Living, Caring, Learning – Addressing challenges in the transition to adult care

Abstract

Abstract Greta, a specialist nurse at one of the largest haemophilia treatment centres in the Netherlands, reflects on the role one particular patient played in helping to reshape her centre’s approach to the process of transition from paediatric to adult care. The patient, a young man with severe haemophilia B and an inhibitor, experienced frequent bleeds and venepuncture was sometimes difficult. He continued to be reliant on his mother to administer injections and order his treatment. Greta considers the importance of ensuring young people transitioning to adult care have the knowledge and skills they need to manage their haemophilia while balancing this with the reality of an individual’s circumstances, often including the ongoing role of parents in their lives as supporters and caregivers. She suggests that transition is best approached as a gradual process rather than an event, reflecting on how this helps to build trust between the new health care team and both the patient and their parents. She also points to the importance of supporting parents through the transition process as needed. Greta is clear that an approach to care that seeks to understand individuals and acknowledges the feelings of everyone involved can make a difference in enabling successful transition to adult care and in patient care more generally.