Table 2 Examples of quotes expressed by the participants with hereditary retinal diseases and acquired retinal diseases

Activity limitation

Reading

Responses = 66

Participants = 22

“During the teenage years I could read large print. After that I lost the vision to read and I’ve only got light perception now”

Responses = 21

Participants =12

“That’s right, I just went and got an eye test and they said ‘you need glasses for reading’ because I can’t read properly so they did bifocals but it wasn’t until later that I was told that my eyesight was – something wrong with it”

Seeing in different light conditions

Responses = 55

Participants = 21

“I really can’t do much by myself, I need someone to help me around at night”

Responses = 9

Participants = 5

“I can still see at night with the headlights on but I don’t go out much at night.”

Driving

Responses = 42

Participants = 16

“The first manifestation was when I was driving I couldn’t see the white lines on the road and I was trying to share lanes with other car drivers”

Responses = 37

Participants =17

“I see nothing hardly but my left eye is good so - but with driving and that I find, you know, I’ve got to turn my head right around or else I don’t see what’s coming from my right”

Shopping

Responses = 49

Participants = 22

“I really do feel that my sight now is impacting on my independence so being able to go out and shop on my own is becoming extremely difficult to do”

Responses = 8

Participants = 7

“Another thing is when you go to the supermarket and you stand at the top of the aisle and look down you can’t read what the products are so you’ve got to walk up and down each one looking at the - but minor things, minor things for me.”

Emotional well-being

Feel frustrated

Responses = 45

Participants =15

“It’s frustrating because you want to do what everybody else can do and sometimes it’s the little things that becomes most frustrating”

Responses = 24

Participants = 9

“Probably the clinics are very busy and you’re there for quite a while sometimes. There’s days where I’m in there for three to four hours and it can get very frustrating. Just sitting around for three or four hours, it’s very frustrating and you get very tired and you just want to get in and get out.”

Feel anxious

Responses = 29

Participants = 13

“Being able to go places that I’m not familiar with on my own, I find that difficult until I get quite anxious about it now because I know how hard it is”

Responses =16

Participants =14

“I suppose any anxiety I have might just be that the injections don’t work as well as they were hoping them to because I have already had eight and originally they said normally with these injections you get about six to eight and then hopefully it’s working by then but with mine no shunts were really formed to drain my eye as they were hoping it would.”

Feel hopeful

Responses = 18

Participants = 5

“That wouldn’t worry me because I haven’t got much vision as it is. The only thing I can lose now is light perception and that’s it. I just hope I don’t lose that but that’s about all I can lose.”

Responses = 47

Participants =16

“Well I am hoping that when I do have the laser treatment, that I’ll notice a real difference and the strength of my glasses will be reduced. I just feel I will notice a difference. I won’t have those floaties and things.”

Feel shocked

Responses = 20

Participants =16

“It was frustrating because when they give you the diagnosis that you’ve got this eye condition and you’re going to go blind you’re in so much shock and you don’t really know what to do. What probably would have helped would have been one of the staff to say ‘look, here is a bunch of information.”

Responses = 22

Participants = 11

I got a terrible shock when I tried to read an eye chart because, as I say, looking with two eyes you can’t notice any difference.”

Social well-being

Interacting socially with people

Responses = 37

Participants = 20

If I’m out with people and in a bunch of people, even people I know, and they’re all chattering and I can’t see which one is which and I can’t see which one is talking to me and that, yes, I feel isolated.

Responses = 7

Participants = 6

“No, not because of that, because my friends come out home, we have a few drinks and then we go and cook tea, watch TV and go to bed.”

Strain in personal relationships

Responses = 5

Participants = 5

“I was 31 when I was actually diagnosed with RP and that occurred – my marriage had just broken up and I had two children who were seven and nine”

Responses = 0

Participants = 0

NA

Getting help and support from your family and friends

Responses = 109

Participants = 24

When I tried to explain it to my mother and my father – and of course my mother had RP – my father ordered me out of the house and told me he had enough of putting up with his wife for 50 years with RP and he didn’t want another person with RP in the family and told me to get out. No matter what I tried to do I could not make that side of my family understand.

Responses = 39

Participants = 20

“No, I’ve told them the full story and my family’s lovely, they’re confident for me and, yeah, they always reassure that everything will be okay and all that sort of stuff”

Being part of social activities

Responses = 26

Participants = 15

Well, yeah, it does because I just can’t do things with – like you’re left out with the parent groups at school and stuff because I can’t get to the coffees; I can’t do the activities everyone else does.

Responses = 20

Participants = 9

“I play in a thing called a fun band where we go around and play music at Helping Hand centres and aged care facilities and all of that.”

Health concerns

Not getting enough information from medical staff

Responses = 55

Participants = 26

“I had been told by a misinformed medical practitioner when I was in my teens that I would go blind and not be able to see within a few years so my life absolutely turned upside down. That person was wrong and I only found that out in my 30s”

Responses = 85

Participants = 32

“He said ‘if you had surgery on your eyes as they are now’ he said ‘you could go blind’ but he wouldn’t tell me why so - excuse the language but I was absolutely pissed off with him.”

Bumping into people or objects

Responses = 36

Participants = 20

“I’ve had a few trips. I fell down some stairs, just two or three stairs, and sprained both ankles”

Responses = 8

Participants = 6

“Well I mean I’ve fallen over several times walking down the street and I’ve broken my tooth, broken the front tooth.”

People not understanding your visual impairment

Responses = 32

Participants = 8

“Also people’s perception; people would accuse me of being drunk or on drugs and they didn’t understand.”

Responses = 2

Participants = 1

“I have some cousins and they’re concerned, they ask me how it happened and what treatment and stuff so some people understand but then other people – yeah, when you listen to other people’s problems you feel kind of a bit helpless so you don’t really want to ask.

Going blind

Responses = 39

Participants =16

“My biggest fear is that perhaps I will lose it all. I’ve been fighting all these years to retain my vision and my biggest fear is losing it all”

Responses = 24

Participants =14

“I was worried that I didn’t – that what they suggested that I have done, I definitely wanted to have the operation because I didn’t want to go blind in my eye and I thought that was most important, to get that fixed if I could”.

Symptoms

Night blindness

Responses = 68

Participants = 23

“I haven’t had any night vision for a long, long time.”

Responses = 0

Participants = 0

NA

Distorted vision

Responses = 0

Participants = 0

NA

Responses = 26

Participants =11

“No, it’s just a – just say if I’m looking at a straight line the line’s crooked. It’s not straight, it’s crooked out of my right eye, and I can’t see faces if I’m too far away from people”

Restricted field of vision

Responses = 46

Participants = 21

“Well put it this way, ever since I was young I’ve never had much field of vision; I’ve always had tunnel vision.”

Responses = 8

Participants = 2

“You know, sure I could lose my sight altogether with the retina peeling off but they never mentioned that this would affect my peripheral vision, which was as clear as a bell prior to that, and as far as I’m concerned that’s not on”

Distinguishing colours

Responses = 28

Participants = 20

“well, to some extent - but with colour vision I see dark colours as either black or dark blue or dark brown; I can’t differentiate between those colours”

Responses = 0

Participants = 0

NA

Mobility

Walking around unfamiliar areas

Responses = 34

Participants = 17

“Being able to go places that I’m not familiar with on my own, I find that difficult until I get quite anxious about it now because I know how hard it is”

Responses = 0

Participants = 0

NA

Crossing a street/road

Responses = 4

Participants = 4

“You know, crossing roads is very difficult.”

Responses = 5

Participants = 2

“I have to be careful crossing roads because I can’t see that far up the road to what’s coming”

Walking in crowded situations

Responses = 17

Participants = 10

“I found that I was finding it really difficult in shopping centres and I was starting to avoid going to those places”

Responses = 0

Participants = 0

NA

Using steps/stairs

Responses =13

Participants = 9

“I mean going down steps is the most difficult thing. Ramps are good but steps are not good”

Responses = 1

Participant = 1

“When I get off, you know, steps and kerbs and things it’s kind of not where it should be so I have to stop and kind of do it carefully and look where I’m going.”

Economic

Ability to find employment or get a new job

Responses = 73

Participants = 22

“I guess it affected my work because I can’t get fulltime work because people don’t want to employ visually impaired people,”

Responses = 0

Participants = 0

NA

Costs associated with treatment of the eye condition

Responses = 0

Participants = 0

NA

Responses = 4

Participants = 2

“No, well, I always basically have to pay – I just have to pay, like anything you get from the chemist really, the Warfarin, it’s like – I think it’s about 13 bucks a bottle or something. They’re just 50 little pills and I usually have to take at least two a day so I suppose that adds up, yeah.”

Not being able to work

Responses = 54

Participants = 20

“I was a nurse and then I was a disability support worker in a mental institution, like in a – what would you call it now – community houses I think they are. I was 2IC in a community house when my vision started to deteriorate so I just - actually I was lucky enough to be able to get a package and leave.”

Responses = 9

Participants = 5

“Well actually as my eyes are now I wouldn’t be able to do what I used to do years ago. I wouldn’t be able to do that job now, it’d be too dangerous.”

Financial impact from loss of income

Responses = 12

Participants = 8

“I was earning a very good income and that was cut completely. Well now, as a remedial massage therapist I do have an income but it’s still very small”

Responses = 5

Participants = 3

I suppose it has because the work I do, I’m on a casual rate which means when I have to go to hospital I actually don’t get paid at all when I’m not there.

Convenience

Having to do positioning after surgery

Responses = 0

Participants = 0

NA

Responses = 42

Participants = 15

“Well after you had the surgery you’ve got to lay on your belly for two weeks and that is absolute murder.”

Having to rely on others for help

Responses =37

Participants = 18

“Not at all. Well, yes, because I’ve got to call on my - I have two children and I’ve got to call on them to read my mail to me and to do some computer work for me sometimes, little things like that”

Responses = 8

Participants = 8

“I think the inconvenience was mostly the need for regular visits for anti-VEGF injections because I don’t like driving right after an injection because I’ve got one eye patched and it’s pretty sore and bloodshot and so somebody else goes with me and that – you know, you’re doing that every six weeks for a while and so it’s an inconvenience, not only to me but to somebody else.”

Having to plan and organize for the things beforehand

Responses = 8

Participants = 5

“It’s very hard to be spontaneous with anything. I can’t go down to a far place and have a swim, that would be too big a project now, whereas if I could drive that’s no problem. For me to go to the beach I’ve got to plan ahead, probably going to be a two day thing, so it’s that lack of ability to participate in something spontaneously.”

Responses = 0

Participants = 0

NA

The amount of time needed when attending the eye appointment

Responses = 2

Participants = 1

“It was a morning appointment and I felt like I was there all morning, like it was hours.”

Responses = 8

Participants = 7

“Just sitting around for three or four hours, it’s very frustrating and you get very tired and you just want to get in and get out”

Coping

Trying to be positive

Responses = 28

Participants = 15

“you know, being blind and alive is better than being young and dead so, no, I’m quite strong about that and I always think on the positive”

Responses = 12

Participants = 12

Yes, I probably will then but the way I am now I’m not frightened of anything. You’ve just got to think positive. You start thinking negative you’ll just go backwards.

Thinking that there are people much worse than you

Responses = 8

Participants = 8

“When I go to like to the Blind society and stuff there’s always people so much worse you feel bad complaining”

Responses = 7

Participants = 6

“Not until you go down there and see them and there’s a lot of people worse than me”

Attributing the eye condition to ageing

Responses = 0

Participants = 0

NA

Responses = 15

Participants = 12

“My eyes have deteriorated more through age because I’ve just turned 60 so your eyesight is not as sharp.”

Accepting the eye condition

Responses = 26

Participants = 11

“Cry and then pull myself up by my socks and get on with it”

Responses = 36

Participants = 21

“Well I didn’t feel anything. I thought ‘oh well, I’ve been told that. That’s what’s wrong. Well, I’ve just got to accept it’. You can’t say ‘oh no, I don’t want it’. It’s not going to go away”