Khurana Atika, Katyal Sudha, Marwaha R K
Department of Child Development, Government Home Science College, Chandigarh, India.
Indian J Pediatr. 2006 Oct;73(10):877-80. doi: 10.1007/BF02859278.
To study the psychosocial life aspects of Indian adolescents suffering from transfusion dependent beta-thalassemia major. Earlier studies done in Italy, Greece and United Kingdom reported the presence of psychosocial burden associated with the disease. We aimed to determine the presence of disease burden in the psychosocial life aspects of Indian adolescents affected with thalassemia.
Structured interviews were carried out with each of the subjects using a schedule which contained questions relating to perceived burden of thalassemia in the various psychosocial life aspects of affected adolescents.
Adverse impact of thalassemia was perceived in the domains of education (70%) and sports (72%). Most thalassemics were not satisfied with their body image. Almost all the study subjects felt that the disease did not affect their family or social relationships. The adolescents were anxious about their future health and education. Majority of the subjects (80%) did not discuss about their disease and its related problems with their friends. They mainly depended on their parents for monetary and emotional support.
There is tremendous psychosocial disease burden perceived by the affected adolescents and hence it is imperative to ameliorate it by promoting a clear understanding of the disease and initiating intervention programs.
研究重度输血依赖型β地中海贫血印度青少年的心理社会生活状况。此前在意大利、希腊和英国开展的研究报告称，该疾病存在心理社会负担。我们旨在确定受地中海贫血影响的印度青少年在心理社会生活方面是否存在疾病负担。
使用一份包含与受影响青少年心理社会生活各方面地中海贫血感知负担相关问题的问卷，对每位受试者进行结构化访谈。
地中海贫血在教育（70%）和体育（72%）领域产生了负面影响。大多数地中海贫血患者对自己的身体形象不满意。几乎所有研究对象都认为该疾病未影响他们的家庭或社会关系。青少年对自己未来的健康和教育感到焦虑。大多数受试者（80%）未与朋友讨论过自己的疾病及其相关问题。他们主要依靠父母提供经济和情感支持。
受影响的青少年感受到了巨大的心理社会疾病负担，因此必须通过促进对该疾病的清晰了解并启动干预项目来减轻负担。
