Penser les effets du désavantage social liés à la maladie chronique : enjeux épistémologiques d’un projet transdisciplinaire sur des jeunes drépanocytaires en Guadeloupe

Abstract

This article presents the epistemological issues related to the implementation and exploitation of data produced within the framework of a transdisciplinary project on young sickle cell patients in Guadeloupe. The use of the theoretical model of the Human Development Model – Disability Creation Process aims to apprehend the reciprocal interactions between the biomedical effects of the pathology and lifestyle habits, breaking with medical readings of the disability. Based on an inclusive approach, this model reintroduces individual factors in interaction with the physical and social environment, in the study of the performance of everyday activities and social roles. The resulting reflection on transdisciplinarity concerns both the operationalization of the survey protocol and the modalities of processing research data. How to avoid the dispersion or simple coexistence of the latter? By contributing to their integration, the HDM-DPC offers a framework likely to promote applications and benefits for patients. The transdisciplinary approach aims societal benefits, in particularly improved inclusion in all spheres of their social life and aims to examine the epistemological foundations of a transdisciplinary study of sickle cell disease, favoring a socio-anthropological approach.