SICKLE CELL DISEASE SELF-MANAGEMENT AMONG LATE ADOLESCENTS AND THEIR FAMILIES IN SAUDI ARABIA: A MIXED-METHOD STUDY

Background: Sickle cell disease (SCD) is a hereditary blood disorder that affects millions globally. In Saudi Arabia, it manifests in severe or moderate forms, affecting 24 of 10,000 children and adolescents. This places a substantial burden on families, necessitating intricate care. While existing literature has primarily focused on medical management and quality of life, there is a gap in understanding Saudi adolescents' experiences living with SCD and their self-management behaviors. Given the cultural emphasis on family in Saudi Arabia, this study was guided by the Individual and Family Self-management Theory (IFSMT), emphasizing collaborative efforts involving individuals and their families.