Table 3 Perception of family caregivers of the decision-making process about location of care

1. Participants’ experience of the decision-making process about location of care

Nature of the decision to be made

C1

(1–3)

“The social worker came when I finally made my relocation request. … she explained everything to me regarding my request for a public facility… she gave me a list of places to visit”. (C3)

C2

C3

C4

C5

C6

Inability to provide care

C2

(3–5)

“On the week-end it was like I was in jail… without bars but I was in jail”. (C2)

C3

“What I mean is, I couldn’t really keep her anymore. I had no more patience”. (C3)

Inappropriateness of services provided by the home care team

C1

(1–4)

“Home care – yes they come… But it’s not really home care. I’m the one who gives him his shower and takes care of everything”. (C1)

C4

C5

“You know, a kind of stick to help him to grab things… that’s not what he needs… If you want to keep old people at home, you have to give them what they want … why is taking a bath less important than putting on support socks? I know that it’s important to wear support socks… but it’s not support socks she needs, she’d like to take a bath”. (C4)

“They don’t listen to us, but we have to listen to them… I think they should listen more to us”. (C5)

2. Role of client and family caregivers in the decision making process about location of care

Initiating the decision making process

C1

(1–4)

“I’ve always been the one who made the decisions; but I got information about the decision… and then I went looking for a home”. (C1)

C2

C3

C4

C5

C6

“When you’re alone in making the decision… I began to search for nursing homes in the phonebook and then I contacted some of them”. (C2)

Controlling the information

C1

(1–2)

“We tried to keep it positive. Not say that it’s definite, that he was leaving the house. It’s lying, but it’s lying for a good reason. It’s called a white lie”. (C3)

C4

C5

3. Presentation of the different options by the IP home care team

Not enough options

C2

(1–3)

“It seems there’s a waiting list for getting into a public place… in the meantime she could die, or fall 20 times”. (C2)

C3

C4

C5

“Choices, options—there aren’t that many”. (C3)

“At this time, and given my age, she told me I would be better to ask for a place in a facility right now, because the waiting list is up to two years”. (C5)

Too little information

C2

(1–4)

“I had to phone them again and again and we hit a brick wall every time… and then they said that it was not a case for home care services”. (C4)

C4

C5

4. Values and preferences of clients and family caregivers

Differing values among those involved in the decision making process

C2

(1–2)

“She made this decision. It’s hard, as her child, to accept her decisions”. (C2)

C3

“I completely agree with her decision. After all, it’s her who has to choose”. (C3)

5. Support or undue pressure from others

Diversity of individuals who were a source of support

C1

(1–3)

“She gave her one week to reflect… It’s not a small decision… it’s her life”. (C1)

C3

C4

Pressure from the IP home care team

C1

(1–3)

“The more we talk, in any case that’s how it is for me, the more she [the social worker] insists she should stay at home. She keeps saying ‘it’s your choice’ but the fact is, she’s made the decision already”. (C1)

C3

C4

“I really didn’t know this system before, but now the government urges us to go private, many more are going to private care. Those who have money can go private… and if you don’t have money, they put you in a public home”. (C3)

“They told me ‘Go to a private home and pay’. But my mother is not a millionaire… And they say that it is not expensive. It costs $1500[Canadian] per month, not everybody can pay that!” (C4)

6. Experience and applicability of an IP approach to SDM

Lack of experience or exposure to interprofessional work

C1

(1–2)

“There are so many people; it is just like the rehab centre! Because at the rehab centre there are social workers, nurses…” (C1)

C2

C3

C4

C5

“She [the social worker] helped me in this way, to focus on her [the client’s] own needs… they’re used to doing this and they used the right words”. (C2)

C6

“With all the help she’ll get [the physiotherapist, the occupational therapist, the social worker, the nurse and the physician], it seems ideal. If home care was like that everywhere, it would be great”. (C3)

Staff turnover as an obstacle to IP approach

C2

(1–2)

“When I called, it was a different social worker”. (C3)

C3

C4

“It’s never the same person, and it’s never at the same time—they change it around when they like”. (C4)