Abstract

Objective: To explore lived experiences, family support, and educational needs shaping self-management among adolescents with thalassemia.
Methodology: This descriptive phenomenological study was conducted in two public hospitals in Bekasi, Indonesia, from May 2024 to February 2025. Participants were purposively selected and included nine adolescents, eight parents or caregivers, and four nurses. Data were obtained through interviews, focus group discussions, observations, and field notes, and were then analyzed using inductive thematic analysis and team review.
Results: Four themes were developed: negotiating self-management within lifelong treatment demands; preserving normal adolescence amid bodily and social disruption; family support as a scaffold for autonomy; and transforming education into shared family routines. Treatment fatigue, irregular transfusion scheduling, chelation difficulties, stigma, disrupted schooling, and medicine access shaped self-management. Families provided transport, reminders, monitoring, reassurance, and advocacy. Nurses emphasized structured, family-inclusive education.
Conclusion: Adolescent thalassemia self-management is relational and service-dependent. Family-centered nursing that combines education, caregiver coaching, psychosocial screening, and coordinated follow-up may strengthen adherence, autonomy, and well-being.

Key words: Thalassemia, adolescent, self-management, family-centered care.