Table 1

Emerging themes and example quotes

DomainEmerging themesQuotes
EducationIncrease breast awareness
Use modern technologies and media
Age-relevant use of media/technologies
Appropriate level of information provision
‘obviously I have heard about (screening) but I do not know much about …’
‘everyone talks about a lump’
‘it wasn’t a lump it was like a crease in the skin’
‘you can put symptoms….into Google’
‘the young girls …. have much bigger busts. They should be able to check’
‘it’s got to be with the children, we’ve got to get in there early’
‘what age truly is too young? They all need to know about this’
Risk and preventionCause of breast cancer
Modifiable risk factors
Local (non-systemic) factors (implants/underwires)
Role of diet and nutrition
‘we were all completely different….people say ‘oh it’s HRT’…(but) ….it doesn’t seem to have any rhyme or reason’
‘you get all this information and it’s too much. Where do you draw the line!’
‘I’ve got concerns with the genetic side and family as well. I do have a mutation, it’s a random variant it’s not a recognised one, it is connected to the BRCA genes’
‘you read conflicting things all the time’
ScreeningBarriers to screening
‘Hard-to-reach’ groups
Improved accuracy
Screening blood test
Improved understanding of genetics
‘I did do years and years ago but then I just found it really inconvenient at work’
‘if people are not interested they are not interested’
‘if you had a pop up in the car park…if you made it fun’
‘I was in shock the first time but then when I knew what was coming I was a bit better about it’
‘a lot of people do find a mammogram is so painful’
‘something might take the place of mammograms in the future, mightn’t it’
‘perhaps in the future they might be able to determine by tests that we haven’t even thought about yet’
‘I think that’s a lovely alternative, it doesn’t hurt much, giving a blood sample’
‘I’ve got concerns … I do have a mutation, it’s a random variant it’s not a recognised one’
‘there are genetic things that we don’t know’
DiagnosisInformation retention and decision-making
Impact of treatment delay
Expediency of test results
‘I just did not hear a thing’
‘I drove through a red light …. I just could not concentrate’
‘you are just thinking ‘am I going to die’. I found (reconstruction conversation) a lot to take in’
‘I was not really quite prepared on how radical chemotherapy was’
‘it’s just… waiting for the histology department … to give out the results’
TreatmentMinimise re-operation
Maintaining arm mobility
Long-term reconstruction outcomes
Short-term and long-term side effect drugs
‘if it doesn’t work this time you’ll have to have a mastectomy’
‘I was not really quite prepared on how radical chemotherapy was. Absolutely heart breaking’
‘I did not realise the emotional effects of the side effects of treatment’
‘you need it (lymphoedema) dealing with…. you have suffered a lot with yours’
‘this other lady in work she wears (lymphoedema compression sleeve) all the time’
‘I have an issue with the tightness… of your muscle’
‘I think it’s more the way it feels…it looks brilliant but it kind of, it’s heavy and it’s different’
‘my granddaughter (was) sitting on my knee and her head bounces back on the false one (implant reconstruction)… and she turns round, ‘well I don’t know what that was, Grandma!’’
‘mine (reconstruction) feel very alien to me’
‘I was waking up every hour … absolutely drenched’
‘you just can’t function with the tablets’
Psychological aspectsCognitive techniques
Role of
  • Allied professionals

  • Lay support groups

Individualised (technologically age-relevant) support
‘It does not get out of your head completely no matter what. Where you have got your nerves and fear and each time you go for a check’
‘it was the fear of telling people. You have actually got to vocalise it’
‘we all used to sort of like be in the waiting room discussing ours and yours and all this sort of stuff’
‘a bit more use could be made of technology’
‘younger people, they’d be more used to receiving information in that way than perhaps we are’