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Table 2 Doubt: Quotes from parents

From: Why we need a process on breaking news of Juvenile Idiopathic Arthritis: a mixed methods study

Quote 1: “We’d taken him to see the doctor, where they told us she maybe had pain in her toe, that it was maybe caused by her shoes, a whole bunch of things… then as the days went by and she still wouldn’t walk, so we took her to the emergency ward, because the daycare centre people, they were worried too, and then even at the emergency ward it takes ages—ages and ages—we spent whole days there, all without result because at the end they said it was maybe irritable knee, or irritable hip, so we left it there, we thought that was it, and we went home thinking that was it and it should be over in the next six weeks.”

Quote 2: “We had already been down every road we could. In fact, every day I was back home for early afternoon, so I’d spend my afternoons scouring the internet, running searches on her symptoms and trying to find out what she might have. On top of that, I’ve got a friend who’s a test-lab technician, and another friend who’s a nurse.”

Quote 3: “Well, materializing the problem, seeing what it is, knowing how to manage it, learning how to handle it, it’s like… like it cancels out some of the fear, some of the uncertainty.”

Quote 4: “You have to understand the name they give it—the name is pretty obscure, there’s always going to be a scientific term for it, but what people need is a simple name that’s easy to understand, or at least explanations straight away for each of the terms, so, yeah, the French lesson that goes with it.”