title: The experiences of adolescents with thalassemia in West Bengal, India.
abstract: 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.
authors.affiliation: Department of Humanities and Social Sciences, Indian Institute of Technology Kharagpur, Kharagpur, India.
authors.forename: Tanuka
authors.initials: T
authors.lastname: Roy
authors.forename: Suhita Chopra
authors.initials: SC
authors.lastname: Chatterjee
mesh_terms: D000293:Adolescent; D001007:Anxiety / Q000150:complications; D002648:Child; D003466:Cultural Characteristics; D004522:Educational Status; D005260:Female; D006801:Humans; D007194:India / Q000453:epidemiology; D007398:Interpersonal Relations; D008297:Male; D011203:Poverty; D011788:Quality of Life / Q000523:psychology*; D012067:Religion; D012737:Sex Factors; D013789:Thalassemia / Q000150:complications / Q000453:epidemiology* / Q000503:physiopathology*