Influence des hémoglobinopathies sur l’aspect psychosocial des patients atteints: Cas de la Béta-Thalassémie majeure

In Tunisia, major Beta-Thalassemia is a major public health problem. Beyond physical disability, the psychosocial aspects weigh significantly on the thalassemic patient's experience. In this context, we propose to study, with a Tunisian population of affected patients, the representation of the disease as well as its impact on the life of the patient in order to identify the psychosocial repercussion of this hemoglobinopathy. This is a qualitative prospective study by questionnaire that included 159 thalassemic patients followed in the Department of Pediatric Immunohematology of the National Center for Bone Marrow Transplantation in Tunis. Our results show that the negative impact on the life of our thalassemics is a real fact. These hemoglobinopaths feel they are experiencing a chronic situation that impedes their physical activity and social participation, hence the rejection of acceptance of this threatening and incurable anomaly, conceived as a social handicap that negatively affects their emotional life, their performance school, their social integration and even limit their life plans. In this, major Beta-Thalassemia is conceived as a shameful and stigmatizing circumstance that marks an imbalance as well as a deteriorated expression of the relation of the patient to the society affecting its physical, psychological and social dimension.