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Table 3 Carers repeated issues and focal themes

From: As the bell tolls: a foundation study on pancreatic cancer consumer's research priorities

Recurring issue Focal theme
"With the diagnosis, I wish there was some sort of way they could have done it more quickly"
"From my wife's experience, it was 12 months or even longer.... We were backwards and forwards to doctors. It was only in the latter stages that it was diagnosed"
"From my experience as well, that it was the detection ... and the diagnosis which was delayed which meant the disease had progressed"
"I can only echo what the others have said. The issue, certainly in my mother's case, was no detection... it was only when the cancer had spread"
"It just seems that early detection is the really only useful thing that can help in saving lives"
"I totally agree with everything that everyone has said today. Early detection.... if that can all be brought in to help other people"
Early detection
"When the actual first diagnosis was given to us, we had an unfortunate experience as it was rather brutal. My wife was told to get her affairs in order. That's not treating the individual as a whole person. We just felt very badly let down"
"I didn't feel that the manner of delivery was particularly warm. It's almost like some of the specialists are so experienced with what they're doing that they lose sight of the fact that for the person who's been diagnosed, it's the first time they've ever heard these words. Very often what's been told is there is actually nothing that can be done. Maybe there could be a set of words and communication could be improved a little bit?"
"Anything we mentioned was virtually cast aside, almost contemptuously... The prognosis may be dismal, but my wife was entitled to a lot more than that. The human spirit demands more than that"
"I think guidelines would be helpful there, taking into account the sensitivity of the individual"
"(The) ways that the doctors come out and tell you. There have to be some guidelines that they need to go by in a situation like this"
"I think you reach a point where you can't read anymore and you can't search the internet anymore and you just need somebody to sit next to you and talk to you and explain things to you"
"That conversation regarding pancreatic cancer is never going to be a nice one and we have to avoid shooting the messenger there. Maybe there could be some protocol that specialists follow a little more thoroughly. No-one is ever going to want to hear it so it's never going to be well received"
Clinical communication
"I see a priority in education/awareness of pancreatic cancer because I've spoken to people who don't even know what it is or where it is"
"People have got to know what pancreatic cancer is and what some of the symptoms are, and I think we all acknowledge they are very vague, but the sharpening of that focus on "this could be" or "you need to". It's only when we know about something that we'll follow up on it"
"Pancreatic cancer may have been very familiar for an oncologist, but for the individual it isn't"
"When my mum's diagnosis came out, I was very much in the dark. I didn't get any information"
Public awareness
"When my father was diagnosed, we had some trouble making a decision about whether to just go with chemotherapy or the surgical option. We were having difficulty trying to ascertain which the best way to go was and we couldn't find a lot of information on what had a better outcome or did surgery exacerbate things? So this was another issue that came up with our family... treatment options"
"Less painful and distressing treatment"
"I know everything is hypothetical, but you have your operation and go through all of that, but there are really not enough options for you to make decisions about what you will or won't do"
Treatment options