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Table 1 Interview fragments of family carers’ burden and hospitalisation (Family carers’ perspective in interviews, n = 18)

From: Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs

  Quotations
  I = interviewer
  F = Family carer
Degree of burden Quote 1 F15 (Woman 47 caring for partner, felt fairly heavy burden in the three time periods)
  F: Well, at first he managed all right - he could make a coffee himself, I mean, and he could take a shower on his own and all that kind of thing. But there comes a point when you see that he needs more and more help and you just feel “I don’t know how much longer this is going to go on for but I just want to be there for him for those last few months we’ve got”.
  Quote 2 F09 (Woman 48 caring for partner, felt no burden in the three time periods):
  I: Didn’t you find it hard going?
  F: No. I slept on the sofa for a year so well, you just do that, you just do that. (…) But this, well, I don’t know, I looked after him and made sure he got what he wanted right up to the end and so, then there’s a feeling of satisfaction that I did it properly, that’s what you wanted and that makes it all right.
Type of burden Quote 3 F30 (Woman 44 caring for partner, felt severe burden in the three time periods)
  I: You said that it was an emotional burden in the final months?
  F: Yes, all the time, yes.
  I: Can you say more about that? What was the reason?
  F: Well, I think it’s only logical, you see, you know you’re going to lose your husband. But I have to say I was in a daze the whole time, what with the hospital visits, the kids. It seems as if you kind of put your thoughts - your feelings - to one side a bit so that you’re there for him and don’t make things any worse.
  Quote 4 F29 (Woman 62 caring for mother, felt some burden in the 2nd and 3th month of patients’ life and fairly heavy burden in the last month of patients’ life.)
  I: Some people feel an emotional burden at a certain point because they think things are really not going well. Did you have that problem at all?
  F: No, I always felt that we should be pleased she had lived as long as she did because she’d always been quite poorly and had things wrong with her heart and so on. So we used to say things like we hadn’t expected her to make 90 or 91 with all the problems she’d always had and so on. So it wasn’t that I got very emotional about it, I think I’m too down-to-earth for that anyway, you know. We have to be grateful she lived as long as she did.
  (Quote 5) F23 (Man 61 caring for partner, felt severe burden in the three time periods):
  F: Well, someone who's fully involved in life and doing all kind of things is obviously going to feel incredibly cut off if they lose that ability little by little. (…). She was bothered about those things. And you can’t do anything about it, you can’t… You see, if someone’s hungry you can give them something to eat. If someone’s thirsty you can give them something to drink and if someone’s sad you can put an arm around them. But you can’t do anything about that. You can’t give someone back what they’ve lost.
Problem of burden Quote 6 F29 (Woman 62 caring for mother), felt some burden in the 2nd and 3th month and life and fairly heavy burden in the last month of patients’ life.)
  F: They [parents] did a lot for me in the past, so that I could carry on working, and now I’d like to repay that. But of course that doesn’t stop it sometimes being a burden.
  Quote 7 F23 (Man 61 caring for partner: felt severe burden in the three time periods):
  F: Well, I think it’s the confirmation for her, you know, that you are prepared to keep going 24 hours a day for her because you love her, you really love her. But it’s also confirmation for you personally: look, I love that woman so much that this is what I’m prepared to do. And then it’s not about making the effort, that’s not even quite what it is - perhaps it’s difficult to explain. I think it’s significant, it has added value if you have to make an effort.
  I: For who?
  F: Well, for the relationship I think. I do see it that way
Burden and hospitalisation Quote 8 F25 (Woman 61 caring for a friend, felt no or hardly no burden in the 2nd and 3th month, some burden in the 2nd to 4th week, and fairly heavy burden in the final week of patients’ life )
  F: Yes, the GP thought - saw - that it was getting too much for me as well. Because when he was admitted to (NAME of peripheral hospital), she put so much effort into finding him a place somewhere so that I could get my breath back again.
  I: Did that help you, getting your breath back?
  F: No, it didn’t. Because not only did I have to go to the hospital every day, that man was also waiting for me there every day. Yes, just like a child waiting for his mum. Kind of “Mummy, I’ve missed you”. Because that man didn’t have anyone else left (cries), I was the only one giving him love and caring for him.
  Quote 9 F09 (Woman 48 caring for partner, felt no burden in the three time periods):
  F: And then one or two weeks in between in hospital and then he’d phone me at 7 in the morning saying can you come and wash me because it takes so long, and they always hurt me, and then I’d spend the entire day in the hospital.
  Quote 10 F04 (Woman 63 caring for partner, felt severe burden in the three time periods):
  I: What did the nurses do?
  F: The nurses washed and shaved my husband and had a chat with me over coffee.
  I: Did the nurses give you support?
  F: Yes, they did give me support because they told how everything was going.
  I: Did you also consider having night-time care?
  F: Yes, I tried it for two nights. Because I normally slept on the sofa in the room where he was sleeping. Just when I dropped off to sleep he would get up quietly to go to the toilet but he wasn’t able to stand properly. When we had night-time care I slept in my own bed, but I kept waking up. No, it didn’t help; I wanted to be with my husband because I didn’t know when he would die. I wanted to be with him when he died. It was hard going. But I’d always promised him I would look after him at home