Table 3.

Theme II: categories pertaining to the needs of former ICU patients and their close family members

Categories	Codes	Quotes
A holistic approach	ICU patients’ needs centre around communication and (non-medical) treatment; little attention for the human behind the condition; physician coming to sit next to you to ask you how you are	PF: Treating me as a human being instead of a patient with some mystery illness—yes, I would have appreciated that very much, especially now looking back. PF: Being nicer to you. I’ve heard it from many patients. There are very little things someone does when maybe having a bad day at work, but for a patient in such a situation—that’s not normal for you. So those are things that you remember months later, while the nurse probably doesn’t think about it at all.
Feeling included in the process and knowing what’s coming	Communication needs: knowing what’s coming; conversations about shared decision-making are physician driven; patients and families lack a feeling of control	PF: Well, it all happens to you. I think that happens a lot in the ICU, because most of the time things aren’t planned, so things happen.(…)But if you wanted to optimize it, in my experience, you can tell people: what are you doing, why are you doing it. Even if people are half-conscious, you don’t know what they will remember. I think they are very much in a ‘state of doing’.
Communication between medical staff and patients and families	ICU patients’ needs centre around communication and (non-medical) treatment; patients and families lack a feeling of control; no attention for the family	PF: I’ve noticed that the physicians mainly focus on getting better, while you’re still in a completely different phase. Coordinating those views, I think that’s very healthy. The medical part—they have to decide and give you choices and options, but the human part you have to coordinate together because otherwise I won’t understand your decision at all.(…)And at some point you think: well, whatever, do it, but if you don’t agree mentally and you feel so weak—I don’t think that’s good for your physical recovery.
Information about long-term outcomes	Needs for long-term information; information regarding recovery; answers to standing questions; well-informed patients decide differently; better information provision leads to better outcomes	PF: My feeling about the ICU is—the onus is on quick action, and survival. But then there is a long road afterwards and I think there should be more attention to that. Like a conversation with the partner, or whoever, someone close to the patient to say: what is important for the patient down the line? PF: Now I’ve noticed that the better the aftercare, the better your recovery. PF: Afterwards it’s worse, it seems like. Then it really gets through to you how bad it could have been—and then immediately how good it has been that you’ve managed to prevent that.

ICU, intensive care unit; PF, former ICU patients and their family members.