Table 2 Economic and non-economic costs incurred by informal caregivers

Economic Costs

Employment Consequences

Labour force exit/preclusion

Well I was working. But I have stopped…Yeah, the amount of time that I have off. It was my decision, it’s the school, a handful of weeks like every day. But she has at least one day off here or, like, five days off. She had had two weeks off, you know like. (Nadia)

when we got the one that was 13 weeks, (my husband) gave up his job and stayed with him. Virtually raised the third one. The first two we stayed at work and tried to cope, and then with the bad behaviour and that it just got a bit too much. And yeah, so I only work two days a week now, and my husband doesn’t work, he had got a carer’s pension for the children. (Bree)

Restricted work hours/absences

It is hard with the boys. I work three days a week at the moment, because both the boys do speech therapy every week, and it is hard, but such is life. We’ve always done it. (Barbara)

Out of Pocket Expenses

Purchases for Care Recipient: supplies

money is a big issue for me too. Like, for me to have a house, raise my daughter and buy her medical needs, her clothing, her food, like, just anything in general, with the house, electricity and that, I’m pretty much looking at nothing at the end of when I get paid. Like, it’s not enough. I’m on a single parenting payment and I get the carer’s allowance. Not enough at all. (Samantha)

…they ended up getting me an authority script for the [over-the-counter pharmaceutical] because it’s, like, $18 a box, but I was buying three boxes a week. And it’s got very expensive. Basically my husband works overtime to pay off our credit cards that pay for when I have been in hospital and you know we have to eat at the hospital, parking at the hospital, I am not entitled to anything. So, I don’t have a disabled sticker, I don’t have anything. (Nadia)

Well, the problem is there is Centrelink won’t accept that she has a problem. I have been to them and [her condition] is not considered, so therefore I am eligible for nothing. So yeah, it’s quite frustrating…they tell me that they are looking into a healthcare card, but nothing else. She is not going to get – I am not going to get carers [support], I am not going to get support or anything like that because they don’t see it, they don’t recognise her problem as a problem. So that was the next thing Dr. X was sort of saying when we have the biopsy done maybe he can try again, but I try until I am blue in the face to tell them she has a problem, but it’s not on their list, so it’s not recognised. (Nadia)

Purchases for Care Recipient: health services

So then I became a single mum, done this. Now I live in my own place where you’ve got to pay rent, it’s baby food, and – not baby food, nappies, food and all – I end up being broke. (Tabitha)

Because you’re putting so much effort into getting them to different places, especially if you’ve got to pay privately as well, it really does hit the hip pocket. Um, sometimes it can make you go without your petrol because you’ve either got to weigh it up what is more important. (Rita)

the therapy stuff was a lot – it’s a lot harder to access than – even with children that have very clear diagnoses and very clear needs, I mean unless you’ve got money to, sort of, get the private stuff. (Ainslee)

I mean it’s – it’s significant because, especially, um, we did OT for a while through the kids’ hospital and the private one there, um, I mean the initial, the very first visit and it was literally half an hour, it cost – it was, like, $180… and you only got, like, $40 back. Like, it was really small… And then it was – I mean every subsequent half hour was, like, 50 bucks and you got $25 back, or something, so – but it’s that initial, sort of, um, cost - and plus travel and plus with young kids, you know…a lot of it was just play therapy and, you know, stuff that we do at home anyway, and I just thought, you know, it was such a waste of time and money. (Ainslee)

he was seeing another paediatrician and I just could not afford to send him when he needed to go because it was like a hundred and something dollars. I know that you get money back but its $100 that you have to fork out to pay for it up front. (Grace)

Cause it’s expensive. If they didn’t have a free service like this, what would they do?...You know, and living expenses – living. I – I get broke you know what I mean? But that’s with the circumstances of taking a pay cut and them sorts of things. (Laura)

Transportation/travel

Costs me about a hundred and two dollars to fill up my car. And that means if I go to (hospital) more than four times a week I have to fill up again. (Lesley)

There’s no way, I would never afford the petrol; it’s right out [distant suburb]. Then you’re stuck in traffic, you may as well wait out there at the gate [laughs], take a pillow. (Melanie)

Caregiving labour

Time spent getting to services

You don’t pick the school they actually go to. Um, when they’ve got a certain level of disability where they need to be at a special school, um, you don’t get to pick…they decide where she fits best and where there’s space… Because there’s not very many specialist schools in Sydney…it’s an hour each way for us, basically…it makes it hard, and I think people just, sort of, take that stuff for granted that you just can’t send her to the school next door… you have to send her to the place that they think is going to give her what she needs…I mean it’s a really good school, and stuff. It was just the distance, and it’s not feasible for us to move closer ‘cause it’s more expensive to live close to there. (Ainslee)

…when they have got appointments and they are all bang, bang, bang, and that’s a bit challenging because I have also got my own appointments and so I try and work around so it all fits in. (Stacey)

Non-economic costs

Physical Health and Wellbeing

Injuries/Physical Stress/Fatigue

they didn’t put [the child] on drugs, they put me on drugs … because she was so bad before I got here, um, I had a broken nose from her… I couldn’t touch her without her attacking me, yeah, really violent. (Jocelyn)

It’s tiring and especially when I work nights… It’s tiring to, um, drag the kids around and – yeah…I mean it is - it’s very tiring, emotionally and physically. (Ainslee)

Mental Health/Emotional Wellbeing

Depression, Anxiety/Psychological strain

And then, yeah, when she got diagnosed with it – it’s hard…I stress a lot, I cry a lot. (Rachel)

It’s become very stressful, yeah. At the doctor’s today, before I was going to the hospital, I am on edge and I am, like, fighting doesn’t get it done, but I can’t just sit back and agree anymore and say, ‘Yeah don’t worry, you know it’s okay. We will see.’ (Nadia)

I feel a little bit, you know, like last night, oh, my chest started getting a bit tight, you know…She takes out a lot of frustrations out on me and, well, I’ve got nobody to take mine out on, so I need my time out. I’ll lock myself out in the backyard if I have to. Lock myself in the toilet [laughs]. It’s only five minutes, but that five minutes is all you need to calm down. (Jocelyn)

It is – it was very hard after I lost her dad. But I found it very – I’m finding it very hard to cope some days, and find it easy other days…[She was] shaking, and the eyes rolling back in her head, and all that. Yeah…I just wish that – it’s just like living in a nightmare. (Susan)

Social Wellbeing

Activity engagement/Social Participation/Isolation

Yeah, I don’t take her anywhere anymore. I don’t take her food shopping. I don’t take her – like my aunt’s wedding was on the weekend… I don’t take her anywhere with me anymore because she’s just too full on and I can’t – it stresses me out at the shops when I’m trying to do shopping and I can’t – I can’t think what I need to get. (Rachel)

I’ve moved down here [three years ago][to have better access to health services], I have been out bush for 20 years, so I’ve got no friends down here… (Jocelyn)

I don’t have no support…I do everything on my own…Sit in the hospital all day by myself… I don’t get people coming to the hospital bringing me meals…I wish I just had a little bit more support, you know. Like, a little bit more. It’s depressing sitting in the house by yourself and having no-one to talk to. (Susan)

Relationships

It’s affected it big time. Um, because I can’t go to see my grandkids anymore. Um, I worked, you know, and you have got to move around things looking after these two girls (Stacey)

With my daughter, it was hard until I got her into a boarding school. She started Year 7 this year, and she’s over at [Sydney suburb]. So she just comes home on the holidays.(Barbara)

My youngest daughter, she doesn’t live with me, she lives with my auntie because at the time I – like, I’m still a single mother but I can’t raise a child with a disability and a newborn on my own. It was way too much. My auntie, she can give, like, she can give my daughter a life I never could. (Samantha)

You’re too ashamed to be able to tell family. Some think ‘oh, that’s just gammon, the ADHD...he’s just mucking up...just give them a hiding.’ (Laura)