Exploring the Quality of Life of People with Incomplete Spinal Cord Injury Who Can Ambulate
Abstract
:1. Introduction
2. Methods
2.1. Study Participants
2.2. Recruitment
2.3. Data Collection
2.4. Measures
2.4.1. Demographic Survey
2.4.2. Functional Ambulation Measure
2.4.3. Life Satisfaction Questionnaire—11
2.4.4. Spinal Cord Independence Measure—III
2.4.5. 12-Item Short-Form Survey
2.4.6. Semi-Structured Interviews
2.5. Data Analysis
2.5.1. Quantitative
2.5.2. Qualitative
3. Results
3.1. Quantitative
3.2. Qualitative
3.2.1. Low Quality of Life (n = 5)
3.2.2. Moderate Quality of Life (n = 9)
3.2.3. High Quality of Life (n = 10)
4. Discussion
4.1. Contributors to Low Quality of Life
4.2. Barriers to Quality of Life among Those with Low and Moderate Quality of Life
4.3. Facilitators of Quality of Life among Those with Moderate and High Quality of Life
4.4. Facilitators to High Quality of Life
5. Limitations and Future Directions
6. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Appendix A
References
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Variable | Label (Potential Range) | [Mean ± SD]/n (%) | Low Quality of Life (n = 5) n (%)/Mean ± SD | Moderate Quality of Life (n = 9) n (%)/ [Mean ± SD] | High Quality of Life (n = 10) n (%)/ [Mean ± SD] | Statistic 1 U/2 (H)/3 [rs] | Cohen’s d/(f) | p |
---|---|---|---|---|---|---|---|---|
Sex | Male | 13 (54.16) [48.31 ± 10.68] | 1 (20.00) | 4 (44.44) | 8 (80.00) | 30.00 1 | 1.12 | 0.02 |
Female | 11 (45.83) [34.82 ± 13.28] | 4 (80.00) | 5 (55.56) | 2 (20.00) | ||||
Type of injury 4 | Traumatic | 14 (58.30) [45.79 ± 13.05] | 2 (40.00) | 4(44.44) | 8 (80.00) | 32.00 1 | 0.29 | 0.41 |
Non Traumatic | 6 (25.00) [40.67± 14.62] | 1 (20.00) | 3(33.33) | 2 (20.00) | ||||
Level of spinal cord injury | Cervical | 9 (37.50) | - | 4 (44.44) | 4 (40.00) | (0.58) 2 | (0.03) | 0.75 |
Thoracic | 6 (25.00) | 2 (40.00) | 2 (22.22) | 3 (30.00) | ||||
Lumbar | 9 (37.50) | 3 (60.00) | 3 (33.33) | 3 (30.00) | ||||
Attended rehabilitation | Yes | 16 (66.67) [46.38 ± 10.36] | 1 (20.00) | 7 (77.78) | 8 (80.00) | 29.00 1 | 0.957 | 0.032 |
No | 8 (33.33) [33.62 ± 15.76] | 4 (80.00) | 2 (22.22) | 2 (20.00) | ||||
Employed | Yes | 4 (16.67) [43.75 ± 16.86] | 1 (20.00) | 1 (11.11) | 2 (20.00) | 34.50 1 | 0.13 | 0.67 |
No | 20 (83.33) [41.80 ± 13.28] | 4 (80.00) | 8 (88.89) | 8(80.00) | ||||
Marital Status | Never married/separated/ Divorced | 11 (45.83) [35.27 ± 14.16] | 5 (100.00) | 3 (33.33) | 3 (30.00) | 37.00 1 | 1.02 | 0.04 |
Married/Common Law | 13 (54.17) [47.92 ± 10.24] | - | 6 (66.67) | 7 (70.00) | ||||
Location of residence | City | 13 (54.16) | 3 (60.00) | 3 (33.33) | 7 (70.00) | (1.49) 2 | (0.06) | 0.48 |
Suburban | 7 (29.17) | - | 5 (55.56) | 2 (20.00) | ||||
Rural | 4 (16.67) | 2 (40.00) | 1 (11.11) | 1 (10.00) | ||||
Living situation | Live alone | 8 (33.33) [37.00 ± 14.21] | 3 (60.00) | 3 (33.33) | 2 (20.00) | 44.50 1 | 0.57 | 0.23 |
Live with somebody | 16 (66.67) [44.69 ± 12.88] | 2 (40.00) | 6 (66.67) | 8 (80.00) | ||||
Level of education | 2 = High school | 7 (29.17) | [3.60 ± 1.14] | [3.56 ± 1.51] | [3.70 ± 1.57] | [0.07] 3 | - | 0.72 |
3 = College/Trade School | 5 (20.83) | |||||||
4 = University degree | 5 (20.83) | |||||||
5 = Graduate studies | 4 (16.67) | |||||||
6 = Postgraduate | 3 (12.50) | |||||||
Number of Years Living with an injury | (2–52) | [21.88 ± 16.30] | [26.20 ± 16.92] | [27.67 ± 18.53] | [14.50 ± 12.01] | [−0.40] 3 | - | 0.05 |
Gross annual income 5 | (1–7) 6 | [1.83 ± 2.88] | [2.20 ± 2.39] | [0.78 ± 2.39] | [2.60 ± 3.44] | [0.15] 3 | - | 0.48 |
Age (Years) | (27–72) | [54.60 ± 14.60] | [50.60 ± 15.44] | [54.22 ± 12.17] | [57.30 ± 16.95] | [0.19] 3 | - | 0.37 |
12-Item Short-form health survey: Mental component scores | (22–60) | [39.95 ± 11.11] | [29.77 ± 5.29] | [36.04 ± 7.34] | [48.56 ± 9.99] | [0.74] 3 | - | <0.01 |
12-Item Short-form health survey:Physical component scores | (20–57) | [35.10 ± 9.86] | [28.99 ± 10.36] | [29.95 ± 4.63] | [42.80 ± 8.27] | [0.68] 3 | - | <0.01 |
Spinal cord independence measure—III | (38–100) | [79.04 ± 13.90] | [70.20 ± 18.19] | [75.44 ± 13.72] | [86.70 ± 7.62] | [0.34] 3 | - | 0.11 |
Functional ambulatory category | 4 = Ambulate independently level surface only | 12 (50.00) [38.50 ± 12.52] | 3(60.00) | 6(66.67) | 3(30.00) | 46.50 1 | 0.54 | 0.14 |
5 = Ambulate independently | 12 (50.00) [45.75 ± 14.08] | 2(40.00) | 3(33.33) | 7(70.00) | ||||
Life satisfaction questionnaire—11 | (20–64) | [42.13 ± 13.54] | [22 ± 2.35] | [39 ± 4.44] | [55 ± 5.46] | - | - | - |
Low Quality of Life (P1, P6, P11, P13, P14) | Moderate Quality of Life (P4, P5, P7, P9, P10, P15, P16, P18, P20) | High Quality of Life (P3, P2, P8, P17, P12, P19, P21, P22, P23, P24) | |
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Potential Barriers to Quality of Life |
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Potential Facilitators to Quality of Life |
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Topic | Quotation | Participant Information |
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Feeling socially isolated | ||
Losing friends because of pain intolerance | ‘I have ongoing and significant pain, difficulty sitting, and difficulty walking. I can’t sit in an upright position for very long without pain, I can sit in my wheelchair for about two hours but I couldn’t sit in a regular kitchen chair on a couch. I wasn’t able to go to see friends anymore for lunch or coffee because I couldn’t sit. I went a long time without a wheelchair before I was finally approved for one.’ | P11, female, 63 years old, T6 |
Losing human contact and preferred in-person interaction | ‘I miss some of the important people in my life because we are not able to connect in the same way. Phone calls are not the same as actually going out and meeting people, person to person, and doing something fun together or going out for a meal or hanging out at a social event, it’s not the same connection.’ | P14, female, 51 years old, thoracic |
Having financial concerns | ||
Identifying financial need as a barrier to participation | ‘That’s been a barrier because of the low income that I get from my pension. If I wanted to get an electric assistive device this is kind of expensive, I do need home adaptations right now, but those cost a high price so I have to adapt myself to my house set up for the time being which is tiring and consumes most of my energy.’ | P06, male, 31-year-old, injured in the lumbar region |
Being judged | ||
Feeling invisible | ‘That’s pretty much an everyday occurrence. People treat me like this because I’m physically disabled and think I’m mentally disabled and they’ll ask the person I’m with the question, instead of asking me, which is very infuriating because I’m an adult and you know, highly competent, I can talk for myself.’ | P14, female, 51 years old, thoracic |
Experiencing prejudice | ‘Discrimination happens all the time because people have attitudinal barriers. They’re straight-up rude and basically kind of treat you like you’re a non-human. And that pretty much is all the time because I look physically disabled when I’m out and about, I get stares, I get looks, it’s pretty much constant.’ | P14, female, 51 years old, thoracic |
Feeling left out due to city layout and infrastructure | ||
Experiencing accessibility challenges in the built environment | ‘The area where I live is a bit hilly. So it’s difficult either using my walker/my cane/my wheelchair; there are some streets I can’t go on. I find that some of those curb cuts on the sidewalk are steep and sometimes I have to get out of my wheelchair and push it up the curb cuts, then I can get back in. Some of the stores in the area I live have a couple of steps up or down, to get into the stores, so of course, I don’t go there. If a place is not wheelchair accessible I don’t go there.’ | P11, female, 63 years old, T6 |
Expressing that spinal cord injury was due to medical negligence | ||
Expressing deterioration in health due to medical negligence | ‘If I would’ve had the machine to help me breathe, my health, my walking, and everything else would never have deteriorated. I never had to end up in the hospital and now I have to go to the hospital to see a cardiologist, All because I didn’t get the right rehabilitation for my deteriorating leg, hip, and back muscles with the machine to help me breathe.’ | P01, female, 40 years old, T6–T7 |
Expressing a degradation in mobility | ||
Feeling like prematurely aging | ‘It’s like living with a 121-year-old woman, that’s what I’m like. I bring in the groceries from the car using the walker, I’ll be paralyzed in bed for 8–14 h. So right after I–I lie in bed for 13 h, sometimes slept all day, like I was just paralyzed, just couldn’t do a thing. in six months I’ll get paralyzed 130 times and could not move.’ | P13, female, 68-year-old, L3–L5 |
Topic | Quotation | Participant Information |
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Feeling judged | ||
Feeling hyper visible | ‘They don’t realize maybe how disabled I am, why I’m disabled, or why I’m using a cane. So, even when I’m in a wheelchair, I always have my canes with me (move or go somewhere, where I can’t go with my wheelchair), so if I stand up and use the canes, I kind of get this look, oh why are you using your canes? Why are you using a chair then? I might get a strange look.’ | P16, female, 67 years old, C3–C4 |
Expressing a positive experience with abled bodied people | ‘I’ve been lucky because, in pickleball and ping pong and all the other sport-type activities I wanted to join, I never had to join through a disability-specific organization because I’ve always been accepted by able-bodied people to join as a guy in a wheelchair.’ | P09, male, 67 years old, C6–C7 |
Experiencing a decrease in mobility | ||
Acknowledging a decrease in mobility after surgery | ‘Before I could walk with 2 poles, but now I cannot walk with them instead I have to use a walker, without the walker it’s just that I look like I’m a little drunk because my coordination is not there all the time. My equilibrium is not what it used to be, if I unexpectedly come on a change in the terrain I’m walking on, it’s a big problem for me because I can’t react normally and could end up falling. I look like I’m drunk really and that saddens me.’ | P18, male, 54 years old, lumbar |
Learning to adapt to life after injury | ||
Navigating through challenges | ‘I have turned my wheelchair into a tricycle, so Vancouver is full of hills, … now perfectly able to go up and down hills anywhere I want. The apartment that I have has been completely modified for accessibility, the cabinets come down to my level, I have a cooktop and a kitchen sink that can come down to my level, and the entire washroom is accessible for me in my wheelchair. So my apartment does not have barriers for me.’ | P09, male, 67 years old, C6–C7 |
Making peace with things I cannot do | ‘I would be getting up most of the mornings with back pain, but I had been living with back pain the majority of the time, and I’ve just gotten used to it. And I functioned with it.’ | P10, female, 46 years old, C5–C6 |
Adjusting to their routine | ‘My day is very limited in what I did in my day. A lot of tasks would take me twice as long to do. I have to make sure I’m not sitting too long because then the pain kicks in, but at the same time, I can’t do movement for long periods. If I do go on the treadmill I need to sleep that day for 20 min to an hour.’ | P10, female, 46 years old, C5–C6 |
Appreciating their support system | ||
Feeling blessed to have the support | ‘I’ll have meetings with my pastor who’s also a good friend, so mentally, I do alright. With my boyfriend’s family and abled-bodied friends I feel [I am] in an inclusive environment and it just I feel supported.’ | P04, female, 36 years old, C5–C6 |
Expressing a support system gives courage to keep moving forward in life | ‘I have friends and they are always looking for places for me to rest, which is nice. We’ll just sit here for a while. Because they know I have limits and I do get tired. They don’t want me to fall over because then they have to pick me up—which has happened a few times.’ | P07, male, 62 years old, C6–C7 |
Having financial stability | ||
Showing gratitude that partner still has a job | ‘At the moment I’m very fortunate with my husband that he has a good job and he’s working. At the moment we’re okay financially.’ | P10, female, 46 years old, C5–C6 |
Feeling fortunate for financial stability | ‘I’m very fortunate that I did not lose my job [because of the pandemic]. I worked for 5 years after my accident, then I retired. I have a good federal pension, so COVID-19 has had no impact and my accident has had minimal impact. I was well insured when I had my accident so that helped me very well. I have no financial issues that arise after my accident. I don’t have to wait for approval for spending money, to go somewhere, whatever it is.’ | P09, male, 67 years old, C6–C7 |
Topic | Quotation | Participant Information |
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Demonstrating resilience | ||
Expressing determination to recover from injury | ‘It took me three months to make it out to the end of the driveway after I got out of the hospital. I must’ve fallen at least twice a day. My problem was my feet, I’d be walking along and all of a sudden one leg would go out. It took a long time to learn to keep the feet going where I wanted to, even after I managed to learn to get the feet to go where I wanted to, I had to watch it. I could go for a walk but I wouldn’t see anything besides the concrete (laugh).’ | P03, male, 67 years old, C5–C6 |
Seeing progress over time | ‘Recently because I’m still seeing progressing like I’m still seeing improvement in my recovery, so that’s why I’m still attacking this uh as aggressively, now I can walk 50 m without needing a walking device, and I feel fortunate that I can walk.’ | P22, male, 49 years old, C6 |
Learning to adapt to life after injury | ||
Facing challenges | ‘I don’t look at barriers, I look at them more like challenges, I usually come up with a way of um modifying something so I can still do it. I’ll give you an example I started deer hunting, and my wife said, “Why don’t you go and get some venison,” because I grew up on that when we were young with our families. So I got my bow and go out and did that, but I couldn’t carry the deer on my shoulders as I could before, so I made a kind of a sled and a harness and ski poles.’ | P08, male, 72 years old, lumbar |
Appreciating their support system | ||
Being thankful for having support | ‘If my wife, wasn’t there, I would be struggling at this point. I really would. And so, she has been, she’s been my rock type of thing. She’s really helped. And I couldn’t like I said I don’t think I would be here if it wasn’t for that because there’s thoughts, you know right after, and I didn’t see a future, I didn’t see anything. And that was really difficult.’ | P24, male, 68 years old, L3–L5 |
Feeling a sense of belongingness to a group | ‘I feel included and welcomed [at the spinal cord injury organization]. Well, I have the same problems, in terms of bowels and bladder, if you went to a family physician, they may see one or two cases in their whole time, in their practice. Whereas, the people who specialize in this, so, or the people in the ambulatory group, you’re talking to people who do it 24/7, and have these problems. So, they have much better answers than, the doctors. So, it’s quite good and powerful to have this cohort. Just talking to each other about the problems we face.’ | P24, male, 68 years old, L3–L5 |
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© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Jeawon, M.; Hase, B.; Miller, S.; Eng, J.; Bundon, A.; Chaudhury, H.; Maffin, J.; Clarkson, R.; Wright, J.; Mortenson, W.B. Exploring the Quality of Life of People with Incomplete Spinal Cord Injury Who Can Ambulate. Disabilities 2023, 3, 455-476. https://doi.org/10.3390/disabilities3040029
Jeawon M, Hase B, Miller S, Eng J, Bundon A, Chaudhury H, Maffin J, Clarkson R, Wright J, Mortenson WB. Exploring the Quality of Life of People with Incomplete Spinal Cord Injury Who Can Ambulate. Disabilities. 2023; 3(4):455-476. https://doi.org/10.3390/disabilities3040029
Chicago/Turabian StyleJeawon, Murveena, Bethany Hase, Susanna Miller, Janice Eng, Andrea Bundon, Habib Chaudhury, Jocelyn Maffin, Ryan Clarkson, Jenna Wright, and W. Ben Mortenson. 2023. "Exploring the Quality of Life of People with Incomplete Spinal Cord Injury Who Can Ambulate" Disabilities 3, no. 4: 455-476. https://doi.org/10.3390/disabilities3040029