SCI Care: What Really Matters
SCI Care: What Really Matters
SCI Peer Support: The what, the how, and the why?
The Engagement and Peer Support SIG would like to bring the audience through the story of peer support from a historical perspective to its research implications. Teri, Erik, Shane, and Gill will provide how peer support came to be, what it looks like and how different it is, the magic behind it, and how to transform that magic to measurable outcomes and impacts.
Speakers
- Shane Sweet, Associate Professor, McGill University, Canada
- Gill Hilton, Austin Health, Australia
- Erik Berndtsson, Outreach Development Manager, RG Active Rehabilitation, Sweden
- Teri Thorson, Manager, Peer Coaching and Outreach, SCI British Columbia, Canada
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
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Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Welcome, welcome to the uh NISCOS podcast, uh focusing on the engagement in peer support's sake. Um today we're gonna take you on a journey through the story of peer support, how it began, why it matters, and how it continues to really shape our lives, people's lives, and research. I'm Shane Sweet. I'm an associate professor at McGill University in Canada, and I'm joined here by Jill Hilton, Terry Thorston, and Eric Bernstein. Please, uh Jill, you want to introduce yourself quickly and then we'll go with Terry and Eric.
SPEAKER_04:Thank you, Shane. So, Jill, or sometimes I get Jillian if people are telling me off. Um, I am an occupational therapist. I've worked in the area of spinal cord injury for a long time, and always through my time I've been exposed to the connection between people and that peer support. And I love Shane that you frame that as a journey. Um and we'll come back to that in a moment. I am from Melbourne in Australia, and uh I work at the Austin at Austin Health, which is the main place where spinal cord injury is supported in uh Victoria. Excellent. Terry?
SPEAKER_03:Yeah, thanks. Um my name is Terry Thorson. I am the manager of uh peer coaching and outreach with spinal cord injury BC. We are a uh provincial organization in uh Canada. Um I'm located on the far west uh coast of Canada uh in beautiful British Columbia, and I am uh calling from Vancouver.
SPEAKER_00:Excellent. Eric. And I'm uh Eric Bernson. I work as a peer mentor at the rehabilitation unit in uh in the most southern part of uh Sweden. Skownes University, it's who is and I'm also a um first contact peer support coordinator with uh RG Active Rehabilitation.
SPEAKER_02:Excellent, great stuff. So let's let's start exploring a bit the the history, the magic. Uh that's kind of a word that that comes in some of the organizations I worked with about this magic of peer support, which is fantastic. And then uh, you know, how can we actually measure and show its impact? We know it's valuable, and hopefully we can take the audience through through the journey today. So Jill, do you wanna maybe we'll start off with you and a little bit about the origins history of peer support, where we're gonna get all started, and then we'll we'll get some some insights from Terry and Eric uh as well on the historical piece. So go ahead, Jill.
SPEAKER_04:It's a it's a fascinating story, Shane. Uh Eric and Terry live it. They live the the benefits of this many years of uh I guess an evolution uh around this dynamic of peer support, or as you say, the magic of peer support. But the story really started, as I understand, back in the early 1940s. Uh it's a it it really began probably as a movement rather than a more formal approach or or model, uh, as we the language we might use today. Uh so back then we can only imagine that, and uh sorry to say that in some parts of the world, spinal cut injury it can still be very life-threatening. Uh, but back in the 1940s, it was probably ubiquitously considered a terminal condition, and people really weren't expected to live long because of the complications of spinal cut injury, and that idea of rehabilitation really didn't exist. And then at a place called Stoke Mandeville in the United Kingdom, something changed. Uh, there's a person that we all recognise as Sir Ludwig Goodman. He came, I believe, as a um a Jew, a German Jew, and had survived the Holocaust. And he came to Stoke Mandeville to lead the spinal cord injury unit or started to treat uh ex-service uh men who had been injured, and they that that really was the beginning of that culture of sharing knowledge and and sharing um or living living alongside somebody else. And so they weren't just, I guess, just treated, but uh so Ludwig started to bring in the idea of sport and uh connection through sport. And then obviously, I can I imagine people started learning from each other and and seeing and sharing hope and possibility. So and I guess it would have also been very skill-based too. People would have seen each other using their wheelchairs, uh, thinking about who they were and what this meant for them in their lives. So there would have been a very natural exchange of knowledge, um, reassurance, I imagine lots of humour. Um also I imagine a lot of frustration and hopefully hope. So then that became more formal in 1948 when the first Stoke Mandeville games came about. And again, it it probably wouldn't have just been about sport. It would have been very much around connection with your teammates and learning together, uh, sharing that fun of of playing sport. So you're starting to shift that, I guess, the paradigm that that spinal cord injury didn't wasn't about end, but about um a future or or and connection. So I think that's probably where what we understand as peer support today really started, and and then that continued and and uh uh continued to to evolve. Um I've been working in spinal crit injury for about 24 years, and and it no doubt Eric and Terry would also describe the change that they have have seen over time. Um so if you fast forward today, we've got peers who are integrated in so much of what we do. They have training, they're recognized as experts, they're embedded in services, uh, we're part of they're part of the multidisciplinary team, they're co-leading and skill building. There's a lot of emotional identity support for others, there's lots of family guidance, and it's so it's not and it's not just a at the early end that Eric started to describe, uh, but as Terry well knows, well into the community and and uh people are living well and longer with spinal cord injury, and I think peer support also has therefore a role throughout that lifespan.
SPEAKER_02:Excellent. Thanks, Jill. And I guess from maybe from the Australian context, is when when is that seen, or at least what's the evolution of peer support from the Australian context? And maybe we can get the insights from Terry America from in the Canadian Union in the Swedish context as well.
SPEAKER_04:Yeah, so in Australian context, our formal peer support organizations really only came into their own in about the 70s. Um it would have been post uh the Paralympics happening. Uh so Stoke Mandeville had games for a number of years, and then they became the the Paralympics as we know them now. I think it was about 68. So it would have been post that that more formal organizations started to emerge in Australia. And uh and it was um in a way transactional. It was it was uh or or or very informal and very uh non-curated, but people having to be around and and sharing their knowledge and and ideas. Um but as I said before, as as we've seen those those roles evolve, uh there's a lot more formality and um, I guess expectation to on our peers that are a part of our networks.
SPEAKER_02:Yeah, Terry, do you want to folks? I believe in Canada we started a little bit earlier than that, right?
SPEAKER_03:Yeah, like I think the history that Jill shared is definitely what we've seen in Canada. So SCI Canada, which is formerly the Canadian Paraplegic Association, was founded by veterans returning from World War II with spinal cord injuries. And they realized that really no one understood their challenges better than someone else who lived it themselves. And um, although we have seen a lot of growth and ways that we deliver uh peer support, that real true founding principle, uh, that peer-to-peer connection um still drives everything that we do today. Uh so it started as a grassroots movement and really has grown into this like national network of organizations, which includes uh the one that I work for, which is on accord injury BC.
SPEAKER_01:Excellent. Eric, how is that how is that for in the Swedish context? How does it look?
SPEAKER_00:Yeah, first of all, I'm I I I I think that we should have come further with this starting in the um in uh not uh Sweden specifically, but the world, uh right? If there was a peer in the 40s and they saw how much that could change a person's life, why aren't there more peers in uh in all of the uh spinal cord uh units, right? But uh that aside I kind of um I I I feel the uh the the strokes of history. Do you say that in English? The the wings of history. Uh for me and for um RG, the association I work with, uh peer support goes back to the uh mid-70s. Uh active rehabilitation started with the recruitment to uh Paris sports. Um and one of our key elements is still this so it's not recruitment today, but going to the hospitals telling them telling the the newly injured um our stories and how talking about life and living with a spinal cord injury. Um and when I had my injury in 2009, um the Peer Sport Network of RG's uh first contact uh did the same thing as they did in the 70s. They came to the rehab unit, talked about life and getting back to living a life after a spinal cord injury. And still my work with our organization today is uh is similar. I try to manage this network so that everybody who gets an injury in in Sweden at least is offered the opportunity to meet someone with a uh similar injury or um similar um background or ethnic ethnicity or whatever it could be.
SPEAKER_02:Since since you're there, do you want to maybe keep explaining a little bit about what the programming looks like for for RG Active Rehab? And then uh Terry can maybe jump in after and explain a little bit, and we can see different types that that might be or different ways of providing peer support. I think um we all know it's not just one way of doing things, and I think it's important to talk and share about what peer support can look like in in different areas, different contexts, and different ways of of thinking and doing peer support. So you want to continue, Eric, on on on sort of hijacking rehab?
SPEAKER_00:So we we had a a big change in the um in the medical system, rehab system in in Sweden two and a half three years ago. Three years ago this uh spring, where we went from maybe fifteen units down to four highly specialized um uh units. Um and that gave us uh the opportunity, the organization, um to focus our efforts uh and really uh set up uh teams or networks around each of these uh four places instead of being spread out across the fifty. Uh and we went from um around a hundred um meeting around uh around uh a hundred new linger uh persons uh before COVID or twenty nineteen-2020 uh to the this year uh passing two hundred and this is out of around three hundred-three hundred and thirty uh newly injured persons in Sweden. That's so we it it really gave us or the person with the injury um the opportunity to if you come to one of these uh specialized units, you can you will probably be offered the opportunity to meet someone with a similar injuries, similarly similar background story.
SPEAKER_02:And what what happens when someone joins uh uh one of your one of your active react programs? What what does that look like? What's what's what's what is what is a day or the or or the what does the program look like?
SPEAKER_00:So the the the the the program is uh that that might be another podcast. That's um yeah, I guess give the audience uh a snippet of of so so the uh the the the first first contact peer support that's two or three people uh with injuries going to um what do you call it the canteen at the hospital, and all the patients or all the patients are offered to come there. And I tell my story, motorcycle, you know, blah blah blah, crash, blah blah blah, rehab. And now, 15, 17 years later, two children, big house, uh and nobody cares about my injury anymore. It's food in the morning, it's getting the kids to bed. Like if if you if you try and if you um put in the work you can you can put you can't live like before, but but you can have a l life like like before. Uh and our our programs are something else that's uh a week at a location where you yeah, you spend every minute with peers. So fifteen peers and fifteen um new injured persons or mentees um come to the same place. I share a room with a maybe yeah, maybe twenty-five-thirty-year-old motorcyclist uh T7, paraplegia, complete injury, and he's had his injury for six months. Yeah, we meet, we I don't know, get up a curb, we do these um the back uh back wheel balance of the chair. Uh we eat, we go to bed, and so many times I've been in that room, turned off the lights, and that's yeah, will come back come back to your your magic. That that's where the the the questions come. That's where everything this guy has thought of for the last six months, just blah blah blah, and opens up. Like in a yeah, yeah, it's magic, right?
SPEAKER_02:Yeah, yeah. Yeah, it's great. I mean, it's it's that uh with RG Act your active rehab program is more about you're you're in it together for a week long, you say, right? And you're spending every day, you're sleeping together and getting all the questions happening throughout the day, and even except as you turn off the lights, then the spirits come out and and the real stories come out and the real sharing happens, right? So that's that's that's great. And I think um there's different ways of getting capturing that that magic. And Terry, do you want maybe elaborate from an SCI British Columbia BC perspective? How how do you what what what do you do to the different programmings that are done there to give a a different approach than what Eric has described?
SPEAKER_03:Yeah, so we definitely do things a little bit differently. Um so we would uh our peer support is really woven into everything that we do. Uh it's the main core of what we deliver. Uh, and it starts, it can start in acute care and go all the way way long into the community. Um, so it could look like one-on-one connections, so similar to what Eric was talking about, where we match people based on their injury level interests, or maybe their the stage in life that they want. Um, we also have like a peer coaching program. So this is really uh structured support for a goal setting, action problem, action planning, problem solving that are led uh by trained peers. So they have specific uh qualifications and training um to delivering peer coaching. We also have like group activities, uh which is social events, uh, like barbecues, like holiday parties, um, coffee groups, uh, adaptive recreation, you know, skiing or um educational workshops, that type of thing. Uh, and then we have a whole host of online activities as well. So again, very similar to the in-person activities in a format, but um offering that virtual so that people who live in rural rural and remote areas have access and can't access our in-person activities, you know, there's something for them to go. So we offer like boxing classes and book clubs and just you know regular chats. And we also have educational uh sessions as well. And then we also have a toll-free info line, we call it, where anyone um, you know, whether it's a member, whether it's a clinician, you know, who a family member uh can call and our team on the info line uh provides uh information uh perhaps it could be emotional support to any one of the people calling in so we see a lot of you know um really that creating these opportunities for friendship uh and making connections uh but also as part of that there's like the sharing of practical tips you know as well from that peer-to-peer perspective and then really like a sense of safety and uh emotional support as well um and the and the the biggest thing I think uh that our whole program all the programs that we deliver um is very participant driven so it really meets meets um the participant or member however you want to call them um where they're at and uh at any time at any stage and they tell us what we need and then we respond to it and maybe it's creating a new event maybe it's creating a new match whatever it is um we're pretty responsive in in how we respond to our members and our our participants in our program excellent I'm actually curious sorry I lost my voice um I'm actually curious uh so Eric talked about some magics happening you know when you turn the lights off like are there moments that you've seen from in your role that you've witnessed out of that those those key moments uh maybe different because it sounds like you're you run very different programs across the spectrum so is there something you can pull from experience in terms of like ah this is a a shining moment where we've seen really the magic happen. Well it's so funny you know when this whisp this word magic came out shade I was very against it I had a very therole reaction to the word magic. And maybe because I've been delivering peer support myself like for 20 plus years, right? And it's a lot of work like it's actually quite exhausting and it doesn't feel like it just happens. It's not just magical but you know after you know sitting with it for a while I did kind of realize that it is kind of magical in the sense that we don't really know what the outcome is going to be and it just kind of happens. I mean you feel like you have all the knowledge and you're trying to share it with a person or you're trying to help guide them in what they want to do or just you know having a talk talk with them but you actually never really see that impact that you end up having. So I think like having known a lot of people in our program for you know 20 plus years the fact that they're still with us and and now giving back and asking how can they like they've received so much information and have learned so much information information through SCIBC through our programs you know now they want to be peer mentors. How do they give back and that's what I think for me is like a great story right and seeing them become advocates and and fighting for catheter coverage or you know just different advocacy you know that's what we want to create is these leaders in for themselves but also for the whole community right and bringing people together.
SPEAKER_02:Great good stuff and uh I I love the fact that you did like magic uh I think that's that's that's great though that that's the point right I think these conversations to to debate is what provides even more interesting in in twists and and how we see that. So um JL just maybe before we we so we're talking about you know impact and and it's hard to measure impact before getting there is there anything that you want to kind of highlight about sort of different models or different ways of providing for support we heard quite a bit here so just if you have any other insights caveat I I'm gonna try this we might cut this bit out but I wanted to pull up on a comment that Eric made earlier around if people been living with spinal cord injuries since 1940 why haven't why don't we have more?
SPEAKER_04:Why haven't we progressed further? And I think that's a really interesting reflection thanks Eric because society was society's evolved, hasn't it? So uh our appreciation of um the knowledge and the expertise of lived experience has evolved even though it's already always been there and so we I guess we've we've ridden the the incredible wave of that social movement of of disability or certainly I I feel like I I've evolved in my appreciation uh as society has well hopefully I'm a little ahead of the general society but um yes it would have been there in the 1940s it absolutely would have been there but it was also a very medicalized model back then it it it our we've we've thankfully had a had a greater recognition of of rights of um uh identity and the importance of of living versus um uh that that historical sense of uh that you can't you can't live you can't live you can't you can't contribute you can't be somebody of of value if you have a disability and which is uh for me now I feel quite horrific but I I guess I think it still exists in some parts of the world. Um so the more that we are talking about this this magic um uh recognizing that transformation that can happen with the connections that people bring um I think is really exciting and we're part of part of that then the the next wave great insight that without without the evolution of society we might not have seen as much of this transformative power of peer support right the the inclusion of it and having people like Terry and Eric share their story and and showcase the the value of it uh might not happen if society was still in the medical model right so I think that's that's an interesting point and um I think we still have ways to go on different elements but I think that that shows that we are moving right and we can have a podcast on peer support which might not even I'm not even sure if 20 years ago would have been a topic of interest to have a podcast on peer support, right?
SPEAKER_02:So that that showcases that evolution as well so I think that's that's a nice tie with the the start of of what we're talking about and and and where we are what we're talking about now. So um and yeah go ahead.
SPEAKER_03:Yeah yeah for sure anybody else um I was just gonna say that like um I think that you know thank thankfully uh I probably because a lot of the research that's been happening in spinal cord injury we're living longer too right so you know we have so many more stages of life to be able to share and pass on to like the younger generations and so I think because of that we're seeing like um you know these continued conversations for many for much longer where we can start seeing that magic of peer support but we didn't live that long you know in the 40s um sadly so and it goes to your point like you mentioned that you've you still speak to people that you've seen you've spoken 20 years ago and you're still like there's you know and I imagine the conversations are very different.
SPEAKER_02:So even the the delivery or deliveries might not be the best word but the way of offering peer support also has to shift because of what you just said right so um so so it's not I think it just again reiterating it's not one way one model of doing things there's there's so many different ways of of thinking thinking through through through the peer support so anything else or do do you want to you want to try to talk about how do we measure this impact and what have been done and what ways are different. Do we want to shift to there is there a few un a few I'm trying to look at the expression not ties but both ties or things that we didn't complete in in the first part of the discussion.
SPEAKER_03:I think maybe like maybe what I would add just before we go to sort of that you know how do how do we evaluate peace is because um the is the training piece because that's really important I think um for our organization is uh what why we're doing training specifically for our volunteers or mentors we a lot of our most of our staff are actually people with lived experience as well um and because I I personally think that training is really important and one like not only does it help like build skills but um it can help them uh recognize when they need to refer out to like maybe uh clinicians or or other professionals. It also really like for myself who is a person who uh had compassion fatigue and burnout um without having those tools I really learned that it could it can help to protect both you uh as a peer supporter um and also the person receiving the support because sometimes you know they may not be ready they may think they're ready they may not and then they're not ready there's a lot of things as we know that people are going through trauma you know uh could be PTSD there could be a lot of things going on in that person's life so so we do invest in in training all of our fear supporters whether it's staff whether it's uh a volunteer or mentor um you know and and it also adds uh credibility to the program as well so it really helps with our relationship with the uh the clinicians we're a separate organization we're not like completely embedded into our healthcare system here um which is I I don't know whether that's good or bad um I mean we could debate about that um it allows us to not have to deal with like the red tape but we're more invited and we do have an office at the rehab center here in AC but um we're not fully integrated into the rehab and the skills that uh the new people with spinal cord injury are are doing with their therapist. We will just be asked to come in when when the clinician thinks that it's um uh an appropriate time or someone wants you know to learn more about how a how a peer would do that um and usually that is a staff member but but yeah I mean the the training piece I think is really important.
SPEAKER_00:I'd be curious Erica to and if that's important for for your peers or do you let it be more like just confirm conversational and sharing of experiences I would um I I I would go back to your point on that we are uh getting older as well and that I think that you do a um not a better job but you have a longer peer support you touch people for a longer time than we do so I I was in the Okanagan uh I like the word chin waggers the chin waggers um it's and and I um so twenty twenty five thirty years you've had your injury y you get new problems or new things that isn't working uh and m maybe then that the training would be even more important because that then you're talking to uh two two peers consulting each other how how do I handle this where do I go from here yeah that that's more uh of a reflection than an uh than an answer that that's interesting because then it becomes almost it's not like a mentorship like hierarchy where someone's lived it but you're living it at the same time the mentor or mentee and then you're sharing together the new stage of life that people have are experiencing at the same time is that and so you're saying that even training about that dynamic is something that could be a value is that is that am I hearing that yeah and and or maybe I have met so many new injures that I I know exactly how to talk to to them and handle them that to me it sounds yeah harder or more challenging to yeah to to peer repear you are equal that would be this is the evolution isn't it that and and uh why the the research or the the reflection and the evaluation around what you are doing is so important.
SPEAKER_04:Um I think about my own profession and there's been obviously a evolution of of occupational therapy as a profession um and I don't I don't quickly use the label I don't profession I think is a is a it's not very helpful to use but there is an expertise that comes with lived experience. In fact that's what we've we've reflected on in this podcast that this has been a a journey of of peer support and it's continuing to evolve and as people are exp having new experiences around spinal cut injury such as aging with spinal cut injury we're we are learning along the way what comes with that and I think broadly I was reflecting recently even as an occupational therapist I think there's knowledge that I need to gain from from actually from from peers from people with lived experience around that aging experience.
SPEAKER_02:How does that then impact on somebody being able to maintain their employment and what can I learn from others who have who are going through that um as they're aging with their spinal injury I think like the point about um training is is extremely important because I think by doing some of the training or understanding what you're training on can also help understanding what the impacts could be or what you want the impacts to be right um so the idea of Terry mentioned about elements that they're training on well if you're training on that that means you're then transferring that to the peer interactions. So you'd be expecting so when you go on measuring impact that should help clarify what you should be looking at and what you're hoping to see change right because you're training on those elements so you talked to gave you know you you're you shared your your elements on compassion fatigue and and all that so if you're doing training on that then you're hoping that your outcome would be to reduce the fatigue around that right so I I think that's often what's been hard when we're trying to capture this idea of the quote unquote magic whether you like or don't like the word um it is is that it touches so many facets um that it's really hard to capture and um some of the research that we've done we've you know identified 87 outcomes of peer support of peer interactions you can't you can't assess 87 outcomes and you're not gonna you're not gonna change 87 things in a person necessarily neither so um it's broad it's tricky it's hard so I think kind of going back to the training and when if you're thinking about evaluating or measuring its impact is thinking of connecting all the dots right what are you doing are you are you specifically aiming to enhance a skill if so what's that skill and how can you measure that are you mostly trying to build connection then then you know then you might want to assess elements of connection sometimes I feel we have a tendency to try to go always big like quality of life like that's what we're trying but there's so many other factors that impact quality of life that is per support really gonna change that big outcome when there could be housing issues there could be transportation issues there could be medical issues that impact that that pure support could help but not necessarily make that big outcome so there might be I think looking at the training looking at what you're delivering and thinking through that can really help on on making sure that we showcase the true magic and the true impact of it and I think that's where from the research component we're we're trying to I guess advocate and and learn more is making sure that when we do these programs or if we evaluate community programs is making sure there's a clear alignment on that. And I think that's What my role as a researcher and working in partnership with SBI British Columbia like Carrie is thinking through those elements and hopefully we can our goal is then show the impact, get funding for it. Eric's point, get it everywhere. Uh, you know, why is it not everywhere yet? That's that is that's the vision, right? Is making we want it to be everywhere because we know it has has the impact. So anyways, I'll I'll stop there, but I'm curious, because it's obviously an element that I'm passionate about, but but I'm curious to hear from from others, others, Jill, Terry, Eric on on SS and the impact. What what's valuable from the community perspective? What's valuable to you as a peer mentor? You know, it might not be a uh it might not be a questionnaire or an interview. There might be some other things that really shines for you when to when that impact when you see that impact. So um we will we'll open up the conversation on on that piece.
SPEAKER_00:I I made a um a note there preparing for this that I'm uh happy I'm not in research describing magic. Because it it yeah, yeah, it's a it's a challenge, and I I think that this is similar to what we are trying to do with the active rehabilitation programs. We are trying to describe something, yeah, with two thousand different factors, housing, what's impacting these people's quality of life. Uh and that so we have in active rehabilitation and RG, we have been so much uh the anecdote where I have been the good example and describing my journey. We have this children uh injury, we have children the perfect life. And and the same thing with this magic. It's at at one point I believe that we Terry and I in today's conversation we need something more to rely on than this anecdote. Uh and to do an anecdote. I I remember me meeting my peer, me being in this uh super big first wheelchair all messed up, and I I remember feeling sick or feeling I was in the hospital, not with an injury, but I was ill, I was sick, I was in I don't know, in a in a bad place. And my my peer mentors, my um my uh the people from RG came to the canteen and they uh they had a t-shirt and jeans and they looked they looked like people. They came in their wheelchairs and just like anybody else. And how how that lifted me and I can tell this story I have told this story a hundred times, what made that difference, and and maybe how how did it make a difference?
SPEAKER_02:Shame that is that is the tricky part, right? That is the hard part on that. So Terry, I don't know if you wanna either chime in or expand or yeah, I completely agree.
SPEAKER_03:Like Eric, I think we've relied on stories for so many years uh for funding, right? And one story is one story, right? But funders, I think, really want to see that, you know, qualitative and quantitative mix. But how do you quantitatively um you know measure the stories, right? So I think that's been what's been really great about uh the work that Shane's brought to our organization is that, you know, and I've utilized it within my program, um really getting those numbers, like who learned tips and tricks when we host an educational workshop. Did you learn an additional skill? Do you have more spinal cord injury knowledge? Um, do you feel more connected to your community because of the programs that we have? So these are just some of sort of sort of some of the examples and being able to see that um on a graph and or a chart or like a display with like 95% of the people say that they have gained more spinal cord injury knowledge is so not only visually, but that's like a story unto itself, right? And then when you add that personal connection and those quotes and things like that, it's just like such a more fulsome um yeah, picture of what you're able to deliver. So it's been really uh really eye-opening, I think, for our organization. You know, what the difference is is that it, well, it's it's different. The questions that we ask are different for each of the peer support programs. So they may not be all equally, we're not asking the same questions, right? Like the coaching, to Shane's point, is asking uh or is trying to measure very different things because it's one-on-one and it's very specific to like goal setting and you know what that participant's goals are. So those questions that we ask are the outcomes that we're trying to uh evaluate are very different than say what we would do, um what I do in the online sessions, right? Which are um you know more social. So yeah, it's been really interesting.
SPEAKER_02:No, that's that's great. I I think I'll Jill, I'll get to you, but I just like we started by telling we're gonna tell the story of peer support, and then Terry mentioned that we're doing you're doing the storytelling of the data as well. So like there's the you know, we we have evolutions of stories, I think is kind of the theme they end up the unplanned theme of of this podcast, right? So Jill, uh I'll throw it to you, and uh maybe we can start the kind of close this podcast. I'll throw it to you, Jill, and then you can transition to kind of uh either one key thing you want to share with people or one element that you think the future of peer support needs needs to. So uh I'll let you uh finish the last idea and springboard us to the next one.
SPEAKER_04:Hmm. This may be an idea that could have come out earlier, but uh just to briefly note that uh a few years ago uh Shane Ernest, who many of you know, myself and Rochelle uh from New Zealand, uh ran a core uh ran a workshop at at East Cos that was focusing around how do how do you what tools have we got to help us measure this um or to understand what a what this expression of complex intervention, which is what peer support is, everything that you've all both described, there's so many layers, so many elements to um one of the resources that we all have access to, uh or tool or approach that we have access to is a is a program logic approach. So it really helps you to unpack. Um, as I say, this maybe better to come earlier, but when you start with the end, you start with thinking about the outcomes or those sort of the long-term outcomes that you that you think that you can influence, and then you work back. And what you described before, Terry, was extremely helpful because you're you're unpacking the the elements of what you want to see shift or or or think that you can influence or impact. And that then the the logic flows would then uh see those those broader, bigger outcomes. I have to my brain is at uh still at 5 53 in the morning.
SPEAKER_03:We're not all on our mass step five, baby.
SPEAKER_02:Do you want do you want to or do you want to go somebody else so you can think about one last essentially we're gonna go here? It's gonna be one last word to kind of finish up uh we're getting close at the hour here, so that's kind of like either think of something that you want to um that we need to go looking forward, or is there one kind of message that you think people one take-home message from the conversation today? So I'll leave that up to everybody to to do that. Um maybe I'll just restart, I'll just say that that's what we're doing, and then uh somebody can jump in first. Does that work?
unknown:Yeah.
SPEAKER_02:Okay, perfect. So kind of to close up uh the podcast today, I think we'll all maybe we'll share either one key kind of lesson, something that we really want to make sure that that message is clear, or maybe an element where we think might be critical for the future, either in peer support program development or even peer support-related research to help that development. So um who wants to who wants to kind of share their first thoughts? Share their thoughts first.
SPEAKER_04:Yeah, I I'll jump in there, Shane. I I think it's more of a what excites me about the future and and largely based on on the conversations we've had today, that peer support isn't just peer support, is it? It's uh in our mix, we have educators, leaders, researchers, advocates. Um that that connection to lived experience is is so much greater. And I think that's the the um the exciting bit moving forward as we're able to describe what our peers are doing and and how they are working and influencing and shaping the services that we run, um, shaping policy, shaping how we're delivering rehab and ongoing services. Um so that's my my thought, my excitement for the future is that we'll continue having such direct involvement, or our peers will such have a direct involvement in in the future um programs that that we deliver.
SPEAKER_01:Excellent.
SPEAKER_00:Eric, Terry? I might continue with something similar then. So for for professionals to see the benefits of uh having a peer on the team in in the unit uh and for uh people working with peer support to um re reach out talk talk to uh others who do this. Uh and I uh use uh I use experiences from uh Terry and uh I hope uh Canada can have something to learn from uh Sweden. And then this is super important and makes uh makes it easier for us and makes it easier to uh to help the next person who uh has an injury yeah I kind of like similarly, I think that we just need to keep innovating what peer support looks like because what's happening, what we're doing, may not be what another country can do.
SPEAKER_03:I think we need to look at our communities uh that we each are in and the people that we're serving and and and have them involved in helping to either create, build this this program or peer support program, um, and especially in reaching rural and uh remote areas. I think it's it's that's a real key component. And then the other thing I just want to add is really like us as we move forward to stop thinking about people with lived experience as volunteers, because um I think it should be looked at as like an actual professional uh position um and be recognized in that way and become like a core component of being able to um deliver services.
SPEAKER_02:Excellent. Good point. I I think on all that for me is that we started by telling the story pure support. And I think what excites me is that the story doesn't end here. Like the story is still there's still an open book, and and I think that's what excites me the most is that there's still a lot of ways to go, and that's extremely exciting um to continue to impacting and help uh individuals with spinal cord injury to to adapt and to thrive um through the delivery and uh of peer support, uh, whether it's context. And I think we're talking about our context, and I think growing that global community is something that we're we need to continue to go on that front, to continue to learn from each other. So on that note, um thank you, Jill, Terry, Eric. Uh awesome conversation. Um, to our listeners, whoever did listen, thanks for joining us. I hope you learned a little bit about peer support. Um connect through us either individually or through the Iscos Engagement and Peer Support SIG, the special interest group. Um until next time and and keep the story, keep building the story peer support. Looking forward to having these interactions uh once again.