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Table 4 Parents as frontline caregivers: Quotes from parents

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

Quote 1: “So curiosity got the better of us and we had a look at the website, to see if they gave a bit more info, but me, all I really saw was getting definitively sucked in, wrapped up in the world of the disease.”
Quote 2: “What actually scared me the most was that there was this association, an association of parents to deal with the disease, and I told myself no way am I going down that road, because for the minute she’s looking OK so I need to stop myself seeing the disease.”
Quote 3: “Basically, from then on, any move she makes, you're on the alert, because you're looking out for whether she is responding to the drugs, because she’s still too small to be able to tell you whether or not the treatment is effective. So, you know, with that, at the slightest little thing…”
Quote 4: (on psychological counselling) “More for his little brother, I would think— because we've no idea how all that might have affected him.”