Table 3.

Selected illustrative quotations

Theme	Illustrative quotations
Donation as enacting familial responsibility for care
‘It’s a continuation of the nurturing process… I just can’t let him down. I really don’t want to do it, to be honest, I really wish I didn’t have to do it…. You can’t let children die.’ (Female; Parent donor; T1) ‘I just can’t do nothing and just sit back and watch, no. I mean that’s the dynamics of my family as I like to see them… I thought, well, I’ve got to live with myself and if I don’t offer and turn out to be able to then I’d feel less of a human being in a way.’ (Male; Sibling donor; T1) ‘[The doctor] came to me and went absolute ballistic. Why did I bring somebody on a cruise ship who had renal failure? He must have had this for years. I must have known about it. What was I doing?’ (Female; Spousal donor; T1)
Analytical decision making to mitigate regret
Avoiding anticipated regret and maintaining control	‘[X] who is the black sheep of the family, he’s also likely to go on dialysis shortly. I don’t think I’d ever do it [donate] for him, and that’s because he doesn’t look after himself in other ways… He’s not the sort of person I would trust to—certainly not as much as [recipient]—would trust to look after such a gift.’ (Male; Parent donor; T1) ‘My husband was willing to be tested, and seriously I ran a mile from that situation. Not because he’s not a wonderful man, not because I don’t love him, but my fear was, imagine having a fight with your partner and he would always be able to throw back, ‘But I gave you my kidney.’ You can never win that argument, so I always had this hesitancy.’ (Female; Sibling recipient; T1) ‘I think if my husband gave me his kidney… I would imagine that every time if I had one glass of champagne too many or I’m carrying too much weight, he would be like, ‘Oh, for God’s sake, I gave you a kidney so the least you can do is look after it.’' (Female; Sibling recipient T2)
Removing emotional impulsivity	‘It was almost certain to go ahead if they [recipient and spouse] wanted it. But then I did it [offered to donate] by email, I sent them both an email at the same time, so I wanted them to have a chance to think about it, and come to get over their initial shock… I didn’t want to put them under pressure of being face-to-face, and I wanted them to have a chance to talk about it between themselves.’ (Male; Parent donor; T2) ‘I’m always concerned about how she’s [the donor] going to come out of the operation…and I’m concerned if it all goes through and it all happens and it’s all wonderful and then for some reason, the kidney fails, how she’d feel about that. I’ve spoken to her about it. She’s comfortable with it.’ (Male; Sibling recipient; T1)
Strengthened interpersonal ties
Gaining a deeper appreciation among family members	‘It’s actually made it [our relationship] stronger. It could have been really difficult but because we’ve done it together and everything we’ve done, we’ve done together. So all the doctors’ appointments, and there have been lots, all the testing, all the information sessions everything we’ve done together.’ (Female; Spousal donor; T2) ‘I suppose we’ve got closer in a sense, where we communicate much more than we would’ve in the past. It has been generalised to other things [than the transplant]. And they see me as part of their family now, a closer family kind of thing.’ (Female; Sibling donor; T2)
Stronger empathy for each other	‘I look out for her health a bit more; what she eats and things like that; I don’t really say anything, but I monitor a bit. (Male, Child recipient; T2) ‘She has been sick for so long, and so when I was having all the tests done… it was such a tiny scrape on what she’s done her whole life, and it really made me appreciate what she has been going through. And I like I say it was a scratch.’ (Female; Sibling donor; T1) ‘I think it’s made us very sensitive that we’re very significant to each other and I think it’s made me treasure her a lot more.’ (Male; Spousal donor; T2)
Improving social participation	‘It’s a selfish act as well, in a way… it’s giving her a better quality of life, but it’s giving us a better quality of life as well, together. And we can go on normal holidays, and travel or do whatever, without any problems.’ (Male; Spousal donor; T1) ‘I think [post-donation] we could experience some more shared interests, like I like to walk, and I’d like to be able to walk with him, but it’s a snail’s pace at the moment, so I accept that that’s the way it is, so I do those on my own… but I would like us to have a fitter and well-balanced life.’ (Female; Spousal donor; T1) ‘I hope to get back to being more active [post-donation]. And doing more work walking and bike riding, going on holidays, and going to visit my grandchildren. And just having more energy… Take up in life where we left off really, in a way.’ (Female; Spousal recipient; T1)
Instability of relational impacts
Anger and aggression threatening to dynamics	‘I can’t understand why he will explode about the fact that a tablet dropped on the floor and it’s about the fact that he’s shaking, and he can’t control certain things anymore when he used to be able to control them so that’s just really hard to adjust to.’ (Female; Spousal donor; T2) ‘If his personality is maybe a bit different because of the drugs that he’s on, if he ends up too difficult to live with, I could leave. Well when he got sick he was on a high dosage of prednisone and he was pretty difficult then.’ (Female; Spousal donor; T1)
Unanticipated stress and emotional lability	‘You’d think we were an unhappy married couple who are constantly fighting. That’s how she’s been probably for the last year due to [the transplant]. Before that, we never fought. It’s got her uptight and panicking and worrying about she’d say things like she’s worried she’ll die on the operating table. She’s a panicker, a worrier.’ (Male; Spousal donor; T1) ‘We’ve had a few of those [arguments]… It has tested our relationship, but he’s never said, ‘Well I don’t want to do this,’ but I have said, ‘Stop it. Ring them up and tell them I don’t want it. I’m not doing it.’' (Female; Spousal recipient; T1) ‘I’ve actually found that’s one of the consequences of the operation. I’ve become more emotional… Just been getting chocked up. I nearly got chocked up then just talking to you about [my donor].' (Male; Sibling recipient; T2)
Triggering familial tension	‘[My other Son], he just refused [to donate]. And that caused a lot of disharmony between us at the time. And I’ll really never forget it. It’s etched there indelibly because I remembered how he refused, and [the recipient], even though he’s over it now, he will never forget that fact. [The recipient] was bitterly hurt by it all.’ (Female; Parent donor; T2) ‘With my sister the other day…apparently I was being selfish, and I just lost it. I got very mad, and I had to leave…. The emotions involved, all the what-ifs? What if it fails after a week just wasted a bloody good kidney? Dad could have had that for another 40 years?’ It was just a lot of pressure.’ (Male; Recipient; T1)
Renegotiating social roles
Unexpected continuation of caregiving responsibilities	‘I think the fact that the recovery is not always 100% and it can still be a roller coaster ride as far as health goes. It has its emotional dimension and because of that it can still put strains on a relationship.’ (Male; Spousal donor; T2) ‘I’ve had to take the lead on that [the drug regime] because I think it all became too much for him at times. He’s a little bit more confused than he was before…I don’t know how he’d go if he had to do that on his own.’ (Female; Spousal donor; T2)
Inability to relinquish the caregiving role	‘He insisted on driving me and I said, ‘Oh no, I can drive myself.’ It takes a real effort to do it [say ‘no’] without being hurtful. He’s was my carer while I was having dialysis because I didn’t feel well enough to drive home. He’s had this role of carer and I guess it’s maybe hard to give up.’ (Female; Spousal recipient; T2) ‘He [the recipient] suddenly was better one day and so he said, ‘Well, I’m off now. I’m going out for the day, and I’ll be gone,’ and I’ll just leave you there. Well, I was a bit miffed, but at the same time…I realised that was a good thing for me, but miffed, because you go, well, you just get up and go and leave me there now.’ (Female; Spousal donor; T2)
Disappointment with unfulfilled renewal of intimacy	‘My relationship with [recipient], well, in some cases we do have a rather difficult relationship, but I’m aware of the problems because he’s become more of a carer, and that’s the—it’s a bit of a pity, because there’s no romance. No romance or love making.’ (Female; Spousal recipient; T2) ‘As far as sex goes, I am frightened to have sex because I’m on the immunosuppressants, every time I have sex I get a urinary tract infection. And I just don’t want them there, they’re too horrible and so I always decline it.’ (Female; Spousal recipient; T2) ‘’That [sexual problems] is so normal with what he’s got, so don’t worry about it,’ and she [the clinician] was actually the one to say as well, she goes, ‘Watch out when you do get your kidney, because then he’ll be like little teenager again,’ and oh yeah good. Let’s hurry this thing up now.’ (Female; Spousal donor; T1)
Dissatisfaction over discrepant energy levels	‘I have got a whole big long list of interests there but he [recipient] doesn’t seem to have as many interests, he’s happier just to stay at home and do the gardening… I want to get out and about and be with people because I find it very stimulating and whereas he is not.’ (Female; Spousal donor; T2) ‘He’s become more of a carer…where he is happy to stay home, he’d be happy to stay home the rest of his life and not go anywhere, that’s what he’s like. But I don’t want to do that. I want to get out and about and involved in things. It is difficult when one person wants to go out more and have fun and the other person doesn’t. It’s a very difficult thing in a relationship.’ (Female; Spousal recipient; T2)
Guilt over unmet expectations
‘But if it went wrong and you think to yourself, oh shit, she’s given me her kidney and it’s all gone pear shaped. She’s out a kidney and nothing’s been achieved. I’ve stuffed it up, my body’s stuffed it up.’ (Male; Spousal recipient; T1) ‘Imagine the worst-case scenario he died on the table tomorrow. Imagine how I would feel and then having them [my family] blame me for the rest of my life.’ (Male; Child recipient; T1) ‘He’s [the recipient’s] extremely depressed, with the medication. He hasn’t got a job; therefore he’s depressed. I’m disappointed for him, but whilst my donation has nothing to do with that. I’m please I gave it to him, but I think it’s going to take a little longer for him to get up on his feet, but he feels guilty about taking my kidney.’ (Male; Parent donor; T2)
Inevitability of the gift relationship
Vague and transient indebtedness	‘Can you put a monetary figure on it? And then if you do, what is it? Is it too much? Is it not enough? Is it a servitude thing? I don’t know. I’ve written an email to [recipient] and the family to tell them what I think of her and what I think of her gift.’ (Male; Sibling recipient; T1) ‘I think maybe I just do a few extra things [around the house] because I am a bit indebted. I feel that I have to be more careful with my health, because you’re carrying something precious. It’s not a really conscious thing, but it’s kind of a subconscious thing that’s there in the background. I don’t go I’m going to vacuum the whole house and do this and that, but I know I do try and help a bit more and do things.’ (Male; Spousal recipient; T2) ‘It’s obviously a gift but there’s still you still have thoughts that you still are beholden to your brother. Not that he’s ever said it but you get that feeling. You can’t not have those thoughts can you when someone in the family has given you such a massive gift. There’s no sort of real issue but obviously you still think about it.’ (Male; Sibling recipient; T2)
Expectation of reciprocity	‘But I guess there’s implicitly, there’s always a sense of, understanding of what a gift implies from an obligation point of view, and I’ve tried to make that clear, from the time that we made the offer, it was understood it was an offer without any obligations. A concern I had at the time was that it might have affected our relationship, and I didn’t want it to do so, so I didn’t want any sense of obligation to be felt by the others.’ (Male; Parent donor; T2) ‘I thought it the other day, there was something that happened, and I thought well, you know I’m giving him a kidney, so he really should pay for this and now I thought to myself, I shouldn’t be thinking like this but I am.’ (Female; Spousal donor; T2)
Transferring kidney ownership	‘It’s a gift. It’s his. I have no sense of it as my kidney… it’s totally his. If he decided to go binge drinking every night, I might be a little bit concerned, but I would anyway. So, yeah, that’s totally his business.’ (Female; Spousal donor; T2) ‘I just feel really strongly that I gave the kidney for him so that he can live his life, whatever that means. He’s like ‘I don’t want to ride my motorbike because I might crash and it’s a waste of your kidney’, I’m like, ‘It’s a waste of your kidney if you don’t do that’, it’s not my kidney anymore.’ (Female; Spousal donor) ‘I’ve been really careful to make sure that [the recipient] knows that I don’t want her to have any guilt associated with it at all. I’ve been letting her know that it’s okay to be her after the operation…if she actually wants to have a glass of wine, or if she wants to have, you know, lead a normal life.’ (Female; Sibling donor; T1)

T1, predonation/transplantation interview; T2, postdonation/transplantation interview.