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Screening and counselling for sickle cell disorders and thalassaemia: The experience of parents and health professionals

Author

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  • Atkin, Karl
  • Ahmad, Waqar I. U.
  • Anionwu, Elizabeth N.

Abstract

Shortfalls in haemoglobinopathy provision result in patients and their carers receiving inadequate support. This paper, by drawing on material from a project evaluating service provision to families caring for a child with a sickle cell disorder or thalassaemia, discusses screening and counselling services. It explores the perspectives of parents, front-line practitioners, managers and health commissioners. Poor quality care, inadequate information and professionals' insensitivity were salient themes in parental accounts. The parents' experience also confirms the problems faced by minority ethnic people in having their welfare needs recognised, more generally. Although our focus in on genetic conditions affecting minority communities in the UK, the issues we address are at the heart of the 'new genetics'.

Suggested Citation

  • Atkin, Karl & Ahmad, Waqar I. U. & Anionwu, Elizabeth N., 1998. "Screening and counselling for sickle cell disorders and thalassaemia: The experience of parents and health professionals," Social Science & Medicine, Elsevier, vol. 47(11), pages 1639-1651, December.
    • Handle: RePEc:eee:socmed:v:47:y:1998:i:11:p:1639-1651
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    Cited by:

    1. S. Temel & E. Birnie & H. Sonneveld & A. Voorham & G. Bonsel & E. Steegers & S. Denktaş, 2013. "Determinants of the intention of preconception care use: lessons from a multi-ethnic urban population in the Netherlands," International Journal of Public Health, Springer;Swiss School of Public Health (SSPH+), vol. 58(2), pages 295-304, April.
    2. Ross, Paula Thompson, 2015. "Motivations of women with sickle cell disease for asking their partners to undergo genetic testing," Social Science & Medicine, Elsevier, vol. 139(C), pages 36-43.
    3. Brown, Nik & Machin, Laura & McLeod, Danae, 2011. "Immunitary bioeconomy: The economisation of life in the international cord blood market," Social Science & Medicine, Elsevier, vol. 72(7), pages 1115-1122, April.
    4. Chattopadhyay, Sreeparna, 2006. "'Rakter dosh'--corrupting blood: The challenges of preventing thalassemia in Bengal, India," Social Science & Medicine, Elsevier, vol. 63(10), pages 2661-2673, November.
    5. Machin, Laura L. & Brown, Nik & McLeod, Danae, 2012. "Giving to receive? The right to donate in umbilical cord blood banking for stem cell therapies," Health Policy, Elsevier, vol. 104(3), pages 296-303.

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