Table 5 Quotes about the importance of communication

Q22

[H]onestly, one of the biggest things that I’ve learnt during this process, and still to this moment with my mum, all the staff, is communication. I know it sounds so fickle, but it is the biggest thing, you know, the communication. It’s like if you don’t understand something, then say. Don’t just go home thinking, “oh, I needed to ask this and I didn’t”. And they are willing to help. Yes, they are willing to help. They want you to be clear on what they’re going to do. (Participant 05)

Q23

It was a meeting of them letting us know what was going on, and then we’re giving our points. You know, it was very balanced. It was very equal. We were allowed to give our thoughts, views on my mum’s care. We were allowed to ask questions openly, and by this time, we had known them a while as well. So, it was quite comfortable, and we came out of there. Well, I came out of there knowing what’s going to happen, you know, what they’re doing with my mum, why they’re doing it and why they’re suggesting what they want to do. So, they were good. Those meetings, they were helpful. So, yes, that’s what I feel about them. (Participant 05)

Q24

So, we spent a lot of time before anything happened then, looking at the videos particularly, because they are animated and that does help a little bit. (Participant 02)

Q25

We were in a battlefield – we were fighting the world. I wasn’t taking care of my mum. I was fighting the world. I was fighting [hospital]. Me and my siblings were fighting [hospital]. (Participant 06)

Q26

Oh well, “no, I’m afraid he’s not on the ward or not available to answer”. You know, “in hospital you can’t always have who you want”. There was one occasion when two people had a go and I said, “this doesn’t work”. It was somebody quite senior and, I felt, rather fancied themselves at doing this slightly menial work. “Oh, I can remember”. Then failing. [Patient] would be in tears and it was very upsetting. (Participant 01)

Q27

I get the feeling that they only give you as much information as they think you need, not everything. They hold back a bit. (Participant 03)

Q28

There was a lot of misinformation. There was a lot of pressure, withholding truths. We found out later on that actually that’s not true. […] [T]he pressure is on them to clear the bed. (Participant 04)

Q29

It has been much better because we’ve not had to keep explaining things from the beginning. You know, we’ve built quite a good rapport with them, and they’ve got to know my mum. (Participant 05)