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Table 3 Themes and representative quotes of barriers to self-management

From: Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study

Theme: Caregiver burnout
Representative quote Source
“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
Representative quote Source
“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
Representative quote Source
“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
Representative quote Source
“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
Representative quote Source
“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