Table 2.

Range of costs of family/whānau caregiving.

Transport	I have two sisters who are in Melbourne, who are, they have to travel. So they travel in every alternate week, so it’s like, when it’s their pay day they hop on a plane, come for the weekend. And then they fly back with their children, and then they work for the alternate weekend for the next pay day. (CT, Tongan daughter, caring for mother)a
	We’ve had to get an ambulance because she wants it, it’s really uncomfortable for her and so it’s best to have them come out so that she can be rested up in bed and she can lie on her side and … [it’s] $75 per call-out yeah. (KU, Tongan daughter)
Parking	The parking was $18 a day for 7 days a week … and the girls [adult daughters] would come in as well … So I just went in and stayed there all day, I went in first thing in the morning and stayed ‘till 10 o’clock at night. And she was in there probably, three sessions that she spent in there, up to a week. But yeah, that probably was the biggest cost for the whole thing. (CW, NZ European husband)
	It’s a long travel and it’s a long commute for us and it’s the cost really because there’s parking involved too. So sometimes we can get away with one person staying at the Domain [a nearby park] with the car, while the other two visit, but we don’t usually go every day. (YU, Tongan daughter, who is caring for mother, with father and sister KU)
Utility	Power went up because she was home all the time, so the TV was on all the time; she was taking massively long showers when she was initially ill ’cause you know when you’re sick a hot shower does you well. Yeah that was on all the time as well because she was home, to stay warm. So yes our power went from $520 a month down to, after she’d gone, to $220, so it nearly halved. (EW, NZ European husband)
	And the power, yeah it was the power ’cause he got really cold so we had to use the heater like 24/7 we had to leave the heater on and our power bill shot up like a million dollars the last month. (KE, Māori great-niece caring for great-uncle)
Telephone/Internet	Yeah, it was like that can’t use up that much Internet, we’re like, what the hell?! [they had gone way over data cap on account] … it was just searching for things like occupational therapists and what he was entitled to, just the little things that we were always on the Internet for and just trying to figure out how to keep a lung patient comfortable. (KE, Māori great-niece)
Food (see Table 3)	There’s food ’cause she, ’cause mum doesn’t eat, okay? When mum feels like eating, if mum said to me, ‘Oh I feel like scallops’, I’d hunt the earth down to find scallops for mum because if she’s going to eat that I’d rather her have that. (ED, NZ European daughter)
Clothing & bed linen	We don’t want her lying on the same sheet every day, so once she gets a wash, all that gets removed, we place it into the washing machine, wash, dry. (CT, Tongan daughter)
	New pyjama pants and like easy to get on and off clothes. So that would have been about a hundred dollars. (MW, NZ European daughter)
Equipment/house modification	We’re about to spend a thousand dollars on a chair so we can get him in and out. (MS, Cook Island daughter)
	We did buy a wheelchair, which was several hundred dollars but it was just, it was really good at the end when she was, couldn’t hardly walk. (BC, NZ European son)
Alternative or complementary therapies	That was really costly, alternative medication, it was a Chinese herbalist, I think it cost us about $340 or $350 per week for 4 weeks. (MR, Māori daughter caring for father)
Professional carers	Yes, I paid someone … I mean that’s just what you do, it’s no different to having children … I wouldn’t have left her on her own … So I paid one that was about $1,500 but there’s still another couple to come in and then I’ve paid, the cash one must be about $1,000 or something. (GB, NZ European daughter)
Medication	Some of [the medications] are subsidised – I mean you’re not talking about two or three pills, but she was taking a cocktail of drugs for different things and $30/$40 for a whole prescription which doesn’t seem like a lot of money but every week it’s a lot of money when you aren’t working, ’cause you’ve got to be there caring. (EW, NZ European husband in his 40s, self-employed and caring for wife and 2 young children)
Products	Incontinence pads, I just, couldn’t find out from anybody, the hospice gave us what they could. I went and bought quite a few … The ones at the supermarket weren’t any good, I had to go to one of these [online companies], Nappies for Less I think it was. For the bigger ones, the larger pads. But then, once the district nurse came on board, after a few visits, I think I must have asked her, or somebody told me that they would supply them, they didn’t offer them. (CW, NZ European husband in his 60s)
Funeral/tangihanga costs	I’ve contacted the funeral directors that we dealt with with Dad and my late brother, and they’ll be the one that’s going to look after Mum when her day comes, just to get a costing … then we’ll be looking at ways of putting that cost together. And it’s not that we want her to leave us, but it’s just that we know that there’ll be a time when it comes. If we prepare ourselves now then it will make life easier for us when the time comes. (CT, Tongan daughter)
Employment	The impact for me was that I went from a salary, obviously prior to looking after mum, and gave up my job and so from a normal above average salary I went to $230 a week, so that was the impact for me. (JA, NZ European daughter)
Own health	And I thought, I can’t go through another night like this, I was just so tired and exhausted … The last four or five days are just so vivid, they were just so horrendously stressful and I was just a physical wreck. And then, of course, they die and then you’re straight into all the funeral things and I was the only one here, my brothers had to come from Australia and you’re dealing with phone calls and you’ve got deadlines for things like the paper and the funeral sheet and it just keeps going, it just keeps going. (GB, NZ European daughter, now on sleeping pills and antidepressants)
	Back injuries. (CW, NZ European husband and his adult daughter also, due to having to lift his wife in and out of bed and bathroom)

^aThese are illustrative verbatim quotes from interviews; in brackets are participant’s anonymised initials plus extra details to clarify context or relationships.