Title | Pakistani children’s experiences of growing up with Beta-Thalassemia Major |
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Type | Journal article |
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Authors | Mufti, G.E.R., Towell, A. and Cartwright, T. |
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Abstract | In this study, we explored the lived experiences of children with beta-thalassemia major (β-TM). We considered children as experts on their experiences in contrast to the prevalent approach of asking parents or other adults about children’s perspectives. The sample consisted of 12 children aged 8 to12 years. There were two stages to data collection. In Stage 1 we employed two focus group discussions and two role plays and analyzed the data thematically. This directly informed Stage 2, consisting of 12 in-depth interviews subjected to interpretative phenomenological analysis. From our findings we show that living with β-TM involves a continuous struggle between feelings of being different and strategies to minimize these differences to strive for normalcy. We suggest that understanding the experiences of living with β-TM from children’s perspectives can provide unique insights into their experiences, which can fill the gap in the existing, predominantly adult-oriented research on chronic illness. |
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Keywords | Asia, South / Southeast; children, illness and disease; coping and adaptation; developing countries; interpretative phenomenological analysis (IPA); illness and disease, experiences; lived experience |
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Journal | Qualitative Health Research |
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Journal citation | 25 (3), pp. 386-96 |
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ISSN | 1049-7323 |
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Year | 2015 |
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Publisher | Sage |
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Accepted author manuscript | |
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Digital Object Identifier (DOI) | https://doi.org/10.1177/1049732314552663 |
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Publication dates |
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Published online | 23 Sep 2014 |
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Published in print | Mar 2015 |
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