Table 2

Selected quotations from interview transcripts for each insight

Patient quote: “She is not just my wife. She is my driver, she is a cook, she is the mother of my children. ..The closest person is your wife or your husband. After that coming nurse, doctor. But due to my operation, the type of illness I had, I put Dr in the first place, because she, look after… when I need a massage, at that hospital, they give me some massage … Macmillan help me to come, change my toilet and shower room, put a special chair in there, which the government cannot do”. (P3)Patient quote: “I'm a disabled person. I'm registered and I have a car. But I don't see myself as a disabled person […] you have to fight against your disease and against your illness”. (P3)
Life contextTime
Patient quote: “I think it was actually when they realised what was going on in the brain itself. I did feel it was all a bit of a whirlwind, but because the path was already laid out for me I didn't feel anxious in going down it. The thing I really struggled with wasn't necessarily medical, it was my family and the responsibility I felt for dragging them through this”. (P1)Patient quote: “After it happened, we were like completely living in the moment like even things looked differently physically. You know, you were noticing things that you didn't notice before, everything we were doing was just about the moment it wasn't about what was going to happen tomorrow or next year”. (P1)
LanguageRigour and emotion
Patient quote: “In terms of language the doctors use when talking to patients, I think it's not what they say, it is HOW they say it.(Patient at patient workshop)”Patient quote: “Very frequently doctors who seek excellence have difficulty with empathy.(patient at workshop)”
Physician quote: “You can't just go into there and say ‘Ok well this is how it is’ ) so what we try and do is enlighten them as to what our stance might be, what they can expect from us in terms of information, sort of, scan results or how things are going”. But, I also say to them, “Look, we will be guided by you, because not everybody wants all this information and we will be very much guided by the questions that you ask us.” (Clinician)Physician quote: “One of the most difficult things that I have to deal with, particularly with these low grade tumours is the idea that actually, probably the best thing for them is to not to do anything about their tumour at all. What we would call ‘watch and wait’. You have to say well we're not going gonna do anything about it. That is a really difficult message to get across and to explain why.” (Clinician)