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Living a 'normal' life: young people coping with thalassaemia major or sickle cell disorder

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  • Atkin, Karl
  • Ahmad, Waqar I. U.

Abstract

This qualitative paper explores the strategies and resources young people use to cope with sickle cell disorder or thalassaemia major, two haemoglobin disorders with serious implications for health and survival. By focusing on coping strategies, we explore how young people attempt to take control over their lives. The respondents, largely of South Asian and African Caribbean origin, aged between 10 and 19 years, valued maintaining a 'normal' life and struggled to achieve this normalcy. Strategies were employed to minimise difference from peers but these strategies remained vulnerable. Coping occurred in a dynamic space, involving negotiation and engagement with both personal and structural factors. Threats to normalcy did not always reside in the condition; life transitions, changes in social relationships and racist, disablist or sexist marginalisation also threatened coping strategies.

Suggested Citation

  • Atkin, Karl & Ahmad, Waqar I. U., 2001. "Living a 'normal' life: young people coping with thalassaemia major or sickle cell disorder," Social Science & Medicine, Elsevier, vol. 53(5), pages 615-626, September.
    • Handle: RePEc:eee:socmed:v:53:y:2001:i:5:p:615-626
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    Cited by:

    1. Ciribassi, Rebekah M. & Patil, Crystal L., 2016. "“We don't wear it on our sleeve”: Sickle cell disease and the (in)visibile body in parts," Social Science & Medicine, Elsevier, vol. 148(C), pages 131-138.
    2. Weckesser, Annalise & Denny, Elaine, 2017. "Re-working biographies: Women's narratives of pregnancy whilst living with epilepsy," Social Science & Medicine, Elsevier, vol. 185(C), pages 110-117.
    3. Kirk, Susan, 2010. "How children and young people construct and negotiate living with medical technology," Social Science & Medicine, Elsevier, vol. 71(10), pages 1796-1803, November.
    4. Ola, Bolanle A. & Yates, Scott J. & Dyson, Simon M., 2016. "Living with sickle cell disease and depression in Lagos, Nigeria: A mixed methods study," Social Science & Medicine, Elsevier, vol. 161(C), pages 27-36.
    5. Dyson, Simon Martin & Atkin, Karl & Culley, Lorraine A. & Dyson, Sue E. & Evans, Hala & Rowley, Dave T., 2010. "Disclosure and sickle cell disorder: A mixed methods study of the young person with sickle cell at school," Social Science & Medicine, Elsevier, vol. 70(12), pages 2036-2044, June.

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