Lack of Supportive Systems for Parents of Children with Thalassemia: Forgotten Part of Health System

Background: Families of children with thalassemia may become exhausted due to the frequent hospitalizations of the child for blood injections and because of spending a great deal of time learning about and managing this disease. Objectives: The aim of this research was to explain supportive systems for parents of children with thalassemia. Methods: This study was done at Hajar hospital in Shahrekord in 2017. Content analysis was used. Ten samples consisting of 5 mothers, one grandmother, two fathers, and two nurses were selected purposely in this study. A semi-structured, face-to-face interview was used. Results: Based on data analysis, three categories of the need for supporters, lack of consultative services, and economic problems were obtained. Conclusions: Since thalassemia is a chronic disease, the parents of these children need support and consultative services throughout their life. It is necessary for authorities and healthcare planners to take measures in order to support parents of children with thalassemia (the forgotten part of the health system). The consultant-trained nurse has an important role in supporting these families.