Living With Transfusion-Dependent Thalassemia: Adolescents' Journey Toward Normalcy-A Phenomenological Study

BackgroundPatients with beta-thalassemia who require regular blood transfusions experience a high level of burden from the disease. To date, no in-depth Jordanian research has targeted this population, particularly those who have transfusion-dependent beta-thalassemia (TDT). This study aimed to gain a deeper understanding of the lived experiences of Jordanian adolescents enduring TDT.MethodQualitative research utilizing a phenomenological descriptive approach was applied in this study, using semistructured, face-to-face interviews with a purposive sample of 17 adolescents with TDT. The interviews were conducted using an interview guide and recorded with permission. Transcripts were analyzed using a thematic approach to identify themes and subthemes.ResultsThree main themes emerged from the data analysis. The first, "The multifaceted burdens of thalassemia," captured the daily struggles of living with TDT. Participants revealed challenges that interfered with various aspects of their lives. The second theme, "Personal growth and resilience," highlighted participants' ability to overcome these challenging circumstances, demonstrating their resilience. The last theme explored the concept of "normalcy" and its sources for adolescents with TDT.ConclusionThis study discloses that "normalcy" is an active process of adjustment and management. Ultimately, the resilience allows the adolescents to frame thalassemia as a manageable life challenge, yet this perspective does not wipe away the significant burdens they must recurrently bear.