Diagnosis journey subthemes with participant quotes
| Theme 1: diagnosis journey | Quote |
| Parents’ awareness | ‘I didn’t understand what it meant. It’s almost as if it was a myth. That’s the way I viewed it when I first started researching it. I thought, is this actually a thing?’ (P1) |
| Parents’ dismissal of symptoms | ‘I had Christmas wrapping on the floor and she said she could see a face in the wrapping paper. I thought she was imagining things.’ (P2) ‘She’d say, Mummy, I’ve seen a dog and it was in the air. I didn’t believe her, because she was the age she was.’ (P5) |
| Clinician awareness | ‘The doctor said you don’t normally get hallucinations in sight loss and that you only normally get that in people with Alzheimer’s. I think that’s shocking that doctors in their own fields don’t know it. That’s quite sad.’ (P6) ‘The optometrist that was seeing her had never heard of it in children. She’d heard of it in adults but had never heard of it before in children.’ (P4) |
| Diagnostic uncertainty | ‘Her optometrist had heard of it, he thought it was maybe CBS but he didn’t want to say because he wasn’t 100 per cent sure.’ (P2) |
| Parents’ research | ‘I’d come across Charles Bonnet syndrome when I was Googling it. I was thinking this could be related to his eyes because it would make sense. Reaching out to other people within the community, they have said the same thing.’ (P1) |
| Receiving an accurate diagnosis | ‘When the doctor told me a bit more about it and then I investigated a little bit more about it, I kind of felt it’s like a routine now, so I kind of expect it.’ (C2) |
CBS, Charles Bonnet syndrome.