Gestion des crises vaso-occlusives par les patients atteints de drépanocytose.

Abstract

Introduction : Sickle cell disease, while it is the most common genetic disease in France, is little known to caregivers and the general public.Context : Only a few studies have examined the daily lives of people suffering from this disease.Objectives : The purpose of this project was to describe the specific strategies helping adult patients to manage the symptoms of their disease.Method : To reach this objective, a qualitative study was conducted among eight homozygous (SS) people over 30 years old living in the Ile-de-France region of France. The semi-structured interviews took place at the patients' homes, selected from several regional competence centers and on social media. An inductive methodology and a thematic analysis were used to draw the conclusions of this research.Results : They show that pain and suffering are patients' main complaints. Patients suffering from sickle cell disease seek numerous effective self-care strategies to manage their long-term pain : preventive measures and drugs, as well as complementary and alternative medicine.Discussion : A sociological approach shows us the considerable work that patients undertake to manage symptoms daily.Conclusion : The findings support interventions that would increase the feeling of control over the disease through better self-awareness and appropriate physical activity.