Table 2 Persistence of symptoms – examples of families accounts

Families developed ‘candidate explanations’

Prior to an initial visit to health professionals, families reported engaging in cycles of noticing, constructing an explanation and taking action

Middle of January he started complaining about his legs hurting, well his leg in-particular but there was nothing to see so it was just, we were just kind of brushing it off as growing pains and whatever else and we thought it was a reaction, because [his] sibling had an operation we thought maybe he wanted a bit of attention and then there were one day when he was playing up with going to school and stuff like that “I don’t want to go to school, I don’t want to go to school” and then one day just out of the blue I was whipping his pyjama bottoms off to get him changed for school I was like “Oh blimey your knee it is really swollen up” … this was about 2 weeks I think of complaining his leg was swollen, sore, before we could actually see anything. … Yeah I even bought him some cream, some normal body lotion and said “Oh this is some magic cream it’s going to make you better”. And I think it was literally the next day his knee swelled up and I thought “Oh NO here we are brushing it to one side and there is something really wrong”. (Mother: P10, age 5–13 weeks to first PRh MDT visit, Oligoarticular^a)

No-real-concern-at-this-point trajectory

On visiting a health professional, some families reported they were told further investigation is not needed at this time

He just woke up one morning with a big swollen arm and my daughter thought he’d fallen out the bed or something and he she took him to the doctors [GP] and all they said they kept saying “it was just inflamed” and they were just giving him loads of different anti-inflammatory and things … She was at the doctors [GP] every week, 8 weeks it was … They were just saying “that [his arm] was inflamed, he might have knocked it” or whatever but then because he couldn’t use it, it just went stiff and it was all swollen … it was a case of “Oh he’s banged it” and “It’s just inflammation” they put him on Ibuprofen and calpol and by the time he did get here [PRh MDT] he couldn’t move. (Grandmother: P28, age 9–32 weeks to first PRh MDT visit, Oligoarticular)

Further-investigation-is-required trajectory

As symptoms continue, escalate, or increase parents engage in repeat visits and referrals to both primary and secondary care

… he walked round ‘funny’ for a day, he walked round with his neck back so we got them to check it out … so we took him straight to [Out of Hours Service] they checked him out … and then a few days later his neck was fine but then he was struggling with his arms … so again we ended up back at [Out of Hours Service] erm and again they checked him over and they just thought it was post virus stiffness erm but then on the day that I took him to Mum’s Group and “he was really not right and he wouldn’t stand up … so I took him straight away to the actual doctors … and he sent us straight away to casualty … straight away he was on calpol erm to get his fever down … and he had no rash at that point but then rashes over the next couple of days, they kept us in overnight to watch him didn’t they. … the doctors put that down to any kind of viral rash they weren’t sure at that point what it was erm … A lot of the doctors at the time were just saying “its post viral, he’s had a cold and this is the virus coming out” … So then over the next few weeks we were to-ing and fro-ing because he just wasn’t getting any better, they gave us erm open access to the hospital … They thought he might have had an infection in his joints, so they x-rayed him and scanned him … they just kept on saying “No its just part of his cold, he’s just got a virus and this is what part of it is and it’ll go” and all this kind of stuff. … And this, this carried on and we kept on going in and out so every couple of days and he didn’t seem to be getting any better erm the rashes were on his body still and they were coming round more of his joints like his elbows, his knees and erm basically parts of his legs, sometimes on his back as well erm and there was like slightly raised redness on there erm so again we went back in to hospital with him, we had the open access and they came back and virtually said to us, “Well look its this virus” (Mother & Father: P11, age 2–10 weeks to first PRh MDT visit, Systemic)