Screening and counselling for sickle cell disorders and thalassaemia: the experience of parents and health professionals
Atkin, Karl and Ahmad, Waqar I. U. and Anionwu, Elizabeth N. (1998) Screening and counselling for sickle cell disorders and thalassaemia: the experience of parents and health professionals. Social Science and Medicine, 47 (11). pp. 1639-1651. ISSN 0277-9536
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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'.
|Research Areas:||A. Middlesex University Schools and Centres > School of Law > Social Policy Research Centre|
|Citations on ISI Web of Science:||31|
|Deposited On:||27 Aug 2009 13:50|
|Last Modified:||28 Jan 2014 08:11|
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