'I don't want to hurt him.' Parents' experiences of learning to administer clotting factor to their child

Abstract

Summary: To explore the experiences and educational needs of parents learning to use an Implanted Central Venous Access Device (IVAD) to administer clotting factor to their child with haemophilia. Parents of children with haemophilia who had learnt to administer clotting factor via IVAD attended focus groups to discuss their experiences of the learning process. Data were transcribed and analyzed thematically. Parents described distress and trauma in dealing with the diagnosis and treatment of their child's haemophilia. It was within this context that parents began the IVAD education process. Four major themes emerged from the data: dealing with fear and anxiety; a supportive learning environ..