ERN-EuroBloodNet launched a project targeting patient well-being and awareness of psychotherapy for Sickle Cell Disease Patients. Mental and physical health are equally important components of overall health. When it comes to Sickle Cell Disease a patient might deal with fear, denial, unacceptance, depression, fatigue, overwhelming emotions, isolation, sense of guilt, managing uncertainty, and limitations. The project is about organizing a Conversation Group guided by a psychotherapist for SCD. This action has been proposed by the Spanish National SCD Patient Association: Asociación Española de Enfermedad Falciforme (ASAFE).
The association has identified a psychotherapist to guide the conversation group. The healthcare professional selected worked with SCD patients in a reference center for SCD a Member of the ERN-EuroBloodNet (Hospital General Universitario Gregorio Marañón de Madrid).
It has been decided to have two different groups: one for patients and the other for caregivers: parents, brothers and sisters or partners in love, wife and husband.
A total of 4 conversations for patients and 4 conversations for caregivers have been held. 50 Participants had the chance to share experiences and problems related to SCD, with the professional support of a psychotherapist who helped in understand and dealing with the psychological consequences of the disease, develop self-confidence, and improve their quality of life, including:
