Table 2.

Identified themes, subthemes and illustrative participant quotations

Themes	Quotes
Facing hurdles to transplant assessment
Disparities in awareness of transplantation	“The discussion with Dr [nephrologist] was several years before I even went on dialysis, because we could see my kidney function gradually coming down”. (KTR; FG3) “They told me about 20 years ago when I was still at 70% kidney function that I would eventually have to have a kidney transplant, just with the nature of what I had”. (KTR; FG4) “I think it was two years in – during the dialysis when [transplant coordinator] actually talked to me about it and introduced me to all the facts”. (KTR; FG1) “It was only just prior to going on dialysis that I actually discussed with the doctor about transplanting. There wasn’t a lot of conversation about it… There wasn’t a lot of detail”. (KTR; FG3)
Frustrated with inflexible scheduling	“It very much was do this test, then a month later, do another test, do another test”. (KTR; FG4) “It was just frustrating, you’d go to [regional area] today to do a test, then another day to do another one, and it just went on and on, to the point of just before I did get my transplant I was just about over it, because one of the first tests you had done, well it was out dated now, so you had to go and do it again, and you had only just finished doing the other tests. I just wish that they gave you all the tests at once and go to [regional area], even if you went there for a week and done the whole lot”. (KTR; FG4) “One test, I had to go down to [metropolitan city] for, I was literally in the hospital for five minutes, it does take a lot out of your day”. (KTR; FG1) “If I was coming down for a meeting here, I would ring [transplant coordinator] and say, “is there any tests I’ve got to do while I’m down here to make it easier?” Or if I’m on holiday here, “can I do some of my tests before I’m going back home?” So that was my frustration, not knowing when’s the next test, or even a checklist of what to expect about all the tests you’re going to have”. (KTR; FG1)
Confused by inconsistent eligibility criteria	“I was told by all the doctors here, “you need to lose weight, need to lose weight” and it was really stressing me out. But when I went to see the doctors down there, the surgeon doctor, she come and saw me, she said, “you’re okay””. (KTR; FG1) “The surgeon said to me, “don’t put on any more weight” and that was fine and I didn’t. When you get down there, you’re sitting in the waiting room waiting to get your bloods done, and I was sitting in a room full of fatties. I was like, “how the hell did you get a [transplant]?”… Too many inconsistencies”. (KTR; FG1) “The inconsistency in the way that they would accept someone to operate on them was – there was no consistency”. (KTR; FG1)
Overcoming barriers to living donation	“For me as an Indigenous person, that was never on the table… I spoke to the medical team, I was advised that as an Aboriginal person, it doesn’t happen. Live donors don’t happen… I thought, that’s a generalised stereotype”. (KTR; FG1) “The only real options were my two sisters… They weren’t married or had kids or anything like that, I just said “not going there, I’ll wait”… Just the thought of doing that to my sisters, it would have drastically reduced any chances of them having children and affected their whole life”. (KTR; FG4) “My brother just chickened out in the end, he got scared. Once they explained it to him, he actually got scared”. (KTR; FG2) “We looked at live donors for a short period of time but none of the possible live donors were matches. Then I went on the [deceased donor] waiting list”. (KTR; FG3)
Insufficient communication and education
Exasperated by poor communication	“I found out after the fact, “oh you’re off the list for this reason and that reason”, but I didn’t even know that I’d been off the list for a few months. I thought there could have been a lot more communication”. (KTR; FG4) “I think there was a lack of communication. I’d go to get a heart x-ray and then I’d come back to the [regional hospital] and have to do something else. I found the medical staff asking me what tests I’d had… But I thought, surely you should be able to access my records and tell me?”. (KTR; FG1) “When you’re having your tests they don’t tell you the outcome of it. When you’ve finished your blood test or your cardio or anything, they don’t tell you, “you’ve got to improve on this”… There’s no communication between me and the doctor or the nurse”. (KTR; FG1)
Inadequate pre-transplant education	“I feel that in some of those seminars, a lot of it is skipped through… A lot of it is kind of oversold or portrayed as this really good thing… I think there needs to be someone in-house that does more education with you”. (KTR; FG1) “There was nobody to go and talk to about the transplant process and doing the education, because the renal nurses, they were having one-to-one with the dialysis patients… There was no time for going down and just sit down and have a yarn to them”. (KTR; FG1) “I had the webinars and couple of pamphlets and things, but other than that I really didn’t know what to expect”. (KTR; FG4) “I think they probably should give more education about the drugs beforehand, just so you’ve got an idea, because [post-transplant] it really hit me… I couldn’t handle that”. (KTR; FG1) “I didn’t get told anything about it really. They said, “you’re going on anti-rejection medications, you’ll be on quite a lot of meds after the transplant”. That was as far as it went until a few days after the transplant, sitting down and doing this quite intense… to go through and learn about all the different medications, and what they did, why you were taking them, side effects everything like that. Quite a lot to take in.” (KTR; FG4)
Permeating psychosocial hazards
Separated from home and family	“It’s a long wait, the six weeks, and you’re a long way from home and you miss home”. (KTR; FG3) “None of my close family or relations could get down to us at the time, they were busy with work and family and all of that. So that period was pretty lonely… There was no family support, which was for me, was massive”. (KTR; FG4) “I was really homesick, I didn’t even like the place. I just wanted to come home”. (KTR; FG4) “When we were down there, me and my wife, the person who was supposed to take our kids to school, they weren’t turning up, so the kids didn’t end up going to school”. (KTR; FG1) “Stuff is very short notice sometimes, which is hard when you do work, and I live on my own as well, so I’ve got pets and houses and stuff to look after to try to organise in short periods of time. I was completely unprepared to travel to [metropolitan city] for my transplant”. (KTR; FG3)
Suffering psychological distress	“Once I actually got home it was quite challenging just accepting the new way of life and figuring out what was normal, what wasn’t and the anxiety that came with that”. (KTR; FG4) “Emotionally and psychologically I could not handle it, I’ll admit it. Someone would mention something and I’d just start bawling”. (KTR; FG3) “I cried a lot over that, someone had to die to give me life”. (KTR; FG2) “I was feeling upset, for getting somebody else’s organ to be placed inside of me. Taking the life from somebody and putting it inside of me”. (KTR; FG4) “The anxiety and the unknown about what’s going to happen after the transplant and how everything was going to change”. (KTR; FG4)
Seeking support from peers	“I don’t see other recipients on [remote area]… I would rather come once a week or once a month, just to find out if there’s any problems, any issues with everybody or are they doing okay, or how I can support them”. (KTR; FG1) “It’s good to know you’re not alone I suppose, in the struggles that you do have”. (KTR; FG3) “I just knew a couple of people that had kidney transplants before, and I just picked their brain about what happens and how it all works… I thought it was good because you got first-hand experience of what happens”. (KTR; FG4) “I would have really appreciated someone that had been through it before to give me that guidance, it would have been useful”. (KTR; FG4) “We need that network… but we have no one to talk to. We think, is it only happening to us? It must be us. When really it’s not, it’s something that we all go through”. (KTR; FG2)
Repercussions of distance
Navigating unfamiliar environments	“You’ve got so much going through your head when all these events are happening. But someone calmly and collectively being able to do the paperwork side for you, being able to do certain steps to get you to where you need to go… I thought there was actually going to be some sort of a chaperone-type person”. (KTR; FG1) “When I arrived at [metropolitan hospital], I was by myself… I just couldn’t figure out where I had to be. I asked at an information desk, they ended up sending me all the way over to the dialysis unit outside the hospital… I was in a strange city, I didn’t know… I sat outside and started crying because I needed someone to just say “here, I will take you where you need to go”… I knew what I had to do when I got there, but I could not get to the place, and that was terribly scary”. (KTR; FG4) “I had another patient approach me, I went to the Aboriginal liaison officer and he just said to me, “you’ve got to go do this, this and that”. I thought, it’s not my responsibility, I’m just assisting another patient”. (KTR; FG1)
Suitability of accommodation and transport	“Mum ran around with the Domestos and cleaned everything, even though they’re supposed to be clean, she’s going around there scrubbing everything. Things weren’t what you’d consider a healthy environment for someone who’s just been transplanted and extremely immunosuppressed”. (KTR; FG1) “There were huge capacity issues. There were people getting shuffled around left, right and centre”. (KTR; FG1) “For my transplant I had my grandson with me, a 22-year-old… It wasn’t suitable for us because he’s 22 and we were sleeping in the same room, and I wanted a room for myself as a grandmother because I’m 70. I couldn’t change in front of my grandson”. (KTR; FG4) “For people in [remote area], for them to prepare themselves, to travel the next day… I didn’t get my travel itinerary”. (KTR; FG4) “I was booked on the 6:30am flight and no one rang me… When I asked the question, everyone told me they didn’t know about it, including [nephrologist], including the manager, including all the other people that were in charge of me getting there safely and without the stress”. (KTR; FG3)
Calling for sustainable local services	“The assessment in [metropolitan area], you go down, you’re there for one hour. When you think of people coming from remote areas, they’ve got to come to [regional area], overnight here first, so it takes a few more days”. (KTR; FG1) “If there could be a transplant clinic in [regional area], that would be amazing”. (KTR; FG4) “If they had something in [regional area] to take transplant patients back or other hospitals to look after them, that would have taken three weeks off my stay down there”. (KTR; FG2) “We’re sitting up here going, “where’s another doctor? Where’s someone to help that doctor?”… Where’s our professor with eight nephrologists walking around and the team of people rounding beside them?”. (KTR; FG3) “I understand us having a second one [transplant unit], but are we going to be able to staff it with the people that you get down in [metropolitan area]? That experience and knowledge?”. (KTR; FG3)
Overwhelming financial strain
Compounding out-of-pocket expenses	“You get out of hospital, and the first thing you’ve got to do is go to the Woolworths over the road, and you’ve got to start all over again, you’ve got to buy everything”. (KTR; FG1) “We had to organise our own accommodation and we were out thousands of dollars… It was a huge gap… I’d say four to five thousand we would have been out of pocket”. (KTR; FG4) “My wife runs a business too, of course she came down for a couple of weeks and that costs money”. (KTR; FG2) “I can’t even get in to see a skin specialist with bulk billing, or a bone density scan. I can’t afford to pay for it, not on the pension, no way in hell. Not when you’ve got to pay for registration and tyres to get there and the petrol”. (KTR; FG3)
Ongoing medication costs	“I’m not on a concession card or anything, the first six weeks down in [metropolitan city] was extremely expensive… I started off on 49 tablets a day, which you were blowing through $500 every three days”. (KTR; FG3) “Costs me about $300 a month for the stuff… My work is really up and down, all over the place, so sometimes it is a big problem”. (KTR; FG3) “I’m still working and the burden of the medication cost for me, because there’s no reductions in pricing I pay full price, and it’s a massive challenge for me and a burden”. (KTR; FG4) “I wasn’t expecting the bill… I think mine was about $500 or something”. (KTR; FG1)
Troubling long-term adversities
Broken trust in services	“They don’t listen, they don’t do everything, they don’t do follow-ups like they should”. (KTR; FG3) “If not more nephrologists here I think we need a bigger team that can take care of the minor details that the doctors aren’t getting to”. (KTR; FG3) “I’ve only had one check-up from the [transplant unit] since I’ve been back. I don’t even think that they were particularly aware that I was sick for as long as what I was when I spoke to that doctor”. (KTR; FG3) “The response from the renal team here is nothing, I didn’t hear from anyone for four months and I was just like, when’s my next appointment? Should I go and do bloods?”. (KTR; FG3)
Living with life-altering complications	“I have a lot of issues with viruses and diarrhoea and everything, I end up in hospital at least once every six months”. (KTR; FG2) “For years and years I kept getting urine infections, turns out they had left one of the stents in me from my first transplant”. (KTR; FG1) “The medications make me susceptible to sunlight and I’m prone to skin cancers, so I’ve had a mass of skin cancers burnt off… They still keep happening”. (KTR; FG3) “The kidney transplant that was left in had basically started to rot inside my body and that caused a great deal of problems that went on for about 18 months”. (KTR; FG4)
Complexities of medication coordination	“I only go for the original brand, I don’t have substitute brands, and that’s why I can’t get tacrolimus through my chemist, they won’t do it”. (KTR; FG2) “I live near a small town [rural area] and their pharmacy is only open two days a week for two hours… which is immensely inconvenient… I only go to town once a fortnight, I can’t afford to be wasting fuel driving in for another box of medication”. (KTR; FG3) “I think it was just too many tablets for starters, you get mixed up”. (KTR; FG1) “I found it a bit difficult at first, because so many pills”. (KTR; FG3) “It was absolutely overwhelming. I have an app on my phone that connects to my watch… that keeps me on track so that I know I’m not going to miss any of the medication”. (KTR; FG4) “I think there needs to be conversations around some of those drugs and what they’re potentially going to do… there needs to be some sort of drug education”. (KTR; FG1)

Abbreviations: KTR – Kidney transplant recipient, FG1 – Focus Group 1, FG2 – Focus Group 2, FG3 – Focus Group 3, FG4 – Focus Group 4