[Self-management of pain crisis in patients with sickle cell disease].

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.