title: Pakistani children's experiences of growing up with beta-thalassemia major.
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.
authors.affiliation: Mount Saint Vincent University, Halifax, Nova Scotia, Canada Gul-e-Rana.Mufti@msvu.ca.
authors.forename: Gul-E-Rana
authors.initials: GE
authors.lastname: Mufti
authors.affiliation: University of Westminster, London, UK.
authors.forename: Tony
authors.initials: T
authors.lastname: Towell
authors.affiliation: University of Westminster, London, UK.
authors.forename: Tina
authors.initials: T
authors.lastname: Cartwright
mesh_terms: D000223:Adaptation, Psychological; D002648:Child; D002908:Chronic Disease; D005260:Female; D006801:Humans; D008297:Male; D010146:Pain / Q000209:etiology / Q000523:psychology; D010154:Pakistan; D036301:Qualitative Research; D012111:Residence Characteristics; D012934:Social Isolation / Q000523:psychology; D012944:Social Support; D017086:beta-Thalassemia / Q000150:complications / Q000523:psychology*
keywords: Asia, South / Southeast; children, illness and disease; coping and adaptation; developing countries; illness and disease, experiences; interpretative phenomenological analysis (IPA); lived experience