Table 6 Categories and examples of meaning units for theme 3 “Concerns about the future”

Family (Heredity, taking care of their family)

if it’s my children who are affected, that’s what you think, when you get a disease then maybe they’ll inherit this (IP4)

you get a bit worried because you’ve got a disease that will be with you the whole of your life and when you have children and a family you think a little extra (IP4)

Functional disabilities (Physical complications and their consequences)

it would be unfortunate if my sight was affected because I can only see in one eye as it is today […] if that gets worse I’ll be blind in practice. I read quite a lot, so if my sight deteriorates even more it would mean a much much worse life […] I have devoted much of my activity to reading, watching television, keeping informed in general […] So if the sharpness of vision got lost I would be isolated and it would be very serious if that happened (IP2)

what I worry about, I suppose […] my heart, I that think it has had to work rather hard and maybe it will give up some day […] if it’s damaged it’s damaged […] then I can’t influence it so much (IP9)

foot ulcers are troublesome […] so I wouldn’t want that, and I don’t want to go blind either […] but foot ulcers are probably what I’m most afraid of, well, not afraid, but I don’t want them (IP10)

the only thing that worries me was that I would have to stop flying (IP1)

Attitudes towards control and risk (Need for control, wanting to know about risks of future complications)

[I] measure quite often at home, it’s because I want to be in control to see how it develops (IP2)

the same as when I repair a car, for example … how long will I keep the car I’ve changed to, so you sometimes have to get a checkup (IP3)

It’s good if you have knowledge […] about what you can expect and with that what you should be observant of and react to so that you can get care early, that’s important. (IP7)

I think it’s better not to know [exactly what happens] […] I had a serious brain hemorrhage when I was 35 and if I’d known that before it would have been terrible (IP10)