A whole new world: the experiences of adolescents with beta-thalassemia major as they transition to adult care

Abstract

Beta-thalassemia Major (b-TM) is a chronic medical condition. Effective illness management requires adherence to arduous medical treatment to ensure a life free of life-threatening complications. This qualitative study characterizes the experiences of adolescents living with, and managing b-TM on the cusp of transitioning from pediatric to adult orientated institutions of care. Using the methodological approach of interpretive phenomenology and conducting semi-structured interviews with five participants, five themes were identified. These include: knowledge and understanding of b-TM; role of familial support; self-reflection and disclosure; comradery; and readiness to transition, including the impact of incorporating a Health Transition Specialist as a member of a comprehensive health care team. The findings identify key factors that impact the daily lives of adolescents with b-TM, as they adapt to required self-management practices, navigate the health care system, and transition to adult care.