Experiences of support subthemes with participant quotes
| Theme 5: experiences of support | Quote |
| Frustrations with limited support | ‘Literally all what I know about it is in a leaflet, that’s it. That’s all I knew about it.’ (P2) ‘As a parent, there’s key questions that I want answered, I want to know how long is she going to be like this, how long is it going to last, what can I do, will this just go away? I’ve realised that I’m not going to get answers to my questions because nobody knows. Then how am I supposed to reassure her when I don’t even know the answers myself?’ (P3) ‘When he was diagnosed, we got a leaflet. There was a leaflet on Charles Bonnet, which I looked into. That’s the only information I ever got. I never got anything else. It was down to me to do all the research then.’ (P6) |
| Specialist support services | ‘I spoke to Esme’s Umbrella, they told me it’s quite normal for people with CBS to see things.’ (P3) |
| Peer support | ‘The charity wanted to find someone she could speak to who’s got something similar so they can bounce ideas off each other, but the charity didn’t know anyone.’ (P3) |
| Desire to help others | ‘My advice to stop it is to change the atmosphere of where you are to suit you. Change the setting to suit your needs, to make sure you’re comfortable. If you’re uncomfortable, stressed or just really upset at that point in time, it increases how many times you see these hallucinations.’ (C6) ‘It would have been better if I’d known somebody who had it so we could chat about it and what strategies we use to help in the situation.’ (C2) ‘I was very keen to do this study just to help other children because it has been a scary time for her, especially when we didn’t know what was happening or what it was. It’s been reassuring for her just to know what this condition is and why she’s having these hallucinations. She was keen just to be able to help other children.’ (P4) |
CBS, Charles Bonnet syndrome.