Transcription:
The Value of Peer Support After Injury

Melanie Cole (Host):  People with spinal cord injuries and their families often feel anxious about returning home after rehabilitation and dealing with the many challenges related to living with such injuries. Patients with SCI who receive more intensive peer mentorship have more active engagement in rehabilitation, greater self-sufficiency, and lower hospital readmissions. My guest today is Mina Hong. She's the Spinal Cord Injury Peer Support Program Manager at Shepherd Center. Welcome to the show Mina. What have you seen at Shepherd Center as the value of peer support after injury?

Mina Hong (Guest):  Thank you, Melanie, for giving me this opportunity. I have to say, when people enter into a spinal cord injury landscape, it's like entering into a new culture and I also consider that as a subculture because with spinal cord injury, it's catastrophic in all facets. Obviously, it's a physical trauma; there's social, psychological. It's emotional and it affects everyone that loves you and cares for you. So, from the time you wake up to the time you go to sleep, you are affected by the spinal cord injury. So, to say that this is similar to somebody having diabetes or some other situation, I always consider this as a fallacy because this consumes not only you but all the people that love you and are around you. Even though the location that you go back to may look the same, it’s fields are different because my field of vision is different. Catastrophic injury is a spinal cord injury destination for just that reason alone. And so, one of the things that we try to do within our peer support program is to let people know that they are not alone in this journey and that we have countless people that can actually come and show them that, yes, it is different but different isn't necessarily bad. What we like to really do is to make that emotional connection so that we have an open dialogue because of the emotional connection that we make by sharing our personal stories because, at the end of the day, none of our staff members walk home at five o'clock right. We don't walk to our car and drive home and do all the things that we used to do prior to our injury. We do most of our stuff utilizing a wheelchair but that doesn't mean that our lives aren't fulfilled. Does that make sense?

Melanie Cole:  It does make sense and it's certainly a great way to put it. Tell us about the peer support program at Shepherd Center. What are the goals? What is it intended to do?

Mina Hong:  If I have to put it in a nutshell and I guess this is our elevator speech if we had one, it would be to say that we take all of the therapies that patients learn whether is from an occupational therapist, recreational therapist, physical therapist, and nursing staff and physicians and we try to help that turn it into a life skill so that therapy doesn't live in the therapy world. Because, at the end of the day, you have to take all of this information and have to make it user friendly for you and I think that's what we do. The way I'd like to put it is that we are an adjunct to all the clinicians by helping our patients see the value in the training that they receive from our therapists. We share our experience for learning and empathy and understanding of living with disabilities. I guess that's what we call “person centered care” and this is the buzz within the research community but I think we've been doing it forever because that's the essence of what peer support is. We're not so interested in what's on their schedule, for instance, because we have someone taking care of that already but what we want to do is what is of interest to them, what is on their mind and we try to do a conversation that leans toward that emotional connection.

Melanie Cole:  Then, explain some of the services that you're dealing with and some of the adjustment issues that you help them to deal with?

Mina Hong:  I guess I'll just give it to you in a story because we'd like to call ourselves storytellers in some ways because I think that's what we do. We share our stories to make that connection with people. So, let's say somebody gets injured and I'm going to use myself as an example. I was a T-12 L-1 injury who was hurt in an automobile accident and I lost my husband in that auto accident, and I had two children in the car and I was a stay home mom at the time. So, while everyone's trying to help me manage my new body, these are some of the things that I was thinking about:  will I be able to take care of my personal needs like bowel, bladder, taking shower and all of that good stuff is what I say now but all those things that I did before without even thinking twice. And does this mean that I have to be a burden to my family by having them help me? Will I be able to drive? Will I be able raise my children? Where would I live because my home was inaccessible to me? Will I be able to find employment after the disability on account that even before I didn't work? So, all of those are in people's mind as they're trying to work on their therapy because it would be great if we can just say we can shut all of these things off while we work on this but it doesn't work like that. Life just doesn't work like that, does it? Whether you're ready for the next day or not, the sun is going to come up. And so, in that peer support helps people understand that, yes, these are some of the obstacles that you can have but we may be able to bring people from the community who've had these issues or problems and they were able to move past that. So, that we’re able to bring a community member maybe who is a single parent who's doing really well to come have a conversation with me; or, somebody who went back to work or another person who was grieving the loss, not only of their physical bodies but of their spouse or their loved ones. And, you know, I couldn't figure out to make a car transfer to save my life until I saw someone around my size actually do that transfer. Now, this isn't to say that all of this comes like the minute you see it but when you see something it's hard to deny the possibilities, right?

Melanie Cole:  Wow! That a great way to put it.

Mina Hong:  So, what we want to do is that you may not be able to do it right now but the possibility is definitely there. I think what that does is, it helps people see the forest through the trees because when you're confronted with all of these things right at once because this isn't on anyone's bucket list. We don't think about that on March 17th  at around eleven o'clock I might get into a car accident and these are some of the things that I have to have in place. It doesn't work like that. And so, in this, when they have the opportunity to see various people doing the things that they think are impossible because they haven't seen it before, it helps them have a better vision of their future and that difference isn't bad, difference is that it's just different. That's what we do.

Melanie Cole:  What a story. It's fascinating and what a great program and what a story you have. How do you match peer supporters? How do you decide? Is it based on the same injury?

Mina Hong:  We are very, very fortunate and one thing that I have to say is that we have four full time staff at Shepherd Centre and we're very fortunate to have that in our department but there is no way that we can help everyone but we stand on the shoulders or we sit or roll on the shoulders of our volunteers. We have a lot of volunteers who give of their time because they have received help from us. Again, it's just paying it forward. We have a wonderful opportunity to be able to help or get the niche of people that our patients may need. We're pretty much everywhere within the continuum of the Rehab Care because we have the hours now, so we're with co-treating sessions with our therapists. We're part of the patient education classes and this is where we've seen the most difference because instead of having a PowerPoint lecture by nurse educators, we're in front, people that look like them are giving the educations about the stuff that we do on a daily basis and, of course, the nurse educators are on the side but it really helps change the landscape in terms of the way we teach. We do it in a story format because people remember stories and we're part of any kind of group outing they have or the group counseling that patients and family have. We go through social media after they get discharged. So, we try to reach them at every point. Some people may not want it at the front end and maybe want it at the backend but we want to make sure that we're available to everyone. This isn't to say that we can take place of our clinicians because we cannot. We like to think of ourselves as being the cement around the bricks because we consider the brick to be the clinicians and every brick has to have something that holds it together and I think that's what we are--the fillers of the gap. So, that we can, hopefully, have patients become the CEO's of their own lives because at the end of the day you need to be in control. That's what we try to do in a nutshell.

Melanie Cole:  Can you just tell people how to find out more about the Peer Support Program at Shepherd Center?

Mina Hong:  Sure. One of the things that we're very proud of at Shepherd Center is that we don't want to keep this as our own. Anybody can have access to our services. All they have to do is type up SCI Peers on Facebook and they can join our Facebook at start to follow us or follow the conversation or if they have a question that they would like to ask us--because it's a monitored site--they could send the questions that they have in a private message and we will post it as someone from a community member and they can chime in or they can kind of look at all the comments that people are making. Again, we have over 2,200 and some change in membership now. Those are people that have been vetted by us and so what we do is by giving these people opportunities and different possibilities, we give them the opportunity to become more self-reliant and become their own problem solvers and rely less on the health care system because, at the end of the day, I mean, we want to get busy living, not so much busy taking care of our spinal cord injury needs per se because when we're in tune with, that kind of goes to the background, so that your life can be in the foreground. So, that's what we're trying to do at the end of the day.

Melanie Cole:  Thank you so much, Mina, for being with us today. It's really amazing information and a great program. You're listening to Shepherd Center Radio. For more information on the peer support program at Shepherd Center, you can go to www.shepherd.org. That's www.shepherd.org. This is Melanie Cole. Thanks so much for listening.