Thalassemia major is a common form of an inherited anemia in the world that occurs due to a defect in the synthesis of one of the globin chains, hemoglobin, and causes severe anemia in the individual [1]. In this disease, one's life necessarily requires regular blood transfusions and medical care [2]. The disease has severe effects on a person's life; these include chronic anemia, enlarged liver and spleen, ascites, heart failure, delayed or immature puberty, and noticeable changes in the facial bones in later years. Approximately 240 million people worldwide carry the disease gene, and about 200,000 babies with thalassemia are born each year.
Many adolescents and young people with chronic diseases, including thalassemia, have a low quality of life [5]. Thalassemia causes emotions such as anger, depression, premature death, and stress for the adolescent. Marriage is a way of dealing with important life events, employment, economic pressures, emotional worries, and problems with medical care during adolescence. [6] Therefore, considering the effect of this disease on the psychological, economic and social dimensions of their lives, it is necessary to pay attention to these patients [7].
The primary goal of treatment, especially in chronic disease, is to enhance the quality of life by reducing its effects. Quality of life is one of the objective needs of human beings in relation to personal and group understanding of people's sense of well-being and is considered as an important indicator and the effectiveness of many health and medical interventions [8]. Among the programs designed and implemented so far, the Life Skills Training Program is been the most effective and efficient [9].
The psychosocial problems of thalassemia patients are more severe than those of healthy people; therefore, in order to improve the quality of life in these patients, medical treatment should be combined with social emotional and psychological support to prevent irreversible complications [12].
The quality of life of patients with chronic disease is of great importance. Patients with thalassemia major have a low quality of life. They receive no training other than routine training on diet and nutrition, the effects of the disease, and the symptoms of the disease [18]. Given the need to improve the quality of life of thalassemia patients and the population of adolescents with thalassemia, the present study was conducted to determine the impact of using life skills on the quality of life of adolescents with thalassemia major.
 

The present study was a semi-experimental study of two groups of previous and subsequent types that was designed to determine the effect of using life skills on the quality of life of adolescents with thalassemia major referred to Baqaei Hospital 2 in Ahvaz, Iran.
Target-based sampling was performed on individuals with thalassemia based on entry and exit criteria. The entry criteria were that the adolescent was willing to attend training sessions, had not previously participated in life skills training courses, and was 13 to 18 years old, but the exclusion criteria was not attending a class session. The method of assigning intervention to individuals was random and by the method of alternative permuted block randomization with the size of block 4 (using a table related to random replacements). Then, the samples were divided into two intervention groups (42 people) and control group (42 people). Being in either group was randomly based on the draw. Both groups then completed pre-test questionnaires. After this, for the experimental group, the educational intervention was performed by the researcher in the form of face-to-face sessions during 6 2-hour sessions [19].
Adolescents were randomly divided into intervention and control groups. Both groups completed the demographic information questionnaire and the Kid Screening Questionnaire for Quality of Life of the Teenager 52. Then the experimental group received the educational content (holding a class, Q&A and booklet) for 6 sessions of 2-hour. The control group did not receive any training.
At the end of the data, using SPSS software version 22 (SPSS Inc., Chicago, IL., USA) and quantitative variables as mean, standard deviation, minimum and maximum and qualitative variables as number (percentage) were reported. The normality of quantitative variables was assessed using the Shapiro-Wilk test. To investigate the relationship between qualitative variables, Fisher's exact test and to compare quantitative variables between the two groups, independent t-test or its non-parametric equivalent (Mann-Whitney test) were used. The significance level of the above tests was less than 0.05.

The results showed that the difference between the mean of quality of life in the two groups of control and intervention was not significant (P<0.05) in pre-test. Also, post-hoc test (assuming non-homogeneity of variances) also showed a significant difference in mean of quality of life in post-test in both intervention and control groups (P<0.05).

Table 1. Distribution of relative frequency and percentage of research units based on parent demographic characteristics in two groups of intervention and control

Table 3. Comparison of mean and standard deviation in the two groups of intervention and control, before the intervention

 

Table 4. Comparison of mean and standard deviation in the two groups of intervention and control, after the intervention

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The aim of this study was to determine the effect of using life skills on the quality of life of adolescents with thalassemia major. Life skills training can be helpful in achieving this goal. These trainings have a positive effect on the level of emotion, mindset and behavior of people in the community. Life skills are related to practice and behavior, and if learned in practice, can improve society by changing the behavior of individuals in society.
The results showed that after the intervention, the mean score of quality of life in all dimensions and the mean score of total quality of life increased. This study is consistent with the results of a study by Khani et al. that showed that life skills training can play an important role in improving the quality of life and psychological characteristics of patients with diabetes [22]. The results of the present study showed that life skills training has increased the mental health and physical health of the intervention group.
Life skills training can enable people to use effective and compromised strategies to deal with everyday problems; in other words, life skills are important coping strategies that increase a person's ability to develop personally and socially and reduce their mental and physical problems [28].
Life skills training is almost a complete therapeutic package that teaches people the set of necessary and essential life skills and helps people to know and evaluate their emotions and feelings well. They can also understand the logical and irrational thoughts associated with them and ultimately conclude that they are guided by efficient and inefficient thoughts and their positive and negative emotions. When subjects are aware that it is themselves and their perceptions that are greatly influenced by positive and negative emotions, they can control them with the life skills they have learned; as a result, teaching life skills with the principles and skills increases public health and quality of life [33].

 

Teaching ten life skills can have a significant impact on improving the quality of life of adolescents with thalassemia and can be used as an effective measure in this regard.


 

This article is taken from the dissertation of Master of Nursing with the code of ethics (IRCT20181202041825N1) which has been done with the financial support of Ahvaz Jundishapur University of Medical Sciences. We would like to express our sincere gratitude to the Vice Chancellor for Research and Technology of this university, as well as to the esteemed patients, without whose cooperation it would have been impossible to conduct this research.

 

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.