Theme | Illustrative quotes |
---|---|
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)”. |