The results are presented within four overarching themes, further divided into seven smaller themes, as shown in Fig. 2. The four overarching themes include ‘Context of Leaving Country’, ‘Bus Attendance’, ‘Social and Health Benefits’, and ‘Perceived Barriers and Facilitators’. Within ‘Context of Leaving Country’, the themes are ‘Grief and Loss’ and ‘Not Our Country’, the last being a powerful theme raising several issues including dying in the wrong Country and the shame associated with dialysing in the wrong Country. Within ‘Bus Attendance’ the themes are ‘Barriers to Attendance’ and ‘Facilitators to Attendance’. As more barriers were identified, these two themes will be presented together. Within ‘Social and Health Benefits’, the themes are ‘Happiness and Quality of Life’, a dominant theme reflecting how cultural commitments are fulfilled with participation on country and connection to family, and ‘Enhanced Relationships’. ‘Enhanced Relationships’ is an important theme as it includes the findings of improved trust and shared understandings between patients and staff who spent time on bus trips. The last overarching theme of ‘Perceived Barriers and facilitators’ includes the themes ‘Facilitators to Success’ and ‘Barriers to Success’.
Theme 1: Grief and loss
The devastating consequences of having to relocate away from Country were evident in interviews with patients. Separation from the land and its people was particularly prominent. Grief from missing family was expressed, and returning to Country meant they could be reunited. Patients described activities on land they missed which had cultural significance. The loss of life associated with chronic kidney disease in family members saddened patients who experience first-hand the inequitable affliction of kidney disease. Despite the risks of missing haemodialysis, one patient explained how he often misses treatments to travel to his Country to take part in local meetings.
Grief and loss: Quotes
P2: “Some of us have grandchildren and we can’t teach them in Port Augusta and Adelaide coz we’re not in the right Country.”
P3: “I’ll be happy to see my family because I miss them. That’s what we always want … I had to move here. I used to get homesick.”
P2: “I miss out on hunting Kangaroo, showing kids the Country, teaching our children about our dreaming.”
P4 “I had 2 nieces on dialysis here. I knew the troubles. They both passed away. I’m older than both of them. They too young”.
Theme 2: “Not Our Country”
This theme reflects the implications for dialysing on the “wrong” Country for patients and their communities. Moving to a new Country not only created an inability to contribute on issues regarding land and culture, but also the displacement of their voices in their communities by other Indigenous groups. Patients also felt they had displaced others from a dialysis position in their home town by occupying a dialysis chair that might otherwise been used by a local member starting dialysis. The significance of dying on Country was also raised as an issue for moving away from Country.
“Not Our Country”: Quotes
P1: “Here I am powerless, I have no say. It’s not my Country. I need to get back to my own Country. There are other tribes running my Country. I feel like we’re not part of the community here. I can’t go to there”.
P2: ‘Here, we have taken someone else’s chair. We feel shame because it is not our Country here. What is someone else is from here and they can’t come back from Adelaide coz there’s not chairs here. I’ve taken up that chair. [We] feel a lot of shame for that.’
P1: ‘The elder’s like to go back home to die, our spirit. My spirit is happier in our Country. We End up in hospital and we want to run away. Our elder want to run away coz he’s very spiritual. In spirit world, if you go to the wrong Country you’re not welcome, and you gotta leave’.
Theme 3: Barriers and facilitators to attendance
‘Barriers and Facilitators to Attendance’ identified issues which precluded or assisted patients attending bus trips. These included being unwell; not having appropriate accommodation; poor communication meaning some patients were unaware of trips altogether and a sense that resources were being tightened. Patients identified that being unwell meant it was too unsafe to attend trips and wanted to be well enough to participate in trips. Nursing staff had experienced seeing patients attend dialysis more frequently and appear to better look after themselves in order to be well enough for the time set for a bus trip.
Bus attendance: Quotes
P9: “I was too sick before, I missed out. I told ‘em I can’t go.”
S2: “if you’re stable on dialysis you could go on to the communities so it made a lot of people come to dialysis and they knew that this as an incentive”.
Patients and staff identified how some patients were missing out on trips as they were unable to organise transport or accommodation. Most patients were able to stay with their families, however some either had no family left in their communities or their families were anxious to have them stay due to their illness, worried that they will become unwell on Country. Many staff identified difficulty obtaining transport under patients’ financial constraints further compounded by time limitations around trips. The dialysis bus staff worked to access funds from other areas to facilitate transport for patients, but most patients relied on family for transport.
Bus attendance: Quotes
P1: ‘I got two aunties in Adelaide and they been renal for 20 years. They like to come back to visit Coober Pedy but they got no accommodation. So they can’t go, they gonna stay in a hotel?… They are trying to raise that issue but nobody listens to us’.
S1: ‘[One patient] wants to go up there and get a Nunkarri (Indigenous Healer), he wants to catch emus, he wants to just catch up with people and revisit, and none of the family are willing to take him coz they say ‘you’re too sick’ ‘we’re not gonna take you that far, even though the bus is up there they’re not comfortable doing that’.
S7: “They often need to have the finances to buy the bus ticket, if it’s not funded by the community that they’re from which can be a limitation”.
S6 “A time they lost [a patient], they relied on family for transport.. there were rumours that she was in Fregon. … [She] Ended up missing two lots of dialysis”.
The sense that the resources were being tightened as reflected by fewer trips in the most recent year was demoralising for patients who wanted more opportunities to visit their communities. Most patients expressed the desire for more trips or longer trips, with many asking throughout the interviews about when they could next attend a trip. It was evident that a few patients were unaware of some trips. One patient described how he left for his homelands on his own, and after a few days had started to become unwell, but to his relief the bus happened to be visiting, which meant he could receive treatment without aeromedical evacuation.
Bus attendance: Quotes
P2: “It’s really disheartening how the trips have gone from nine weeks [of the year] to only two. We just have to sit here on the machine, getting disheartened.”
P14: ‘When is it coming up though? Coz it’s nearly Christmas time now and I wanna go to Christmas to see my family but no renal. I want to sit down with my happy family’.
P6: ‘Last time I was at a funeral, I was in Pipalyatjara.. and I saw the truck there. Nobody told me! The community nurse told me. She said “hey that dialysis truck is there!” (laughing), I said “hey, I never heard from there!”, then I did four hours in the truck there I was really happy.’
Patients identified positive aspects of the trips reflecting the service to be safe and comfortable. All participants reported good relationships with the staff on the trip, P3 relayed that ‘they’re good people’, and P11 described the staff ‘like family’. The fact that there were three chairs on the bus was also identified by patients as a facilitator, meaning up to 12 patients could attend any one trip.
Theme 4: Happiness and quality of life
The patients described many benefits of attending dialysis bus trips, particularly by assisting them to fulfil cultural commitments, allowing them to participate in culture and be on Country. Patients described being happy because of the ability to connect with family and see their land, allowing them to participate in the activities that they would otherwise have missed out on due to their health needs, and to visit culturally significant places such as watering holes, mountains and trees. One patient wanted to attend council meetings to have a say on community matters. The staff also consistently identified how the bus provided improved social and emotional wellbeing to patients. This was evident when staff saw their patients meeting their families and engaging in cultural activities. The degree of emotional and social wellbeing improvement of patients, derived from being on the bus, was described by staff as a type of “transformation” by several staff members.
Happiness and quality of life: Quotes
P2: “The bus is really good for us, it gives us a chance to get home so we can have a voice”.
P6: ‘it is really good to see the whole family and that place. That feeling make me happy’.
S8: “It was just amazing seeing the look on his [patient’s] face when he got home … the look on his face when the grandkids ran out and you know, it was just priceless”.
S4: “They were transformed. They were completely different to what I see or saw three times a week, up there. Completely different”.
A major benefit identified by patients was that they could safely dialyse on their homelands and avoid urgent evacuation to hospital. It gave them an alternative to returning to their communities without dialysis support. This was dependent on the flexibility of timing of trips, and occasionally patients would have a funeral to attend without access to the bus. Staff also noted that the bus represented a motivation for patients to engage with renal services so that they may have access to the trips. The dialysis bus provided an attractive alternative to returning to Country on their own, without dialysis access.
Happiness and quality of life: Quotes
P3: ‘last week I went to Amata for a funeral. I left on Wednesday, on the bush bus. There was no renal there. … I got sick and I flew in, the flying doctors had to send me back’.
S2: “People did rely on the trips, so the bus helped a lot … people really enjoyed having the time off and not getting their treatment and missing dialysis and getting sick and you know, so, it helped in so many ways”.
Lastly, the bus increased the capacity of patients to be teachers of Indigenous culture for the younger generations as well as to their nurses, nurturing shared understandings and trust. This was of particular importance to community Elders who felt they were unable to pass on valuable cultural information to the younger generations. Patients could also pass on health information to their young ones; in particular, about their dialysis stories. The children in the communities were also given the opportunity to see inside the dialysis bus and form an understanding of what dialysis is.
Happiness and Quality of life: Quotes
S3 “[children were] keen to see what was going on they were very excited about it all and uh, every child at the school had a relative on dialysis at some stage or another so it was all very exciting for them”.
P1: ‘I say to them, you gotta eat right, you gotta look after yourself, or else you end up like me, stuck to the chair’. [A patient describing talking to younger generations about his health].
Theme 5: Enhanced relationships
A key theme emerging from interviews with staff was that of enhanced relationships which had implications for building trust and better communication between staff and patients, thus improving patient engagement with the dialysis service. The relationship between staff and patients was described as being ‘levelled’ following the shared experience on the dialysis bus trips, and it appeared that this was mostly a function of patients being back in their own environment. Staff also described how patients were more likely to engage in conversations around their health. Staff also felt that, through shared understandings cultivated during the trips, a deeper appreciation for the dislocation that the patients have suffered meant that staff were more comfortable and understanding when caring for their Indigenous patients in the dialysis centres.
Enhanced relationships: Quotes
S1: “you get to know the patients and they have a bit more of a trust and share a lot more. So you become a lot more aware of what’s important to them, and the cultural significance of returning home and getting a connection with Country … and family”.
S3: “the relationship was better because they felt more at home in their surroundings, and I felt less at home with my surroundings. So I was out of my comfort zone and they were back in theirs”.
S4: “They also would listen to you more about their health, because we had gained a different rapport, a different relationship and perhaps a bit more trust.”
S2: ‘they (the staff) are a lot more happier to look after the Indigenous patients because they think that they understand a little but more every time they do it’.
Many staff felt privy to meaningful cultural experiences, which also conferred a positive attitude to work back in the satellite unit. The cultural experience was described as far more valuable than other forms of cultural training. As mentioned in theme 4, the trips increased the capacity for patients to act as teachers of culture, giving them a sense of pride, and providing staff with a reference for how different life is in remote Australia. Nurses were interested in learning where their patients had come from, and this new shared understanding provided a basis for increased trust and engagement.
Enhanced relationships: Quotes
S1: “the staff are a bit more invigorated … a bit more enthusiastic … and [felt] pretty lucky that [they] can go and have that experience”.
S9: “We had one guy who took us out to the APY lands where you could only go with an Elder … he took us to places where you can’t go unless you go with an Elder, and he took us out there and explained everything”.
Not only did the experience of working on the bus improve relationships between staff and patients, but also between rural and metropolitan staff. It also helped forge mentorships between junior and senior staff. Rural and metropolitan staff worked together on trips enabling the exchange of experiences. Rural staff members described improved exchange of information between centres after engaging with the program. Staff from within the same unit who were on trips noted a sense of camaraderie following trips together.
Enhanced relationships: Quotes
S7: “part of the joy of going is that you meet people you haven’t worked with before and you can see how, learn how different areas work”.
S1: “I think someone always come back from the trip with something that they’ve learnt from the Adelaide staff and I hope that the Adelaide staff go back the same”.
S6: “It was good to show other nurses different ways of doing things, different needling techniques”.
S4: “Relationships between the staff definitely grew”.
Theme 6: Facilitators to success
Several factors contributed to the success of the bus, including supporting staff’s ability to provide both clinical and technical backup, and the presence of a clear co-ordinator role. Beyond these the use of local knowledge, flexibility and cultural awareness were important commodities. Channels of clinical support were available on trips, with medical and technical support via mobile and satellite phone. The dialysis bus always made contact with the local primary care clinic on arrival, this provided another avenue of support if required. All staff recognised the need for a dedicated bus co-ordinator position. This position added continuity for building and maintaining relationships between satellite units and communities, ensuring the bus visited at appropriate times. Other than acting as a community liaison, the bus co-ordinator also arranged transport for staff and patients to and from the communities, ensured the truck was stocked with enough supplies for dialysis and medications, and would trouble-shoot other issues as they arose, for example blown tires and missing patients.
Facilitators for success: Quotes
S7: “if we weren’t sure [about the clinical state of a patient] then we’d always let the clinic know and then we could get the clinic nurses to see them as well, and so if they needed antibiotics or something then they could get them, and we also had close contact with the rural CPC and [a nephrologist]”.
S2: “We need a dedicated person to run the bus so they know exactly what they’re doing and they have a constant communication with particular communities”.
S4: “When I had four or five going up together, that was actually quite time consuming… bargaining for tickets and money for them um, yeah it was a bit tricky. … once the co-ordinator had developed a relationship with getting the funding and working all of that out, it made it easier.”
The need for cultural awareness was identified by staff as vital for maintenance of trusted relationships with the communities they visited for ongoing trips. There was no cultural training other than assumed knowledge from working with Indigenous patients at satellite units. Staff identified that this training might have improved relationships between the service and community. The staff recounted near misses with cultural and language misunderstandings. The use of local knowledge was also identified as a tool that helped the staff find patients when dialysis was due in the communities, and identify safe roads to travel in certain weather conditions.
Facilitators for success: Quotes
S6: “I was able to explain that it was just a miscommunication. But it was lucky that I was able to explain that in that situation otherwise things could have escalated and could have damaged our relationship with the community”.
S1: “cultural teaching definitely has to improve”.
S8: “we do rely on our patients’ local knowledge coz we had a mix up in Coober where we did realise someone had come up … and we had no idea where they were”.
The need for flexibility was identified for success of the program, both in the ability to be fluid with concepts of time and meeting points during trips, as well as flexibility in the bus’s visit timetable and scheduling of trips. Examples of this flexibility includes changing scheduling to enable patients to attend funerals, or adapting to accommodation issues (e.g. one staff member had to sleep on a couch on one trip). If patients were not able to attend dialysis promptly, the timing of dialysis had to be altered - staff had to relinquish the rigidity of urban practice regimes in this setting.
Facilitators for success: Quotes
S5 “you have to be very open, and um… change. There’s a lot change, in very short times; you have to be flexible”.
S1: “You can’t always pre-plan things … the clients always say ‘can you organise the bus we’ve got a funeral on or we’ve got two funerals’ … and it’s just, it’s not logistically possible but it would be good if there was some way to have a little bit more fluid, the way the bus works … you can’t be rigid in your routines”.
Theme 7: Barriers to success
Barriers to the success of trips included external forces such as weather conditions and staffing issues. Environmental considerations were identified as affecting trips but were not modifiable, including wet weather along dirt roads and hot weather. Nurses relayed difficulties surrounding expectations placed on them for certain roles, adding strain on some who already felt culturally and geographically isolated. Expectations included: working longer hours with fewer breaks; having to drive around communities to find patients to collect for dialysis; and, performing dialysis in a remote location on patients who may be from other satellite units. Nurses described feeling either intimidated or uncomfortable carrying out some of these roles. Organising time to be off of work during bus trips was also felt to be difficult with pressures from short staffing.
Barriers to success: Quotes
S10: “[The co-ordinator] had to sleep on the lounge floor a couple of times because there wasn’t enough accommodation for all of them to stay”.
S4: [when a tire exploded] “a bit scary on the side of the road in the middle of nowhere”.
S7: “It can be a little bit intimidating, like I say there’s two females and you’re in the community picking up the patients and you’re knocking on random doors, that can be a little bit intimidating”.
S7: “Unfortunately we’ve got a pool of nursing staff who are trained in … dialysis, so you don’t have an excess of that, so for example you can’t take two nurses from one unit for the truck at the same time, they’ve still got sick leave and annual leave and you know, long service leave that they then have to backfill”.