Table 2 Themes and subthemes identified and illustrative participant quotations

Ineffective communication and education

Overcoming limitations of telehealth

“With some people you can’t do Teams, so there’s a cohort of patients who don’t have the IT literacy, I suppose to do Teams education.” (Nur; Metro)

“I think where there is any health literacy or language barriers, they tend to compound over telehealth.. I think that’s very often reflected in, patients will go and they will sit, but later on their memory of what happened just isn’t as good.” (Med; Rem)

“I think that it’s actually very difficult to do a thorough review and assessment of a patient via telehealth and particularly this patient cohort is very challenging to build rapport and to communicate with over a computer in a telehealth scenario. It’s almost impossible to build rapport, and then it’s very challenging for that two-way communication to occur effectively.” (Phar; Reg)

Language and cultural barriers

“Obviously some of it is the language because for some of them English is not their first or even second language, so that can be difficult.” (Sur; Metro)

“They’re not fully engaged with the health service and so they don’t know how to utilise the health service appropriately and their understanding of their illness, isn’t there. They’re not used to trying to manage their healthcare in such a structured way that’s required for transplant patients.” (Nur; Rem)

“I think their ability to ask questions is limited. And there’s a lot of questions that come and a lot of questions they might feel shame about asking in that setting, whereas they don’t in that smaller setting, and shame is a big put-er-off-er of communicating.” (Nur; Reg)

Limited awareness of treatment options

“They have no expectation that they could be considered for transplant, that’s really the biggest barrier. They are so demoralized when they come on to dialysis, when they realise that they’ve got renal failure.. So to make that change, “oh actually perhaps I could have a kidney transplant” is beyond their concept.” (Soc; Reg)

“I think a discussion about the risks of what can happen post-transplant is important, so that patients are aware of what the trajectory may be afterwards. I think that can be difficult because patients might not understand that after having a transplant, they’re not necessarily free to go back home and stay home, that it does involve still frequent visits to a hospital. And sometimes that course can be quite rocky afterwards.” (Phar; Reg)

“I think the patients are really facing transplant like it’s the golden egg and then if things don’t go well or they have an unexpected reaction to having someone else’s kidney in their body, or guilt over someone else’s kidney.. their mental health can really be prone to deterioration.” (Psyc; Reg)

“We already know that when patients are on dialysis, their cognition is not at the best. It’s really unideal that these conversations are happening at dialysis, but unfortunately that’s just the set up at the moment.” (Neph; Rem)

Frustration with education provided

“We know with people, in particular people with poor health literacy, it needs to be more than once, all the information needs to be repeated and repeated and repeated. I really think that a significant number of my patients cannot retain everything that they’re told in a one-off seminar. They just don’t have the background medical knowledge to do it.” (Neph; Rur)

“I’ve had them dial into those transplant webinars that they do for the patients, too high level. I had to basically sit through and explain everything when we dialed into one of them. It’s too hard for them to understand. (Nur; Rem)

“I think it’s also difficult to understand the level of comprehension. So whilst you might have a lot of conversations talking about pre transplantation medications or requirements or the process, it doesn’t necessarily mean that that was comprehended, because you may then need to have the exact same conversation later, or there was some missing in translation.” (Phar; Reg)

Overwhelming geographical burden

Struggling to access to work-up and assessment

“There is a push for the ANZDATA quality indicator report, one of their KPI’s is patients being worked up within six months of starting dialysis for transplant. That is just unachievable in the area that I work. That would never happen, and that is just simply because these patients live thousands of kilometres away from where they can get their cardiac investigations, or the bone mineral density scan, and they all have dental problems. So we’re always going to be underperforming there.” (Neph; Rem)

“If people are 8 h away from [metropolitan city] to ask them to come down for a transplant assessment clinic, that’s not so reasonable. Because if they’re a dialysis patient, you have to not only coordinate dialysis, you have to coordinate accommodation, you need to accommodate patient travel, you have to come with a carer, and you need to organise your medications.” (Phar; Metro)

“We do have CT and ultrasound and echo and stress echo here, but some of the wait lists are quite long. We don’t have private services to put people through, it’s all just government wait list, dentist as well.” (Med; Rem)

Coping with trying circumstances

“When patients come down from [state] to us, they’re petrified, absolutely petrified because they’ve never been to [metropolitan city] before, they’ve never been to the hospital before. They might not have even flown on a plane before.. And that’s a big thing.” (Nur; Metro)

“Ischaemic time is a problem. For our guys from the [remote area] to get down there, you’re looking at no less than 12 h to get down there.. So that means cold ischaemic time, delayed graft function, increased risk of rejection and they’re already at a higher risk of rejection as it is.” (Nur; Reg)

“Sometimes there’s quite a big delay in getting them actually down for their transplant. Which obviously increases that ischaemic time which increases delayed graft function.” (Sur; Metro)

Dislocation from home, country and family

“I think definitely it’s a huge deal for patients being off country and away from supports, specifically at a time when there’s a large and stressful event that’s happening.” (Med; Rem)

“We have a lot of patients who are displaced, so they’re not in their home community. Which has got to be heartbreaking for them. It’s got to affect their health not being where they want to be with their family. We’ve got a number who are very lonely, they’re here maybe with an escort. Sometimes their escort goes home and they’re by themselves. I think that’s a big barrier and that also feeds into them looking after themselves as well. And their priority is not what’s going on with their health, their priority is wanting to go home.” (Phar; Reg)

“There’s nothing for them here basically, there’s nothing, they’re ripped away from family and country. They get angry, they get sad. Some people turn to drinking. Even if they don’t want to, they’re trying hard not to drink, but because there’s a cohort of people from community they’re drawn to them.. And because they’re lonely and then they end up going along with having a few drinks and missing dialysis, missing medical appointments.” (Soc; Reg)

Fighting for equal opportunities

Perpetuation of institutional racism

“There are challenges. There are technical comorbidity associated challenges to do with hepatitis, diabetes, heart disease, vascular disease, absolutely right. I’m not shying away from that, and yet people get transplanted with those comorbidities in inner city [metropolitan city], but not if you’re black in [remote area].” (Neph; Metro)

“We collocate indigenous status and non-compliance. It turns out non-compliance is unfortunately, a relatively common part of any chronic illness, including the post-transplant journey. There’s a lot of non-compliance, some of it amongst indigenous Australians, that’s true. Also, the same sort of proportions amongst non-indigenous Australians. But the problem is that we collocate those two things with indigenous status and that is still widely prevalent today. How can I give you a kidney if you won’t take your tablets, or you won’t attend dialysis? But underlying that is this under communication and miscommunication. It is effectively a form of both individual and systemic racism, in my view.” (Neph; Metro)

“There’s a lot of reasons why people are not compliant, we’ve had a lady that recently has had a transplant and now it’s doing well. But in the previous five years, she wasn’t taking any of her medications because she’s got young children, was a partner that suffered domestic violence and abuse. You’ve got no time to go to the pharmacy and pick up your tablets when you’re dealing with all of these social issues.” (Phar; Metro)

“I’ve had experience previously where I’ve had an Aboriginal gentleman and his sister who was also Aboriginal wanted to donate, and they really blocked it, blocked it, blocked it, blocked it because they didn’t want an Aboriginal person as a donor.” (Nur; Rem)

Gatekeeping transplant opportunities

“There’s no equity amongst the country, so how can you smoke in [state] but you can’t smoke in [state] when the goal is the same? Likewise, if you’ve got a bit more weight on you, elsewhere you’d get a transplant, but [state] you can’t because they’re strict on body mass.. They wanted to see everyone that was 36 to 38 on the BMI or under, and then they still turn them all away anyway. So why say you’ll be happy to see them if you’re going to turn them away?” (Nur; Reg)

“With living related, I find they really, really block it and it make it twice as hard. And then they kept coming up with reasons why, they kept saying to her she’s too fat and really she was a size 12, not a lot of central adiposity. It was just, it was devastating. And that was two years of hard work to try and get them there.” (Nur; Rem)

“Each step in the journey just takes longer, and sometimes that time is what results in things happening to them that effects their suitability. So the longer they sit on dialysis, they just sort of end up getting more problems.” (Med; Rem)

“Then you have the other patients who maybe they’ll say to you, “how come nobody’s ever talked to me about transplant?” And that’s very upsetting.” (Soc; Reg)

Incomprehension of inherent disadvantage

“I think the locals know exactly what the difficulties are, and it’s these ivory tower, metropolitan transplants professionals “well I’ll tell you how I do it in my unit”. We’re the ones with the problem.” (Neph; Metro)

“I think some of the attitudes towards our indigenous patients are a bit ordinary at [metropolitan hospital]. I think there is an expectation that a remote area patient has the same resources as a person who lives in [metropolitan area], that a person from a remote area has the same health literacy as someone who comes from [metropolitan area]. Then they’re all benchmarked on a [metropolitan area] patient and our patients are not from [metropolitan area], they are from remote area communities and they have completely different needs and they need a lot more time and energy put into them than meeting them at transplant assessment clinic for 30 min. And then they wonder why the patients don’t engage, and it’s because you don’t have that relationship with them.” (Nur; Reg)

“It still seems like there’s a lack of understanding about where these guys are coming from and what they’ve been through and how hard it is to get them to that point. And then they go down there and they get told, “oh you need to lose two more kilos”, or “you need to do another heart test” or this or that or “your sugars are too high, go back and work harder”. (Nur; Rem)

Paucity of social support

Seeking safe and reliable support

“Not everyone has an escort, and so what do those people do? How do they get through the system at [metropolitan hospital] if they don’t have a support person and it’s frowned upon, it’s looked down upon, but some people just don’t have someone who can have six weeks off work, so that has been quite hard.” (Nur; Reg)

“Some people don’t even have availability to an escort. The escort is just not there. A person has their own life to live, so they need someone trusted and responsible with them. There’s a lack of those support people.” (Soc; Reg)

“It’s trying to find someone that you think will be able to leave the community for two months or three months, and often someone will identify themselves and then they might pull out. So you often work through and have to find two or three people that would be willing to leave because everyone that’s actually quite functional, and this is probably not just rural or remote, everyone that’s functional that can manage that responsibility of caring for someone else often already has a responsibility for caring.” (Nur; Rem)

Pervasive psychological distress

“It’s been suggested that we refer some of our patients for a psychiatric review, when really I think what they mean is that this person is anxious and could do with seeing a psychologist. But again, if it’s going to be a psychologist, I think it would be helpful for that psychologist to have an understanding of their journey that they’re facing and the significance of that potential life impact.” (Med; Rem)

“Well their loneliness and they need people around them. If you look at someone going through such a big procedure and to keep their emotional health safe so that they can physically deal with the issues, you have to have your mind in the right place as well.” (Soc; Reg)

“The thing is we’re talking about something that’s life changing, but also are they going to actually come through the operation? Are they going to survive? And then once they have survived, the support, because every day going to the hospital, every day worrying about what is ahead of them.” (Soc; Reg)

Reluctance to abandon responsibilities

“A lot of them just, they have to refuse. They’ve got kids to look after at home and if their husbands are cray diving and away for months on end, they’ve got no one else to watch their kids.” (Phar; Rem)

“They’re still maybe having people come to check on the home or doing things, because of the sort of sense of relocation. So the social support not just where they’re from, maintaining things like the childcare or the house or the bills or anything at home, or if they’ve got caring responsibilities, not just children, but maybe elderly parents.” (Soc; Metro)

“It just depends on the families. If you’ve got your own family back at home, who’s going to care for that family? So that could be if you have children, not everyone has anyone who can support the family.” (Soc; Reg)

Crushing financial peril

Contending with unexpected expenses

“So often even to get them to go down for work up stuff, they’ll only do that on pay week, because otherwise they don’t have enough money. You might get your accommodation and airfare or transport paid for, but then they have to pay for food and they’re used to living off bush tucker or rice or something really cheap in the community that they share with family. Whereas in [regional centre] they actually have to go and buy stuff which they can’t afford.” (Nur; Rem)

“Some of the challenges with transplant work up are access to investigations. I know all this stuff is supposed to be Medicare bulk billed, but most of the places that are providing these tests are private radiology companies.” (Neph; Rur)

“They have to fork out money to buy all the transplant medications and some of them are actually not financially prepared for that. So financial barrier, from probably buying medications post-transplant that’s pretty expensive.” (Neph; Reg)

Scarcity of financial assistance

“Most of them are still paying for rent at home and then having to pay for the additional accommodation cost. Most accommodations here are between $140 up to about $220.. Only $70 is covered for that accommodation. So that’s a massive gap.” (Soc; Metro)

“Money is the big one at the moment, so we know that it’s going to cost them money to go for a transplant. They need money to get to and from [regional centre] airport. They need money to get to and from [metropolitan city] airport. They need money for food, they need to cover their rent while they’re here, and while they’re down there, they got to pay their rent up here. They’ve got to pay any out-of-pocket expenses for accommodation down south. Food tends to be a bit more expensive because they don’t have their normal pantry supplies that they have up here. So I think the guideline has sort of always been around $1500 to $2000 that you need in your pocket for that.” (Nur; Reg)

Juggling competing priorities

“If you haven’t got enough money to pay for your food and haven’t got enough money to pay for your rent, people will come and they say “I need that money for something more important to me than it is to you”. And then all of a sudden you’re not feeding or you’re not housing, then your pills are a long way down the list of priorities. You’ve got to keep the family safe and fed.” (Neph; Metro)

“When you tell them they’ll be coming every day, if they can’t take time off work you’ve got to talk to them about that stuff. That, I think is the biggest thing, because it’s also the biggest thing that impacts their finances if they’re not working post-transplant, or for some of them if they’ve got their own business or casual work.” (Nur; Metro)

“We’re talking about people who live day-to-day. Who again, talk about health literacy, what about financial literacy? “How can I save? I don’t know how to save”, and again if you think about the collective society of Indigenous people, people don’t squirrel away their own money. They share their money, so saving is not something that’s comprehendible to them. And then for the non-Indigenous people, maybe people who are working, who are living day-to-day, paying rent for where they live, paying a mortgage for where they live, and now they’ve also got this added expense.” (Soc; Reg)

Deprived of adequate local care

Absence of skilled and stable services

“One challenge we do have is the complete lack of mental health services, and drug and alcohol type services. I’ve got a few people with major trauma backgrounds, and there’s just nothing for them. There’s no way that they can get past the trauma to be organised enough, and then well enough with regards to adherence and diet and maybe losing some weight.” (Neph; Rur)

“We don’t really have any support for heavy dietetic input or there’s not really any ability for us to refer to exercise physiologists or for them to even see anyone privately.. They don’t even exist in the area I work, some of the places like [remote area] doesn’t even have a gym, so they can’t use effective exercise to lose weight.” (Neph; Rem)

“At the moment in [regional centre] they don’t have a routine appointment with the psychologist following the transplant. And I think it’s probably to do with workload and capacity, but I think that’s a real area that needs to be refined.. There’s certainly a steady stream of post-transplant patients coming through ED following self-harm or suicidal ideation.. But that post care isn’t being well serviced.” (Psyc; Reg)

“I wish I had more time to sit with them and talk about transplant, but when I do go to see the dialysis patients, I usually do that on a very quick outreach trip.. So it’s quite challenging to see eight patients within two to three hours.. And to have a decent chat with them and explain transplant can be quite challenging.” (Neph; Rem)

“So partly it’s you’ve got fewer services, but also you’ve got very high turnover services, it’s very few local people have all the expertise, and then the people who do come don’t stay.” (Neph; Metro)

“They have a lot of trouble with staffing there as well as retaining staff. So we’re always liaising with different people who don’t understand what they need to be doing and the importance of getting this and that done.” (Nur; Metro)

Concern around treatment delays

“They don’t have pathology on site, they just have i-STAT machines. A challenge is sometimes with the pathology and how long it takes to get to [regional centre], especially in these areas that don’t have pathology because the sample can degrade. Often the tacro levels and the more fancy tests take up to a week to come back.” (Neph; Rem)

“It’s difficult from a medical point of view because we may have concerns on a blood test that’s taken 40 to 48 h to receive and concerns about complications are high.” (Neph; Reg)

Chaotic medication governance

“I was always insistent that they had at least two weeks of medications up their sleeve, because those remote communities like [remote area] and [remote area], they do get flights in there, but you get a cyclone going through and you mightn’t have a flight that week.” (Phar; Reg)

“Storage is a huge issue. It’s hot as hell up there and not everyone has a fridge in their house or electricity. So you’re not keeping these meds below 25 degrees. They’re getting up to 40 degrees.” (Phar; Rem)

“We got caught out one time where a patient was in [remote area] and we weren’t sure if they had neutropenia. There were no flights out for the whole entire weekend because Qantas changed their schedule for flights, so we couldn’t check their pathology and there also was no GCSF in [remote area] or that particular area. So if it was real and he developed fevers, or just we just felt like we should treat, we just didn’t have that option. And there were no flights, so how would we get that medication in?” (Neph; Rem)

“There’s a lack of healthcare professionals in certain regional areas that have an understanding of the importance of medications post-transplant. Therefore, patients need to be able to advocate for themselves, for their health, but sometimes that can be difficult for patients who have a distrust of the healthcare system or they don’t feel confident in their ability or they have a lower health literacy to be able to do that.” (Phar; Reg)

“They have different primary healthcare providers in these communities.. If the patient goes and sees an [FIFO health service] doctor and they want to prescribe them or change their Webster pack and they don’t have an understanding of tacrolimus, a mistake can happen there, or they use a different EMR so they will have a different medication list to what we’re using on the [state public health system] EMR, and then the patient once again gets confused, which I don’t blame them because I’m confused as well. There’s just all these areas where mistakes can happen.” (Neph; Rem)

“Liaising with community pharmacists gets quite complicated. Writing the script incorrectly is very simple to do. Even just doses change, and then the paper trail of the dose changing can be different and it can be difficult to keep up with it and medication errors happen across the board all over the place.” (Neph; Reg)

“Making sure they’re not changing brands of medications because that’s become such a challenge when they go back to community pharmacies and taking one brand for one strength and one brand for another.” (Nur; Metro)