Exemplars of survivors’ perceived barriers to ICU recovery
| PTE domain | Barrier | N (%) of 39 participants reporting barrier | N (%) of 39 participants reporting barrier on the wards | N (%) of 39 participants reporting barrier at home | Exemplar |
| Person | Negative mood or affect | 32 (82.1) | 21 (53.8) | 27 (69.2) | (Interviewer): How have you been spending your days? (Participant): Frustrated I think really. Frustrated because I can’t do anything. (71-year-old man who survived sepsis (home)) |
| Experiencing setbacks or stagnation | 39 (100) | 35 (89.8) | 33 (84.6) | ‘I used to be like firing on all cylinders…(now) I feel like the days just tick by…I wanna go back to work, but then sometimes I worry that I won’t be able to pick up the pieces and do the job again. And I’m scared to go back in case it’s too soon’. (40-year-old woman after sepsis (home)) | |
| Weakness or limited endurance | 38 (97.4) | 31 (79.5) | 37 (94.9) | ‘I couldn’t even walk, I couldn’t get up and sit in the chair by myself. I could feed myself by that point, but I couldn’t get to the toilet, I couldn’t stand up, I couldn’t get to the sink. If my glass was on a trolley at the bottom of the bed I wouldn’t have been able to reach that’. (41-year-old women who survived sepsis (wards)) | |
| Pain or discomfort | 26 (66.7) | 22 (56.4) | 15 (38.7) | ‘This (pain) is vastly different, you get backache, even shoulder ache and I put this down to some of the ways you have to lay to try and get some sleep in hospital’. (71-year-old man who survived abdominal aneurysm repair (wards)) | |
| Inadequate nutrition or hydration | 19 (48.7) | 16 (41.0) | 10 (25.6) | ‘I didn’t have a problem maintaining my weight before… I do tend to slightly go over my fighting weight. I got to about ten nine, ten eleven and I try to maintain that because it’s very difficult for me now to lose weight. So easy to put weight on but very difficult for me to lose it. It’s not that I eat a lot during the day but for some reason I seem to put the weight on. I think if I was to count the calories or do it like the weight watchers do, point system, I would be well under what my weight value and what my point value would be but I think it’s because I’m not as active as I was. I am not burning off the calories that one counteracts the other’. (58-year-old man who survived trauma (home)). | |
| Poor concentration or confusion | 21 (53.8%) | 17 (43.6%) | 13 (33.3%) | ‘I had a marvellous memory before the accident. I could do things without writing them down. I could remember two or 3 weeks in advance for work mainly. Work is the biggest structure of my life and I found that very difficult to come to terms with, that I had to write things down just to remember one thing, very, very difficult especially as I used to be a workaholic. Again very, very difficult when your body was letting you down. And what with the head injury and the body injury, I just needed to get my mind working and my body structure back to as it was’. (58-year-old man who survived trauma (home)) | |
| Disordered sleep, hallucinations or nightmares | 18 (46.2) | 14 (35.9) | 14 (35.9) | ‘(T)hat lasted 3 weeks, before I got a proper, what I call a settled night’s sleep, where I slept through without waking up, without waking up because of a dream, because of a nightmare. And I really wasn’t used to waking up because of nightmares…But they were so vivid, that on top of this hallucination, which was wearing off and had virtually gone, had been replaced by this dreadful nightmar’. (55-year-old woman who survived sepsis (home)) | |
| Mistrust | 19 (48.7) | 17 (43.6) | 8 (20.5) | ‘My GP has struck me off his list… (H)e did that because I told him I was going to leave so he did it first, so he wouldn’t get into any trouble. We didn’t get on. It was all right, on a GP level, he was fine. But once I was seriously ill, he just didn’t keep up. He’d had no idea. He didn’t read all the things that were sent from… he never read them. And I’d go there and he hadn’t a clue’. (50 year-old man who survived heart failure (home)) | |
| Altered appearance | 17 (43.6) | 13 (33.3) | 9 (23.1) | ‘(A)t first I was covering (my tracheostomy scar) up to protect them because I didn’t want people to be embarrassed’. (46-year-old man after sepsis (home)) | |
| Task | Miscommunication | 37 (94.8) | 32 (82.1) | 27 (69.2) | ‘I had to get transport to come home and… I didn’t realise that they’d phone through to say that I was coming home. So I was worried that… my visitors would be going one way and I’d be going the other and I’d arrive home and nobody would be there to let me in. That was a bit of a panic stations for a minute. The nurse didn’t know they’d been informed either’. (60-year-old man who survived pneumonia (wards)) |
| Managing conflicting priorities | 20 (51.2) | 13 (33.3) | 15 (38.5) | ‘(M)y GP was very supportive in saying, “You know you’re not well enough to go back to work until you’re well enough to kind of manage at home. You know you’re not getting well enough to go back to work and not be able to look after your daughter.” So he was really supportive in kind of prioritising that first. And then by the time Christmas came… I probably would have been strong enough to go back to work and work was very supportive about saying… you can come back a day a week and we’ll build it up from there but there was a redundancy offer on the table. And I actually decided that I needed spend… a good chunk of time being well with (with my daughter) rather than being ill with her. So I didn’t go back’. (35-year-old woman who survived sepsis (home)) | |
| Environment | Non-supportive health services or policies | 38 (97.4) | 38 (97.4) | 26 (66.7) | ‘I was fast in the bed, I had rails, I wasn’t allowed to get out without support or help… and they then put fasteners on the bottom of the bed as well so I couldn’t get out of the sides and I couldn’t get out at the bottom’. (60-year-old man who survived ARDS (wards)) |
| Challenging social attitudes | 22 (56.4) | 18 (46.2) | 11 (28.2) | ‘There were a number of instances where my wife had to assist me in clearing myself up, for want of a better term…it was a case of “Let’s move him, get him out of here.” And that’s a shock to your system’. (Describing perceived staff attitudes toward care delivery). (47-year-old man who survived pneumonia (wards)) | |
| Incompatible family coping | 18 (46.2) | 8 (20.5) | 13 (33.3) | ‘Yes, I had emotional moments. On my own, not in front of (my partner) because I knew it would upset her’. (45-year-old man who survived sepsis (home)) | |
| Equipment problems | 26 (66.7) | 22 (56.4) | 13 (33.3) | ‘My doctor wasn’t notified I was home, the district nurse wasn’t notified I was home. I came home, dressing on my toe and obviously still with my neck, on the trach site…(no one changed the dressings)’. (44-year-old woman who survived pneumonia (home)) | |
| Overstimulation | 23 (59.0) | 20 (51.3) | 12 (30.8) | ‘One night we decided that we’d just go for a pub tea somewhere…And as it started to fill up…. I just had to come home, but we didn’t end up with our meal, just had to get out’. (41-year-old woman who survived sepsis (home)). | |
| Understimulation | 20 (51.3) | 16 (41.0) | 7 (17.9) | ‘I’m back (at work) now, well except that they got me back in doing nothing really’. (46-year-old man who survived sepsis (home)) | |
| Environmental inaccessibility | 14 (35.9) | 5 (12.8) | 11 (28.2) | ‘Eventually they decided to move me to a side ward… I didn’t like them to shut the door because…should I get a coughing fit or something like that I felt, I can’t communicate. They have these bells and things but I think they’d rather not use them because some patients probably use them too much’. (60-year-old man who survived pneumonia (wards)). |
Each quotation indicates when the participant experienced the barrier in parentheses (wards or home).
ICU, intensive care unit; PTE, Person-Task-Environment model of performance.