Stepping Up Support for Young People with Chronic Illnesses
Dec 04, 2013
Ireland’s first website to help young people move from child to adult care services launched.
A new resource to help young people with long-term illnesses make the transition into adult health services has been launched by Alan Sothern, Irish International hockey player who has Type 1 diabetes.
Developed by researchers in Trinity’s School of Nursing and Midwifery, in partnership with young people with long-term illnesses, such as cystic fibrosis, Type 1 diabetes and congenital heart disease, SteppingUP.ie offers video testimonials, downloadable stories and tips and information on managing the transition, becoming more independent, knowing about medications and the differences between child and adult services.
Findings from a major research project being conducted at the School of Nursing and Midwifery have shown that young people with long-term illnesses, need better support and preparation to make a successful and positive transition from accessing health supports in a children’s hospital environment to an adult health system.
Pictured at the launch of SteppingUP.ie are (L-R) Darren O'Toole of the website co-design group; Professor Imelda Coyne, Principal Investigator; James Mohan, Heart Children Ireland and Alan Sothern, Irish International Hockey Player.
Professor Imelda Coyne, lead researcher for the SteppingUP.ie project and Professor in Children’s Nursing at the School of Nursing and Midwifery, Trinity College Dublin said: “At the moment in Ireland, there is very little information available to young people and their families on the transition process. 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.”
The project team adopted a participatory approach viewing the young people, with long-term illnesses, as a central element in the design and development of the site and its content. Young people took part in participatory workshops, one-to-one interviews and video recordings and were part of a co-design group.
Speaking about the challenges with the transition period to adult services, Dr Kevin Moore, Consultant Endocrinologist, Tallaght Hospital Dublin and Clinical Senior Lecturer in Endocrinology at Trinity said: “For young people, with long-term medical conditions, the period of transition from paediatric to adult services can be very difficult. We know that during transition, some patients lose contact with their health care professionals and may experience deterioration in their medical condition. The ‘SteppingUP.ie’ website will help young people to understand the process of transition and prepare for a safe and successful transfer of care to adult services.”
The project was funded by the Health Research Board and received advisory support from Children in Hospital Ireland, Cystic Fibrosis Ireland, Diabetes Ireland and Heart Children Ireland.
For media queries please contact Yolanda Kennedy, Press Officer for the Faculty of Health Sciences, Trinity College Dublin at firstname.lastname@example.org or tel: + 353 1 8963551