Table 3 Quotes

Q1

Flexibility at work

Work

I think that it’s precisely… well… that flexible way of working, so that if you need to go to the hospital in the afternoon, you first do a few hours at home in the morning; you sort it out again that way. (#7)

Q2

Support at work

Work

There’s a lot of understanding for my situation. My boss also looks at what tasks I have and whether we should be reassigning some tasks. And my co-workers regularly ask how things are going and if I’m coping, and they say they’re amazed that I’m still turning up despite all my care stuff that I’m doing at home. Yes, that feels good. (#14)

Q3

Juggling responsibilities

Experiences and needs

If you have a 36-hour working week and you’re also spending your entire Saturday there [with the care recipient], then you only really have the Sunday to yourself. And then you often have engagements, birthday parties or things to do; then it’s Monday again and you’re basically exhausted just as you have to go back to work again. (#3)

Q4

Support needs at work

Experiences and needs

Well, a few more options. I have four care leave days a year and that’s just not enough. I think that should definitely be increased a bit; it costs me a lot of money too. I work in the care sector but my feeling is that they don’t care that much for the staff. […] Show that you know they’re there and that you appreciate the fact that they are always there despite everything. For example, I never turn up late to work. So show some appreciation; just a bit of attention and a pat on the back every now and then would help hugely. (#6)

Q5

Flexibility from healthcare professionals

Context

I try to plan the doctors’ visits to fit in with my work so that I don’t have to take leave but that’s not always possible. Not by a long way. That’s also one of my frustrations, that organizations just... For example, he has to go to the hospital once every eight weeks for an infusion. So you need to be there at one thirty or two o’clock, but if I work until one, I want to have a bite to eat, let the dog out, then there’s the travelling time... so I always try and ask whether it could be a bit later. “No, because there’s no doctor available then.” Or you try to schedule an examination... No, they say, because we don’t yet know the doctor’s timetable, and you’re talking about the next month. Then I think: come on, how about a different doctor perhaps... just schedule that appointment. So I have to make phone calls again to arrange it. These are often the issues you run into. (#7)

Q6

Communication with municipalities and other organizations

Context

They’d lost the application we’d given the municipality’s care office, so I had to apply for everything all over again. Separately for each component, at that. And I’m talking about the stairlift, the shower chair, the mobility scooter, extra public transport… So at one point I asked, ‘Hey guys, can’t you do one big intake, because everything’s noted down there – we did an intake for the extra public transport where we discussed everything, including the home situation, so everything is recorded there.’ Couldn’t they just use that for the mobility scooter and the shower chair and the stairlift? “Yes, that might be a good idea.” I never heard anything more about it. (#6)

Q7

Assigned contact person

Experiences and needs

[The care recipient] was being treated at [the hospital] and I reckon they’re very good in terms of the care they give, in fighting cancer and explaining it all. But they don’t do anything extra in addition to that. And it’s quite difficult to know where you should go if something is up or who you can contact just to discuss things. Then I heard on the grapevine about the Social Support scheme, so we applied for that and the woman there was able to give us some more tips. Well anyway, we are trying to find a little bit of help, very slowly, step by step, but it would be ever so nice if there was a single contact point where you could go. Someone who could help you. There isn’t really that option, not in our experience, and I find this makes things difficult. (#12)

Q8

Communication with healthcare professionals

Experiences and needs

At the start, with the ‘bad news’ talk, I had to do a lot of chasing up with phone calls. There was a miscommunication with the hospital: “I’ll phone you the next day with the result”, and then they didn’t call. “Oh yes, I’ve got another blood test I didn’t pass on”, so I had to phone up about that. The lungs of [the care recipient] were filling with fluid, so I phoned the [hospital] again. Well, I spent three days chasing up that on the phone. […] So you’re basically spending all your time on medical matters, but then you have to phone another hundred people and wait for answers. Of course, they performed very badly in informing us. I also think that if you’ve sent someone home after giving them bad news, that someone – a nurse – should phone them and check how it’s going: “Do you have any questions about that talk? You could also set various wheels in motion if necessary...” None of that happened. I had to figure it all out for myself. (#2)

Q9

Frustration in relation to illness progression

Experiences and needs

The frustrating thing is that I’m standing there next to him and I see it but I can’t do anything. He’s in pain, but I can’t make the pain any less, I can’t help him, I can’t do anything, all I can do is watch that person deteriorating. There’s no point in being sad because then you... I think it’s a taboo for a family caregiver, you’re not allowed to complain about how hard it is for you, or to say that you feel sad or need to cry; you don’t do that because you’re not the one dying. Right? (#4)

Q10

Grieving process

Experiences and needs

Yes, that was a real ‘bad news’ talk. They were very clear in [the hospital], very honest, very good. And we looked one another in the eye, kind of this is it, this is the beginning of the end. Right, that day... I won’t easily forget where we were then and what happened. Then you hear what you’ve been afraid of, you know it’s going to come eventually but you hope it will be a long time before it does. Then the process of saying goodbye to one another starts; and that’s when the grieving starts too. (#18)

Q11

Sense of fulfilment

Experiences and needs

It gives fulfilment and it makes you feel better; it might also be part of the process of saying goodbye, guiding you towards saying goodbye. You spend an awful lot of time together; you’re literally caring for someone. [...] Yes it’s tough, but I’m also grateful for this. (#12)

Q12

Sharing care tasks

Strategy and action

And [the sister-in-law] also cooks for her sometimes and she accompanies her to doctors’ appointments and to the shops, so she’s doing an awful lot. I can’t bear to think about it if she were to say she didn’t want to do that anymore. I wouldn’t know what to do then. Well, you’d have to have a stranger come along. I mean, I’m not going to give up my job — I won’t do that. No way. Well anyway, she’s still doing it for the moment and she does it willingly. [...] So we have really welcomed that; I definitely wouldn’t want to be without it. (#5)

Q13

Compassionate care leave

Strategy and action

Well, that’s the tricky thing, you know. Of course, where we work [works in a hospital] there are lots of people with cancer; there comes a point when it’s a kind of final stage. So you could say “I’ll take care leave” but I can’t do that now because it could still be another two years... and I need the money too. But well, you know, it’s difficult. And as it gets worse, I’ve no idea how you’re supposed to combine that with your work. (#1)

Coaching programme

Strategy and action

At the start of the year, I was pretty much at my limit, so I started a coaching programme and that helped me to cope with it. I was starting to get fairly stressed out. [...] I was on a short fuse and simple things started to cost me so much energy. So then I told [my boss] and I got a lot of support there.I do feel much stronger now; I feel I can manage it at the moment. (#12)

Experienced burden due to combination of work and care

Health and wellbeing

I’m out of balance, things are tough at home, it’s not going well at work and the scales are tipping. I’ve really lost that balance completely. [...] I notice I’ve got these physical complaints, shortness of breath, hair loss, not eating properly, sleeping badly. My back often goes – I’m exhausted, I’m finished. (#4)

Importance of good health and sleep

Health and wellbeing

That I really do get a good night’s sleep, because I do notice that... if I’m really at it twenty-four hours a day or if I have to get up in the middle of the night, that genuinely gets to you. All sorts of things were going on in that first period. Once I had to get up in the night four times in one week. Well, you can’t keep that up, it absolutely wears you out. So I’m pleased that that [assistance from the 24-hour nursing service] is going to be starting now as it will help me keep going, give me a bit more rest. (#10)

Financial impact

Health and wellbeing

I’ve had to give up a lot in financial terms. [...] I reduced my working hours, for example, and that cost me a lot of money. All the patient’s contributions that we have to pay soon add up. Well, I think... right, if you can show that you cut your working hours for that reason, and I still earn a pretty good salary, but well… if I then have to spend it all on various facilities, of course it’s pretty galling, and that’s not what I studied for or what I do my job for: I do it so that I can live off the money, not give it away. (#6)