ABSTRACT

Thalassemia, a genetic blood disorder, involves an inability to produce sufficient hemoglobin and comprises two types: alpha thalassemia and beta thalassemia. Beta thalassemia’s immediate treatment measures include frequent blood transmissions, stem cell and bone marrow transplants; all capable of altering an individual’s idea of body image, self-concept, growth, and socialization, resulting in several emotional, psychological, and behavioral concerns. This study aimed at comprehending the dilemmas of body image and self-concept encountered by adolescents with thalassemia, particularly the resulting influence on physical development and socialization. Using the phenomenological interpretivism approach of qualitative research, data was collected using purposive-convenient sampling from 11 adolescents, both boys and girls ranging from ages 12 to 18, living with thalassemia and undergoing treatment. The research highlights adolescent concerns with body image, specifically with complexion, facial features, being either underweight or overweight, all amalgamating into a self-concept dilemma. Moreover, results point to the significant influence of experiences with family, peers, educational institutions, and hospital staff. Therapeutic attention, through regular screening and counselling, should be provided to adolescent thalassemia patients to address the psychological aspects of the chronic illness.

摘要

地中海贫血是一种遗传性血液疾病，涉及无法产生足够的血红蛋白，包括两种类型：α地中海贫血和β地中海贫血。β地中海贫血的即时治疗措施包括频繁的血液传播、干细胞和骨髓移植；所有这些都能够改变个人对身体形象、自我概念、成长和社会化的看法，从而导致一些情绪、心理和行为问题。本研究旨在了解地中海贫血青少年在身体形象和自我概念方面遇到的困境，特别是对身体发育和社会化的影响。使用定性研究的现象学解释主义方法，使用有目的的方便抽样从 11 名青少年（包括 12 至 18 岁的男孩和女孩）中收集数据，患有地中海贫血症并正在接受治疗。该研究强调了青少年对身体形象的担忧，特别是肤色、面部特征、体重不足或超重，所有这些都融合成一个自我概念的困境。此外，结果表明与家人、同龄人、教育机构和医院工作人员的经历具有重大影响。应通过定期筛查和咨询，为青少年地中海贫血患者提供治疗关注，以解决慢性病的心理问题。结果表明与家人、同龄人、教育机构和医院工作人员的经历具有重大影响。应通过定期筛查和咨询，为青少年地中海贫血患者提供治疗关注，以解决慢性病的心理问题。结果表明与家人、同龄人、教育机构和医院工作人员的经历具有重大影响。应通过定期筛查和咨询，为青少年地中海贫血患者提供治疗关注，以解决慢性病的心理问题。