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. Patients were selected from several treatment centers and on social media. An inductive methodology and a thematic analysis were used to draw the conclusions of this research.
Results: The results 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 patients’ feeling of control over the disease through better self-awareness and appropriate physical activity.