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S7 E13 - Supporting Community Transitions For People With SCI & Their Families · The QuadCast

• John McAleavey: Today I will be joined by Jean Zanka and Denise Fife, researchers at Kessler Foundation. I have had the opportunity to see their work up close, and I am always impressed by their commitment to listening to people with spinal cord injury and their families, and turning what they hear into practical programs and resources that can make a real difference. Jean and Denise will share with us how their research and community partnerships. Are helping to support people with spinal cord injury as they transition from rehabilitation back to their homes and communities. We will discuss the emotional and practical challenges that can arise during this period, the vital role of family, caregivers, and peer support, and the importance of designing programs with, not just for, the people who will use them. Their thoughtful, collaborative approach offers an inspiring look. At how research can help people and families feel more prepared, connected, and supported during major transitions throughout life. And it is my pleasure to now welcome in the aforementioned Dr. Zanka and Fife to the quadcast. This is our second installment of a series we're doing with the Kessler Foundation, and we've got much to discuss. So why don't we hop right into it? How did you both become interested in spinal cord injury as a topic of your research? Denise Fyffe: Well, I guess I can start Jean. yeah, so hi John, thanks for having us on. it's a pleasure to chat with you. so spinal cord my my interest into the spinal cord energy world was really we were Kessler Foundation was had some research funding. I came in as a researcher. I'm a clinical psychologist by training, but based on my training I in qualitative research methods, there was a big grant that was funded to develop the SCI quality of life measurement system. And they needed some extra hands, qualitative research hands, that is, to take a John McAleavey: Mm-hmm. Denise Fyffe: look at the data. And so that's how I, you know, joined the Center for Spinal Codic injury research. And It's you know, I've been here for seventeen years now and so yeah, like it's been a while, it's been a minute. John McAleavey: Yeah. Denise Fyffe: you know, doing different types of research, but that's how that was my start into and learning about spinal cord injury and I'm ever so grateful for the opportunity to be a part of the SCI community. Thanks. Jeanne Zanca: Yeah. And for me, it started even earlier in the trajectory. I was in college and I was looking for a researcher to do an honors thesis in biology with. So this is at Rutgers University, and this was right around the time that Dr. Wise Young had come to Rutgers from NYU, being a neurosurgeon and being, you know, one of the pioneers in looking at options for treating spinal cord injury in its early phases. And so I had the opportunity to be one of the students in his laboratory and to do some research related to cell growth and spinal cord injuries. So I was, you dripping things in petri dishes and that sort of stuff. But John McAleavey: Yeah. Jeanne Zanca: but the great part of that experience is that was that we did open houses once a month. Where people with spinal cord injury and their families would visit what eventually became the Keck Center for Collaborative Neuroscience at Rutgers, and they would receive updates from the researchers there about what was going on in spinal cord injury research, and they would tour the facility and we would get a chance to show them what we were doing and explaining John McAleavey: Mm-hmm. Jeanne Zanca: how we thought this would could be helpful in the future. And that was really what got me hooked on this community. And at the time I was interested in going into the health professions, I was interested in doing physical therapy, not so much medical school, but was also interested in research. And Wise Young said, well, you should keep doing research. Go go write to my colleague Clifford Brewbaker, who was the dean of the School of Health and Rehab Sciences at the University of Pittsburgh at the time. Tell him you're interested in PT, tell him you're interested research, see what he says. And the result of that process was that they they made a sort of a customized program where I got to do my master's in physical therapy. along with my PhD in rehabilitation science. And that work was continuing to be focused on people with spinal cord injury at risk for pressure injuries. So it started then I had the great fortune to come to Mount Sinai School of Medicine for my first position after finishing my doctorate. And then in twenty thirteen I came to Kessler Foundation. John McAleavey: Yeah, I was gonna say how many years you're with us at Kessler? It's 13 now? Jeanne Zanca: So it yeah, it's it's time not as many years as Denise, but time flies and it's been a real joy. Not too far behind. And I've Denise Fyffe: You're not too far behind though, Jean. Jeanne Zanca: I have felt so fortunate to work with all the people I have at the various centers I have been with, so it's a real honor. John McAleavey: Well, I have to say on behalf of the community, I I so appreciate we so appreciate the work that you do on our behalf every day. I know I work on the other side of the building, but I know there's a lot going on over at the foundation. I can see the smoke pouring out of the windows. You guys are really trying trying your best to to make our lives better in any way that you can. And so how about what research projects have you conducted to learn about needs related to community transitions? I know that's a big topic nowadays. Denise Fyffe: Yeah. I mean I think they there's been a whole array of projects that I've worked on since being here. But I'm just gonna speak to I guess my research focus and that's been really trying to understand the social drivers of health. And those are the non-medical factors, right, that impact or might be related to people with spinal cord injuries functioning, their recovery. their functional independence, right, while living with the injury. So the non-medical factors that we're talking about, right, are like accessing health care. Does someone have it health insurance? If they do what type, right? socioeconomic factors like employment status, education level, right? other things like neighborhoods and housing. So housing has become a social driver of health, right? And whether or not someone in terms of accessibility, Right? What does that look like where someone's living? So these are some John McAleavey: Yeah. Mm-hmm. Denise Fyffe: non-medical factors that we know impact people's health, quality of life, functioning, and overall well being. And so that's been one area that I've of researched that I've been focused on. And I've looked at it in different projects. So one say that we're working on right now is looking at the wheelchair repair process. And this this is one aspect that we, you know, are a number of state stakeholders have told us is really you know, quite fragmented in terms of the kind of the repair the wheelchair repair journey that we observed and so we actually are conducting a wheelchair repair study that's looking at those non-medical factors. that impact people, wheelchair users, right? As they're trying to repair their wheelchair, John McAleavey: Right. Denise Fyffe: right? And so income paying out of pocket is definitely been one thing. Health insurance has definitely been another. There have been a number of different non medical factors that have contributed to the wheelchair journey being disjointed. and whether or not the re wheelchair is repaired or not, that's a whole other story. So that's right. John McAleavey: And how long it takes, right? I know it takes forever, oftentimes, for the wheelchairs. Yeah. Denise Fyffe: There is that. That's right, John. Absolutely. And so I've been talking to people at wheelchair users about that wheelchair journey. In addition, I've also been involved in studies, a home-based study. I had a home-based study that was funded by the Craig Nielsen Foundation, in which we were taking a look at functional independence and and really from the perspective of people living with spinal cord injury. But interestingly enough, we were actually going into people's homes to have them tell their stories about their functional independence and what it means to them to be functionally independent. And that's yes, right. John McAleavey: Everything. I can tell you it it means everything. Yeah. And so I'm at that's great that you're doing that and you're getting first hand accounts for from from not only patients but their families and you can use that with folks who are in patients and and try to get them ready before they head back out. Yeah. Denise Fyffe: Absolutely. Absolutely. And you mentioned, you know, of the family. And so that's another area of research that I've been involved in as well. Jean and I actually collaborate quite extensively well also with our, you know, with our colleagues at the VA as well, VA New Jersey Health Center here in East Orange, trying to understand the needs of our caregivers and how we can support them and their needs as they're caring for their loved one with a spinal cord injury. So those have been really the three major areas that I've been you know, conducting research and have really informed sort of where I am right now, with the SCI community and understanding those the gaps. What's what are some of the gaps and that need to be filled and how can we fill them. So John McAleavey: Yeah. Denise Fyffe: yeah. John McAleavey: Great. How about you, Gene? Jeanne Zanca: Yeah, so many of the projects that I worked on early in my research experience with spinal cord injury were focused on complications of spinal cord injury. So when I was at the University of Pittsburgh, much of that work was focused on pressure injury management and detection and prevention, because that's such a a major problem that many people with spinal cord injury face. And then moving into my position at Mount Sinai, I was able to do Some more work related to chronic pain and spinal cord injury, which is a major challenge for people. And that work extended into coming here to Kessler Foundation, looking at self-management interventions. So things like using imagery and relaxation techniques and other strategies to help manage that pain, because we're not yet in a place with our medicines where we can get rid of it completely. We have to come up with other mechanisms for coping with it. And my interest in complications sort of led me to become interested in caregiving because from a physical therapist perspective, when we're we're giving directions about how to fill that cushion and how to maintain this piece of equipment and how to do that transfer, you know, it takes two to tango, and very often it is that family caregiver, that or or hired assistant, who is the hands implementing what we clinicians recommend. And so to be successful at managing complications isn't just a project for the person with spinal cord injury. Necessarily, but sort of a a a project of the family and the community and the supporters around them. And so so some of the projects I've been involved in, in addition to the the chronic pain management, moving into caregiving, have been to look at things like how we train hired personal care assistants. Can we design better programs to educate them about spinal cord injury? Because it's so much less common than stroke or other conditions that home health care aides are more used to working with. So Denise and I, along with collaborators at Shepherd Center and our colleague Trevor Dyson Hudson here, worked on creating an online course to educate home health care aides about spinal cord injury. I've also been involved in recent years in projects designed to support family caregivers. And we did a study looking at a grief intervention for for partner caregivers because the the life changes that happen in SCI don't just happen to the person with the SCI. they also happen to the that caregiver. And so many, many stories came out of those experiences that led to the one of the projects that Denise and I collaborate on now, which is looking at the needs of caregivers and what their experiences are, where the gaps are, where they see opportunities for future support. And we're conducting that research to help us figure out where to go next, what to do to best support people with spinal cord injury and their families. John McAleavey: It's so important because and I learned firsthand these injuries don't just happen to the person who's laying in the bed and is on the mat in the gym. it it's like, you know, it a bird that falls out of a tree and hits every branch on the way down. It's mothers, it's fathers, it's husbands, its wives, its neighbors, its coworkers, it's everybody's affected. And so to be able to get sort of everybody reading from the same sheet of music is is such a wonderful thing because It is disjointed. And I've known in my 34 years in in this realm. When I went home with a a home health aid in the beginning, I mean, good grief. He didn't know what I was. I mean almost it was it we didn't know what to do. He didn't know how to do I help him get dressed, do I help him in the shower? And I wanted to be independent. I didn't want him in the, you know, so it's like, if you can get everybody, you know, pulling on the same rope, it's it's gonna make everyone's life so much easier. And ultimately the the patient whose whose life is life has really been changed in that respect. And so it's so important all of the work that you're doing. How about our next question? What kinds of needs are you seeing in the SCI community related to community transitions? This is big. Denise Fyffe: Yeah, this is a big question. I mean, it's it it's a range. you know, just from this like, you know, it's talking about the social drivers of health needs. Like I there's definitely some medical needs. I am not a physician though. so I can't necessarily address those. as a clinical psychologist, there's some mental health needs that I definitely see then and there's some needs related to that. But definitely in terms of those social drivers drivers of health, there are definitely some needs that I've definitely seen in terms of So I I don't know now if now's a good time or not, but based on all the work that we've done John McAleavey: Sure. Yeah. Denise Fyffe: together and separately, you know, Jean and I came up with these community transition programs that really help to identify, you know, resources, education, advocacy, and connecting people with spinal cord injury and their family care caregivers with the resources that they need based on these gaps that we've observed over the years, right? And so and so we've had a real we've had the privilege to actually address some of the gaps that we've seen. So I'm gonna link it to that. You know what I mean? So our pro like so the program that I'm the program lead on is a spinal cord injury navigator navigator program. And John McAleavey: Mm-hmm. Denise Fyffe: Jean's gonna talk a little bit about her program that she leads in little bit. And what I've seen are some major gaps like in like basic necessities, like we're talking about in terms of housing needs, in terms of food and security in terms of whether or not people have insurance or if they do have insurance, are they keeping the insurance just based on the way it's structured right now, right? John McAleavey: Yeah. Denise Fyffe: Having the appropriate durable medical equipment and accessibility in the home. As well as transportation issues. There's many issues that our our SCI Navigator program helps to support our community with. but and I can go into all that, but I I'll turn it over to Jean for a quick second so she can give you a little intro into her program. Jeanne Zanca: Sure, and and John McAleavey: Yeah. Jeanne Zanca: branching off of what you were saying, Denise, one of the things we noted in the Caregiver Needs study was about the financial implications for caregivers. And I'm wondering if you wanna add a little bit to that from the study and what we've observed so far on that financial challenges piece. Denise Fyffe: Yeah, well, in terms of the financial challenges, I mean, so some what we noticed, well, let let me just outline some of the gaps. So there's definitely changes in terms of the employment status sometimes of our caregivers. Either they're they're not working, they're working less hours, or they've pivoted to a lower paying position so that they can maybe offset like you know, like from a full time position to like a part-time position in a like say a supermarket, whereas before they were I don't know, a a supervisor or an administrator at some point. But John McAleavey: Sure. Denise Fyffe: so they can meet their family's needs, but also still, you know, have s have an opportunity to to be employed. And so with with that. That being said, one of the things that we've done for, well, the the the we know that spinal cord injury is an expensive injury to live with for John McAleavey: Yeah. Denise Fyffe: the person with SCI, so and for our caregivers. And so one of the things that our Navigator program has really done to support our our community has really been helping people find different grants to offset the costs of key needs, whether it's catheters, whether it is the air mattress, right? Whether it's that the the shower chair that people need or the wheelchair cost, just so there's some a little bit of relief to help s support our community in, you know, really like, you know, it in ways with with their their their self-care needs. Sorry. I I I was having some more finding trouble there. And having having man navigators help them find the finances to meet their basic self-care needs so that they can actually thrive and get on with their day, right? and get involved in their communities and do some of the other stuff that we know is that's a a lot more fun and engaging, rather than just, you know, trying to figure out, you know, how they're going to, you know, that they w are gonna have to like wash their catheters or or something like that. Wash, Jeanne Zanca: Mm-hmm. Denise Fyffe: rinse, repeat kind of thing. other ways that we can actually get them some, you know, some cat some catheters that are, you know and so they don't have to do that, go through all that. John McAleavey: Yeah. Get on with your day. So important, so important, yeah. Denise Fyffe: Get on with your day and have those basic necessities in place, right? Absolutely. Mm-hmm. John McAleavey: How about you, Jean? Jeanne Zanca: One of the things that we have both observed in our experiences working with people in the SCI community is the challenges of shorter stays in rehab. So as you know, people get less and less time here in the hospital. John McAleavey: Yeah. Jeanne Zanca: And there is often a a a lot of intense training and education that goes on during that those few weeks that people have in the hospital. But what we're observing is that, you know, people can't absorb everything in that period of time. It's a lot to take in and and I think a lot gets thrown at people. And also John McAleavey: Mm-hmm. Jeanne Zanca: Get home, the real world is not like it is in the hospital. You know, things don't fit, the measurements aren't the same. you might be more tired, you might not have extra supplies if you drop something or contaminate something, and it's scarier because you don't have a nurse down the hall to sort of help John McAleavey: Mm. Jeanne Zanca: if you hit a a problem. And so, you know, one of the programs that that we have designed as a companion to the SCI Navigator program that Denise was discussing is something we call Community Connect. And it's a program that basically Has people in the community be able to speak with, and if they're in the New Jersey area, be visited by physical therapists, occupational therapists, and nurses that are familiar with spinal cord injury and can essentially extend that process of family training and education beyond discharge from rehab, both because we know that people need help over time as they're adjusting. But also when we send people home, we're asking them not only to repeat what they managed to do in the hospital, but to adapt it to new situations. And that's actually John McAleavey: Right. Jeanne Zanca: a pretty sophisticated thing to ask of people who are brand new to this whole experience. And so what we're trying to do in that program is supplement the existing inpatient to outpatient transition. by providing opportunities for SCI knowledgeable clinicians to get into the home to help evaluate things, to help provide training, to adapt a transfer style or or other things to the real world that that person is experiencing in their home environment. And we've had some really positive experiences working with our outpatient clinicians here at Kessler Institute, for example, where they may be work maybe occupational therapy is working with someone on transfers to the toilet or other aspects of of bathroom related functions. And maybe they ordered some equipment and it's not working. But it's hard to know what's not working if you can't actually see it. And so we've had our clinicians be able to go into the home and communicate with them about what is happening so that everybody can kind of work together and problem solve. And that's really Also a big part of community connect that problem solving is an inevitable part of life for all of us, but particularly if you are someone living with spinal cord injury, because the set of challenges is just that much harder. And supporting people through that process, either through Zoom based education and question and answer, and I'm having this problem, how should I work through it? Sometimes just talking is enough. And then in other cases, really going into that home environment and helping out is critical. So that's one of the Yeah. Absolutely. Yeah. John McAleavey: Absolutely. Yeah. you mentioned that stays are shorter. When I was there back in the early nineties, I was there almost five and a half months and that was nothing. I mean, they didn't think anything of it. Now, as the peer mentoring coordinator, what we'll do is when folks come in as a newly admitted inpatient, we sort of give them a week, almost two weeks to sort of get their sea legs under them before we introduce the program because it's so new and we don't want to hit them with so much. But I tell you, I go in two weeks later and then I go in a week after that to set them up with someone and they're almost telling me we're getting discharged. It's so four and a half, five weeks now is a lifetime. And I these families they're they're accepting the their loved ones in a in a different way that that that they went into these hospitals. I don't know how they're doing it. And some of them are on ventilators and it's they really do them a disservice. So any sort of help that you can provide to the to the families is is above and beyond. It's it's the work that you're doing is is really yeoman's work. And so again, my hats are off and I'm glad that we're we're having a chance to highlight the work that you're doing here today. How about our next question? Philanthropic support has made it possible in recent years to develop programs to support people with SCI and their families and the community. Can you tell us more about the programs you have helped develop? Denise Fyffe: Yeah, so I you know I helped develop with the help of Jean and Dr. Dever Trevor Dyson Hudson. my goodness. Again, a little untied, John McAleavey: Mm-hmm. Denise Fyffe: my apologies. Dr. Trevor. we John McAleavey: Yeah. Denise Fyffe: we collaborated or partnered with her, you know, with clinicians at Kessler Institute for Rehabilitation as well as SCI community organizations like United Spinal, like the Reef Foundation to develop this program. So it was informed by the voices of people who are with lived experiences who could really think help us think about what are some of the gaps in care and that transition home after inpatient rehabilitation is really highlighted as a real key point, right? Time point where people with SCI and their families need support. So the SCI Navigator Program really, I mean, we're borrowing from models that have been you know, established in cancer research and cardiovascular disease models that were helping people transition or navigate the healthcare system that way. But we we put an SCI spin to it, right? Through our different we had different work groups working together to figure out what do we need to target and how can we sub and how can navigators support. people with SCI and their families. So just based on the work again that, you know, Gene and I do, we know we understand the value of, you know, that holistic approach of we'll be John McAleavey: Sure. Denise Fyffe: the family. So we developed this navigator program to you know, start a pro so similar to you, John, right? Like thinking about when we approach John McAleavey: Yeah. Denise Fyffe: people in inpatient rehab. John McAleavey: Sure. Denise Fyffe: our our our clinical team on the inpatient unit will identify someone who you know might be that might be you know that might see some benefits from the navigation program because it actually offers our navigator our navigators offer families and people with SCI an opportunity to think about and support them as they transition home and how do they John McAleavey: Right. Denise Fyffe: they approach them on the second floor I KII or even an outpatient therapy. Any it doesn't have to be just inpatient, but let's let's just start there, that first transition home, to talk to them about the program. So we can offer them education, support, and resources as they're transitioning home. And for some like you know, for some of our our patients, they're not necessarily ready, but their caregiver is saying, you know what, I could use some support because my loved one is coming home and I want to make sure that I'm ready. receive the person at home. So our navigators can actually go home with the caregiver to take a look at the space. They're not providing clinical care, right? It's more like John McAleavey: Right. Denise Fyffe: because our our navigators are have been clinicians, our are are clinicians by training, but they're not use they're not providing a clinical service. It's more of you know coaching, if you will, you know, once they're in, once they are able, once they do go home with our caregivers, taking a look at the space. looking at wheelchair accessibility, you John McAleavey: Yeah. Denise Fyffe: know, and navigating their home and thinking about how they want to make like organize their space for a loved one who's now in a wheelchair. So John McAleavey: Yeah. Denise Fyffe: having those conversations and thinking about, you know, talking to them about things they they should maybe think about, and helping to to guide them in terms of thinking about different options and different resources. But that might be best suited to their needs and their family's needs. Right. John McAleavey: Mm-hmm. I often impress upon our our patients that you know, you have to be really observant. You have to look around and listen and and pick up some of these traits because within a couple of weeks, you're gonna be home and there's not gonna be that call bell on your bed. And you know, the orderlies and the aides are not gonna be able to come down and save the day. So you you really have to file away a lot of this information that you're learning. And and then the fact that you guys come in afterwards and supplement that. is huge because a lot of that stuff is forgotten or the you know they're they're worried about hey I can't walk and I don't know about the bathroom or getting to the bathroom. I want to walk but the fact that you guys are bringing that back around and and hammering that home not only for them but for their loved ones and caregivers is is essential. And so how about some some of the projects and programs that that you've have have helped develop, Jean. Jeanne Zanca: Absolutely, John. So, you know, I mentioned earlier the Community Connect program that that begins with an intake process with our program administrator who learns, you know, through a phone call what what someone's interested in. And then she will connect a client to our clinical team to then have a Zoom call with them usually to do a discussion to find out more about where they would like the team to focus. And then that support either continues through education via Zoom or as I mentioned before, the team coming out for However many home visits are necessary for that family and that individual and that caregiver to help support their needs. And I really appreciated, Denise, what you were saying before about transitions not just being at inpatient rehabilitation. So one of the things that we have observed is that let's say someone's had an had an illness and now their functional level is different than it was. Well, that's sort of life transition as well, where they need some support in a different way than maybe they did before. Or, you know, sadly this also happens. A caregiver may become injured. Maybe it has to do with the caregiving, or maybe they just got unlucky and they slipped and they fell and they twisted an ankle, but now they can't help and they need to come up with a backup plan for how that's going to work or adapt how the caregiver helps to accommodate that injury. Those are some of the things that we see. And then just aging with spinal cord injury. You know, all of our bodies change as we get older. And, you know, I one of our clients that we were working with. we're we're really working on quality of life things, you know, to make sure that that he and his partner were still able to do the things they wanted to do together over time. And, you know, our our healthcare system is very much based on sort of medical acuity and medical necessity and things like that. I think one of the joys of these two programs is that we actually get to focus on living and quality of life and not just sort of the the basic survival kinds of things because long haul, you know, and and we want people to have the best life they can. So that's that's the Community Connect program. There's also other supportive programs that we've had the chance to develop together. One of them is a caregiver peer mentoring program. So you know very well, John, from your your leadership in it, that Kessler Institute has had a an SCI-focused peer mentoring program for a while, working with individuals living with spinal cord injury. And we've had John McAleavey: Yes. Jeanne Zanca: the opportunity through this philanthropic support to partner with the Reef Foundation's Peer and Family Support Program. And with support from my colleague Angela Smith, who listeners may have heard in the first installment of this podcast, we established a pool of 12 mentors so far who are caregivers of people with spinal cord injury who have experience they wish to share and can help connect one-on-one with caregivers. Because one of the things that we heard in our research was how isolated people feel and how You know, most people just don't get it. You know, living with SCI is really different than living with other kinds of conditions. And so many John McAleavey: Mm. Jeanne Zanca: people, even if they have had a caregiving experience before, for an older parent or someone else, it's not quite the same thing. especially when there's there's things that maybe you don't feel comfortable talking about, like the bowel and bladder accidents and what the implications for life those create. you know, being with someone who's who's been on that journey is really important. And so that caregiving program is something that we've had. We're also collaborating with United Spinal Association on the creation of a caregiver video library series to try to address topics of importance not only to new caregivers but to people all along the journey. So right now, a lot of the education that's out there tends to be focused on those earlier phases, understanding the basics of spinal cord injury. But part of what we're seeing is that there are longer term issues like finances and legal issues, preparing for retirement and how inheritance will work. For parents of children with spinal cord injury, what happens when they turn 21? How is that all going to work? So, what we're trying to do is develop a series around topics that are focused on people who are further along in that journey. It's useful for everyone really, but it it a little John McAleavey: Right. Jeanne Zanca: more attention to those other topics where it hasn't been there before. And we've also been involved in helping educate our home health community, both by raising awareness of the understanding spinal cord injury online course that we created as part of that project I mentioned earlier. but also conducting in services with different home health care agencies in the region to help them understand what spinal cord injury is and what the needs are. Because again, it's very uncommon compared to many other conditions. And most agencies don't have in-house expertise about spinal cord injury. And I think John McAleavey: Yeah. Jeanne Zanca: there's a great opportunity for rehabilitation to partner with home health because they're really the eyes and ears and hands that support many members of this community once they they leave rehabilitation. And I think we have a an opportunity and an obligation to help them understand the needs of these clients and to support them as they try to do the best they can for the server. John McAleavey: Mm-hmm. Mm-hmm. How about challenges? There's always challenges that that pop up when you start new new things and projects. And so how have you been working through some of these challenges to refine the programs that you're developing? Denise Fyffe: Well, one of the things I wanted to mention, so our program, we recently started we launched the program at University Hospital, right, which is our level one trauma hospital in Newark. And one of the I'd say the challenges that we find that we're finding is in terms of the range of languages that we can serve, right? Our capacity to serve multilingual ever different types of languages. So one of the things that we're trying to do Is figure out how we can address the translation of the navigation program to serve a more diverse population and extend our reach in that way. And so, you know, I know there are different ways that they get that's done in the hospital, but you know, versus like using a translation service and things like that. So we're exploring different ways to approach translation. in addition, one of the other like I'd mentioned mental health concerns. That's definitely John McAleavey: Mm-hmm. Denise Fyffe: we've seen. So in our program, similar to Jean's program, a a person with SCI and and or their caregiver enrolls in the program. At the beginning of the program, we identify barriers and concerns and try to help people prioritize them because it can seem very overwhelming, right? Everything seems like it's a John McAleavey: Sure. Denise Fyffe: fire that needs to be put out. But helping people like establish some priorities at the beginning using a smart goal kind of approach. trying to help to guide them as they work through those goals really has been essentially the part the way that we help people. achieve or address these unmet needs that they might have mentioned, like you know, at intake, right? So, and mental health needs definitely do come up. Issues related to anxiety and depression have have been the top two, I guess, mental health concerns. So that's the that's John McAleavey: Sure. Denise Fyffe: something else that we're also trying to work through in terms of future projects, thinking about how we can actually really just target to support our our community, people with SCI and their caregivers as they work through some of these emotional well being kind of issues. So yeah, that's that's generally the challenges, I'd say the two top challenges. We're also looking to hire new navigators as well. So John McAleavey: Yeah, yeah. Denise Fyffe: one way to address the translation piece is really hiring someone who speaks a different language other than English. So that's one of our that's one way to address it, right? John McAleavey: No Denise Fyffe: In addition to in addition to other ways of of of addressing that issue. and potentially like hiring a you know a navigator with, you know, that mental health expertise, right? Specific. Yep, yep, yep. So yep. John McAleavey: Of course. Of course. How about some obstacles that you're running into, Gene, with with all that you're doing? Jeanne Zanca: Sure. I I'll echo what Denise was saying about sort of the the the mental health and the emotional support piece being a challenge that we all face. You know, and I you know, I don't know that PTs and OTs are this is necess not necessarily part of our formal training, but it's something you just encounter working with someone, you know, human to human. And so John McAleavey: Yeah. Jeanne Zanca: you know, one action we've taken so far to try to help with that, one of many to be taken in the future, is the development of the inner strength program that that Angela Smith and Marianne Hobby spoke about so eloquently in the previous episode John McAleavey: Yeah. Jeanne Zanca: series. And really the idea was to give some time and attention to the emotional side of things, the struggle of things. It doesn't necessarily have to be about depression or anxiety or something with a diagnosis. It's it's this is hard. You know, it's difficult and it can be frustrating. And so they've created a really lovely, supportive space to just sort of let off some steam and seek some comfort and be. together and so that's that's you know one one thing we're doing in the very complex challenge of trying to support people emotionally through this journey as well. I think other challenges we've experienced on the peer mentoring side are are engaging with caregivers. We've had you know a a a substantial proportion of the caregivers who have reached out to us online saying I'm interested in mentoring you know we match them with a mentor and then we find that they have difficulty connecting. That mentor reaches out and they may not get a call back or an email back. And John McAleavey: Yeah. Jeanne Zanca: we're not sure what's going on, but we suspect, you know, this may be one more thing in a list of many complicated things that someone has John McAleavey: Yeah. Jeanne Zanca: to handle. and we're just I think still trying to find the right balance in being there to support caregivers, but not adding burden to them by making them do one more structured thing. So I think we're we're gonna keep working on that as a team to try to help engage with caregivers and and connect with them because this is a challenge that other organizations have experienced as well. We've got mentors ready to go. we just have to figure out what the best match, the best way to to meet people where they are is. So that's one of our challenges. Another challenge. Yeah. John McAleavey: Mm-hmm. Yeah. You know, we yeah, go ahead. Jeanne Zanca: And just quickly in terms of community connect, you know, the program was really designed to be to help caregiver training. So that partnership between the client and the caregiver help help those clinicians come in there and help them work together so that that caregiver gets more time, more practice, more support in implementing the skills they've been taught. you know, often very quickly and very efficiently in in patient rehab. But we're also encountering a number of clients who don't have stable access to caregivers. Either they have hired caregivers that are kind of rotating through, or they they may not have a partner necessarily, and so they may be relying on more extended family who have other responsibilities. So Trying to figure out how best to serve folks who don't have stable caregiving support is also a challenge. And we're trying to put emphasis on training people to direct their own care, be able to describe to someone else what you need, even if they're not that skilled, so that you can get help from more kinds of people. that's another challenge as well. John McAleavey: Sure. And and which brings us to our final question, as if, as if you don't have enough already on your plate, ladies, how about what are your dreams for the future of of these programs and and maybe some things that that you haven't mentioned today that that might be in the ether that that that you're working on or that that you think could also help the community? Denise Fyffe: Well, I think that, you know, we we develop these models here in New Jersey and we want we don't want to be selfish. Right. We want to extend these programs to, you John McAleavey: Yeah. Denise Fyffe: know, as a spinal cord injury model systems center. you know, that has now been funded over forty years. I'm gonna knock on that one with that one, right? you John McAleavey: Knock on one Denise Fyffe: know, we wanna be able to to share what we've learned. with other spinal cord injury model systems, but also s centers that serve the community that aren't model system centers, right? To inform them about ways that they can support their patients with SCI and their families. so that's that's definitely one future goal that I that I have for this program, extending it to others and sharing our knowledge. John McAleavey: Wonderful. How about you, Gene? You could wrap it up for us. Jeanne Zanca: Sure. Well, I think, you know, bridging off of the theme that Denise mentioned, you know, we recognize how support important community support is. I think a lot of rehab and the way we think about it now, it's it's very center-based. It's inpatient or it's outpatient, and we don't really talk about what happens in between and what happens after. And so, you know, it's been a real privilege to develop these programs that are meant to kind of meet people where they are in the community. And one of the things we've also experienced just with our own little network of programs, Community Connect, SCI Navigator Program, the Peer Program, and so forth, is that it's really helpful to have complementary programs all kind of pulling in the same direction because each John McAleavey: Mm-hmm. Jeanne Zanca: has different perspectives and skills that can be brought to bear on the challenges somebody faces. So one of the things that we have been working on is exploring possibilities for bringing together different community-based programs under The umbrella of a collaborative network to really help us all understand the existence of each other and what we all do, because one of our experiences has been that there's a lot, there's a lot of good work going on out there, but we don't necessarily know all the different organizations that are out there, even within our our area, never mind across the country. So love to see community transition programs be able to be operating together under a common network where we have the ability to know of each other's existence, to be able to cross-refer clients to one another. To teach each other things. So, for example, some centers may have a lot of depth in providing mental health support and emotional support and may be in a position to help raise capacity in other programs to address those challenges through training and through mentoring and through support of those activities. Some centers have really great depth in assistive technology and can help teach other programs how to implement those kinds of solutions with the people they serve, or maybe they can be a a site to which One program refers to them to be able to make use of their expertise instead of duplicating efforts. So we see a lot of places where there are real synergies where where many of us are all dealing with kind of the same challenges and problems and can probably put our heads together and create some shared training and some shared resources that we can all use. And we also see opportunities where each of us has separate expertise that we can then partner with each other to bring that expertise to more people in the country. So we would love to see. More collaborative work amongst community support programs in the future. John McAleavey: Yeah, it's a cliche, but at the end of the day, we're all pulling on the same rope. You know, we're all trying to to better the lives of folks who unfortunately have found their way into spinal cord injuries. And so all of the work that you're doing and all of this is really exciting for me as a member of the community, as I said. And and and I want to thank again both Drs Gene Zanka and Denise Fife for joining me today on the program. and again, for all that you do for for myself and and those of us in the spinal cord injury world. It's it's been a pleasure having you on. And hopefully you'll come back and tell us about any new improvements or any things that that are coming down the pike. It would be and we also hit on a couple of topics that I'd I'd love to do other frequent or do other shows in the future about aging with spinal cord injury because I'm certainly bumping into that now. I was 24 at the time of my injury and now somehow I'm almost 60 and I don't know how that happened, but boy, I'm feeling it. I can tell you that. So there's there's a lot more to discuss and I hope that you'll come back and join me in the future. Jeanne Zanca: Thanks for this opportunity, John. Denise Fyffe: Thanks, John.