Table 3.

Uncertainty domains and subdomains

Domain	Subdomain	Explanation	N	Illustrative Quotes
Diagnosis, cause, symptoms, and prognosis			20
	Diagnosis	Unsure whether diagnosis is correct	6	“She’s got Oligo JIA but yesterday, [at clinic] (…), they actually changed it to Poly. I think the whole uncertainty thing comes in. Every time we go somewhere it changes slightly.”
	Cause	Uncertainty around the cause of JIA	9	“So I was blaming myself for a long time for her illness. That [there] was something I could have possibly done better or differently or not eaten.”
	Symptom Interpretation	Interpreting physical sensations, distinguishing symptoms from normal child development and other conditions, interpreting symptoms prior to diagnosis	19	“In retrospect she had a little episode with a joint in her foot (…) a few months before with her foot where it had swollen up but we thought she’d injured herself and didn’t do anything about that really, just waited for it to go away.” “Is he having tantrums because something’s hurting him and he can’t communicate it? Or is he having tantrums because he’s a toddler and that’s what they do? Or because he’s got a cold and it’s nothing to do with arthritis?”
	Interpretation of health status	Judging how well child is	12	“Sometimes she’ll be reluctant to tell us, I’ll ask are you sore? Have you got a sore or something? No. I’m all good. (…) So I say, you’ll tell daddy if you’re sore eh? No. And so it can be a little bit difficult to say is something going on or not.”
	Prognosis	Unsure of future progression of the disease	20	“And I’m scared will it extend further, is it somewhere else that we don’t know about (…) I’m scared of what the future brings, (…) will he ever outgrow it, is it going to spread, (…)”
Medical management			20
	Treatment	Uncertainty over treatment regime: necessity, changes to medication, side effects	20	“I don’t know how long this one is going to work for and indeed when this stops working I don’t know if there are any other options. I don’t know what the next stage would be.” “If he’s been in remission for at least a year they will start talking about coming off and when you come off you’re back in the wilderness and then you don’t know if it’s going to come back.”
	Trust in doctor	Medical professional knowledge and ability to help with condition. Doctors’ uncertainty around initial diagnosis and prognosis	13	“I have to trust in the consultant who’s looking after him and the nurse practitioner because they know what they’re doing and I don’t and I have to put all my trust in them, is how I see it because I’m not an expert and they are and I don’t particularly like that I have to say because you don’t always know or feel, what I’m saying is you don’t always know if some things are done because it’s cost effective rather than the best thing.” “But yeah at the same time I’ve come to realise all these years that even the consultants they don’t really know. (…) they give you something and some kids start on something and then three months down the line they realise it doesn’t work and then they have to start something else.”
	Uncertainty in health services and support	Gaps in support, unreliable services, uncertainty around navigating different services	11	“The part that was also overwhelming is to understand how the NHS is working and the different parts of it.” “The emotional side of it and coping with injections and needle phobias and how you manage being different and all that kind of stuff, I don’t think there’s nearly enough done about that.”
	Transitioning to adult care	Uncertainty around child transitioning to adult care	2	“The other concern as well is of course that she will need to be, have some sort of transitional treatment by, there is a transition consultant who deals with adolescents. So that would be good to, we don’t know how to get into that (…)”
Impact			16
	Impact on child	Impact on child’s future including emotional wellbeing, social functioning, and uncertainty around impact of JIA on child’s personality and character.	15	“I wonder how she will accept the disease as she comes to know more about it and what her reaction to the disease will be. (…) she’s grown up with it, it’s all she’s known, but as she becomes older I just wonder if she’s bitter or resentful.” “Yeah, I worry that he won’t be able to make friends in the same way and he’ll be ostracised because of it because he’s a boy and boys do sport.”
	Forward planning	Ability to plan for short‐ and long‐term events	6	“We’ve got two weeks holiday booked (…) in the summer and we cannot plan, there’s nothing you can plan, (…) we don’t know whether we’ll have to find local hospitals or there’ll be medication down there and there’s, it just does affect everything.”
	Impact on family members	Impact on family as a whole and other children	9	“But balancing the needs of a child with what is I guess a long‐term unpredictable condition with your other child or children and managing that… It is [settled] now and that’s, but it still has a strain on us as a family I think.”
Parenting uncertainty			20
	Coping	Ability to cope physically and emotionally with demands, and feelings of powerlessness	12	“I’m assuming I’ll find a way to cope. I try not to think about not coping because then I might not cope.” “You love your daughter, very caring, very close bond and then when you see her in pain you feel powerless about that. So powerlessness I think is one of the things that I struggle with. You think actually, I can, you can do things to make her more comfortable and you still feel this level of powerlessness.”
	Managing child's JIA	Uncertainty around how best to manage child’s JIA including symptom management, managing medication, child’s behaviour and emotional wellbeing, managing JIA into the future including child’s medication self‐management	12	“You don’t want to be overprotective, but you want to make sure you care for her, given her JIA, and at the same time you’re parenting and trying to set boundaries. And, so definitely I think overall your parenting is influenced.” “On the one hand I don’t want to allow her to be rude and uncooperative but on the other hand I don’t want to discipline her for those things if it’s a manifestation of her trying to express how she’s feeling if she’s feeling sick or she’s feeling tired or in pain.”
	Role requirements	Unsure of role as parent and carer and role expectations	4	“I think my role as a mum has changed into more of a medical role sometimes. I don’t want her to resent me as she gets older for being the one that’s always holding her down for things. That’s my main worry with my role with her.”
	Making decisions about child's care	Uncertainty when making decisions about child’s care	13	“Trying to make the best decisions I think on her behalf I think it would be easier if you’re making the decision for yourself. It’s just the responsibility of doing the right thing and safeguarding her emotional wellbeing as well as her physical wellbeing.”
Awareness of JIA			19
	Social awareness	Understanding among family, friends, and others of the condition and support received, invisibility of condition	18	“A lot of people still don’t understand it, because we still get the ‘What, children get arthritis? It cannot be, are you sure? It’s an old people thing.” “School again, it’s a bit like talking to your family, it’s quickly brushed under the carpet, they don’t really want to know, but they don’t understand.”
	Gaps in information	Areas parents feel are missing from JIA information, lack of awareness prior to diagnosis	11	“I had to find out about disability benefits and fight very hard for it and all the other things that I’m entitled to. You don’t get given that information you have to find it for yourself really.” “Perhaps there have been times when I would have liked more information and I didn’t accept it. But I see, I get now why there isn’t more out there, because it just, they can’t tell you facts and certainties because there aren’t many anyway.”
	Confidence in information about JIA	How confident parents feel about the information they receive	4	“There’s also some misinformation and there’s also a lot of American information, which doesn’t necessarily apply to the treatments that we have over here. So, I think you can go a bit wrong with some of the Googling and I think I did at the beginning, trying desperately to understand it all.”

JIA, juvenile idiopathic arthritis.