How to Navigate from Childhood to being an Independent Adult in SCI Care
06/07/22 • 41 min
'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.
Contact us directly with any questions or comments at [email protected]. You can also join the conversation on social media @ISCoSMeetings and @WellspectHC. And we hope to see many of you in person at the ISCoS 61st Annual Scientific Meeting this September in Vancouver.
If you enjoyed this podcast, please rate, review and subscribe with the podcast provider of your choice. This show is brought to you by ISCoS - you can follow us on Twitter
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
You can follow us on Twitter and LinkedIn
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".
Contact us directly with any questions or comments at [email protected]
'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.
Contact us directly with any questions or comments at [email protected]. You can also join the conversation on social media @ISCoSMeetings and @WellspectHC. And we hope to see many of you in person at the ISCoS 61st Annual Scientific Meeting this September in Vancouver.
If you enjoyed this podcast, please rate, review and subscribe with the podcast provider of your choice. This show is brought to you by ISCoS - you can follow us on Twitter
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
You can follow us on Twitter and LinkedIn
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".
Contact us directly with any questions or comments at [email protected]
Previous Episode
Neurogenic Bladder Management: Factors for Success
Welcome to the second episode of series 3 – SCI Care: What really matters.
Susie Charlifue introduces this episode with Tracey Tattam, a Nurse Educator at the Spinal Injuries Unit Queensland, Australia; Veronika Geng, Head of the Advisory Centre for Nutrition and Digestion for Spinal Cord Injured People in Lobbachand, Germany and Rachel Skews a Urology Nurse Practitioner, North Bristol NHS Trust as they share their wealth of knowledge on Neurogenic Bladder Management.
In this episode, our panel discuss the importance of education for people with spinal cord injury, their family members, and importantly, the clinicians who manage their bladder needs. We learn about the various types of neurogenic bladder, the various management options available to people. The importance of having a bladder management schedule that fits best with the person's life and lifestyle approaches to complication prevention and several tips for successful bladder management and hygiene. The importance of maintaining a fluid balance was emphasized. And it'll be varying depending on the bladder emptying technique.
Some people may need more fluids, some less, but monitoring is essential. We've also gained some information regarding bladder cancer in this very unique population. And we know that this warrants attention. All panellists agree on the critical importance of patient choice throughout the process of choosing bladder management programs, working as a team with the person who has the spinal cord injury is the approach that clinicians must embrace.
Ultimately, it is that person's independence, quality of life and ability to engage in activities that are the goals.
Contact us directly with any questions or comments at [email protected]. You can also join the conversation on social media @ISCoSMeetings and @WellspectHC. And we hope to see many of you in person at the ISCoS 61st Annual Scientific Meeting this September in Vancouver.
If you enjoyed this podcast, please rate, review and subscribe with the podcast provider of your choice. This show is brought to you by ISCoS - you can follow us on Twitter @iscosmeetings, produced and directed by Heather Pownall of Heather's Media Hub @heathershub
*The opinions of our host and guests are their own.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
You can follow us on Twitter and LinkedIn
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".
Contact us directly with any questions or comments at [email protected]
Next Episode
What makes Intermittent Catheterisation Safe? Reducing the Risk of Complications for Long-Term Use.
In this episode of ‘SCI Care: What really Matters’ we talk about how to reduce the risks associated with long-term intermittent catheterisation. Our host is John Thomson, clinical education manager for Wellspect, UK. John has worked in the medical device industry for over 20 years, having formerly been a nurse, and has worked in the field of intermittent catheterisation for approximately seven to eight years. He is joined by Diane Newman, a urology nurse practitioner from the US whose current practice involves the evaluation, treatment and management of bladder disorders, including the avoidance of dysfunction and related problems involved with the use of catheters and other devices. Our second guest is Veronika Geng, the head of an advisory centre for nutrition and digestion for spinal cord injured people in Lobbach, Germany.
What are the practical tools and techniques for catheterisation and the design properties of different catheters which can reduce complications for long-term users? Our guests share their expert insight in this area. We also consider the pros and cons of sharing this information with patients and the importance of giving them informed choice when it comes to this very personal area of care.
We discuss best practice for healthcare practitioners in ensuring that long-term users of intermittent catheters are performing the procedure safely, including the importance of the teaching, learning and dissemination of best practice guidelines for clinicians at all levels who might be involved in this kind of patient care. A vital part of this is remembering that each patient is unique and will be at a different stage of both their mental and physical recovery. Practitioners must keep this in mind when explaining the benefits of intermittent catheterisation over indwelling catheter use and work together with patients to make the process work for them.
Our patients are at the heart of everything we do, and SCI patients are part of a unique cohort who are dealing with a life-changing, but not necessarily a life-limiting, prognosis. Helping them come to terms with all aspects of their ongoing care and the practicalities of day-to-day life is one of the most challenging but rewarding parts of our work in SCI care. By supporting our patients in having the best possible health and care outcomes we can play our part in giving them long-lasting quality of life.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
You can follow us on Twitter and LinkedIn
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".
Contact us directly with any questions or comments at [email protected]
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