Behind the scenes of haemophilia care

Insights from a Nurse Preceptorship

NIKKI WATERS AND RHIANNON STAVELEY-SMITH

Nikki Waters is Clinical Nurse Consultant Haematology at the Sydney Children’s Hospital, NSW.

Rhiannon Staveley-Smith is Clinical Nurse Specialist Haematology/Haemophilia at The Children’s Hospital at Westmead, Sydney, NSW.

As paediatric haematology nurses at the Sydney Children’s Hospitals Network, our day-to-day work is focused on children and their families. We support families through early diagnosis, teach medication administration, and help young people and families build confidence in managing their condition. We often talk with families about ‘the future’, including protecting joints, building independence, and preparing for adult life. But until recently, we had limited opportunity to see what haemophilia care looks like once young people leave paediatric services.

TRANSITION FROM PAEDIATRIC TO ADULT CARE

In December 2025, we were fortunate to attend a two-day haemophilia nurse preceptorship in Brisbane. This experience gave us the chance to step away from our usual roles and spend time with both paediatric and adult haemophilia teams. For the bleeding disorders community, these opportunities are important because they help ensure nurses across Australia are learning from one another and strengthening the care we provide to people at every stage of life.

The preceptorship was shared between Queensland Children’s Hospital and the Royal Brisbane and Women’s Hospital, with one day in the paediatric Haemophilia Treatment Centre (HTC) and one day in the adult HTC. This structure allowed us to see how care evolves over time and how both services work closely together behind the scenes to support people with haemophilia as their needs change.

One of the strongest messages from both teams was that transition from paediatric to adult care is not a single appointment or sudden change. Instead, it is a gradual process that starts years earlier. Health professionals work together to help young people slowly build confidence, understand their condition and treatment, learn to manage their own treatment, and take increasing responsibility for their care. This preparation is key to helping young people feel supported, rather than overwhelmed, when they eventually do move to adult services.

PREPARING FOR ADULTHOOD

Spending time in the adult HTC was a powerful and eye-opening experience. We saw firsthand the long-term impact haemophilia can have, particularly when joint bleeds occur over many years. Meeting adults living with chronic joint disease reinforced why early education, bleed prevention, and treatment adherence during childhood and adolescence are so important. These experiences directly shape how we talk with families and young people about long term health and why certain aspects of care matter so much.

One particularly meaningful moment during the preceptorship was a conversation with a young man living with haemophilia, who shared how his priorities had changed over time. As his lifestyle, independence, and responsibilities evolved, so too did his approach to treatment and decision-making. Observing the discussion between the patient, nurse, and doctor highlighted how care works best when decisions are shared by balancing medical needs with what matters most to the person living with haemophilia. This kind of partnership is central to providing care that truly fits people’s lives.

Another highlight was meeting a young person who had recently transitioned from paediatric to adult care. Hearing directly about what worked well, what was challenging, and what made the process easier provided valuable insight. His experience reinforced the importance of strong relationships, clear communication, and gradual preparation, which are messages that continue to guide how we support families in our own service.

THE VALUE OF TEAMWORK

We also had the opportunity to sit in on haemophilia team meetings focused on planning for surgery and coordinating complex care. While patients may only see a small part of this process, these meetings are where nurses, doctors, and allied health professionals carefully plan treatment, share information, and anticipate risks to keep care safe and seamless. Seeing this teamwork in action reinforced how much coordination happens behind the scenes to support people with bleeding disorders.

Overall, this preceptorship reminded us that high quality haemophilia care relies on strong collaboration between paediatric and adult teams, ongoing learning, and listening closely to the experiences of people living with bleeding disorders. Opportunities like this help ensure that care continues to improve and remains centred on the needs, goals, and voices of the community.

We are very grateful to the Brisbane paediatric and adult haemophilia teams for their generosity and willingness to share their knowledge and experience. The lessons learned from the experience will continue to shape how we support people with bleeding disorders and their families, both now and into the future.