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Table 5 Medical support, needed but lost: Quotes from parents

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

Quote 1: “I do think, though, that a diagnosis, to get it right, you have to ask the right questions, and you have to know how to really listen to you—and a doctor that doesn’t know how to do that, to really listen, shouldn’t be a doctor, he should do something else, anything else, just not doctor—I think that at the end of the day, the diagnosis hinges on you as the patient, you know your body, if A says he’s in pain now, then they should’ve listened to us.”

Quote 2: “Online you’ve got the whole gamut, every extreme—you find people who tell you yes, you can beat it, that it’s over soon enough, or rather not soon enough, that you can battle through it, and then you find people who’ve been through nothing but heartbreak and anguish because of the disease, heartbroken for their child, and… you wonder how you're going to be on that scale.”