Transition from the paediatric to adult healthcare systems is a challenging but necessary process for young people with ongoing health conditions. It can be a time of uncertainty, for young people and their families, and often causes anxiety and difficulties when the process isn’t planned and undertaken effectively. Given that transition is a high priority for many young people and their families, the International Children’s Advisory Network (iCAN) Youth Council have decided to undertake a piece of youth-led research, in partnership with Connecticut Children’s Medical Center, to explore this important topic further.

Many previous studies in the area of transition have grouped family and youth needs together, when it may be possible that young people identify different needs from their parents and carers. Furthermore, there are few studies that take into account the stage of transition that young people are currently in, especially with regards to their opinions on what they wish to see improved in the transition process. This youth-led study hopes to assess the differences in needs of young people at various stages of transition – including before, during the transfer, and after. Existing transition research tends to focus on a single condition area or clinic; however, the iCAN Youth Council feel that a broader look at transition needs in general will allow common priorities to be identified, which will be useful for the transition of all young people, and not just those with specific conditions. These views are being collected through an online survey, accessible below.

Ultimately, it is hoped that this study will inform the design of paediatric to adult transition programmes around the world, by highlighting the current needs of young people undergoing these transitions.

How to take part

If you are a young person, please feel free to complete the youth survey: https://www.surveymonkey.com/r/LT2ZRQK 

If you are a parent or carer, please feel free to complete to parent survey: https://www.surveymonkey.com/r/LRPKD69

Written by simonrstones

Simon R. Stones BSc (Hons) is an award-winning patient advocate, consultant and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, and board member of the European Network for Children with Arthritis (ENCA) and the European Network of Fibromyalgia Associations (ENFA).

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