Table 2

Overarching themes and supporting categories

Supporting Categories	Exemplar quotes
Caregiving in the rural setting
Rural community and culture	Carer data: ‘all of a sudden thrown out of a community, to get the best medical care, because without question that’s where you’re gonna get the best medical care, is in Melbourne, with specialist doctors’ (C11). ‘I mean, it was really awful [cancer treatment], but some really good things came out of it. And you know, especially living in a country town, but the support you get is amazing, it really is’ (C01). ‘I know we’re aliens to them. Very alien. Um, you know, nice people but wouldn’t have a clue of the demands of a rural setting and rural life’ (C03). ‘[T]hat’s just our, the burden that you shoulder when you live in the country, it has advantages and it has disadvantages and that’s not a problem that we would expect them to deal with’ (C16). Social worker data: ‘such a different experience for rural and regional patients and I think it is a difficult thing for some of the staff who are used to just working in [metropolitan city] and dealing with people who are from [metropolitan city]. … saying ‘this is, it’s really hard to be in [metropolitan city], people don’t understand’. But as soon as I say ‘Well I’m from the country too’ they’ll actually, all of a sudden, be fine’ (SW01). ‘It’s almost that continuation of community. … the patient who’s very stoic and doesn’t want anything from anyone and doesn’t want to know anyone or talk to the neighbours, you know that might be the patient’s wish, but the carer might be going, “yeah, but I just really want to talk to someone else, is there anyone else who also has a relative who’s like this and doesn’t get that this is really hard”’ (SW04).
Life adjustments	Carer data: ‘move closer to the airport so we’re only about an hour away from the airport now. … So we’ve really reduced the strain on our family and on our finances by, yeah, basically picking everything that we do up and moving it a couple of hours closer to the airport’ (C19). ‘[P]urchasing equipment and things you know, on the farm, that accommodate his degenerating position’ (C03). ‘essentially using carer’s leave to take those days off. So it’s essentially eating into my own personal leave. I’ve not long been in this job so it’s a bit of a challenge at times’ (C05). ‘So whatever I have planned for that day you have to swap around, or wanted to have planned, swap around and that. So I guess that’s, to me, one of the most annoying things, is that you just can’t live a regular life. You sort of have to work around all these things’ (C07). ‘ Um, and we’ve got a bed and breakfast, on the property, and that’s been difficult to run. We’ve virtually closed the bed and breakfast. …. Because you think you’re going to get time off but you don’t really, because there’s other appointment’ (C12). Social worker data: ‘… so there is a lot of carers who actually also need care and support themselves. And that can be quite difficult to manage as well if they’re mobility’s not great then, often a lot of people are able to provide emotional kind of caring role but may not be able to provide the physical aspects of some of the carer’s role. … difficult in terms of role reversal when you have kids coming down who are caring for their parents, and adult children who are looking after parents’ (SW01). ‘[I]f they have children and commitments back in their home town then it would be hard for them to juggle that because they’re travelling distances. … if they’re running their own businesses, and a lot of them are, have farms, and they’re doing farming, and they take days of work just to be with their, um, patient or spouse or loved ones’ (SW02).
Available supports	Carer data: ‘They wanted staff that would be able to go and volunteer with the needs of people who were um, living in rural situations. I thought, well I know their situation very, very well’ (C03). ‘[A]ccess to a lot more stuff … ended up with a bed um, chair, um, a yeah, all those things that we sort of needed for you know, just the physical day to day stuff … they were coming, oh, every few weeks, just to make sure that everything was okay’ (C01). ‘But I’d don’t think I’d have the same support friendship wise. Because there’s probably not so much, if you’ve just got friends in Melbourne, they might ring up and say, “do you want a coffee” but there’s not the physical things that you need when you’re in the country. So, ‘cause [Husband]’s not allowed to lift anything, so just clearing the house you know, I mean, he really couldn’t do. He’d leave with me a pile of things on the table for me to pack’ (C01). ‘Well, my daughter, we just sort of, my two daughters live at home so they’ve been, and [Daughter 1] and her partner let their house Air BnB so they come back and stay at home and you know, doing that and if there’s anything needs doing or the lawns need doing the girls with deal with that’ (C08). Social worker data: ‘[S]he was admitted for a long time and she really wanted to see her kids and nobody could bring them over. So we actually facilitated that, we, there is an organization called Mummy’s Wish, and we managed to get, get someone to pay for a carer to bring the children over to see their mother’ (SW02). ‘Some of them are extremely well supported, but some of them are sort of not quite as savvy at finding supports or don’t really feel like they should or need to, maybe’ (SW04). ‘[E]ven the resources for cares in the rural areas are less than the resources for cares in [metropolitan city]. … when the nearest you know, um, carers group of whatever support is almost a drive away’ (SW02).
Accessing metropolitan cancer services
Accommodation	Carer data: ‘[S]taying within the apartments, um, within [metropolitan hospital] would be really helpful for us… Everyone’s so sick in there, how can you prioritise yourself over um, you know, a mother with a little kid who’s having chemo’ (C13). ‘I generally just look on booking sites for places close by … The cancer in the lung reduces his capacity to breathe and exercise so it just depends on the time and um, how everybody’s feeling as to how close we stay. But I’m not too bad at that, I’ll do a lot of research. Because it’s at our cost I sort of find the best place but possibility the cheapest, so yeah’ (C19). ‘[V]ery grateful and appreciative of the VPTAS, um, reimbursement scheme, um, and it does keep the cost down’ (C06). ‘[W]e got some information that we could park on site … the information as clear, um, there wasn’t a problem with that, um, and I don’t know if anyone can prepare you for the practicalities of coming in everyday’ (C14). ‘[G]ood thing about this place is you can just drive into the parking lot and you’re here. You don’t have to go out of the building again ‘til you leave. So everything’s here and you just hop on elevators all day, where ever you have to be. So that’s good, that takes a lot of pressure off having to find somewhere else to be in Melbourne’ (C07). Social worker data: ‘[A]ccommodation and being able to access the hospital are really big things for caregivers and families where there’s probably more options locally for metropolitan patients … things like the costs associated with transport, or parking, and just general access to the hospital, are things that probably that rural and regional patients struggle more with, because they’re not used to the costs and they’re not used to having to work out how around in a busy metropolitan area’ (SW04). ‘[T]hey can’t afford to stay in accommodation overnight, so they have to get up at 4 o’clock in the morning to be able to leave at 5 to be here by 9’ (SW03). ‘Especially if, as I said, if they’re not used to the metropolitan environment and don’t want to navigate the city and would rather be within the hospital’ (SW02).
Travel	Carer data: ‘That’s really hard because you know he’s, he don’t look to good and sometimes he don’t feel up to it. As I said to him, you know, ‘you’ve got to go, it’s saving your life.’ You know? If you’re going, you’ve got to go. But once he starts, you know, travelling and gets there he’s ok’ (C18). ‘Cause he couldn’t, he um, was unable to travel. So we, a couple of times, before the radiation treatment started, we would get into the car and get half way there and he was dizzy and vomiting and just couldn’t persist’ (C13). ‘I have a friend on [metropolitan address], but sort of, you don’t want to impose, or intrude, and they say, “look its fine” and they’re really understanding but it’s, you know, you make do, of course. And I’ve got my sister, step sister [metropolitan address] so that’s okay, but you’ve still got to travel’ (C06). ‘[H]our and a half into the city from there and the time of the day, because the appointments were often around sort of early morning, you’re caught in the peak hour traffic so that was a bit of a challenge not that, I – I’ve lived in [metropolitan address] so I’m used to the traffic but I guess it was just an added you know, sort of layer of stress that I probably didn’t need’ (C05). ‘It was, the first time was really scary. … I don’t drive in Melbourne as a general rule, and trying to find where to park and where to get into the car park in the old building, I got myself really confused … I kind of look back and go, ‘Oh, yuck I wouldn’t want to do that again’ (C09). Social worker data: ‘Even outlining some of the challenges you may come across, the transport, the cost of treatment, sorry not treatment, the cost of travelling to [metropolitan hospital], the cost of accommodation, isolation from your normal supports’ (SW03). ‘[T]he stress of traveling for some patients. They’re unwell, and it’s a lot of travel for some, when they’re traveling long distances’ (SW03). ‘You know, they’re in the city which they’re not used, they’re very fearful sometimes of navigating the city, how to use public transport’ (SW02).
Health system navigation	Carer data: ‘I had to intervene yesterday because [Wife] got quite emotional. had to go and talk to radiology and they didn’t know what was going on and she said, “I can’t talk to the oncologist.” Well that’s crazy. So eventually, that’s the really the only time we’ve had a real problem. We’ve to better contact now with the doctor. We’ve got contact with a nurse. … now we seem to have a more consistent point of contact’ (C12). ‘[W]e would do all the communication regarding appointments … We supported her to get to every appointment and we’d sit with her and try and make sense of it for her. … So that was probably the most challenging part of that journey’ (C11). ‘So you have to be a case manager. You can’t assume anything’ (C04). ‘They then said they’d try to get us in for like the slot straight after lunch so then you’re sort of first in and not waiting on all the prior appointments. Or, so we either got like a 10 o’clock appointment or something like that so we could get in, sort of get in and out and still be home at a reasonable sort of time, or we got in just after lunch. So they were pretty good like that, if, they knew we had to travel so they were happy to try and put us in at the times that they knew wouldn’t have as much backlog’ (C20). ‘[rural cancer service provider] oncology section that is pretty well organised, um, that um, we could ask questions where there were a few gaps, but fundamentally all the information about the accommodation and all the rest of it came through the web and looking at homepage’ (C04). ‘[Y]ou need to find a place that’s familiar to you that you can go when things get a bit tough, and find that early, you know, make use of the kitchens on the ward or on the day therapy um, they’re great escapes … you’re still in the space and you can sit down and grab 5 min, take a breath and then sort of go back. Make use of those spaces, they’re there for everyone’ (C06). ‘[A]lways on the look out for social workers, because I know that they’re going to be super helpful. … they made phone calls and all of a sudden, um, whilst I was still in the emergency ward, I had accommodation sorted’ (C11). Social worker data: ‘You know, I’m sure if you spoke to someone around health literary and literacy that rural areas would have some differences to metropolitan areas, … work through the information that they do receive might be a bit tricky as well. … from a hospital point of view, I think sometimes we don’t provide people with enough information about what might happen’ (SW04). ‘[T]hey don’t want to make a fuss and they’re just happy there’s an appointment … empower them a bit … especially the older ones, they don’t make a fuss. Um, they just say, “yeah it’s okay” and then they will be up at 3 o’clock in the morning to make sure they’re here by 8.30 or whatever time, you know’ (SW03).