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Table 1 – Vision-related activity limitations experienced by participants with diabetic retinopathy
Themes / Sample quotes (of n=803)
Day to day tasks / I’ll tell you another thing it’s stopped me doing and that’s cooking…I can never tell when the meat’s done because you can’t see the colours…I’ve cooked dinner for the family and they say, ‘This is bloody raw’. (FG8)
Buying the cat food is a nightmare because it’s often down the bottom. I can’t see them so I have to…get down on my hands and knees and peer at them which is fairly embarrassing…(FG7)
I also have trouble picking up cyclists on the road …before I could pick them a long way away, but now ‘oh there’s a cyclist there’ (FG5)
I virtually never drive at night time, only down the street locally, and places where I know where I’m going. Reading street signs at night…is shocking… Different conditions driving, rain, fog is terrible, and dawn time and dusk time, when the sun is low in the sky... (Int7)
Social functioning / When you’re sitting round a table and people are talking, you can’t see the face and expressions and what they’re saying to you. And you might take something the wrong way…it’s hard to communicate with people when they’re over there…(FG8)
Faces are a real issue. If I meet someone and then I see them again 2 weeks later…I’ve really lost that facial and it’s really embarrassing. (Int1)
Table 2 – Mobility issues experienced by participants with diabetic retinopathy
Themes / Sample quotes (of n=91)
Public transport / I had one scare on the train. I nearly stepped down between the carriages because of the gap... (FG3)
Walking / I can’t cross the road. I used to wait until there was no noise of cars and I’d walk across…but I was nearly hit by a pushbike. And I used to walk around the beach but I was tripping over the roots of the teatrees...(FG3)
Table 3 – Emotional reactions of participants with diabetic retinopathy
Themes / Sample quotes (of n=260)
Sadness / Also, I think even hopelessness sometimes. Because at least you have the hope that if they give you good glasses you’re going to see again. I haven’t got that, so I feel so hopeless as well. (FG5)
I know what I need to do; I just can’t get myself to do it. (Int4)
Anger / Frustration sometimes, the kids ask you a question and you can’t read it…and then they get frustrated because I can’t help them out straight away and they can see I’m getting frustrated. So it’s a little vicious circle. (Int12)
I was quite aggressive at times towards the wife which wasn't fair on her really and I took quite a bit of calming down when I went through the first lot of laser eye (Int16)
It’s sort of oppressive. You know it’s an oppressive thing. You think oh I can’t do that. (Int1)
Fear / My husband can’t work...So I’m the sole income…so I find it’s extra responsibility on me to try to maintain my vision, because if that failed, I mean, it makes it really difficult. (FG4)
It makes you feel nervous, I’m nervous all the time. I never used to be nervous, but I am now and it’s because of the vision. (FG4)
Self-perception / I remarried and my new wife was very young and very, beautiful and I had a fair bit in those days to offer her, but when I lost my vision I suddenly felt that I had nothing to offer her. So I told her to go, in fact, so that she didn’t have to put up with a…fat old man who was blind. (FG3)
Finding your change in your purse. Oh it’s something I picture with 80 year olds not 50 year olds. Fumbling around… (FG7)
Sometimes it bothers me because you ring someone and they take you somewhere…And then I’m putting them under pressure because I’m making them late and making them rush for me. (Int11)
It affects your independence. Yes…that’s one of the worst things. (FG8)
I have to get people to read them: What’s on the menu? How much does it cost? You look stupid…Very embarrassing. (FG8)
I feel embarrassed knocking people back from invitations…I guess I feel I don’t want to divulge why I can’t do something… (Int1)
Table 4 – Health concerns of participants with diabetic retinopathy
Themes / Sample quotes (of n=274)
Treatment / Since I’ve had my laser surgery I’m light sensitive. (FG5)
Socioemotional / You can wake up, and your sight is gone and that scares me to death. I mean, who wants that? (FG4)
I think that highlighted it and almost hit the…peak when I had my two beautiful daughters and I couldn’t see their faces. (Int2)
I’d hate to think I’d get to the point where I wasn’t allowed to drive... (FG6)
Well it worries me that the house is dirty that I miss dust and things. (FG7)
Obviously you don't really want to be thinking about going blind at the age of 30. It's a bit of a scary fact…It was very emotional. I was a bit like, just sat there going, what do I do? All I can do really is rely on the eye surgery going okay…Yeah very much at a loss of what to do 'cos obviously my eyes were in somebody else's hands (Int16).
Safety / I have to be careful. If I go shopping, and I walk into a shop that’s reasonably dark, I’ve got to be very careful where I walk. (Int9)
Table 5 – Convenience issues experienced by participants with diabetic retinopathy
Themes / Sample quotes (of n=133)
General limitations / It just takes a lot longer to do things…When you used to do things before you could do them really quick… (Int3)
There are times when you’ve had a blood vessel burst in your retina that it’s a real issue because you can’t do what you’re doing and you’ve got follow that up with doctors and it becomes a huge inconvenience (Int5)
Treatment / Because we live in the country and the ophthalmologists are in Melbourne…so it’s always meant a full day off work plus parking, transport…all of those things… I mean, it used to be the childcare costs when the kids were younger…And one could also add in there, because you’re having your eyes tested you need to have a driver. So somebody else has to take a day off work...so they need to use up their sick leave, so their time. (Int6)
Travel limitations / Like my husband hates parties…if he doesn’t want to I don’t have anybody….I can drive there during the day but to come home…(FG2)
We used to go out more often when I was driving...We don’t go out to socialise as much as before, we used to go away for two or three days…but now we don’t do them anymore. (Int11)
When you have to rely on public transport and go to areas where a 10 and 12 yr old child would want to go. Just a nightmare…It’s like my independence is absolutely taken away. (Int2)
Table 6 – Social issues experienced by participants with diabetic retinopathy
Themes / Sample quotes (of n=163)
Social isolation / It’s frustrating and…awkward, and you just don’t want to get out, that’s it. You just want to stay in, the cycle continues. (FG5)
My wife works…I might want to go somewhere and she says, “No I’m too tired”…I can’t drive, so you just sit there and watch the TV…I’ve been home all day, nobody to talk to, where can you go? And you sort of get drawn into yourself. (FG8)
I've lost a lot of social skills I used to have before, I used to talk to different types of people from all sorts of life…I was so busy. Yeah it's a bit of a loss actually, it keeps your spirits up talking to different types of people (Int3)
Personal
relationships / Sometimes you want to follow the recipe and make something, but you can’t do it. And you go to someone and ask, and they get angry too, they’re watching TV…You feel like an old lady. It strains on your family having to help you all the time. (FG8)
You don’t disclose things because you don’t want them…fussing over things and telling you what to do… (FG7)
My wife, she’s pregnant, even now again makes it a little bit harder...when we have our child, she’s going to be even more restricted to take me if I’ve got to do something, so I’m going to need to rely on more people. (Int11)
Roles / As a husband I haven’t provided for my kids as a father normally does, you know, he goes to work, he makes money so I haven’t done that. (Int11)
I also used to be a member of quite a few voluntary community committees, and again they meet in the evening, I just don’t do that anymore. (Int6)
Well social life, I guess I’m a CFA member and the onset of the retinopathy did mean that I lost my truck licence, because my eyes weren’t any good. (Int7)
Table 7 – Economic issues experienced by participants with diabetic retinopathy
Themes / Sample quotes (of n=128)
Work / I used to be a graphic designer. I can no longer see the eyes lashes on the portrait. 70% of the work I do…has ceased. Consequently, I’m retired. (FG2)
I have terrible trouble if someone calls me over and says “have a look at this”. I even I get as close as I can [to the screen] and I just can’t read it…I sort of pretend that I can see and work it out later. (FG7)
I’m still on Jobstart and who’s going to employ me as I’m nearly 65 now, and with one eye it makes it even worse (FG4)
I had two days off with the last bleed because I couldn’t spend the time trying to concentrate through the bleed to do my work. And I find that perhaps my work crew don’t support me with that one. Not enough. I don’t think they understand the issue. They can’t relate to it. (Int5)
If they’re doing PowerPoint presentations often they dim the light, and I may as well not read anything then. It’s probably a huge impact when I take that step back, because it’s every week we have some sort of meeting and there are readings to be done. (Int6)
When I look at the vacancies or promotional things or job descriptions and the job might involve a lot of reading, and/or a lot of computer work, then I just nowadays say “Well I’m not going to do that,” whereas previously that wouldn’t have been part of my criteria to look at a job. I just know that it would end up doubling the amount of time that I would have to spend to get tasks done. (Int6)
I haven’t worked for two years. I got made redundant. And I haven’t been able to find anything since…The newspaper’s where you can find jobs so I might be missing out there too. (Int8)
Finance / What I found awkward was that I was teaching, and suddenly I had only a pension income….So we went from, like a good income, to not very good at all. (FG3)
Expense of replacing glasses and seeing specialists and finding them as well, it’s a big problem. (Int4)
It did add up a little bit, overall I’d say I spent six to eight thousand dollars on it. I’d like it back now. (Int12)
I used to prune my roses at least two or three times a week. And weeding – I just have to pay someone to do it, so financially it sets you back a lot too. And when you’re not working either and you’re on a pension, it really changes your lifestyle a lot. (FG8)
We went on a tour to see platypuses...And I couldn’t see a single platypus. It was the biggest waste of money. (FG7)