In this bonus episode, we sit down for a conversation with Kathy Zebracki, a clinical psychologist from Shriners Children's, Chicago, and Julian Taylor from Toledo's National Paraplegic Hospital in Spain to learn all about the first-ever paediatric spinal cord injury Special Interest Group (SIG) for ISCoS.
Kathy and Julian reveal their ambitions of gathering an international team of experts to focus on this niche medical field, emphasising the need for a multidisciplinary approach.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
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 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".
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.
In this bonus episode, we sit down for a conversation with Kathy Zebracki, a clinical psychologist from Shriners Children's, Chicago, and Julian Taylor from Toledo's National Paraplegic Hospital in Spain to learn all about the first-ever paediatric spinal cord injury Special Interest Group (SIG) for ISCoS.
Kathy and Julian reveal their ambitions of gathering an international team of experts to focus on this niche medical field, emphasising the need for a multidisciplinary approach.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
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 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".
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.
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Speaker 1:
Welcome to our bonus episode of SCI Care. What really matters the Edinburgh Conversations. I am Dr Ali Jumous, the President of the International Spine Court Society. You are about to hear a selection of interviews recorded live in Edinburgh during the course of the 60 seconds ESCO scientific meeting. Each bonus track will have discussions with speakers, delegates, partners, ESCO's committee chairs and teams attending the ESCO's 2023. Join us to find out what the hot topics of the day are within SCI Care. We hope you enjoy listening.
Speaker 3:
Hi, my name is Kathy Zabracki and I'm a clinical psychologist at China's Children's Chicago, and I'm here with my co-chair for the Pediatric SIG, Julian Taylor.
Speaker 2:
Hi there. Yeah, I'm working in Toledo in Spain at a national paraplegic hospital. I'm a physiologist, I'm not a clinician, but because of my work in Stoke-Mandeville, we're now developing this paediatric spinal cord injury SIG for the first time for ISCoS.
Speaker 3:
So today we just want to take a little bit of time to just tell you a little bit about our SIG and hope that you're interested and that you could contact the ISCoS office if you're interested in joining.
Speaker 2:
Yeah, the objective is basically to get a bunch of international experts together from different backgrounds, very important, to work on paediatric spinal cord injury. And in particular, as we're ISCoS, we're looking for members from the six World Health Organisation regional areas around the world and also particularly from low to middle income countries.
Speaker 3:
And there are a few objectives that we want to have as part of the SIG. First off is going to be clinical care to provide the best clinical care for paediatric, for children with paediatric spinal cord injury. Another one of our initiatives is going to be education, and that will be both for the professional as well as the child with SCI. We're also interested in looking at prevention and as well as epidemiology.
Speaker 2:
Yeah, so these are three subgroups that we're discussing with this new group. W e put out a call, I think it was in June or July. We have around, I would say now, with our workshop today here in Edinburgh, we have at least up to 90 possible and confirmed around 50, which is a good number to start off with.
Speaker 3:
We're still working on finalizing the vision and mission, but those are some of the categories we're looking at. We are particularly interested in individuals from the Eastern Mediterranean region. Currently, we don't have any.
Speaker 2:
Yeah that's correct. But we do have a good representation from Europe, also from the Americas, Africa, Western Pacific and the Southeast Asia. So we are looking for people from the Eastern Mediterranean region.
Speaker 3:
And also we definitely want to make it multidisciplinary. Right now we have several physicians, rehabilitation specialists, but we're looking for other areas, such as psychology researchers, nursing OT and PT's. We have one pharmacist. We'd love to have more representation from that as well.
Speaker 2:
Absolutely and definitely an emphasis on more psychologists, more researchers like me, PhDs and the other allied professions as well.
Speaker 3:
And the other thing is that we are a paediatric sick but we are interested in looking at young adults. So perhaps if you only see a couple of patients (paediatric) patients or perhaps you see young adults please contact us. We'd love to have you.
Speaker 2:
Absolutely. You can get in touch with Marianne through the ISCOS and then they'll put you in touch with us.
Speaker 3:
And there's also opportunities to take leads of subgroups. So if there's anybody interested in taking a lead on the clinical guidelines, translational research, there's lots of opportunities for you.
Speaker 2:
Yeah, and not just the obvious subgroups, but also anybody who wants to help out with the social media or the webpage, contacts with industry or even setting up clinical trial. We had our workshop this morning. I would say at least 50 people were in the audience, how did you find
Speaker 3:
I thought it was great. We had great discussion, it was very engaging. We had people from all different areas of the world, different disciplines. I think we have a lot of opportunity for growth and just increased awareness.
Speaker 2:
Yeah, and for me as being a non-clinician, it's very interesting to look at what you guys are also pulling up as priority areas as well. My area is personal - I'm working on pain, but it's interesting to see that pain is a very important area for kids as well, and, as we're actively doing pain projects in children at the moment, this is very interesting for me personally.
Speaker 3:
I think two other ideas that came out pretty clearly is the need to figure out how to collaborate across countries and institutions. There's different regulations and that can make things challenging, as well as measurement. Measurement's an issue, not even just languages, but just what people find important and different. And then the other piece that came up very clearly is the need for transition and how to prepare paediatric patients into the adult world. When do we start that? How do we get institutional involvement?
Speaker 2:
Absolutely. I mean, and the priority setting with research priorities that we saw in the organisation at Stoke Mandeville, obviously concerns from parents and caregivers with parenthood expectations for their kids is a big issue. So it's also interesting to see that also caregivers and parents need a lot of support as well. I think.
Speaker 3:
And I think today's Guttman lecture with Professor Ashley Craig pointed out a lot of great areas that we could bring to the paediatric population. Currently we're working our institution's working on paediatric appraisals, which Professor Craig mentioned this morning. The caregiver support, and how do you also provide within a paediatric institution, how do you provide care for the caregiver, which is so very important?
Speaker 2:
Absolutely. And then going back again to pain and what we've seen (it's not published yet.) But what we've seen, Kathy, is that the psychological parameters, such as catastrophising depression and coping. All these aspects need to be worked on, also for the paediatric population.
Speaker 3:
And I think what's so exciting about this meeting is hearing people's different perspectives, different ways of looking at the same problem, kind of coming up with out of the box interventions and treatments, and strategies for moving forward.
Speaker 2:
So I think one of the things we now need to do with development, with this SIG going forwards, is maybe some funding also from industry or from public resources to get a group going. It's going to be quite a big SIG and there's a lot of interest and a lot of objectives, so if we have external help there, it would be good as well, I think.
Speaker 3:
Another challenging piece will be setting up Zooms cross country while we're thinking around three o'clock.
Speaker 2:
It's three o'clock London time, so that is the best time to do it, and I think we did it once at three o'clock and it went okay, I think we did yes, so that's going to be a challenging.
Speaker 3:
That'll be a challenging. We're also hoping to have a tab or something on the website, on the ISCOS website for more information about paediatric SIG
Speaker 2:
Yep, and I think another aspect here, as I am a physiologist, I'm not a clinician, so I'm a little bit shy about being a chair, but I think the idea also, this SIG is so big it's paediatric spinal cord injury that we need to share the chairs of this SIG. So at the moment we have Kathy. As you know, we'll be talking about having you a psychologist, researcher and also an MD as well. So I think this is going to be good to share the SIG so it's not just dominated by psychology or researcher or MD.
Speaker 3:
And the other thing is to work with other organizations so that we're not rebuilding the wheel, just kind of collaborating with what's already been out there.
Speaker 2:
Absolutely The Howard Steel Collaboration Network, we will be working with them, of course. In fact, many of you are working with the Howard Steel ISCoS has a different emphasis on looking at research or care around the world and also getting help to low to middle income countries.
Speaker 3:
Well, we hope you can join us. Thank you.
Speaker 1:
We hope you have enjoyed listening to our bonus collection of Edinburgh Conversations from ISCoS 2023. As always, you can listen to these episodes and all episodes from the podcast provider of your choice. If you have any questions or suggestions, we would love to hear from you. Email them to admin at admin@iscos. org. uk - We also invite you to the 63rd ISCoS Scientific Meeting from the 22nd to the 25th of September 2024. To save the date, more details will follow on the 2024 themes submitting an abstract and early bird registration. Thank you for listening.
