AI Article Synopsis
- The study focuses on the experiences of children aged 8 to 12 living with beta-thalassemia major (β-TM), emphasizing their perspectives rather than relying on adults.
- Data was gathered in two stages: first through focus groups and role plays, then through in-depth interviews for a deeper understanding of their experiences.
- Findings reveal that children with β-TM navigate the challenge of feeling different while employing strategies to achieve a sense of normalcy, highlighting the need for research that centers on children's voices in chronic illness contexts.
Article 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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| http://dx.doi.org/10.1177/1049732314552663 | DOI Listing |
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