Table 3.

Selected illustrative quotations

Theme	Illustrative Quotations
Emotional investment
Shame of disappointing others	One thing I thought was wrong … We’re ready to go in virtually the next day, and I’m having a psychiatric test. That should have been the first thing I had, and I’ve now found out all these things that you didn’t know but someone’s waiting for me, and if I was starting to get frightened, I wouldn’t be game at that stage to say, “No.” Whereas at the start … you can go back home with your head held high and say, “It didn’t work out.” (Woman, related donor, Australia, 70s)
Desperation for a normal life	I’m glad you say selfish, because that’s what drove me, and I can only kind of admit it now. He got admitted into hospital six times 1 yr. We said our goodbyes so many times. It was just so draining … And then this came up. I put hand my up faster than anybody in this room. I was like, “Right, a solution, let’s go and fix it.” (Woman, related donor, Australia, 60s)
	Basically, my doctor told me … because I have a really high case of diabetes in my family, so he was like, “I really would prefer not to use you, because more likely than not you are going to have diabetes when you are old,” but I mean, for us, there was no choice. (Woman, related donor, Canada, 30s).
Prioritizing the recipient’s health	I went in there blind, mean … I didn’t ask questions … I didn’t care. I’d do anything for my family. (Woman, related donor, Australia, 50s)
	But that was a big barrier, like the unknown for myself … because they say, when you donate, there’s a risk that something could happen to you, but in the end, I said to myself my brother needs it more than yourself. Because you do have that fear regardless. Once I put him first, everything just pretty much went away. (Man, related donor, Australia, 30s)
	So if I were to continue as a donor, I had to take treatment [for an infection] … But they didn’t tell me that [until] about 4 months on. But by that time, I was emotionally connected to being a donor, an anonymous donor. I had very personal reasons for doing it. So it was hard for me to just back out and kind of give up. (Woman, unrelated donor, Canada, 50s)
Protecting eligibility	When I was going through the test, one of my great fears was that I wouldn’t be able to donate a kidney. I don’t know how that would have affected me, because I was so committed to wanting to do it. I was sort of nervous right up until they said “you are a match.” (Man, nondirected donor, Canada, 60s)
	That's a scary one actually, seeing a psych. It would be awful if I got so far. (Woman, spousal donor, Australia, 50s)
	They took away my surgery date … I really wanted [this specific person] to get my kidney. So I basically had to beg to get my surgery date back … it was really hard to convince the doctors that I was going to be okay. (Woman, nondirected donor, Canada, 40s)
Overcoming opposition	Well [my family], honestly, mine weren’t with me, but it didn’t make me think twice about it … I’d have put them to the side and thought about my own family. So it’ a hard choice; but in the end, you think it’s my choice and my choice only. That’s what I thought. (Woman, related donor, Australia, 50s)
	Because of customs of race and religion, people frown upon you … but it didn’t deter me from doing it. I didn’t put race, religion, or anything into it … they say it’s God that brought you into the world so that you should go to him. But you’re helping, you’re going into the ground anyway, so why not? (Woman, related donor, Australia, 40s)
	My best friend reacted much like your family. Was probably the only big fight we’ve ever had in about 25 yr. At the end of it, I just said, you know what, you don’t get a vote. The only one who got a vote was my husband; nobody else got a vote. (Woman, unrelated donor, Canada, 50s)
Undeterred by low risks
Worthwhile gamble	They didn't give you any guarantees; they did throw statistics at you. But you could be an anomaly, and for whatever reason, it doesn't work. But all of us got to that place, where it doesn't matter. If it’s a year, it’s a year. But we have to do something, so we have to try. (Man, related donor, Canada, 40s)
	They couldn’t guarantee, even though I ticked all the boxes, that I wouldn’t develop renal failure. But I could have developed it with two kidneys. (Woman, related donor, Australia, 60s)
Inherent invincibility	I wasn’t really worried about any of the outcomes. I knew I was a healthy individual. I didn’t really have any concerns. (Woman, nondirected donor, Canada, 40s)
	I mean I haven’t won the lottery yet, so I’m the rule, not the exception. (Woman, unrelated donor, Canada, 30s)
Normalizing risks	The information was that taking my kidney away is not likely to cause any problem. People live very healthy and long and active lives with one kidney. (Man, related donor, Australia, 60s)
	She was my inspiration. I went home, and I said to everybody, “I met this lady and son, and if that lady can do it, I can do it.” (Woman, related donor, Australia, 50s)
Medical confidence and protection	They put you through such a stringent testing process … We don’t go into it thinking “Oh my god, am I going to make it?” (Woman, related donor, Canada, 50s)
	The surgeon was very reassuring … I think it was more the confidence of how he spoke about the procedures he’d undertaken in his career. (Man, related donor, Australia, 20s)
	I did ask about life expectancy … He was very careful to tell me the data isn’t really there … So the answer he gave me is basically you have gone through all these tests. If something is going to show up, it would show up. I guess in my mind I was okay with that answer. (Man, nondirected donor, Canada, 60s)
	I was paying attention to postkidney op pregnancy studies … once you’ve passed the 2-yr mark, it makes zero difference. (Woman, unrelated donor, Canada, 30s)
Underlying fears for health
Processing alarming information	You can’t help but look behind the curtain and start poking around, like, will it hurt? … don’t start trolling the internet looking for these things, because you are going to find bad stories, and they are going to freak you out. (Man, unrelated donor, Canada, 40s)
	Well I guess it does give you twinges of qualm as you are told the risks. And it does make you catch your breath maybe. (Woman, spousal donor, Australia, 50s)
	Your primary motive is that you want to help your person. But simultaneously, you’re weighing your own risks. (Woman, unrelated donor, Canada, 30s)
	They were going to take my mum’s … and my mum’s pretty old, and I said, “No. Take mine.” That made it easier for me. (Man, related donor, Australia, 30s)
Preoperative panic	I don’t think it hit me until 5 min before when I was lying on the stretcher going into the operating room. (Man, related donor, Canada, 70s)
	A week before the operation, for final checkup, I sat in the park. I suddenly realized, “I got a family; what happens if?” I don't think I got the support or counselling. (Man, related donor, Australia, 50s)
Unsettling uncertainty	They didn’t follow up with donors for like the last decade really. So this is all pretty new. (Man, related donor, Canada, 50s)
	He was very careful to tell me the data isn’t really there. (Man, nondirected donor, Canada, 60s)
	One of my biggest concerns afterwards was what would be the long-term repercussions, because back at the time we did our transplant (10+ yr ago), there was no ruling data on long-term impacts. (Man, 50s, Sydney)
Mental preparation
Resolving decisional ambivalence	I was a little bit anxious. I didn’t really want to donate at the beginning, because I’d met my partner later on, so we hadn’t been really together that long, and I kind of felt a bit of guilt if my daughter actually got sick … but then after a while, I thought well, she’s healthy. It’s really an unreasonable fear and yeah. (Woman, spousal donor, Australia, 40s)
	Also going to get all the testing done by myself, I knew that was going to be one of the hard days for me, and I did it, and I broke down in tears; that was a real moment for me to say, “Hey, can I do it? Do I want to do it?” That was kind of one of my hard days. (Man, related donor, Australia, 40s)
Avoiding regret	I very selfishly was worried about how it would affect my marriage. Am I going to feel like he owes me a debt? Is it going to make things weird between us? What if he doesn’t treat it properly? … They got me a social worker to talk through this issue … they said, you really need to think of it as a gift. And you know that, but I think articulating it out loud made a difference. (Woman, spousal donor, Canada, 40s)
Managing expectations of recovery	They say about risks, maybe they do they generalize it. But they don’t tell you specifically what can happen. So it doesn’t mean anything. (Man, related donor, Canada, 50s)
	I would like those statistics, but later on, when you've already said I’ll do it, and then you have your tests and you're into it. (Man, related donor, Australia, 40s)
	There’s a Facebook page for kidney donors. I would ask the questions there, and it was more helpful than the actual hospital. Because it was life experience, so it was people that went through it, so they knew exactly what it was like. So, I found it very helpful. (Woman, spousal donor, Australia, 50s)
System shortfalls
Unnerving bodily scrutiny	He didn’t actually use the word “fat,” but “we won’t take, because you’re too overweight.” He was totally unprofessional … My weight has been a sore point. (Woman, Australia, 50s)
	I wasn’t even a family member, and it wasn’t even someone I knew very well; they went through it [the risks] so many times … I almost started pulling out the world’s tiniest violin. (Woman, nondirected donors, 30s, Canada)
Self-advocacy in driving the process	The amount of information we got was pretty much nil; we were prompting them every step of the way for dates, times, any scope of information we could get. We were pushing for it the whole time. It was never given freely. It was never given clearly. It was just a mess… (Man, unrelated donor, Australia, 30s)
	I got to speak to my surgeon; he said, “This whole process is like buying a car. You have to do the research. You have to look deeper, because you can’t rely on people to spoon-feed you the information.” … As soon as he said that, every bit of grey just went to black and white … that made everything heaps better for me (Man, related donor, Australia, 20s)
Stressful urgency	I do think they could’ve showed a little more zip to the process. I know it’s expensive to do all the screening, but when your loved one is not well, and you just see them going downhill, and being with them through their dialysis is the most frightening thing I’ve ever seen. (Man, related donor, Canada, 60s)
Inconsistent framing of safety	The psychiatrist. It’s like they were trying to convince you not to do it. It’s like, “You don’t have to do it if you don’t want to. You could possibly die. This could possibly happen.” And I’m like, “No. It’s all right. My brother’s sick. He needs it.” But they kept strumming in your ear, “Are you sure?” I don’t know if that’s part of the process. (Man, related donor, Australia, 30s)
	I didn’t know if he was trying to scare me to make sure I was going to go ahead with the operation or going to chicken out. (Man, spousal donor, Australia, 60s)
Questioning risk information	Maybe even a resource sheet of valid references … Because a lot of the time, I was told information, but I didn’t have a way of checking it or validating it… (Man, unrelated donor, Canada, 60s)
	I think it’s a grey area. I mean, if you start listing complications, no one’s going to donate. I also think, you know, they don’t all tell you the truth. You know, [because] they all say well people have it, nothing happens, everything’s okay. But I think that’s also not true. (Man, spousal donor, Canada, 50s)
Draining finances	It was a dent in the career a little bit … I think the financial assistance offered isn’t adequate. That’s just it wasn’t worth pursuing really. (Man, unrelated donor, Australia, 30s)
	I did research on life insurance. And how it would impact getting life insurance because of course, I hadn’t had kidney yet. So that was in the back of my mind, and that’s one of the things that I was researching, looking for studies on (Woman, unrelated donor, Canada, 30s)
Lifestyle interference
Living in limbo	My whole life was on hold. I had work and training to do, and I couldn’t do any of that until this was behind us. So I thought it could have been a quicker (Man, unrelated donor, Canada, 50s)
	So it was, it was very difficult to stick with it. Because I had other things I wanted to do that I couldn’t get started on because of this whole process and not knowing anything about what the date would be … So it was really difficult. I eventually had to tell them, “If you don’t tell me a date, like soon, despite all this time, I’m going to have to back out.” Because what I wanted to do, what else I want to do was important to me… (Woman, nondirected donor, Canada, 60s)
Onerous lifestyle disruption	It was more about organizing everything around it … organizing work, organizing kids, organizing people. So it wouldn’t have stopped us, but it obviously took a lot of planning … They rang me and said, “Well, we can do it next week” and “No, I’m not ready for next week.” (Woman, related donor, Australia, 40s)
	I work casually, and I got told one test, allow an hour. When I got there, “Sorry. Didn’t you get told, it’s A, B, C.” And that happened quite a lot … So, that was one of the annoying things I could have changed that shift and not missed financial benefit. (Woman, unrelated donor, Australia, 50s)
	If there was potential to group all the tests together in a consecutive day, it would be beneficial to a lot people, I think. (Man, related donor, Australia, 20s)
Valuing flexibility	I was fortunate I could use my sick leave and be away from work. But I think for anyone else who didn’t have that, that might be tough. (Woman, related donor, Canada, 50s)