Making the change from child to adult healthcare services can be a difficult and daunting experience for young people with long-term illnesses, but a new website is helping to smooth this transition.

The Stepping Up website, steppingup.ie, is the first of its kind in Ireland and its aim is to provide young people, aged 13-18, who have long-term illnesses with a useful resource in the form of information, key tips and videos to support them in preparing for, and making the move to, adult healthcare services.

This project emerged from, and builds on, preliminary findings from a larger project, TRYCIS, which investigated the transition experience of young people, their parents and healthcare professionals.

Both projects are led by Prof Imelda Coyne of the school of nursing and midwifery at Trinity College Dublin and are funded by the Health Research Board. The project focuses on cystic fibrosis, type 1 diabetes and congenital heart disease.

Making the change

“The findings of our research indicated that many young people had difficulty in making the change to adult services, they felt they were not prepared and did not have many resources in terms of information and material,” says Coyne.

“Young people at this stage in their lives are leaving home, starting college or jobs and relationships, so it’s a difficult time to change from child to adult services. Sometimes they stop going; sometimes the service does not chase after them; and sometimes they drop out. It’s a big problem if they drop out and do not manage their illness.”

The Stepping Up website, which recently won a Crystal Clear MSD Health Literacy Award, and the materials were co-developed with young people as an innovative way of providing information directly relevant to them.

The website contains information about aspects of the transition process and is presented in several formats.

Young people can watch and download short videos of transition stories, which cover such topics as preparing for transition, the first visit to the adult clinic and talking to the healthcare team.

They can also read or download leaflets that provide useful tips and information about becoming more independent, knowing about their medications, and the differences between child and adult clinics.

The hospitals that have taken part in the project are the Mater, St James’s, Tallaght and St Vincent’s in Dublin, and Galway University Hospital.

“This website is one way of helping equip young people with knowledge and skills so that the move to adult services is made a little easier.

“Providing young people with clear information and anticipatory guidance are simple changes in practice that may lead to improvements in transition experiences,” says Coyne.

Darren O’Toole, who is 23, was diagnosed with type 1 diabetes at the age of five and attended the children’s diabetes clinic at Our Lady’s Hospital for Sick Chilidren, Crumlin, every three months. Now studying biotechnology at NUI Maynooth, he made the transition to adult care at the age of 18.

“I was told on my third-last appointment at Crumlin that I would be changing over to the adult services at St James’s Hospital. The staff from St James’s came to meet me in Crumlin once but, apart from that, there was very little preparation.”

Daunting

“Going to my first appointment at St James’s was very daunting; it was like the first day of school. I had no idea where I was going and I was the youngest person there.”

O’Toole was one of the young people involved in the design of the Stepping Up website. He highlighted the need for more information about what the transition would entail, and recommended that tours of the adult facilities should be provided before the first appointment. This service is now available on the website.