37) is in the city of Ardabil. Data collection tools included a demographic questionnaire, a meter and a scale. Data from questionnaires were analyzed by SPSS software.

Results: Of the 37 patients studied, 19 were male and 18 female. Average age of subjects was 15 .43 ± 5.97 years and 54.05 %. 15 people were under 15 years of age. Average height of patients was 142.43 ± 18.03 centimeter and their mean weight was 38.41 ± 12.32 kg. 64/9 %. 24 people of the patients’ height were below 5% percentile and 54 % (20 people) had weight below 5 % percentile. In total, Weight and height of patients were below NCHS, and with age, this difference was greater.

Conclusions:growth retardation of patients with thalassemia major starts from the first decade of their life and it worsens by age. To prevent growth failure, it is necessary to regularly check the growth rate of the patients, identify the factors involved in growth disorders and take appropriate preventive measures.

Key words:Thalassemia Major- Physical Development - NCHS

Abstract

Background & objectives: β-Thalassemia major is a disorder characterized by defective production of hemoglobin and excessive destruction of red blood cells. Having a child with thalassemia impacts all aspects of parents’ life consisting work, psychosocial life and family and social relationships and all aspects of their life would be affected if they have not enough support. This study was conducted to explore experiences of support in parents of children with thalassemia. 

Methods: The research has done with phenomenology and data collected using deep interviews. Then data analyzed using Colaizzi method. Twelve parents of children with thalassemia were selected by purpose-based approach to sampling. The participants of this study were the parents of children with thalassemia in BuAli Hospital (Ardabil) at 2013.

Results: Lack of support was the main concept found and consisted of helplessness, economical problems and stigma as subthemes.

Conclusion: The results of this research indicated that these parents experience a wide range of problems such as helplessness and stigma, which recommend need to adequate emotional, psychological and social support of these parents to have healthy community.

Keywords: Life Experiences, Thalassemia, Parents, Phenomenology, Chronic Illness.

Background & objectives: Thalassemia accompanies with serious side effects in children and can make them fatigue, weak and afflicted during childhood and adolescence. Besides increasing the complexity and difficulty of patients&rsquo condition, self-efficacy would be decreased. Storytelling is a method of observational learning that can promote self-efficacy. This study was performed to determine the effect of storytelling on self-efficacy in children with Thalassemia aged 7-12 Years.

Methods: In this randomized clinical trial 60 children with thalassemia referred to pediatric clinics in the city of Mashhad, Iran in 2014 was randomly allocated to control and intervention (storytelling) groups. In the intervention group, stories were read for one hour in eight sessions. Control group did not receive any intervention. Self-Efficacy Questionnaire for Children (SEQ-C) was completed by the children in three stages: before, after and 1 month after the intervention. Data were analyzed by independent t-test and repeated measures ANOVA in SPSS (v.16).

Results: Based on data analysis, self-efficacy and its dimensions were significantly different between the two groups (p>0.001) and self efficacy in storytelling group increased significantly.

Conclusion: The results emphasized on the effectiveness of storytelling on general self-efficacy in children with thalassemia. This study introduces storytelling as an interesting technique to improve self-efficacy of children in the child friendly hospitals.