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

When we take the time to listen to and understand them, the patients we care for as haemophilia nurses can contribute a lot to how we adapt and improve our clinical practices. There is one boy in particular who I will never forget, and who had a lasting impact on the way I support young people who are making the transition from paediatric to adult care.

Joris (a pseudonym) was almost 18 when I met him, but he looked much older. He had severe haemophilia B with an inhibitor, which is quite rare. He was very direct, and his humour and sense of irony appealed to me. The first time I saw him for a regular appointment at the adult hospital we briefly discussed the management of haemophilia but he much preferred to talk about football, school and his mates. In contrast, his mum wanted to know everything about his care, his laboratory results, and changes in treatment or support now that he was under adult care – how to order clotting factors, who she could call in acute situations and all the names of the new haemophilia team.

Transition is not just about the patient and care team getting to know each other, families are very involved too. Joris’s mum continued to order his medication, made repeat appointments, collected his medication, did his home treatment and wrote the administration neatly in his logbook. Joris had a lot of bleeds, and venepuncture was sometimes difficult.

Just before the school holidays Joris came on an organised sailing weekend with a group of patients of the same age and a few medical staff members from the centre – I was one of them. In no time at all, those very different young men with haemophilia were a team and Joris set the pace – telling jokes and handing out sweets! The weekend was fun, the sun was shining, and Joris appreciated and understood all the boys who were there.

During the weekend, when it was time for prophylactic treatment, I assisted Joris with the injections. I noticed he was embarrassed that he didn’t do it himself. We invented a ruse to explain why I was doing his injections for him, and he agreed to follow a training course when he got home. He told me: “My mother does it mostly, I try it sometimes but I often get it wrong, I want to learn it again, because I want to go to Spain with my friends.”

In his injection bag he kept a silver charm in the form of a guardian angel – his mother had given it to him to keep him safe. On the outside he was such a big guy, but underneath that he was an insecure boy.

Transition from paediatric to adult care can be more complex for some patients than others. They all deal with it in different ways, including the parents – many mothers may seem over-protective ^[4]. I have known patients in their forties who live with their parents, and the mothers still order their medication. Is that overly protective or, if both mother and son are happy with the arrangement, who are we to say they should do things differently? Having said that, we need to make sure our patients are equipped with all the knowledge and skills they need to look after themselves on their own and manage their haemophilia in a way that is individualised and safe ^[4,5].

At the centre, we see transition as a process, not a stage. We start preparing children for transition when they are 12 years old, and find the ‘Ready, Steady, Go’ programme of checklists and questionnaires useful tools during the transition years ^[6]. Every second year, we organise a Transition Day, where paediatric and adult patients aged 14-23 years come together, along with their health care teams, so that everyone gets to know each other in an informal way. We also hold activity days during the transition period, with exciting things to do, such as car racing and fencing, as well as educational sessions about haemophilia and latest treatments.

As a mother, I know how hard it is to let go. It’s not surprising that some parents of children with a bleeding disorder find it so difficult. We can tell them that everything will be fine and encourage them to trust the new team caring for their children. But time to gain this trust is the most important thing – they need to experience their children growing up, being independent and doing well. When adolescent children reach the stage of transitioning to adult care, we invite parents to come to appointments, and also have parent-only focus group discussions where we talk about ‘letting go’ with our social worker and discuss the issues that concern them the most.

We used to slightly ignore parents when their children started coming to adult clinics, asking them to stay in the waiting room and not to be in the consultations. These days, we invite parents to come in, as long as the young adult patients give their permission – it’s their decision. Some parents just come to the first adult appointment while others continue for some time. My experience with Joris– understanding his feelings, the difficulties he experienced, and the importance of his mother’s support – contributed to this change. Tremendously sadly, an accident that left Joris with fatal injuries meant that I never did teach him to treat himself and see him become more independent. But his legacy helps all of us at the centre to support young people in successfully making the transition from children, dependent on parents to help them live with a bleeding disorder, to independent adults ready to look after themselves.

Joris’s mother came back months later to deliver his remaining medication. She said that during the last days of his life I’d been a haven for them, thanked me for this and gave me his guardian angel charm. This gesture comforted me and it became clear to me again that, in nursing, we can make all the difference.