In total, thirteen AEUs and five of their close contacts were approached for interviews and agreed to take part. One person withdrew due to time constraints. All close contacts were spouses or partners to AEUs. In total, between April and July 2022, twelve AEUs and five close contacts were interviewed, for on average 31 min (range 20–59 min). See Table 1 for participant characteristics.

Table 1 Participant demographics

Four themes were identified across groups: (1) Impact on day-to-day life; (2) Impact on psychological and emotional wellbeing; (3) Challenges with treatment experiences; (4) Worries about the future (Fig. 1).

Fig.1

Depiction of the four main themes

Impact on day-to-day life

Being an AEU typically negatively impacts on day-to-day living, although the extent to which this bothers people can vary. Just one participant, who suffered a long-standing medical condition prior to having his eye removed, reported only benefits for his daily life from getting a prosthetic eye. In most interviews, having to regain confidence is frequently mentioned. The eye loss can cause facial disfigurement as well as impaired vision:

I mean it’s still the eye loss because if I’m not in a familiar environment I still bang into things. I used to fall down a lot initially which is really embarrassing because it makes you look like you’re drunk and you’re not drunk but you’re falling because you’re having to adjust to the fact you've only got like single vision. [Female AEU, 51, accident].

Apart from worrying about other people’s judgement, some participants described how even simple everyday tasks like putting toothpaste on a brush or lining a screwdriver up with a screw could be a struggle:

And if I’m doing something that’s really intricate, I start shaking like me nerves have gone, it’s, I tremble because there’s that much concentration needed to try and solve it. [Male AEU, 61, accident].

Family members describe supporting AEUs as best they can with everyday activities such as driving, tidying up, and cooking:

Whether I’ve been as supportive as she would have liked you would have to ask her but I certainly do a lot, I’ve always done a lot of the cooking. We’ve always been a good team and that is still the case. [Male CC, 53].

Many AEUs described reduced social activities including avoiding crowded situations, being reluctant to make new friends and feeling self-conscious: “you’re always conscious people are staring and looking” [Male AEU, 63, accident]. This can have a big impact on partners as well: “Socially we don’t, we don’t go out, we don’t socialise with friends or anything since he lost his eye” [Female CC, 51].

Others admitted to losing their confidence in social situations, due to their loss of vision, their altered appearance, and relying on family members or friends for practical and emotional support. Social decline seemed most prevalent closer to eye loss: “After my accident, I was home a lot and it just really got me down” [Male AEU, 32, accident]. For some AEUs it had taken several years to feel more socially confident:

First 5, 6, 7 years was really a bit of a strain…if you were invited anywhere, you didn’t want to be seen, you sort of become a bit of a hermit [Male AEU, 63, accident].

To some extent this appeared linked to reduced ability to drive:

I go out because I have an appointment or I need to go to hospital or to see the dentist, like that, the important things I will do, I will go out but now…But not socially? No. [Male AEU, 45, medical condition].

Yet, AEUs expressed determination to carry on with daily life as best they could: “I just decided there’s nothing I can do, it’s not going to come back, I’ve lost it, and I just get on with it” [Male AEU, 69, accident], with many focusing on positive thoughts:

I have to be confident, that’s the thing, as confident as I possibly can be anyway, but yeah, it’s just, it’s all about trying, I’m trying to get on with life in general really so yeah, you have to be confident. And show, basically try to show as little emotion as possible around, you know, I’m not going to go around moping that I had a ridiculous accident sort of 4/5 years ago, but you’ve just got to get on with it. [Male AEU, 61, accident].

At the time of eye loss AEUs reported having extended time off work to recover. For some AEUs, returning to their work was impossible, especially if their job included driving, meaning they had to try and establish another career:

The accident with my eye has rendered me unable to do the work I was doing…we’re just plodding on now trying to make a living as best we can, doing whatever I can do [Male AEU, 61, accident].

Impact on psychological and emotional wellbeing

After eye removal, many AEUs suffered from anxiety, depression, post-traumatic stress disorder and anxiety-induced insomnia. In some cases, psychological problems were severe and lasted for years, with both AEUs and some of their family members seeking professional mental health support. Family members sometimes felt more formal support was necessary: “[AEU] has had a couple of counselling sessions…he hasn’t seen anybody, it’s just literally telephone calls, so I think he needs to sit with somebody” [Female CC, 28].

AEUs reported they struggled to adjust to their changed appearance. Some avoided looking in the mirror. Even if the look of their eye had generally improved over time, many were still unhappy with their appearance:

Your life is immediately changed! I still think it looks dreadful but if you’d seen pictures of it initially, obviously it was like many times worse [Female AEU, 51, accident].

A family member described how the AEU’s lack of confidence prevents them from taking out their eye when it gets uncomfortable, even around their family:

When he’s tired and he wants to take it out, he’s still a bit… He doesn’t like the idea of not having an eye in. [Female CC, 60].

AEUs who lost their eye due to trauma as adults reported worse mental health issues. One AEU said the only thing that helped her move on was the improvement of her artificial eye: “Realising things are actually moving on…I felt a lot better.” [Male AEU, 32, accident]. But AEUs who lost their eye at a young age said they were able to lead ‘normal’ life because they had never known any different: “I’ve had the same eye since I was 6 months old…this is me” [Female AEU, 41, cancer].

While not all family members reported experiencing psychological or emotional issues themselves, some did struggle with feelings of sadness and frustration when their relative lost an eye. One spouse said: “He’s just not, he’s not same person that he were, he’s really not, really not” [Female CC, 51]. At times these issues were related to AEUs interlinked cognitive issues:

Because she’s had a brain injury at the same time as the kick, she loses her memory. Her short-term memory has changed and some of the stuff that I’d assumed she’d remember that she did years ago, she doesn’t always remember. So I find that difficult because all those memories that we shared she can’t remember I find it difficult, and I find that really odd. [Male CC, 53].

Challenges with treatment experiences

In discussing AEUs treatment experiences, many expressed having experienced issues due to fragmentation of care, with a lack of collaboration between different service providers:

They were completely separate entities fighting against each other…rather than working together for the best outcome. [Male CC, 53].

Building a trusted relationship with healthcare providers was found important, with one participant describing a change in treating consultant made her feel vulnerable:

It’s building relationships all over again. I did struggle with that a bit really because I was only ever used to one consultant so I was very conscious about it, so again, being in that environment and showing people who there’s only been a handful in my life that has seen me without it. [Female AEU, 41, cancer].

One participant describes a particularly bad administrative failure resulted in losing eyes kept on file:

They kept it in my records, this eye, so that every time they could send it, but someone must have decided in the office that the files were all too big with all the eyes in so they took all the eyes out and threw them away which for me was a completely disaster, I was totally gutted. [Female AEU, 37, medical condition].

Participants found the wait times for hand-painted eyes unacceptably long. Many AEUs described having to wait for five to nine months, having several reiterations before receiving their first artificial eye, and wait times could also be long for replacement eyes. A long-standing AEU describes challenges around losing his prosthetic eye and having to wear an eye patch:

Probably through fault of my own where I’ve had a couple of accidents where I’ve actually lost them and then there’s just the time scape, you know, between… Well, one was pushing 3½ months without a false eye which was, you know, wearing a patch. Because you’ve had it so long and then people don’t know about your accident, they tend to think, oh I had no idea and then obviously you’re wearing an eye patch. [Male AEU, 63, accident].

Long wait times were found to negatively affect AEUs emotional wellbeing and QoL and could impact on important live events:

But we were meant to go away to Mexico in the September of 2021 for our honeymoon and I was like, oh my God he’s not going to get his eye, it’s going to be awful. [Female CC, 28].

Regarding the appearance of a prosthetic eye, AEUs frequently mentioned the importance of a good, realistic colour match to the other eye. A well-centred eye was also found critical to AEUs satisfaction:

Having it centred is actually more important than the colour match… But I would take a centred one that’s the right size over a right colour one that’s the wrong size or it’s not centred. Because those last two things if they’re wrong, they start to increase the ability of other people to recognize that it’s not a real eye whereas when all those three things are right, people that don’t know me don’t realize it’s an artificial eye and that’s like the holy grail of what you’re trying to achieve. [Female AEU, 51, accident].

Family members similarly expressed negative consequences of a poor fit or colour-match. Family members discussed challenges in supporting their AEU relative emotionally while also adapting to their changed appearance: “I just felt sick, it just scared me” [Female CC, 60] and trying to protect them from unwanted attention:

I catch myself getting really annoyed at people if they give her a double take… I want to slap them…if there's something not quite right, if it is not centred or something that’ll make people stare and I get offended on her behalf. [Male CC, 53].

Families felt they received little support:

It’s like if you lose an arm you, you get rehabilitation, or if you have a bad break or things like that, and literally he was sent home day after, so he had his accident and he went to theatre they had to remove his eye and next morning he got discharged with paracetamol and just left…we just got left. [Female CC, 51].

Worries about the future

While participants were experienced AEUs, worries about the future came up regularly in the interviews. With one eye removed, increased vulnerability of the remaining functioning eye was concerning. A participant described worries about her sight issues progressing, causing full blindness:

I’m still really frightened about my other eye because if anything happens to it, as far as I’m concerned my life is over and I mean that because if anything happens to this eye I’ll be completely blind and I just won’t want to live anymore to be honest I just I wouldn’t. [Female AEU, 51, accident].

Some participants were concerned about having to undergo further treatment, and the associated health risks:

I honestly don’t know what’s going to happen because I don’t want any more general anaesthetics and I can’t just keep having general anaesthetics for the rest of my life, they’re quite, you know there is risk associated with them. [Female AEU, 51, accident].

Others mentioned worries about the availability of effective treatment options should issues recur:

Now it’s a bit of a worry that if it droops again in the future whether I can actually have it [treatment] done again because it’s not healed as well as what it did last time. They won’t probably be able to correct it as well. [Female AEU, 37, medical condition].

Costs associated with treatment which would not be covered through the National Health Service, such as non-permanent facial fillers, could be concerning:

I’ve got to try and decide what I’m going to do about that because my medical insurance won’t pay for it and it’s expensive. [Female AEU, 51, accident].