Life Experience of Adolescents with Thalassemia: A Qualitative Research with Phenomenological Approach

Introduction: Adolescents with thalassemia, an inherited blood disorder resulting in anemia, have multiple problems. Not only do the sufferers have to face developmental issues, but also the challenges that arise from their disease both physically and psychologically. This research aimed to understand the variety of difficulties or problems faced by adolescents with thalassemia in Tasikmalaya, West Java, Indonesia. Method: This research was a qualitative study. Samples used in this research were 7 adolescents with thalassemia who were chosen by purposive sampling with inclusion criteria as follows: 1) Adolescents with thalassemia aged 11‑19 years old, 2) Regularly visit Hospital dr. Soekardjo and. Prasetya Bunda for transfusion purposes, and 3) Willing to be involved in the research. For data triangulation, interviews were also conducted with 3 mothers of children with thalassemia. Data were analyzed using Creswell’s 6 steps for data analysis which consist of data transcription, data reading, data coding, reducing information to themes and categories, making data and theme description into qualitative narration, and transforming findings and results into qualitative interpretations and report writing. Results: From the interviews conducted with adolescents with thalassemia and their parents, several findings were addressed: physical problems that arise from thalassemia are slowed growth and development rate, fatigue and weakness, and pain. Meanwhile, other problems arise in psychological aspects, such as emotional burden, anxiety and sadness about the future and frustration because of feeling different from others. In addition, the research also found that adolescents with thalassemia are experiencing difficulties in social interactions because of bullying and isolation. Conclusions: This research provides basic information to define proactive strategies for interventions in order to increase the quality of life of adolescents with thalassemia.