Roy Tanuka, Chatterjee Suhita Chopra
Department of Humanities and Social Sciences, Indian Institute of Technology Kharagpur, Kharagpur, India.
Qual Health Res. 2007 Jan;17(1):85-93. doi: 10.1177/1049732306296400.
In disadvantaged settings, where medical and socioeconomic support structures are inadequately developed, adolescent thalassemic patient respondents (ATPRs) live a dismal existence. In this article, the authors explore the experiences of ATPRs in West Bengal, India, with a view to addressing the question of whether thalassemia can be considered a disability, using a qualitative research design involving a purposive sampling method. The authors conducted in-depth interviews with 36 patients. The findings show that culture and education play a major role in illness experiences. The consequence of thalassemia is extremely stressful, and patients face a variety of physical, psychological, and social problems. Considering these experiences, the study concludes that thalassemia might be officially considered as a disability in India, requiring a multiple theoretical as well as a multipronged intervention method to tackle it adequately.
在医疗和社会经济支持结构发展不完善的贫困地区，青少年地中海贫血患者的生活十分凄惨。在本文中，作者探讨了印度西孟加拉邦青少年地中海贫血患者的经历，旨在通过采用目的抽样法的定性研究设计来解决地中海贫血是否可被视为残疾这一问题。作者对36名患者进行了深入访谈。研究结果表明，文化和教育在患病经历中起着重要作用。地中海贫血的后果极具压力，患者面临各种身体、心理和社会问题。考虑到这些经历，该研究得出结论，在印度，地中海贫血可能会被官方认定为残疾，需要多种理论以及多管齐下的干预方法来妥善应对。
