Anemia Research Today is a free monthly online journal that collates and summarizes the latest research about Anemia, including details on symptoms, diagnosis, diet, treatment, causes.

The experiences of adolescents with thalassemia in West Bengal, India.

Roy T, Chatterjee SC

Department of Humanities and Social Sciences, Indian Institute of Technology Kharagpur, Kharagpur, India.

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.

Published 15 December 2006 in Qual Health Res, 17(1): 85-93.
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