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Table 8 Themes and illustrative quotes from focus groups with health professionals

From: Managing uncertain recovery for patients nearing the end of life in hospital: a mixed-methods feasibility cluster randomised controlled trial of the AMBER care bundle


Illustrative quotes

Concerns relating to study eligibility criteria

Subtleties in relation to the study eligibility criteria

It’s quite subjective, but that’s probably good. If you put strict criteria, you might miss some. Like we were saying, it’s almost like a feeling isn’t it, that’s someone is uncertain. It’s not this metric thing. You know, otherwise like this is a marker of uncertainty. I quite like the fact that the criteria are … just that, uncertain. Int1013-M-CONS

My reflection is I think it’s just a bad expression [the eligibility criteria]. It’s the question of defining what the ‘episode of care’ is. It’s really what’s it came down to, wasn’t it? Initially, I was told that the episode of care finishes as the patient leaves the backdoor, which really isn’t true, is it? That’s the whole point of whoever is following their care to the community, as far as a patient is concerned. I’m hoping their perception of an episode of care isn’t ‘The back door is closed, you’re in the ambulance going home and that’s it.’ Con2020-M-CONS

Professional discordance and the eligibility criteria

I think that’s been particularly difficult in this study. I think that is why we struggled to recruit. Because what we perceived to be a patient wasn’t certain (i.e. uncertain), and this was not the view of the medical team. I think it’s either ‘We are actively treating’ or ‘End of life’ [approving hhhmms in the background from the other research nurses]. You know there’s no ‘in-between’. Con1021-F-RN

The medics would say ‘No, they’re not’ [about patients identified as fulfilling study eligibility criteria]. But just listening to the handovers, it was like you’d identify everybody in the ward. Con1018-F-WS

It came to a point where we [the research nurses] had explained it [the study] and explained it again. I think it got to a point where they [the clinicians] just said: ‘No, no, they’re not eligible.’ Con1021-F-RN

Issues with the prognostication of dying

My worry is ‘the risk of death’ can be differently interpreted. So, I think being a bit more concrete about the ‘risk of death’ would be good. Con2020-M-CONS

Well, sometimes it’s hard predicting whether they’ll die during this admission or when they’re going home … They might not die in this admission, but they are at the end of life in the next few months. Int2019-F-SHO

Contamination of usual care

I’ve learned a lot from being involved in the ImproveCare study. I think it made it much more comfortable for me to go for these discussions. I think when I was earlier, pretty early in my training days, it was very difficult, when we got asked all these different questions, probably I didn’t have answers for and they kept asking why can’t we do this, why can’t we do that and I didn’t understand but then when you get a better understanding of it, if you’re comfortable in touching these subjects. Con2019-M-REG

Study setting and study processes

Consultant oversight of study ward

The consultant changes every week and there’s there are five or six of them, aren’t there? So, they’re there every fifth week and you know, you happen to tell them every week about the study, remind them that the study is going on. Con1023-M-CONS

Misinterpreting clinicians’ explanations of the study

The daughter of the patient told me I was ‘Dr Death’ and ‘the Grim Ripper’! They were very upset about it and I think it was largely because they didn’t understand. Con2020-M-CONS

Process of seeking consent

You give the four-sided A4 booklet PIS [participant information sheet] to an 80 year old. It knackers them out. They say read it to me. I get halfway through and they’re falling asleep because they are so, so, sick. Int2003-F-RN

The consent process also needs to be changed. There is nothing to say, you have to get a ‘written consent’ and I think you need to be pushing these boundaries with the ethics committees. This is why research in this specialty is not being done. You would’ve had dozens of more questionnaires completed, dozens. Why can’t when I go in to a see a patient ask: ‘Mr Smith would you mind answering some questions about your condition and how we’ve been treating you?’ ‘Yes, no problem.’ ‘Okay. Mr Smith, you do understand that you don’t have to do this?’ ‘Yes’ ‘You do understand that you can stop at any time.’ ‘Yes.’ So, I can tick those and start asking questions. You would’ve had an 80% completion rate! Int2003-F-RN

Challenges of recruiting patients who lacked mental capacity

The actual recruitment process was sometimes quite difficult because of what you said, the families not being here. Most of the patients we approached, we had to contact the relatives because the patients were too unwell. So being able to liaise with the families was difficult. We can’t be waiting for the families here, so we were called back about relatives that were here and popping back and asking the ward staff to tell us when they’re here. So, the practicalities were difficult. Int1033-F-RN

Views on being involved in the feasibility study

Mixed views on involvement in study recruitment

It was just two members of staff who came up every day, looking. A lot of the other staff felt so uncomfortable working in this area, if we’re honest. The two who did do it, in the end, found all the end-of-life stuff really tiring, even though wasn’t strictly an ‘end-of-life’ care study. The fact is that we got a paediatric nurse and a stroke nurse, and they felt a bit out of their depth. Con1020-F-RP

For the patients, I don’t think there was negative impact. … However, I don’t think the staff on the ward were keen. Con1021-F-RN

I was really, really impressed about how on-board everybody was and everybody knew what AMBER was. On the whole, generally 90% of the time people were very supportive of our presence and what we needed to do. Int1033-F-RN

Greater insight into patients’ experiences

(The study) gave us a unique relationship with the relatives. So, in a strange way, you're in a unique position that they talk to you about things that sometimes they feel that they can't take forward with certain ward staff. So, we are able to encourage them into having those conversations making sure that those communications were taking place with ward staff if they, the family had some anxiety or a certain query. So, whether because we were seen as external or whether we would able to form a relationship over questionnaires being done different points, I just don't know. Int1033-F-RN