Illness experiences of children with haemophilia

Abstract

 This study aimed to clarify the disease-related experiences of children with haemophilia. It was a qualitative and recursive analysis of data obtained from semi-structured interviews with seven adolescent patients with haemophilia. The adolescents’ haemophilia-related experiences were organized into 4 categories, 12 subcategories, and 36 codes. The theme [haemophilia is part of my life] indicated that the respondents perceived the disease as a natural part of their lives. Starting to perform self-injections served as an opportunity to start [becoming aware of haemophilia and exploring it]. They went through great pains to learn how to prevent and stop bleeding (haemostatic management) while considering their relationship with this lifelong disease. Occasionally, their behaviour amounted to neglect of treatment and care. Eventually, serious events requiring haemostatic intervention brought them to terms with the limits imposed by their disease, and they understood that they would have to [cope with haemophilia one way or another]. This led them to revise their self-image, forming a new identity in the process, and realizing that [haemophilia is part of who I am]. In addition, their remarks suggested that the actions of their parents working with them to manage the disease helped them live a relatively normal life, and care activities proceeded according to the family’s combined schedule.