Young people with long-term conditions who are making the transition from child to adult health services can now look to a new resource for information.
Steppingup.ie is a new website that has been developed by researchers in Trinity College Dublin's School of Nursing and Midwifery, in partnership with young people with long-term conditions, such as congenital heart disease, type 1 diabetes and cystic fibrosis.
According to Prof Imelda Coyne of Trinity College, currently in Ireland, there is ‘very little information' available to young people who are making the transition to adult health services.
"This website is the first of its kind and we hope that it will be useful for young people who are thinking about and planning to make the transition to adult services, as we know from our research that the move can be difficult for some. Steppingup.ie is one way of helping equip young people with knowledge and skills so that the move to adult services is made a bit easier," she explained.
Initial findings from a major research project at Trinity's School of Nursing and Midwifery have shown that young people with long-term conditions need better support to make a successful transition from attending children's hospitals to entering the adult health service.
The team behind the website ensured that the views of young people were heard via workshops and one-to-one interviews. Young people also had input into the design of the site.
Speaking about the transition process, Dr Kevin Moore, a consultant endocrinologist at Tallaght Hospital, pointed out that this can be a ‘very difficult' time for young people.
"We know that during transition, some patients lose contact with their healthcare professionals and may experience deterioration in their medical condition. The website will help young people to understand the process of transition and prepare for a safe and successful transfer of care to adult services," he commented.
Launching the website, Irish international hockey player, Alan Sothern, who has type 1 diabetes, said he was delighted to see a website solely dedicated to young people making the transition into adult healthcare.
"I feel this is something I certainly would have benefitted from during that time. With so many changes happening around this age, the worry of transitioning from childcare to adult services in as seamless a manner as possible is something that shouldn't impact those affected, which prior to this website, it may have," he said.
The project was funded by the Health Research Board. The site can be viewed here