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Angela: I don’t know where he is, I don’t know what he’s experiencing. I don’t know anything about it, and just not knowing. You feel, okay, I don’t think he’s in pain. And that’s very important of course. I just would hate to think of him being afraid. Or lonely. And I can't tell, I can't tell how he’s feeling.
Mark: But when you’re looking at somebody and they’re looking straight in your eyes and they start crying, you can't not take any notice of that, I don’t care what anybody says really. And if that coincides with something that you’re talking about, that you suddenly think, well, actually he might find that a bit distressing, it does make you think a bit more.
Morag: You know, and where there’s life, there’s hope, was something that we just kept saying over and over and over again, “where there’s life, there’s hope”, and we never gave up hope really, ever.
Mikaela: I should – you know, I should be grateful that he's alive, and that's the way I think sometimes. I'm guilty that I'm even thinking these things. But I know what he wanted and I knew my father and I knew that this isn't what he would have wanted.
Rifat: He went in his own way. And then everything boils down, my mum is like, “Why did we take him to the hospital? Why did we take him to that hospital?” So this why, why, why, why, is never ending
Phil: Even though I know that the chances of him recovering meaningfully are next to none, there is always some sort of hope that maybe he can. And that’s part of what drives you every day. Otherwise- if you didn’t have any hope, I don’t think you could do it. Because on the days that I feel – I don’t feel hope, I want to run away, but I could never leave him there.
Economic and Social Research Council, Knowledge Exchange Grant [ES/K00560X/1]
Financial support from the Health Experiences Research Group
Publication date: September 2014
Review date: September 2016