Abstract
Context/objective
Spinal cord injury (SCI) is intensely life altering, affecting multiple body systems and functions, including the ability to walk. Exoskeleton assisted walking (EAW) is a rehabilitation tool that aims to support locomotor training, yet little is known about the patient experience. The purpose of this qualitative study, part of a prospective observational case series, was to increase our understanding of SCI patient experience using a robotic exoskeleton in this acute post-injury period.
Design
A qualitative descriptive approach was implemented in this study, with the aim to explore and understand participants’ experience with EAW training.
Participants/setting
Nine of the 11 participants enrolled in the observational study agreed to participate in an interview. All participants had suffered a SCI, and had received their trauma care and inpatient rehabilitation at a tertiary center in Calgary, Alberta, Canada.
Results
The benefits to EAW use described by participants were primarily psychological and included the joy of eye level contact, excitement at being able to walk with assistance, improvement in mood, and hope for the future. Potential physiological benefits include increased strength, decreased spasticity and reduced pain. Challenges to EAW use include weakness and fatigue, and a fear of incontinence.
Conclusion
Qualitative research will continue to be an important component in future research on the use of EAW training as part of the rehabilitation process. Increasing understanding of the participants experience with this novel therapeutic modality and technology will be fundamental to improve its implementation in clinical practice.
Keywords: Acute spinal cord injury, Exoskeleton assisted walking, Rehabilitation, Patient experience
Introduction
An estimated 86,000 Canadians currently live with spinal cord injury (SCI).1 SCI is often intensely life altering, affecting multiple body systems and functions.2 Mobility limitations are common in SCI and the goal to ambulate has been identified as important in this population.3
Locomotor training is a common rehabilitation intervention directed to improve ambulation following SCI. Historically, locomotor training has been comprised of over ground ambulation with assistance from physiotherapists and gait training equipment (i.e. walkers, canes and harnesses). More recently, it has included the likes of body weight supported treadmill training and robotic assisted stepping in conjunction with treadmill walking (i.e. Lokomat).4 These forms of rehabilitation have all shown limitations with ease of use; often requiring high energy demands from therapists and participants.5 In the past several years, locomotor training after SCI has been bolstered by the addition of self-supporting, wearable robotic exoskeletons.
Exoskeleton assisted walking (EAW) is a uniquely valuable rehabilitation tool that aims at providing equally beneficial locomotor training while requiring minimal effort from the therapist and patients. Indeed, EAW offers the opportunity for high-dose, reciprocal stepping in an over ground setting with low user exertion consistent with light to moderate intensity exercise training.6 Whether the training modality is EAW or otherwise, it is hypothesized that any rehabilitation aimed at promoting neurological recovery be initiated as early as feasible post injury with the aim of capitalizing on the neuroplasticity of the central nervous system.7
To our knowledge, qualitative methods, which provide a rich description of an experience, have been used in only five previous studies examining SCI and exoskeleton;8–12 but none explored the experience of EAW in the acute post-injury period.
Understanding EAW training experiences, as a part of the inpatient rehabilitation process, is essential to appreciate the positive and negative aspects of using this technology, along with perceived benefits and challenges; all of which, will contribute to improve this training modality. A qualitative study is particularly important at this stage in the development of EAW training and its incorporation into a rehabilitation program, as this is a new technology, which is continuingly refined. Factors such as the timing of using the exoskeleton, and the level and completeness of injury most likely to benefit from incorporating this technology into their rehabilitation, are still being determined. The acute SCI phase is important to study specifically because in this period, persons with SCI commonly have more medical complications and are less adjusted to their changes in physiology including symptoms of orthostatic hypotension. Consequently, the purpose of this qualitative study was to increase our understanding of SCI patient experiences using a robotic exoskeleton in the acute post-injury period.
Methods
Context
This qualitative study was part of a prospective observational case series13 designed to assess the safety and feasibility of using a robotic exoskeleton with the Ekso GT (Ekso Bionics) for persons with acute SCI (i.e. less than 6 months from injury). A detailed description of the Ekso GT is published elsewhere.14,15
Participants were recruited from acute and tertiary neurorehabilitation units in a tertiary referral, level-1 trauma center in Canada, between June 2016 and November 2017. Informed consent was obtained and medical clearance was provided by a responsible physician with respect to spinal stability and overall appropriateness for the EAW program. The participants trained with the Ekso GT for up to 25 one-hour sessions, within less than 6 months from initial SCI. The program was adjunctive to existing inpatient rehabilitation protocols.
Participants needed to meet the body metric requirements of the Ekso GT exoskeleton manufacturer. Other inclusion criteria required participants (1) to be inpatients at the time of recruiting; (2) to be within the first 6 months following SCI, (3) to be at least 15 years of age; (4) to have a traumatic or nontraumatic SCI; (5) to have a C1-L2 level of injury; and (6) to have complete or incomplete injuries (American Spinal Injury Association Impairment Scale [AIS] A, B, C, or D). Exclusion criteria included the inability to communicate in English, untreated or active lower extremity fractures, and medical instability. A bone mineral density scan and minimal criterion measure were not included in the exclusion criteria because patients with a new SCI are not expected to have the extreme losses in bone mineral density seen in the chronic SCI population.
Qualitative approach and research paradigm
A qualitative description approach was implemented in this study, aiming to discover and understand participants’ perspectives on the use of EAW training.16 Our guiding world view was constructivist, including the relativism of ontological naturalistic research and epistemological subjectivism, aimed at learning from and describing participant’s experiences and utilizing that knowledge to inform how EAW technology may be utilized and improved.
Sampling strategy
A convenience sampling strategy was implemented by inviting all participants in the main observational study to partake in the qualitative study. These participants were asked by a member of the research team (KM) if they were willing to be contacted by another member of the research team (RC) to learn more about this qualitative study and be invited to participate in an interview. Nine of the 11 participants agreed to be contacted and all agreed to be interviewed.
Questionnaire development
The development of the interview questions was informed by published research that had explored participants’ experience walking with an exoskeleton, albeit later in the recovery process.8 The clinical members of the research team, who had experience working with these participants in the early rehabilitation period, also suggested questions to be asked. The final question provided opportunity for the participants to say anything else about their experience that they hadn't already discussed.
Data collection
Nine in-depth one-on-one interviews were conducted to discuss participants’ experiences with standing and walking in a robotic exoskeleton, as part of their rehabilitation program, and with the overall research process. Eight of the nine interviews were completed by telephone and participants were at home; with one conducted in person in the hospital while a participant was waiting to be discharged. No non-participants were present during the completion of the interviews. All interviews were conducted between January and March 2018 and ranged in length from 10 to 35 min. These interviews were conducted by a single member of the research team (RC) who had not worked directly with the participants in the exoskeleton walking component of the observational study. The interviewer followed a semi-structured interview guide (Table 1). All interviews were audio-recorded and transcribed, and back-up notes taken.
Table 1.
Semi-structured interview questions.
| Tell me about yourself and your SCI |
| Why did you agree to be part of the exoskeleton walking study? |
| Could you describe what the experience of walking in the Ekso was like for you? How did it make you feel? Did this change over time? |
| Did your opinion of walking in the Ekso change over time? |
| Did you complete all 25 training session. If not, why? |
| What types of benefits did you experience? Any functional benefits? |
| What were the most positive aspects? |
| What were the most negative aspects? |
| How did you feel after your participation in the Ekso study was complete? |
| Is there anything else you wanted to say that you haven’t had a chance to talk about yet? |
Data analysis
Data were analyzed using a thematic analysis approach Miles et al.17 The interview guide served as an initial analytic template. One of the authors (GM), who is an experienced qualitative researcher, was involved in the coding of the data. Once the preliminary themes and sub-themes were identified, the research team member who conducted the interviews and the team member who had worked directly with the participants throughout their exoskeleton experience, came together to discuss the preliminary analysis. The whole team was involved in reviewing the preliminary analysis and contributing to the refinement of the themes and sub-themes. The team worked together throughout this final analysis and interpretation phase. All themes were inductively defined, meaning that they were not identified a priori from other studies or theoretical frameworks. Participants were not approached to engage in member reflection, primarily because of where they were at in their recovery process. Given the small amount of data to analyze, we determined that NVivo was not required to support the data management and analysis of this particular data set. The data were initially coded inductively to identify as many points as possible arising from the data. Then these coded pieces of text were reviewed to identify which of these codes might fit together under broader themes. These themes were then analyzed with the purpose of identifying relationships between themes, creating a “data analysis spiral”.18 Final themes were determined once researchers agreed that they could not identify any new themes from continued data analysis.
Research team and reflexivity
Members of our research team included women and men with diverse experience in SCI clinical care and qualitative research methodology, ranging from PhD to MD academic formation. Specifically, the researcher who conducted the interviews had experience in conducting semi-structured in-depth interviews and did not have a preexisting relationship with participants. All participants were clearly informed about the purpose of the interviews before conducting them. Our team held the assumption that treatment modalities like the exoskeleton walking are important for the general wellbeing of people with SCI and for the promotion of neurological recovery.
Statement of ethics
This study received approval from the University of Calgary’s Conjoint Ethical Review Board. All participants reviewed and signed a consent form indicating that they understood the purpose of this study, and how the information they shared would both be kept private and used.
Results
Participants
All participants had suffered a spinal cord injury, and all received their trauma care and then inpatient rehabilitation at a tertiary center in Calgary, Alberta, Canada. Seven of the nine interview participants were male and two were female, with their ages ranging from 25 to 82 years. Their total length of stay in the tertiary center, including both acute care and inpatient rehabilitation, ranged from three to eight months. Two of these participants had experienced a spinal cord injury as a result of elective back surgery, and the other seven had been injured in a traumatic accident, including: motor vehicles (both automobile and motorcycle); workplace; and mountain hiking/climbing. These participants had experienced a range of spinal cord injuries, some complete and some incomplete, and at a variety of levels ranging from C6 to L2; the majority involved the thoracic spine. Participant characteristics are reported in Table 2.
Table 2.
Participant characteristics.
| Participant | Age | Sex | Level of Injury | Time since Injury (weeks) |
AIS | Sessions completed |
|---|---|---|---|---|---|---|
| 1 | 50 | Male | T7 | 7 | A | 0 |
| 2 | 25 | Male | T12 | 8 | C | 25 |
| 3 | 32 | Male | L2 | 10 | C | 25 |
| 4 | 31 | Male | T7 | 15 | A | 25 |
| 5 | 29 | Male | T7 | 3 | A | 13 |
| 6 | 82 | Male | T10 | 9 | D | 20 |
| 7 | 38 | Female | C6 | 8 | C | 18 |
| 8 | 75 | Female | L1 | 12 | C | 25 |
| 9 | 28 | Male | T6 | 11 | C | 25 |
Of the nine interview participants, five completed all 25 of the exoskeleton training sessions as part of the research, and four did not. Three of these four participants completed more than fifteen sessions, and the reason they didn’t complete all 25 is that they were discharged from hospital and they lived outside of the city making it difficult to participate in the sessions as an outpatient. They stated they wanted to get out of the hospital and go home.
Main themes
Key findings from this research are organized under five broad thematic headings. These are summarized in Table 3, along with illustrative quotes for each theme and sub-theme.
Table 3.
Key findings.
| Quote number | Illustrative quotes | |
|---|---|---|
| Theme 1. Reasons to participate in the exoskeleton study | ||
| To make a contribution to a research project that might help other people in the future | Q1 | “I’m from the Ukraine. Lots of guys don’t have a chance to use this thing, so it will be nice to kind of help bring it to the rest of the world that is not so developed as much yet. I say it’s not now, but I still have lots of (( that I enjoy myself and I kind of have some goals. But one of the goals in the future is to help and to make people sacrifice something. To give some funds or something like that.”(P07) |
| To also benefit them, and help them with their own goals | Q2 | “I’m very goal-driven. So I felt like being in the Exoskeleton was about trying to get more steps and get farther and move farther. So I guess essentially what it was being in the Exo Skeleton was just like a mental barrier that I was able to overcome because it was allowing me to feel like I was moving forward with my rehab.” (P05) |
| Theme 2. Experiences with the exoskeleton | ||
| Sub-theme 1. Positive experiences of standing and walking in the exoskeleton | ||
| Participants described the experience as thrilling and highly motivational. | Q3 | “My first session I walked … over 200 steps. And I just felt amazing about that. That just picked me up and motivated me to keep on trying with all my therapies.” (P06) |
| The perceptions of difficulty using the technology changed as they progressed through the session and was perceived as getting easier. | Q4 | “Initially it was very hard and I could barely make it down the hall. And then by the end I was able to kind of cruise around and so it became almost effortless near the end compared to the start.” (P05) |
| Sub- theme 2. Challenging experiences of standing and walking in the exoskeleton | ||
| Participants expressed a significant amount of effort required to walk in the exoskeleton | Q5 | “Extremely tiring effort. As we slowly were using it more and more it got way more easy to use. But at the first it was extremely tiring and the mental aspect of remembering the gait pattern and what the different chirps with the machine means.” (P08) |
| Participants reported challenge with blood pressure regulation, particularly during the initial training sessions | Q6 | “Not pleasant because I couldn’t stand up as long as was required. I was passing out after about two minutes or so standing. Yeah, I couldn’t walk.” (P03) “But there was some parts of each session that I’d have to stop. Like give me a questionnaire or whatever and when we stopped that’s when my blood pressure would start going down. That’s why I would have to go down slow.” (P06) |
| Some participants experienced anxiety for potentially having bowel and bladder incontinence during training sessions. | Q7 | “I had a lot of anxiety about standing because at that time I was having accidents [bowel and bladder] and all that kind of thing. So I had anxiety about that.” (P06) |
| There were reports of pain and/or weakness, which caused unpleasant training experiences. | Q8 | “[The most negative aspects of the exoskeleton training was] … the disturbance of my fresh injury … [causing] back pain and just a general weakness.” (P03) |
| Sub-theme 3. Benefits experienced with standing and walking in the exoskeleton | ||
| Participants reported psychological benefits, including hope, motivation, encouragement and increased self-confidence. | Q9 | “I can’t tell you how much getting up in that Ekso and being able to walk you know, even though it was practically doing the walking for me, but I was upright and I was walking. And that was a huge boost to my thoughts.” (P02) |
| Participants reported physical body benefits, including muscle strength, better mobility, and having the opportunity to walk again. | Q10 | “It was thrilling … It was tough and physical; you had to work hard at it. It gave me another chance to exercise and yeah … for me it was the highlight of my PT period at the Foothills. I actually walked.” (P01) “ … when the study first finished I had movement in my legs. I hadn’t the strength to actually walk yet, so I did a little more physio and I did the physio and gained muscle strength. I was able to stand walk, so I think the Exo Skeleton really helped get my nerves on track.” (P08) |
| Participants reported emotional benefits also for their families and friends | Q11 | “I’m pretty sure Mom cried when she saw me walking, so that’s good.” (P08) “it gave them all hope and they were all—my friends and my wife—it was a delight to see me vertical and walking.” (P01) |
| Participants reported emotional benefits from being able to stand during training sessions, allowing them to see the world as before the injury. | Q12 | “It was really nice actually because you’re so used to sitting and being in that lower position standing up and being in control of the robot was really interesting. It gave you that eye-to-eye contact that you kind of missed out on and still miss out on now.” (P04) “Upright walking and seeing the world from a normal position again” (P02) |
| Participants reported improvements in different impairments, including pain, bowel and bladder control, and better blood flow. | Q13 | “Of course it’s less pain, but is it less pain because of healing too?” (P07) |
| Q14 | “With the bowel—that’s just an example. The bowel and bladder I never really quite understood how I regained that. If it just kind of naturally happened or the fact that I was upright in that allowed for gravity to also help assist. So I would assume that it would help for sure” (P05) | |
| Q15 | “So I think of course being in the exoskeleton helps that circulation because of gravity and you’re standing up in the right position. So it all just slowly became better for me, which I’m still very lucky obviously.” (P05) | |
| Theme 3. Overall positive benefits of participating in the research study | ||
| Feeling that they’d made a valuable contribution to research | Q16 | “I just thought it was a good opportunity and I’m always open to help research in the medical field because it’s so important. And I figured that if I participated in the study I might help someone else down the road in the same situation as me and I knew it was pretty rough to begin with, so I went along with it” (P08) |
| Giving participants something else to do and focus on while in hospital | Q17 | “It definitely made my days a whole lot more fun. Instead of just going to physiotherapy for forty minutes and then sitting in my hospital room. It gave me something to look forward to doing … ” (P09) |
| Improving mental health through fostering hope. | Q18 | “Yeah, it gave me great hope and possibly if I work hard enough I’m going to walk one day and without the equipment. And I still have enough determination and when you have hope and you have focus, then you’re on your way.” (P01) |
| Theme 4. Overall negative aspects of participating in the research study | ||
| The most common negative aspect of participating in the research was the disappointment and frustration participants felt about the limited number of sessions they had in the exoskeleton during the research. | Q19 Q20 |
“It’s just the fact that it was so short. I think if we opened up more sessions, I could do that and then it would be great … ” (P08) “I kind of wish I could have kept going with it. I don’t know if it would have continued to speed my progress, but I wish I could have continued or gone into a different exoskeleton that helped to further my mobility.”(P05) |
| Theme 5. Longer term impacts | ||
| After the intervention, most participants are doing well, and they feel that their participation in the exoskeleton research study was a big contributing factor to their wellbeing, as this experience provided them with a foundation to build on once they were discharged from inpatient rehabilitation. | Q21 | “My experience in the exoskeleton was obviously a positive one and I’ll be able to move forward and continue to be positive about it … it was a good, positive experience and it allowed me to have kind of a bit of a foundation to move forward for sure.” (P05) |
Theme 1. Reasons to participate in the exoskeleton study: personal benefit and altruistic intentions.
Participant’s narratives showed that the main reasons to participate in the EAW training were related to either experiencing personal benefit (see Table 3, Q2) or contributing to the benefit of others in the future (see Table 3, Q1).
I might as well do as much as I can while I’m there and take all the opportunities that I can just to see if it will either help me or help somebody else one day. (P06)
Some participants also expressed a desire to engage in activities that are not commonly included during their inpatient rehabilitation experience.
It was really nice actually because you’re so used to sitting and being in that lower position standing up and being in control of the robot was really interesting. It gave you that eye-to-eye contact that you kind of missed out on and still miss out on now. (P04)
Theme 2. Experiences with the exoskeleton: the good, the bad and the amazing.
Participant’s narratives regarding their experiences participating in EAW training included the following three sub-themes:
-
Sub-theme one- participants experienced excitement and motivation with standing and walking in the exoskeleton (see Table 3, Q3), especially as the utilization of the technology got easier over time (see Table 3, Q4).
“My first session I walked … over 200 steps. And I just felt amazing about that. That just picked me up and motivated me to keep on trying with all my therapies.” (P06)
-
Sub-theme two- participants experienced some challenging moments with standing and walking in the exoskeleton, including the perception of high physical demands (see Table 3, Q5), blood pressure changes (see Table 3, Q6), transfer difficulties, pain (see Table 3, Q8) and anxiety related with loosing sphincter control (see Table 3, Q7).
“Yes, there was a big difference [from the beginning to the end of the study]. It was very, very tiring and a lot of physical effort. My blood pressure was a huge issue at the beginning and at the end … I think I could have [gone] all day long in that thing and had no issue at all.” (P09)
-
Sub-theme three- participants experienced physical gains such as muscle strength (see Table 3, Q10) and impairment improvement (see Table 3, Q13, Q14 and Q15). In addition, participants reported psychological gains, in the form of increased hope, motivation and self-confidence (see Table 3, Q9), along with emotional benefits from being able to stand and see the world as before their injury (see Table 3, Q12), all of which transferred to the family and social levels, fostering emotions of hope and delight in family members and close friends (see Table 3, Q11).
“I got pride, I got exercise, I got hope, fascination, just a whole bunch of positive. I can’t think of a single negative. The only sad part was I couldn’t do it every day.” (P01)
Theme 3. Positive aspects of participating in the research: being part of something new.
The positive aspects of participating in this research study were related with the novelty of this therapeutic option, which fostered positive mental health, including feelings of meaningfully contributing to research (see Table 3, Q16), joy of doing something more in the hospital (see Table 3, Q17) and hope for the future (see Table 3, Q18).
Because of the new technology and I could see that in ten or twenty years being kind of a modern-day thing for people who have suffered the injury as high up as I have or even higher as a quad. So I think it was a good step for me to get into something that was new you know. (P04)
Theme 4. Negative aspects of participating in the research: short intervention duration.
The negative aspects perceived with participating in the study were mostly related with the short duration of the EAW, which conditioned emotions of frustration as participants would have want to receive this therapeutic intervention for longer periods of time (see Table 3, Q19 and Q20).
It’s just the fact that it was so short. I think if we opened up more sessions, I could do that and then it would be great … (P08)
Theme 5. Longer-term impact: hope for recovery.
The main long- term positive impact of participating in EAW was related with a sense of building a foundation to move forward and achieve recovery, which contributes to their wellbeing (see Table 3, Q21).
But yeah, it was a good, positive experience and it allowed me to have kind of a bit of a foundation to move forward for sure. (P05)
Discussion
In this novel qualitative study, we were able to elicit participants’ experiences with EAW as part of inpatient rehabilitation within the first six months post SCI. We identified five main themes that suggest EAW produces physical, mental and social benefits for people with SCI and their families, during the post-acute period after injury. In addition, these themes suggest that participating in this kind of research project is facilitated by a sense of being part of something new along with a sense of altruism or feelings of contributing to others future benefit. Finally, our results clearly show that doing EAW is related with positive long term impacts, mainly through the promotion of hope during this early stages in the journey of people with SCI.
Psychological benefits of EAW
Our results showed that there are many psychological benefits of using EAW, beyond mobility. One participant specifically commented liking the experience of being upright and being able to have some eye-to-eye contact. This aligns with the research conducted by Thomassen et al,11 which found that the exoskeleton allowed participants to do everyday activities, like everyone else, such as looking people in the eye.
The mental health benefits reported with the EAW training are consistent with other literature that describes benefits of being in the upright position and standing after SCI in later stages. An improvement in psychological wellbeing,10 including an increase in positive physical self-concept scores, and a decrease in depression scores, have been reported with standing after SCI.19 Consequently, we interpret that there are positive effects on the emotional health of people with SCI during the post-acute or inpatient rehabilitation stage and for this reason should be implemented. However, further research should be completed to confirm the existence of these positive effects in order to establish EAW as a best practice recommendation to improve mental health in this setting.
EAW promotes hope
Many participants described the experience with EAW as fostering hope. The literature supports the importance of the role of hope after SCI. Hope, a positive orientation toward future improvements, is associated with health and well-being. Several studies have shown that hope plays an important role during inpatient rehabilitation, specifically that it is associated with life satisfaction.20 It has been suggested that interventions should be developed and provided that focus on fostering hope in order to facilitate positive outcomes for individuals with SCI. According to our findings, incorporating EAW in acute SCI rehabilitation programs may be one mechanism to achieve this.
EAW positive social impact
Many participants spoke about the “hope, amazement and delight” that their family and friends experienced when they saw them walk in the exoskeleton, with some saying that they became increasingly positive with and encouraging of the participant. Participants were pleased to see how excited and hopeful their family and friends became; it made them feel good. Overall, this shifting in the mood of family and friends from sad to hopeful, contributed to lifting the mood of participants. This is not an unexpected finding, in that we know family/caregivers and friends can play an important role in supporting loved ones dealing with serious and/or disabling health conditions including SCI.21 For this reason, many health care settings strive to practice participant and family centered care where they welcome family/caregivers/close friends to spend time in hospitals with their loved ones.22 Consequenlty, we propose that the use of EAW during inpatient rehabilitation could be also indicated for the wellbeing of family and close friends, which constitute a tangible positive effect on the social support network of individuals with SCI in the post-acute setting.
EAW positive effects on impairments and activity limitations
Participants highlighted subjective improvements in strength, mobility, edema, digestive tract function, spasticity and pain; although they recognized it was difficult to determine how much of these improvements were due to the EAW and how much to the natural recovery process. These findings align with previous pre–post intervention studies of walking with exoskeletons, which have shown benefits including improved mobility,23 improved cardiovascular performance,24 increased leg muscle mass with decreased fat mass,25 increased bowel movement regularity,26 and decreased pain and spasticity.26 Our results clearly demonstrate the potential safety and highly beneficial effects on improving impairments and activity limitations during inpatient rehabilitation in SCI. Further studies need to confirm these findings, contributing to the evidence of the efficacy of EAW implementation in post-acute settings.
Particular considerations of implementing EAW in the post-acute period
One participant described having symptoms of orthostatic hypotension that led to earlier sessions in the exoskeleton being quite challenging. This improved over the course of the training. Our findings suggest that studies are still needed to explore the physiological effects of EAW in the sub-acute period, as in this early period, persons with SCI often have complications including autonomic instability, orthostatic hypotension and increased nociceptive pain from the post-operative site that may affect participation. Consequently, we think that the ideal timing of introducing EAW during the early stages post injury needs to be better defined, but the implementation in EAW seems to be safe. Another participant described having a lot of initial anxiety about standing, and then walking in the exoskeleton, because of his lack of bladder and bowel control. He was worried he would have an episode of incontinence. This situation highlights another difference between acute and chronic SCI. In acute SCI, participants are still learning how to manage bowel and bladder to prevent incontinence, whereas participants who are past this acute phase are already on established bowel and bladder routines.27 This might be one consideration when determining the optimal time for a particular participant to be incorporating exoskeleton assisted walking in her rehabilitation program.
Participating in EAW research
The most common negative aspect of participating in the research according to participants was the disappointment and frustration they felt about the limited number of sessions they had in the exoskeleton. Some stated that they could walk in it every day and that they wished they could participate in additional sessions over a longer period of time. They also wanted to have access to the exoskeleton as an outpatient, which represents a clear interest and desire to participate on further research on the use of EAW in a other settings, as has been found in other publications.28 Moreover, participants greatly valued their role in contributing to research, expressing a desire to benefit others in the future. This sense of altruism has being identified as a major facilitator for the participation of people with SCI in clinical trials23 and along with interest in knowing more about the device, has been identified as a major factor in other study exploring perspectives from people with SCI learning to walk with EAW.9 Consequently, our finding suggest that is feasible and important to continue the research efforts on EAW to better understand its optimal parameters, as there are still knowledge gaps regarding its application in different settings.23
Study limitations
The sample size for this qualitative study was small, and did not include participants from a diversity of background. This increases the likelihood that these findings may not be representative to the robotic exoskeleton experience of all persons with acute SCI. Although participants with chronic SCI may experience some of these same benefits, this study only included participants with acute SCI and our findings may not be transferable to this population. Caution should also be used when translating these findings to exoskeleton programs that have different objectives (e.g. improving walking abilities) and/or different attributes (e.g. number or duration of sessions). Adjustment to injury and expected psychological health must also be taken into account, as these will differ depending on a variety of factors, such as time from injury onset, type and level of injury.
Finally, the Canadian public health care system may have longer lengths of stay during the acute period for inpatient rehabilitation compared to other jurisdictions. Consideration could be given to extending EAW into outpatient rehabilitation settings.
Conclusion
The findings from this qualitative study provide us with a deeper understanding of the post SCI participant experience with exoskeleton assisted walking, as part of an inpatient rehabilitation program. This understanding of the participant experience is critical to the development of person-centered recommendations regarding the role of exoskeleton assisted walking in a SCI rehabilitation program. For example, learning from participant experience will help to ensure that the devices are used at the optimal time post-injury and with participants who are most likely to benefit physically and mentally. Our findings suggest that like any component of a rehabilitation program, it is important to discuss the EAW option with participants, including its possible benefits and challenges, to help them make an informed choice regarding whether this intervention could positively contribute to their function and overall wellbeing.
More research is required to determine the extent to which EAW contributes to function, quality of life and overall being, when incorporated into an inpatient SCI rehabilitation program. In addition, qualitative research will continue to be an important component in these research efforts as continuing to understand participants’ experiences with this novel therapeutic modality and technology will be fundamental to improve its implementation in clinical practice.
Abbreviations
- SCI
Spinal cord injury
- EAW
Exoskeleton assisted walking
- AIS
ASIA Impairment Scale
- ISNCSCI
International standards for neurological classification of spinal cord injury
Disclaimer statements
Contributors None.
Conflicts of interest Authors have no conflict of interests to declare.
Funding Statement
This work was supported by Calgary Health Trust, University of Calgary Hotchkiss Brain Institute.
References
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