Theme – like everyone Else
One participant stated that they wanted to be “a regular upright”. This comment was made in the context of the need for bracing at the chest to assist them to stand upright. However, the comment embodies the theme that resonated throughout the conversations with participants, that they wanted to be able to do the same things as their peers. They felt the ReWalk allowed them to do everyday things like everyone else. Participants expressed joy in the experience of doing things such as walking outside, standing in the kitchen, or walking beside family. One participant reflected on the experience of walking outside, “…it was awesome - I kicked a few of the garden leaf piles over, stepped on a few bugs. Haven’t done that in a few years”. Several participants talked about how great it was to be back on the same level as others. A participant who has used a wheelchair for 19 years talked about that first time standing as an emotional experience, “it was the first time seeing eye to eye with someone instead of looking up.” The joy that the different perspective standing provides is exemplified in the following quote:
What a difference it makes from when you’re in a chair and you’re looking at stuff from 3 and a half feet from ground level with your eyes, to when you’re standing up. It’s like almost a whole new world out there, because it’s like night and day. Cause you’re focusing on what’s ahead of you 20 or 30 ft in your wheelchair, but you’re focusing down low. So when you’re standing up, of course you’ve got a way wider field of vision and depth, and so it’s way better – way more enjoyable
While the joys of training were linked to the ability to do everyday things, conversely, training was less enjoyable when it was unlike what others typically do. One of the younger participants stated, “it’s pretty boring just going back and forth [the hallway]”.
The many discussions about the importance of having a purpose and how ReWalk training provided that, allowed participants to feel like a regular person with a job to do. One stated,
I’m thinking most of the emotional benefits I had were from having a reason to get up and go somewhere. And you know, I guess having a purpose. You come here you do your guinea pig thing, and that’s my job. I think most of the emotional benefits came from that more so than the actual walking
In reflecting on stopping training, they further stated, “it feels like I’m getting fired or something”.
Categories
In addition to the theme, there were three categories that describe the participants’ perspectives on training with the ReWalk including learning, changing and contributing. Each category is defined and explained below.
Learning
Participants talked about their learning experiences during the training including their expectations for learning, their perspectives on how they learned to use the ReWalk, and how easy or hard learning was. When asked about expectations for learning and training, participants often had vague goals or said they had “no expectations” or “low expectations.” One participant stated, “I didn’t really have any expectations, I was just happy to be here”. Another echoed, “happy to be part of the program”. Others stated that they didn’t want to commit to goals before experiencing the machine. The majority of participants indicated that they had not done much exploring on the internet to learn more about ReWalk. When participants did have expectations for training, they were generally physical in nature. These goals included things such as improved balance, increased strength, and confidence standing. Several participants talked about walking as a goal but often this was a long term hope, something that was a part of their everyday consciousness regardless of the ReWalk training, “the walking right? Everyone is dreaming of it”. The two individuals who were able to walk prior to training in the ReWalk both said that their goal was to increase their stamina for walking outside of the exoskeleton.
Once learning began, participants described their first impressions of the ReWalk, with one saying, “it’s kind of scary and at the same time, exciting, ‘cause you never know what can happen”. Another participant said,
It definitely wasn’t as comfortable or I wasn’t as stable, and I definitely wouldn’t say fear – but common sense and fear sometimes interfere with my plans. So they were knocking at the door when I got up there the first time, and I was like whoa man this isn’t going to be as easy as I thought
Two participants with complete SCI and one with incomplete SCI talked about the experience of learning to walk with the ReWalk as analogous to riding a bike. “Once you get it, you’ve got it”. The participant went on to say, “once you found those exact little, little movements, you were good to go”. An older participant discussed his learning process over the training period, “at the end it was much more finesse than it was a strength issue anymore, it was just there – you do learn a technique but it’s difficult for them [the trainers] to actually convey to you what that technique is. And you almost have to learn it by trial and error…” He went on to say, “after you get through the first part, then it starts to become more fun”. Other comments suggest that learning is retained once a level of walking proficiency is reached. One participant discussed coming back after a three week absense, “Maybe it was good to take a break, give your brain time to go over all that stuff, process it, right? Then when I came back, it was easier”. Several participants experienced periods of time during the training, when they could not train. Generally, participants had minimal or no loss of ability with a training break, based on quantitative measures of walking (see companion paper).
The amount of effort required during the learning process was also noted, not just physical but also mental. “It didn’t just walk on its own” was one of the initial comments of a participant as they learned to adjust to the machine and the movements needed to facilitate walking. This experience may have been more difficult for that particular participant as they did some walking at home with a walker, and may have also had to unlearn their current walking techniques (i.e., without the exoskeleton). The amount of effort required lessened as learning occurred, as expressed by one participant with complete SCI, “…probably exerted as much effort in that first day taking those ten steps at a time as I did when I did the 900”. Several participants talked about the effort required of the arms, “my arms getting used to it. ‘Cause obviously I wouldn’t be using those muscles as much, just wheeling”.
Changing
Participants were specifically asked about any changes they perceived occurring during training or in the two months after training stopped. While they talked frequently about emotional/mental health changes, participants often needed verbal probes to reflect on physical changes. We specifically asked about spasticity, pain, and bowel and bladder function. Four participants noticed a decrease in their spasticity, two of whom were able to reduce their dose of an antispasmodic medication while training. Two participants said their neuropathic pain decreased while training and both participants mentioned that the pain had been coming back over the two months following the end of training. Another physical change that occurred in a few participants with complete SCI was improved bowel routines. Three participants said that walking in the ReWalk led to faster and more regular bowel movements. One indicated that change was maintained two months after the end of training. Additional physical changes mentioned included improved circulation. One participant said, “I started to feel like I’m not cold as much all the time” and another two participants noticed improved sensation, one in their foot and the other described feeling hungry for the first time since their injury.
A second aspect of the discussion of physical changes was that training in the ReWalk provided an opportunity for a change of position, which was regarded as a positive thing; “just getting up and actually doing something different other than sitting down”. Change in positions was described as analogous to what people who walk do when they get home after work, “the first thing you want to do when you get home is go sit down. You’d be like I need to change positions, right. So that’s what it’s like... So [the ReWalk is an] opportunity to have something like that in day-to-day life”. In fact, one participant described the ability to stand easily as the best part of training.
Discussions of changes to mental and emotional well-being were frequent and interspersed throughout the interviews, often without specific prompting. Overall, participants found that their participation in the ReWalk study enhanced their mental well-being. They spoke of their time training in the ReWalk as encouraging saying “it gives you more hope” and “I feel tall and much happiness inside”. Another participant stated “it’s definitely helped me mentally as well as physically, it’s boosted confidence and it’s brought back this joy to my life”. Another stated, “to be able to go out in the sun and go for a walk – it’s unbelievable what that does for you”. These expressions of joy were sometimes contrasted with disappointment and sadness at the end of training. When reflecting on the first two months after training had ended, a participant said he felt “greedy” and wanted more. He went on to say “I walked again with ReWalk and then just sat for two months or three months at home, – it’s totally [laughs] you can say – it doesn’t feel good”.
The benefits to mental well-being over the course of training were not solely due to regular exercise or the opportunity to change positions. In fact, there was much discussion about the positive mental effects of having regular social interaction and being part of a community. This benefit was expressed by many participants. For example, one older participant, who reported that they typically spend a lot of time on their own, spoke of the benefit of regular social interaction saying “some of the other benefits that have come from this too are just the interaction with the people that were running the program… I feel like I became friends… because they were there every day”. This sentiment was echoed by one of the younger participants who remarked that “if you actually talk to [the trainers] like the way I was able to talk to them about stuff, you can connect with them, everything else just goes out the window”. When asked if they missed the walking two months after training had ended, one participant responded saying “Actually I do, part of it’s the company… like I really enjoyed working with [the trainers]”.
Contributing
When asked about their motivation to participate, the majority of participants talked about the importance of giving back and contributing. They talked about how glad they were to share their time, their efforts, and their user’s perspective and feedback of this new technology. Individuals were keen to participate in this study even if there was going to be no direct benefit to them. Before beginning training, one participant said “Even if it doesn’t benefit me, if I go through the study and you take all the notes, it’s going to benefit someone else and it’s going to benefit your research”. Another, when talking about the reasons for participating in the study, said “I just want to help. And this is how I can help, ‘cause I just donate myself to science”. Another said “I was thinking it was leading to something that would be practical down the road for someone. It was more a stepping stone than being practical for me, and me getting a huge amount of benefit out of it”. Part of contributing, and the happiness to contribute, seemed to be linked to the promise of technology to allow participants to do things they used to do as a “regular upright”. One participant stated, “I’ll just keep throwing myself under the bus. Yeah, go ahead inject wires into me, do whatever you want, eventually something - they’re going to come up with something real big, then I’ll be rocking and walking”.
Following the training period in the ReWalk, participants contributed to our knowledge of the device by reflecting on its usability, including how they would use it if they were to take it home. Nine of eleven participants said they would take the ReWalk home if the cost of the machine was not a factor. These individuals often responded enthusiastically saying “I’d grab it and go”, “I would love it” or another “Yeah I will. I know it’s helped a lot for me”. The participants who said they would take the ReWalk described the various ways in which they would use the device at home. Some said they would use it to walk outside, others mentioned it would be useful for chores or jobs that required standing and three participants specified that they miss being able to stand while cooking and that the ReWalk would be useful in the kitchen. One participant specified that they would use it at a community centre or gym where there is access to a track because there isn’t enough space to walk with the ReWalk in their home. A participant with an incomplete injury who walked independently prior to training in the ReWalk, envisioned using the device to increase the intensity of walking at home, saying “I’d like to be able to do those distances, just to push myself and get stronger, but I don’t have the means at home. Whereas if I had [the ReWalk], I think I could”. Other more specific feedback about the exoskeleton was related to wanting to be able to walk without a backpack unit, as well as streamlining and making the exoskeleton itself less bulky. Some of these improvements are already in progress and in fact were released during the trial. In general, participants felt like the device wasn’t ready for home use. For example, one participant commented, “it’s not ready for individual use. The user interface needs to be worked on”. Another participant stated, “it’s a pretty primitive machine and isn’t ready for home use, …will there down the road be a version of it that might be? Maybe.”
Though most participants said they would take the ReWalk home even though they couldn’t use it by themselves (i.e., must be used with a trained companion for safety), the two participants who said they wouldn’t take the machine did so because they needed assistance to safely ambulate in the device. One participant went on to clarify by saying “There’s no way I would feel confident enough to use it by myself, I need a spotter behind and in front… I don’t think I’d use it at home but I’d like to have access to one”. The second participant who said they would not take the device home also said that they would like to have access to one in a rehabilitation setting “It’s a good system… if it was just like physiotherapy you went to a location and they had a machine and you walked in it for an hour for exercise”.