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Representations of sickle cell disease and projections towards the future

Par : Contributeur(s) : Type de matériel : TexteTexteLangue : français Détails de publication : 2024. Ressources en ligne : Abrégé : Sickle cell disease is the most common genetic disease in the world. This research focused on cultural representations of the disease among patients born in France or abroad. We explored their projections concerning the future so as to attempt to improve their management, by way of clinical interviews and quality-of-life questionnaires as well as questionnaires assessing the quality of projections on the future. This research took place in a Paris hospital. Twenty individuals from sub-Saharan Africa (12 women and 8 men), resident in France for at least two months and aged from 19 to 71 years were interviewed. Ten were born in France and 10 in Africa. The results highlight the importance of the cultural, social and medical environment in the process of subjectification of the disease for the adults affected, and demonstrate the need for interdisciplinary accompaniment of these patients in a transcultural clinical setting.
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Sickle cell disease is the most common genetic disease in the world. This research focused on cultural representations of the disease among patients born in France or abroad. We explored their projections concerning the future so as to attempt to improve their management, by way of clinical interviews and quality-of-life questionnaires as well as questionnaires assessing the quality of projections on the future. This research took place in a Paris hospital. Twenty individuals from sub-Saharan Africa (12 women and 8 men), resident in France for at least two months and aged from 19 to 71 years were interviewed. Ten were born in France and 10 in Africa. The results highlight the importance of the cultural, social and medical environment in the process of subjectification of the disease for the adults affected, and demonstrate the need for interdisciplinary accompaniment of these patients in a transcultural clinical setting.

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