Background
Spinal cord injury and secondary complications and health care utilization
Need for preventative strategies in the community
Chronic disease self-management program in spinal cord injury
Research objectives
Methods
Conceptual framework
Design/approach
Recruitment
Data collection
Characteristic | N = 7; n, Range |
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Sex
| |
Male | 6 |
Female | 1 |
Age
| 39-68 |
Time since injury (years)
| 2-25 |
Level of injury
| |
Paraplegia | 5 |
Quadriplegia | 2 |
Education
| |
<High School | 2 |
Undergraduate/college | 4 |
Post-graduate | 1 |
Employment status
| |
Unemployed/retired | 5 |
Part-time | 1 |
Full-time | 1 |
Data analysis
Results
Description of participants
Facilitators to self-management
Theme: Physical support from the caregiver | |
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Representative quote
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Source
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“I do all the cooking, the cleaning. I was doing snow removal but then I gave it up. I do the grass cutting. I mean if there are light bulbs to be changed, just general maintenance around the house, anything that he can’t manage and the grocery shopping and the bill paying”
| Caregiver 6; Wife of individual with traumatic SCI |
“I mean some people will never be able to self-catheterize. So we educate their partner in care as to how they can help to do that. So they need to be taught at the same time as the individual patient. They need to know the risks in particular with you know I’m thinking of bladder dystonia and pressure sores, transferring and all of that. I mean these people aren’t going home to live by themselves. That’s quite rare. So they need to have the support service from their partner in care and family members and they need as much education as the patient does, sometimes more”
| Manager 4; Female Rehabilitation Manager |
Theme: Emotional support from the caregiver
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Representative quote
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Source
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“When I’m confronted with situations like that, I kind of sort of buckle and break down. Thank God I have a husband who’s like a really strong advocate because I’d say he’s really more of the advocate than I am and when things go bad, he’s the one that can step in and advocate on my behalf to make sure that I get what I need”
| TSCI 1; Female with traumatic SCI |
Theme: Peer support and feedback
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Representative quote
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Source
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“Often times when the patient is here or even when they’re in acute care, the CPA will hook up…and begin that dialogue about getting back into the community. While they’re inpatients here they also have what they call peer support workers. So they will buddy someone who’s had a former injury with a patient here who might have the same level of injury, be close in age. I think those are a couple of excellent facilitators for patients”
| Manager 11; Female Rehabilitation Manager |
Theme: Positive outlook and acceptance
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Representative quote
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Source
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“I accept the fact that…it was very difficult but I finally did accept the fact that I’m a quadriplegic and I’m going to be like this for the rest of my life. So I may as well just accept it and get on with it”
| TSCI 2; Male with traumatic SCI |
“With J., he has had jobs where he’s working, he has to get up…so he has to be at certain things. So he has to get out of bed. He has things to do. I could definitely… that would be something with other people in a wheelchair, there wouldn’t be any motivation and that affects everything; self-esteem, social skills. Then of course it affects their health because they’re not moving, they’re not doing things. They don’t have to be somewhere”
| Caregiver 4; Wife of individual with traumatic SCI |
Theme: Maintaining independence/control over care
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Representative quote
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Source
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“Well the idea of…for instance I knew that I needed some sort of satisfaction happy environment. So I decided right away to go back to drive a car. I remember I became very eager at that and I said that’s it, I could have a car”
| TSCI 7; Male with traumatic SCI |
Physical support from the caregiver
Emotional support from the caregiver
Peer support and feedback
Importance of positive outlook and acceptance
Maintaining independence/control over care
Barriers to self-management
Theme: Caregiver burnout | |
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Representative quote
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Source
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“My concern is you get people who, especially if it’s a husband and wife thing where they don’t have the insurance and the husband has gotten to the point where I don’t want to do this anymore for myself and then the wife has to do it. That changes the dynamics too much. It has to happen regularly. How can you… I don’t know. How can you provide a hug and a kiss to somebody where you’ve just done their bowel care? It’s just too hard you know?”
| Manager 2; Female Rehabilitation Manager |
“So in pediatrics they have a family support service. Here [in the adult rehabilitation system] there’s not that same support. I’ve never even heard of a family support service. That helps them to understand even emotionally where they’re at so that are they able to be dealing with this…”
| Manager 12; Female Rehabilitation Manager |
Theme: Funding and funding policies
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Representative quote
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Source
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“You know before we had a whole bunch of cuts happen, we used to have OTs [occupational therapists] go around. They would do certain rounds in the morning with the patients, the ones who have modified hand function. They would go around and take a look at and be there with the patient while they’re getting dressed and give the patient tips and see if they need adaptive devices that help them to put their socks on and get dressed and put their shoes on and also brushing their teeth”.
| Manager 2; Female Rehabilitation Manager |
“Yes, it’s only auto insurance that provides case management. If you had a spinal cord injury at home, let’s say you fell off your roof while putting up Christmas lights, then you would be under one of the long- term disability or extended health providers and they don’t provide case management. WSIB [Workplace Safety and Insurance Board] doesn’t provide that either. They would probably say that they case manage their own file but it’s very much in an entitlement system. It’s only the auto files that actually will purchase objective third party case managers but only for catastrophically impaired”
| Manager 8; Female Rehabilitation Manager |
Theme: Accessibility
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Representative quote
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Source
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“I know that there was a question of being able to…he always calls ahead kind of thing. If he knows certain exam rooms aren’t accessible, then we’ll try to request another one that’s easier for him to transfer. He definitely is aware of accessibility where he’s going to meet the doctors. I’m not sure if sometimes he might have to cram into a small room which is kind of ridiculous”
| Caregiver 4; Wife of individual with traumatic SCI |
Theme: Physical limitations and secondary complications
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Representative quote
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Source
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“I think she is frustrated. Let’s say she wants to do something and she cannot do it, let’s say opening the jar and she cannot open it because her hand is not that strong to open a jar. Then if she wants to get something, even though she has this picker, a device she uses in getting something…If she wants to do something, she uses that picker and then she’s having a hard time, that frustrates her. But there are only a few things that I know frustrates her, like putting the clothes on the hanger and then the jar opening. Those are the two things that I find are being frustrated”
| Caregiver 1; Personal support worker of individual with traumatic SCI |
Theme: Negative outlook or mood
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Representative quote
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Source
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“Then also that other thing I said where he doesn’t feel he deserves that stuff, he won’t advocate for himself because he’s just a guy in a wheelchair and he’s useless anyway right. That’s not a healthy attitude but I would say that that maybe something that comes up with other people where you know they may not advocate for themselves because they don’t think they’re worth it. It’s sad really”
| Caregiver 2; Wife of individual with traumatic SCI |
Caregiver burnout
Funding and funding policies
Lack of accessibility
Physical limitations and secondary complications
Difficulties achieving positive outlook or mood
Discussion
Identified facilitators (F), barriers (B) | Suggested self-management program components/modules | Implementation considerations |
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-Physical support from the caregiver (F) | -Caregiver component (i.e., skills training and emotional support) | -Training and support for caregivers needs to be responsive to the evolving needs of individuals with traumatic SCI (i.e., as they age and/or develop chronic conditions) |
-Emotional support from the caregiver (F) | -The sustainability of caregiver activities and support required in SCI may be affected by aging and/or the chronic health conditions among caregivers themselves | |
-Caregiver burnout (B) | ||
-Peer support and feedback (F) | -Peer support component | -Matching peer mentors and mentees by specific demographic and clinical/injury characteristics (age, sex, etiology of injury) should be considered |
-Timing of support should be considered (e.g., acute phase of recovery may be too early) | ||
-Maintaining Independence/Control over Care (F) | -Self-efficacy component | -Time since injury may play an important role in (increasing) self-efficacy in traumatic SCI |
-Importance of Positive Outlook and Acceptance (F) | -Mood (depression) component (or Mind-Body component) | -Time since injury may play an important role in (increasing) mood in traumatic SCI |
-Difficulty Achieving Positive Outlook or Mood (B) | -Physical limitations and secondary complications, chronic conditions, and co-morbid traumatic brain injury should be considered | |
-Physical Limitations and Secondary Complications (B) | ||
-Funding and Funding Policies (B) | -Awareness/knowledge of various funding programs | -Health system factors (funding, accessibility) need to be optimized for overall self-management optimization among individuals with traumatic SCI and their caregivers |
-Lack of accessibility (B) | -Advocacy skills training |