Shortfall 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 iced 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.
Mots-clés Pascal : Anémie hématie falciforme, Thalassémie, Enfant, Homme, Conseil génétique, Ethnie, Minorité, Parent, Interaction sociale, Support social, Relation soignant famille, Communication information, Diagnostic, Prénatal, Royaume Uni, Europe, Hémopathie, Anémie hémolytique, Hémoglobinopathie, Maladie héréditaire
Mots-clés Pascal anglais : Sickle cell anemia, Thalassemia, Child, Human, Genetic counseling, Ethnic group, Minority, Parent, Social interaction, Social support, Health staff family relation, Information communication, Diagnosis, Prenatal, United Kingdom, Europe, Hemopathy, Hemolytic anemia, Hemoglobinopathy, Genetic disease
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 99-0046025
Code Inist : 002B19A01. Création : 31/05/1999.