Table 2 Themes and representative quotes of facilitators to self-management

Representative quote

Source

“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

Representative quote

Source

“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

Representative quote

Source

“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

Representative quote

Source

“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

Representative quote

Source

“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