Pakistani Children's Experiences of Growing Up With Beta-Thalassemia Major

In this study, we explored the lived experiences of children with beta-thalassemia major (-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 -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 -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.