Pakistani children’s experiences of growing up with Beta-Thalassemia Major

Mufti, G.E.R., Towell, A. and Cartwright, T. 2015. Pakistani children’s experiences of growing up with Beta-Thalassemia Major. Qualitative Health Research. 25 (3), pp. 386-96. https://doi.org/10.1177/1049732314552663

TitlePakistani children’s experiences of growing up with Beta-Thalassemia Major
TypeJournal article
AuthorsMufti, G.E.R., Towell, A. and Cartwright, T.
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.

KeywordsAsia, South / Southeast; children, illness and disease; coping and adaptation; developing countries; interpretative phenomenological analysis (IPA); illness and disease, experiences; lived experience
JournalQualitative Health Research
Journal citation25 (3), pp. 386-96
ISSN1049-7323
Year2015
PublisherSage
Accepted author manuscript
Digital Object Identifier (DOI)https://doi.org/10.1177/1049732314552663
Publication dates
Published online23 Sep 2014
Published in printMar 2015

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Baker Towell, D.M. and Towell, A. 2003. A preliminary investigation into quality of life, psychological distress and social competence in children with Cloacal Exstrophy. Journal of Urology. 169 (5), pp. 1850-1853. https://doi.org/10.1097/01.ju.0000062480.01456.34

Functional outcome following stroke in children
Towell, A., Gordon, A., Ganesan, V. and Kirkham, F. 2002. Functional outcome following stroke in children. Journal of Child Neurology. 17 (6), pp. 429-434.

The impostor phenomenon in British university students: relationships between self-esteem, mental health, parental rearing style and socioeconomic status
Sonnak, C. and Towell, A. 2001. The impostor phenomenon in British university students: relationships between self-esteem, mental health, parental rearing style and socioeconomic status. Personality and Individual Differences. 31 (6), pp. 863-874. https://doi.org/10.1016/S0191-8869(00)00184-7

Compliance and outcome in treatment-resistant anorexia and bulimia: a retrospective study
Baker Towell, D.M., Woodford, S., Reid, S., Rooney, B. and Towell, A. 2001. Compliance and outcome in treatment-resistant anorexia and bulimia: a retrospective study. British Journal of Clinical Psychology. 40 (2), pp. 189-195.

Intracranial identification of an electric frontal-cortex response to auditory stimulus change: a case study
Liasis, A., Towell, A., Alho, K. and Boyd, S. 2001. Intracranial identification of an electric frontal-cortex response to auditory stimulus change: a case study. Cognitive Brain Research. 11 (2), pp. 227-233. https://doi.org/10.1016/S0926-6410(00)00077-X

Auditory event-related potentials in the assessment of auditory processing disorders: a pilot study
Liasis, A., Bamiou, D.E., Campbell, P. and Towell, A. 2001. Auditory event-related potentials in the assessment of auditory processing disorders: a pilot study. Neuropediatrics. 34, pp. 23-29.

Does the pre-frontal cortex contribute to movement-related potentials? Recordings from subdural electrodes
Jahanshahi, M., Dirnberger, G., Liasis, A., Towell, A. and Boyd, S. 2001. Does the pre-frontal cortex contribute to movement-related potentials? Recordings from subdural electrodes. Neurocase. 7 (6), pp. 495-501. https://doi.org/10.1093/neucas/7.6.495

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