Table 3 Key themes from interviews with survivors of critical illness

Coming to terms with memories and experience of ICU

“I was convinced that Jack (the Ripper) was going to…slit my throat, that he’d killed 2 nurses and he’d dumped their bodies in a bin down the side of the stairs. It really was frightening”.

Needing knowledge and information

“…it all just suddenly clicked into place…it suddenly became a hospital. I suppose I was…getting the drugs out of my system. Certainly, those first days, I was in the twilight zone…”

• Waking up and not knowing what has happened

“I said, “Tell me once I’m better. Don’t tell me just now, because every day is a battle”. I really didn’t want to hear…how close to death I’d been”.

• Reliance on family for informational needs and the need for flexibility in terms of timing

“Even in my fuzzed head, I was aware on a number of occasions that whoever was momentarily in charge of me had scant knowledge of who I was and how I got there”.

• Poor continuity of care/inability of ward-based staff to provide information on the critical illness event

Dealing with physical disability

“I don’t know if it’s something that happens if you’ve only been in [ICU] a few days…but your body feeds off your muscles. I didn’t know any of this…Had I have had this knowledge, it would’ve been…easier for me to accept”.

• Making sense of functional impairment and dependence

“I was told I’d get very intensive physio…and then I got none for 5 days straight. It was only when I made a fuss that I got it. And then I got…just a list of things to do on my own…that were way beyond my capabilities”.

• Frustration with brevity, frequency, delivery of physical therapy in relation to perceived needs

“I’d get maybe 10 minutes of physiotherapy every day. Eventually. It wasn’t particularly aggressive physiotherapy…being hoisted up in a stand aid, and sitting down again. In terms of getting you back on your feet, it was minimal”.

• Regaining functional independence as priority

“I was determined I was gonna get mobile as quick as possible. I’ve got that determination. I’ve had it all my life”.

• Feeling outside the rehabilitative process

“I had to fight with them at first, but then they let me do things at my own pace. I said to them “I will walk and I will do this, but you’ve got to let me do it…my own way”.

General ward staff awareness

“I had to get some assistance having a seated shower. I couldn’t stand because I was so weak…and they maybe showed a bit of impatience with me there”.

• Perceived insensitivity of staff to limitations and basic care needs

“I said, “I never should’ve been left the way I was. I should’ve done exercises so that I wasn’t in this state.” And Dr Charmless said to me, “Well, that can’t be helped”.

• Lack of understanding of their limitations and its cause (ICU-acquired weakness)

Hospital discharge planning

“When I first got home, I got the shock of my life…I could put water in the kettle, but I couldn’t lift it. That’s when you say to yourself, “You are bad”.

• Pressure on beds; patients often discharged with limited functional ability

“I’m still waiting (for a bath seat), and I don’t know whether to ring back or persevere. Maybe somebody’s need is greater than mine. But initially, it would’ve been a big help”.

• Poor communication between acute and community teams; lack of timely provision of home aids

Early life at home

“I was glad to be home but very, very tired and very weak. I had to rely on someone to help me get up, dress me, that sort of thing”.

• Not being adequately prepared for dependence on others

“I could’ve done more…to help myself…because my brother asked for a sheet of exercises for me to do when I got out. I realise now…I could’ve been doing a lot of that…and I think I could’ve progressed quicker”.

• Lack of guidance in terms of self-management of the recovery process

“…one afternoon, I walked right over there (gestures out of the window). But I was so knackered later that day that I daren’t go out the next day at all. At first I thought, “Oh, I’ll perhaps do this every day”, but I’ve not been out since (laughs)”.