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Ryan, K., Bain, B.J., Worthington, D., James, J., Plews, D., Mason, A., Roper, D., Rees, D.C., De La Salle, B., Streetly, A. and British Committee for Standards in Haematology (2010) Significant Haemoglobinopathies: Guidelines for Screening and Diagnosis. British Journal of Haematolgy, 149, 35-49.
https://doi.org/10.1111/j.1365-2141.2009.08054.x

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• TITLE: Lived Experience of Thalassaemic Children in Bangladesh

  AUTHORS: Khaleda Akter, Shanzida Khatun, Md. Sazzad Hossain

  KEYWORDS: Lived Experience, Thalassaemia, Children

  JOURNAL NAME: Open Journal of Nursing, Vol.10 No.11, November 27, 2020

  ABSTRACT: Background: Worldwide thalassemia poses a serious public health problem due to the high prevalence. Globally, 15 million people are suffering from clinically thalassemic disorders. Objective: To describe the lived experience of thalassaemic children in Bangladesh. Methods: This study was conducted following a descriptive qualitative research approach. Twenty thalassemic children were recruited purposively in the present study. Semi-structured individual’s interview guidelines were used to collect in depth information. In addition, digital recorder was used to capture the children’s voice. Data were analyzed using the process of content analysis. This study was approved by the Institutional Review Board (IRB), NIANER. Results: The mean age of the thalassemic children was (16.05) SD = 1.877. Most of the children were Muslim (95.0%) and they study at school (70.0%). Most of their mothers were (90.0%) housewife. This study revealed four major themes and eleven subthemes based on the experience of thalassemic children: 1) understanding of children meaning of thalassaemia: perception of children, unable to perform daily activities, and educational impact, 2) feeling frustrating experience and disease management: feelings about long term treatment, coping and altered body image, 3) family relationship: differences from siblings, parental attention and feeling burden, and 4) social interactions: sharing with peer, inability to social interaction. Conclusion: This study indicated that thalassaemia has affected negatively on several areas of health of these children including physical, emotional, social financial and educational areas. Reducing these problems requires comprehensive constant support and surveying health and medical status of these children to promote care and decrease the suffering of thalassaemic children. The findings of the present study are grounds for further research in a wider range to describe the different areas of the experience of thalassaemic children.