Background
Methods
Design/approach
Recruitment
Data collection
Examples of open-ended questions from interview guide |
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1. Walk me through what you are currently doing to manage your condition? |
2. How do you know you’re doing ok; that you can carry on your daily activities; are you satisfied with how you’re performing your daily activities? |
3. What is self-management from your perspective (what comes to mind when you hear the phrase self-management)? Probe: What is the ultimate goal of self-management? |
4. What are you currently doing to prevent any secondary complications, that is, any medical conditions that arise as a result of your spinal cord injury, such as urinary tract infections or pressure ulcers? |
Data analysis
Results
Description of participants
Characteristic | N = 7; |
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n, Range | |
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 |
Overview of themes
Theme | Sub-themes |
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Internal responsibility attribution | Wellness awareness |
Monitoring for secondary complications | |
Independence-dependence conflict | |
Directing someone else to provide your care | |
Ownership of your own care/empowerment in managing your own care | |
External responsibility attribution | Established chronic disease self-management programs |
Importance of caregiver skill set |
Internal responsibility attribution
Wellness awareness
“Physical fitness, healthy eating, paying attention to what’s going on with the skincare, keeping your brain active, keep everything going, don’t spend too much time in front of the TV” (SCI 6; Male with traumatic SCI).
“Both of us have decided the best way is to exercise. So we’re exercising more, going on longer walks, trying to take walks instead of drive in cars short distances and that kind of thing, try to eat more healthy. I became a vegetarian about a year and a half and he’s about 85 %, 90 % vegetarian. We’re just more health-wise, that kind of thing” (Caregiver 4; Wife of individual with traumatic SCI).
Monitoring for secondary complications
“Then routines to my day, the washing up rituals. That used to be much quicker…Now it’s that I have to be dressed to protect the skin on my backside. I have to do that kind of ritual stuff in bed and that takes me roughly 20 min every morning. It bothers me but I know I need to do it so that there’s no skin breakdown or un-cleanliness or something like that doesn’t cause an issue down the road” (SCI 4; Male with traumatic SCI).
“…when you get a spinal cord injury you are now two people. There’s the upper part of you and there’s the lower part of you and they don’t communicate with each other. The lower part of you is like a little baby. It’s like it will react but you don’t know what that means because it’s not communicating with you. Like I mean it’s not directly linked to you. You can’t feel it. So you have to interpret what those reactions mean. Just like if a little baby is crying, well why is he crying, what’s going on?” (SCI 5; Male with traumatic SCI).
“But he’ll also be like ‘hey can you look at something it feels a little different’ because he’s very aware by just feeling. He does have mirrors but sometimes just feeling his skin he’s like what’s going on here and then I’ll check it out” (Caregiver 4; Wife of individual with traumatic SCI).
Independence-dependence conflict
“So what his success is I think it’s just a willingness to live and then to be autonomous and independent and we supported him in all that, in all those aspects and helped him buy a car. Two years after his accident we helped him buy a condo. He wanted to become autonomous” (Caregiver 5; Brother of individual with traumatic SCI).
Directing someone else to provide your care
“I think that the biggest thing for the spinal cord injury is that whole directing their care and teaching them that what a great skill that is and how important it is because they’re going to have attendants all the time and to understand that part” (Manager 5; Female Rehabilitation Manager).
“So I’m going to say for a quadriplegic who is a complete injury it would be directing their own care in that they know how to direct caregivers to provide their care” (Manager 11; Female Rehabilitation Manager).
Ownership of your own care/empowerment in managing your own care
“Then who’s reconnecting with them in the community and whose obligation is that? That sounds harsh but who is responsible? Is the rehab center responsible for how long in that transition? We certainly do follow people and connect with people but if they don’t come back, I can’t. So who owns that? I mean ultimately it’s the patient who owns it I guess. You’ve got to introduce people to it. You’ve got to give them a chance. If they’re never introduced to it, how can they own it” (Manager 7; Female Rehabilitation Manager).
“I guess I would interpret self-management as taking control of my health and taking the responsibility and making sure that I’m being responsible in terms of dealing with my health, whether it’s making sure that I book my yearly appointments and go to see my doctors. Like I said being proactive if there are issues that do arise, that I’m dealing with it right away and seeking out specialists if that’s needed to assist with whatever treatments or medications or something that I may need for it” (SCI 1; Female with traumatic SCI).
External responsibility attribution
Established chronic disease self-management programs
“But it’s more around the philosophy of like the Stanford model and ownership of the chronic disease model. It’s a self-management model. That is what it’s based on” (Manager 7; Female Rehabilitation Manager).
Importance of caregiver skill set
“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).
“I would have to do his catheter stuff and his bowel routine and all of that. I really wanted to be aware so that if issues came up with nursing, I knew what was involved you know…There have been times where you know even just from having a full bladder you don’t realize like if you’re not trained that you can look for signs” (Caregiver 2; Wife of individual with traumatic SCI).