Living, Caring, Learning – Reflections on the therapeutic relationship in haemophilia care

Abstract Now nearing retirement, Regina, who was involved in establishing a haemophilia programme for children and young adults in the United States, reflects on the therapeutic relationship between haemophilia nurses and their patients. Having been involved in haemophilia nursing in the 1980s, Regina’s practice has been influenced by her experience of caring for young patients who were infected with HIV/ AIDS following treatment with contaminated blood products. She considers compassion and emotion in nurses’ relationships with their patients and highlights the key role of contact with colleagues and peer support, particularly during difficult times. While trust is an essential part of the therapeutic relationship and is valued by both the patient and the nurse, Regina reflects on how this can result in dependence. She points to the importance of setting clear boundaries and how this ensures that the patient establishes trust with the wider team or system delivering their care, not just an individual nurse. In her roles as clinical manager, haemophilia centre director and nurse coordinator, this is now part of the advice she shares with her own team. Despite a sense of caution about new therapies as a result of her experience during the 1980s, Regina has been involved in gene therapy trials and feels that the future looks positive for people with haemophilia.