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Lived experiences of adolescents with thalassemia major: A phenomenological study/ lived experiences in tm
Münevver Erkul1, Zeynep Öztürk2
1Antalya Bilim University, Faculty of Health Sciences, Döşemealtı/Antalya, Turkey.
Objective:
This study explored the lived experiences and coping processes of adolescents diagnosed with Thalassemia Major (TM) to inform the development of patient-centered and individualized care strategies.
Methods:
A qualitative phenomenological design was employed. Between April and June 2024, purposive sampling was used to recruit ten adolescents (12-18 years) from the Thalassemia Unit of a public hospital in Antalya, Türkiye. Semi-structured interviews were conducted until data saturation was achieved. Ethical approval was obtained (TBAEK-199). Sociodemographic data were summarized using SPSS 22.0 as frequencies and percentages. Interview transcripts were analyzed using Colaizzi's seven-step method. Trustworthiness was ensured through independent double-coding, audit trail maintenance, and member checking.
Results:
Six main themes emerged: (1) Acceptance and normalization (integrating illness into daily life; reframing TM as manageable); (2) Impact on schooling (absences due to transfusions or surgeries; academic and emotional strain; facilitative role of teacher support); (3) Peer and societal responses (misinformation, stigma, strategic disclosure, and peer support); (4) Family support and sibling dynamics (parental support enhancing adherence; protective bonds and ambivalence); (5) Treatment adherence and transplant pathway (burden of chronic transfusion and chelation; hope and hesitation regarding hematopoietic stem cell transplantation; donor availability and risk perception); and (6) Psychological processes and coping (anxiety, fear of death, body-image concerns, and active coping strategies such as social support, humor, positive reappraisal, and medication adherence).
Conclusion:
Adolescents with TM experience multidimensional challenges affecting their educational, social, psychological, and treatment-related lives. A holistic and developmentally sensitive approach is essential to support long-term adaptation and well-being.
Implications For Practice:
Healthcare professionals should integrate routine psychosocial screening and counseling into standard care, strengthen family-centered practices to support treatment adherence, and collaborate with schools to promote flexible attendance policies. Awareness initiatives targeting peers and educators may reduce stigma, while structured, age-appropriate counseling can support informed decision-making regarding long-term treatment and transplantation options.
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