Living in a misty marsh: A qualitative study on the experiences of self-care suffering of patients with thalassemia

BACKGROUND: Thalassemia major is the most common hereditary anemia in Iran. Thalassemia major patients require lifelong care and suffer much pain during self-care. Knowledge of the nature, meaning, and impact of suffering from the perspective of patients is needed to determine which interventions are helpful. This study was designed to understand the experience of suffering in patients with thalassemia. MATERIALS AND METHODS: This was a qualitative study conducted with content analysis method. In the present study, 21 patients with thalassemia were selected by purposive sampling. The research was performed at Kerman Samen Alhojaj Medical Center, Iran, in 2013. Data collection method was conducting unstructured interviews using open-ended questions and field notes. In addition, data were analyzed using qualitative content analysis and conventional approach. RESULTS: Data analysis resulted in the emergence of the four central categories of physical exhaustion, mental and spiritual restlessness, society's behaviors and beliefs, and surviving a hard life, which were the suffering themes of the patients. CONCLUSIONS: Results showed that thalassemia in the physical, psychological, social, and spiritual aspects is very stressful for patients. Moreover, culture plays an important role in the patients’ experience of suffering. Results of this study can help nurses improve nursing care to alleviate suffering based on these experiences.