Exploring the Realities of Self-Management Among Adolescents with Thalassaemia and Their Caregivers in Malaysia: A qualitative study

Adolescents with thalassaemia face unique self-management challenges amid emotional and social changes. This research explored how Malaysian adolescents and their caregivers navigate self-management through in-depth interviews with 30 participants, analyzed thematically using Atlas. ti software. Three main themes emerged: knowledge and beliefs, self-regulation and adaptation, and communication and interaction. Findings highlight adolescents' awareness of their condition, motivation for health management, coping strategies, and the importance of open communication and social support. The study emphasizes the need for practical self-management tools and interventions to enhance adolescents' quality of life.