Table 3 Alignment of patient and carer data with constructs in the HCP-based model

Role definition and boundaries

And there’s more acceptance I think people who are nursing and who are in the admin, and I include the admin in palliative care there is more awareness that people are genuinely suffering with a, probably a terminal illness and a lot more care is put into it, rather than just delivering a service (Olivia, carer)

Multidisciplinary team decision making

We have a designated nurse Sarah who talks to us and digests what we’re saying in regard to symptoms, and she often goes back to the consultant to discuss it, she often has thoughts about how we can manage it but she always underpins that by going back to the consultant. (Olivia, carer)

Availability of services/staff

Having Martin on the syringe driver meant that the nurses came in every day and that was quite reassuring, and they were always there to talk about various different things. (Mary, carer)

Clinician – Patient relationship/rapport

Well they listen to me, you know… Yeah if I’m not happy with something I’ll tell them but like I say I’ve had no qualms with them at all (Terry, patient)

Patient preferences

That’s why I’ve said I will battle it out as long as I can to stay in my own home until I feel that I’ve no, well yes, it is time, I can’t deal with it no more, then yes I will go. I mean I did bypass the hospital and elect to go straight to (the hospice) rather than go to the hospital. (Andrew, patient)

Patient characteristics (including reversible causes)

Wendy is Wendy and if she can manage it she’ll do it and I have to let her because you know, she’s her own person and though I can give out a warning and Wendy heeds that warning. I’m trying not to mollycoddle her. (Patricia, carer)

Quality of life versus treatment need

I think it was the antipsychotic drug to help sleep and that made me feel like a robot. I’d take the medication and I’d be asleep for 12 h, then I’d wake up groggy all day, then I’d take it again, I’d sleep for another 12 h, I’d feel like, I’m just like a robot been taken out of a box, allowed to function for a few hours and then put back in the box. That’s how it felt so I did discuss it with and (nurse) I said no, I said I’m going to have to stop this and try something else (Andrew, patient)

Staff time/burden

Yeah having staff enough time for me, that’s another good one and being able to talk about my thoughts feelings and worries, and I do that as well (Terry, patient)

Psychological support -informal

I would say a lot of it was for Martin and for me personally having somebody else to take more control and feel like we were being more supported I guess with the pain and not just muddling along, it felt like we’d been muddling along for quite a long time and not getting anywhere so that support was useful, having somebody to talk everything through and somebody on the end of the phone (Mary, carer)

Appropriate understanding, expectations, acceptance and goals- patients

No, no they’ve all just said, we haven’t had any advice on how to manage the fatigue have we? No they’ve kind of like said it’s normal after chemo yeah (Kathleen, carer)

Appropriate understanding, expectations, acceptance and goals-HCPs

The important thing is to be able to discuss it and with my knowledge of medication as well (experience as a healthcare professional himself), I mean I can discuss it in depth. (Andrew, patient)

Appropriate understanding, expectations, acceptance and goals- family friends, carers

the consultant when Martin was in hospital said that the medication that he had been on wasn’t working which it wasn’t really and she felt that he needed something a lot more consistent so it was good but also she decided at that point that Martin was sort of end of life and didn’t have long so therefore the syringe driver would make life easier and more comfortable for him and so I can understand why it happened and as I say at the time it was the right thing to do and it did seem to work well for Martin. (Mary, Carer)

Professional, service and referral factors

The decision to be admitted to (the hospice) to sort out the pain and the sickness drug, although as I say that was a difficult decision for us to agree for Anthony to go into (the hospice), an amazing decision because they are so knowledgeable (Olivia, carer)

Continuity of care

I think it would be incredibly useful to have continuity of staff both in the hospital and for the care outside, The fact that we have 1 person who comes once a week and who takes you know not just the readings of on a medical record but also you get the feeling that they’re checking on how you’re doing and how you’re coping (Anthony, patient)

I think that’s a very good point that yeah continuity of people is so important as Anthony said, he’s got Fiona who is on the district team who comes to see us each Wednesday and obviously you know we don’t have to go through the whole tale again. Although I know it’s all on, it’s quite a lot of it’s on screen but I think that her seeing Anthony you know and thinking well you know well he actually looks a bit better than last week or he’s looking OK etc. etc. is important (Olivia, carer)

Multidisciplinary team working

Every time I discuss it with (the nurse) as I said within a couple of hours she’s done it and for me to increase my medication back up she’s straight on to the GP, the GP’s processed the prescription within a few hours and it’s done (Terry, patient)

Palliative care philosophy and culture

All my treatment’s really been handled well and I mean as I say I’m very pleased with the (the hospice) staff, especially (the nurse) that deals with me. Nothing is too much for her. She does speak to my partner as well (Andrew, patient)

Physical environment and facilities

They’ve give me a few bits but the stuff they sent it was no good to me they sent me a bed thing for my bed which was no good (Terry, patient)

Referral process and delays

The one disappointing thing with the palliative care was that on the day Anthony needed to be admitted to (the hospice), we’d start the communication sort of about 1 o’clock after he’d been to (hospital) and they said this is what, you do need to go to the hospice for them to sort your drugs out, they weren’t able to admit us that evening and so Anthony was quite ill overnight and so we had to use the district team in the middle of the night, we had to get the doctor out so I suppose that is the only little disappointing thing but I guess perhaps they didn’t have a bed you know.(Olivia, carer)