Sharon Levy, CPD Lead for the Data Driven Innovation Talent Team at Edinburgh University’s Usher Institute, joins co-author Caroline Robertson to discuss the journey to young adulthood for children with disabilities or long-term conditions.
Caroline, a nurse of 42 years who has specialised in continence with adults and children, has worked with Spina Bifida Hydrocephalus Scotland on and off over the last 10 years. Sharon has been active in supporting the charity’s research and development efforts during this time. Together they discuss methods for easing the transition from paediatric to adult services.
The journey from childhood to young adulthood can be a rocky road for anyone. For the young person; the family/carers; and the professionals involved. How – and how well – transitions are thought about, planned for, and accomplished truly matter to all concerned. A great transition can usher in new opportunities, wonderful experiences and an improvement in health, wellbeing, and life chances. A terrible transition can be traumatic and damaging.
That’s true for everyone. But it is especially the case for children with long-term conditions and disabilities as they move toward adulthood. Leaving behind familiar people, places and services they have known throughout childhood – and being forced to enter a new world of adult oriented systems can feel to some like a ‘bridge too far’ and an unwelcome set of new challenges.
We want to ensure that this transition is as a positive and beneficial an experience as possible for the children, young people, adults and families who are the focus of our working lives.
At Spina Bifida Hydrocephalus Scotland, we are devoted to support a specific group of people living with these particular long-term health conditions.
Spina bifida and hydrocephalus are complex neurological conditions with a myriad of clinical presentations. The nurse-led health and wellbeing service is an integral part of a national provision of support offered by a small group of clinical staff. We may welcome the European champion of wheelchair racing (coming for an annual check-up) or a young person and her mum seeking advice about continence and self-care. Maximising abilities within the constraints of disabilities is the motto of our nursing practice.
We also wanted to shine a light that would illuminate positive pathways from childhood to young adulthood for others with complex needs facing similar transition journeys. As a small team with finite resources, we welcomed funding from the Burdett Trust for Nursing to develop a board game for and with young people (and their families/carers) in Scottish community settings.
This Burdett grant gave us an opportunity to acquire new skills, expand our reach and anchor our ethos of person centeredness. During a global pandemic we found solace in creating a fun, meaningful, and innovative game. Nursing in a Third Sector organisation receives less public attention than the NHS, but the agile and supportive structure of a charity lends itself to unique practice and transformative professional development. Indeed, this nurse-led project was a perfect match to what we aspire to accomplish and what those we serve long to experience. From the outset, we were clear this transitions project and its unique tangible outcome had to be co-produced with our service users and the key people in their lives.
One of our first tasks was creating a project framework, a governance mechanism, and an advisory group. We were grateful to all its members, including Dr Jonathan Sher of QNIS, for their guidance and advice. We also reviewed the current global literature on the transition from paediatric to adult services – and we synthesised the examples of best practice we could find.
This new project built upon the foundation of work we carried out previously. Thanks to the Burdett grant, we were able to recruit a research student as an intern who contributed significantly to our project’s progress. While there was substantial desk research accomplished, our priority was to capture a series of insightful and intimate stories of lived experience about what did (and did not) succeed in the transition to adult services.
Since this project began pre-pandemic, we had planned face to face facilitated story-telling workshops, across Scotland. These plans had to be shelved when lockdown was announced. Shifting to online therapeutic interactions, on the other hand was not a big hurdle to us, as we have engaged in remote consultations for many years; ever since SBH Scotland conducted a pilot programme offering continence advice using Telehealth.
We did encounter new challenges in running group sessions online, where young people and carers were encouraged to collaborate and share their emerging stories. Similar challenges were faced when we brought a group of young adults and carers to help us design the game board. More details about the ‘game jam methodology’ we used to develop our collaborative game are available online: Transition Project Report
As a collaborative activity, we have co-produced a printable game about the transition to adult services that can be downloaded free of charge by a wide range of users, including young people, families and healthcare professionals. By enabling players to add content to blank cards, aligned to their specific transition pathway or change text on the cards themselves, the game offers a way to engage and support young people with a wide variety of other long-term conditions. The flexible format could also be used to translate this transition game to languages other than English.
We want others to hear the stories of our users; reflect on their experiences; and get tools and knowledge that have the potential to improve care outcomes. Our freely available online learning has digital stories embedded in the content to enable practitioners to hone practice and support continuous professional development. Working together to improve the chances of successful and satisfying transitions for all concerned, will support young people who negotiate this significant milestone towards adulthood and independence.
Late breaking news! We are very happy to report that the Burdett Trust for Nursing has just provided a new grant for SBH Scotland to expand and extend our project over the next 18 months. This will allow us to continue to strengthen nurse-led digital services, especially around the three milestones in shifting from paediatric to young adult provision: Readiness, Completion and Success. We want to learn from, and share with, other community nurses throughout Scotland who are seeking to improve transitions for young people with long-term conditions.