title: [Qualitative analysis of the offer for prevention and caring of sickle cell anaemia in Brussels].
abstract: Sickle cell disease (SCD) is the first genetic disease in the world and remains largely ignored by the population but also by health professionals. SCD is characterized by a variable clinical expression, however most of the patients are at risk to develop acute and severe complications conducting to a fatal issue. This study develops a qualitative approach to analyze the adequacy between the services offered for those patients in Brussels and the sociocultural characteristics of the target population and more specifically of the migrant population originating of sub-saharan Africa which is the most concerned. To have a global vision of the preventive and care services provided for SCD in Brussels, semistructured interviews were conducted with health professionals and patients associations. The results were analyzed to determine if they match the expectations of health professionals and audiences across the voluntary sector. The results show the absence of a real recognition at the national level of sickle cell anaemia, a deficit in psychosocial care of patients and their families. SCD is often considered by the African community as a disease of the curse which has to be hidden. To the physical pain and multiple organ complications one must add a psychological distress that patients drive back into silence. The management of this disease therefore requires a dedicated approach. With the exception of newborn screening performed in all maternity hospitals in Brussels and Liège, there is no specific measure for the management of SCD in Belgium.
authors.affiliation: Département d'Epidémiologie et de Promotion de la Santé, Ecole de Santé Publique, ULB. metacopp@yahoo.fr
authors.forename: M
authors.initials: M
authors.lastname: Coppieters
authors.forename: I
authors.initials: I
authors.lastname: Godin
authors.forename: Y
authors.initials: Y
authors.lastname: Coppieters
authors.forename: B
authors.initials: B
authors.lastname: Gulbis
mesh_terms: D000755:Anemia, Sickle Cell; D019468:Disease Management; D004645:Empathy; D006301:Health Services Needs and Demand; D006801:Humans; D015997:Neonatal Screening