Silent Screams: Experiences of Caregiver Suffering by Parents of Children with Thalassemia: A Qualitative Study

Introduction: Thalassemia is associated with severe blood disorders and hemolysis. As is the case with other chronic diseases, parents who care for these children tolerate insufferable pain. Given the importance of suffering in nursing, understanding this concept seems necessary in order to provide appropriate care based on their experience. This study aims to understand caregiver suffering experience of parents of children with thalassemia. Method: This was a qualitative study conducted with a content analysis approach. A total of ۲۱ participants were selected from parents referred to the thalassemia ward of a university hospital in Kerman, Iran, by the theoretical purposive sampling method. Data were collected through recorded semistructured interviews that were transcribed verbatim and analyzed by the Lundman and Granheim’s content analysis method. Results: Data analysis resulted in the emergence of the four categories of living with hardship, stigma and labeling, parental concerns, and the role of a support network, all of which were incorporated into the parental suffering theme. Conclusion: The results indicate that parents as caregivers for children with thalassemia suffer intensely, but silently. Perhaps the results of this study can attract the attention of authorities and cause them to provide assistance for these parents.

Keywords:

Caregiver suffering , Parents , Thalassemia , Qualitative study