How to Navigate from Childhood to being an Independent Adult in SCI Care

SCI Care: What Really Matters

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'It’s about making sure that the family can see how that's going to fit in with their child for the here and now, but also I'm very much thinking I've got to hand this child on to adult services with two good kidneys. It's about not just the continence, but keeping the kidneys healthy into adulthood.' – Dr Allison Graham

Welcome to our next podcast instalment as we continue to cover the topics that matter within the care of SCI, engaging experts from all over the world.

In this episode host Catharina Cziczkat of Wellspect, Germany is joined by Jens Larsson from Skånes University Hospital SUS, Sweden and Dr Allison Graham of Buckinghamshire Healthcare NHS Trust, UK, to discuss the challenges of bowel and bladder care in patients navigating from childhood to becoming independent teenagers and adults. What’s the best way to go about this when dealing with sensitive areas such as catheterisation?

To help us, our panel share their knowledge and experience, explaining how we make the transition to adult services workable for families with children in need of bladder and bowel management. What can we do to help teenagers to become independent, removing the responsibility from parents and placing this onto themselves? How do we motivate them? Building relationships and trust with families is key to achieving better quality of life in the short term, as well as working towards improving function and kidney health in the long-term. The ultimate goal is to ensure the transition from child to teenager is as smooth as possible, giving patients the tools and knowledge to empower them whilst avoiding complications.

'It's an embarrassing subject and, It's an area that you don't as a child, or even as a parent want to talk about. But you need to build that confidence with the family and, make them comfortable in talking to you about it as well. That's something I think is important, to give the families and the child as much information as possible.' ~ Jens Larsson

Our panellists wholeheartedly agree that by working closely with the child's family whilst directly involving the child, treating our patients as individuals, and sharing all the available information, the process can be effectively managed, ensuring the transition from child to young adult to an independent adult is successful.

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The SCI Care: What really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Partnership and collaboration are key to achieving this vision. Our episodes include expert guests, persons with lived experience and representatives from the industry supporting SCI care.
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ISCoS 2024 will take place in Antwerp, Belgium 22 - 25 September 2024
Contact us directly with any questions or comments at [e-mail]

Chapters

1. How to Navigate from Childhood to being an Independent Adult in SCI Care (00:00:00)

2. Introduction to the topic and guests (00:00:39)

3. Catharina Cziczkat – Allison Graham: How did you start working in this area? First with adults, and then with children. (00:03:39)

4. CC – Jens Larsson: what were your reasons for working with children with bladder disorders? And what were your expectations? (00:06:47)

5. The importance of seeing bowel and bladder problems as linked and looking other factors such as hand function and family dynamics when treating patients in this area. (00:07:51)

6. CC – AG: What do you think is the main challenge when it comes to teaching intermittent catheterization to children. How do you start with them? (00:11:26)

7. CC – JL: What is your opinion on this topic [the challenges in this area]? (00:16:11)

8. CC – AG & JL: What tools do you use to keep your patients motivated? (00:20:06)

9. CC – AG & JL: How do you work with the children with functional bladder diseases without motorical diseases of the hand? (00:28:42)

10. CC – AG: How often do you offer follow up appointments for rehabilitation, or for patients to come into your hospital again? (00:30:42)

11. CC – JL: How do you manage follow-up Jens? (00:32:30)

12. CC – JL: What is your key message about starting therapy and staying in therapy with a trans-anal irrigation? (00:34:31)

13. CC – AG: Allison, what is your take home message for our listeners? (00:38:17)