Living with Iron Overload in Children with Thalassemia: Lived Experiences and Psychosocial Adaptation

Abstract

Thalassemia with iron overload is a chronic disease that has long-term effects on the physical, mental, and social development of children, particularly during the school years, a crucial period for developing self-esteem. However, in-depth knowledge of the lived experiences of these children remains limited. This phenomenological qualitative research aimed to explore the lived experiences of pediatric patients with thalassemia and iron overload. The participants were 11 children aged 10–15 years purposively selected from the pediatric thalassemia clinic and pediatric ward of a provincial hospital. A semi-structured interview guide was used to collect data through in-depth interviews. The data was analyzed using Colaizzi's method and data reliability was ensured through triangulation and reflective saturation.
The findings revealed three major themes: 1) awareness of the illness and the impact of iron overload, 2) living and adapting under the limitations of a chronic condition, and 3) hope, empowerment, and social support for enhanced quality of life. Children understood the disease according to their developmental level, recognized its physical impact, and made efforts to live like their peers. Support from family and the healthcare team played a significant role in fostering hope and motivation for self-care. The study concludes that holistic nursing interventions integrating emotional support, family-centered care, and hope-enhancing strategies are essential for promoting sustainable well-being among children with iron overload conditions. The study suggests that nurses should integrate psychosocial care with physical treatment to enhance hope and mental resilience, thereby promoting a sustainable quality of life for children with chronic diseases. Limitations of this include single-site recruitment and a relatively small sample size. Future research should investigate intervention models designed to enhance resilience and promote long-term psychosocial outcomes.