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

被引:48
作者
Atkin, K [1 ]
Ahmad, WIU
Anionwu, EN
机构
[1] Univ Bradford, Ethn & Social Policy Res Unit, Bradford BD7 1DP, W Yorkshire, England
[2] Thames Valley Univ, Wolfson Inst Hlth Sci, Sch Nursing Studies, London, England
关键词
sickle cell disorders; thalassaemia; ethnic minorities; screening; counselling; genetic conditions;
D O I
10.1016/S0277-9536(98)00261-5
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
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. Pour 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'. (C) 1998 Elsevier Science Ltd. All rights reserved.
引用
收藏
页码:1639 / 1651
页数:13
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