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Table 4 Description of themes and subthemes with example quotations for TREKK Parent Advisory Group discussion

From: Procedural pain in children: a qualitative study of caregiver experiences and information needs

Theme and sub-themes Example of statements
Applicability in pediatric and adult healthcare settings “Parents are dealing with [communication challenges] in any situation, whether we are at our doctor’s or we’re at the ED or whether we are at the Children’s ED...” [P5].
Differences in care received in general and rural healthcare settings “The doctor actually told me that we shouldn’t have come [to a general ED], because they’re just not trained. And then, if a kid was actually really sick, that they would just send him by ambulance to the Children’s Hospital. That was eye opening” [P2]
KT tools facilitate communication with healthcare providers “In my experience, once we established ourselves as being credible [parents], that we’re trying to be part of the solution here and not be part of the problem – because quite a few times you can come off as being a little pushy or whatever – but once we establish that we are here to help. I’m not trying to tell you how to do your job or anything like that. Once it gets past that barrier, then I find you get better communication. A lot of things go a lot smoother, just because you’ve established that credibility” [P2].
KT tool needs to be mindful of time and resource constraints in EDs “…There would have to be options, but not so many options that we’re overwhelming the nurses. Because, I mean let’s face it. How many questions are these men and women getting anyway? Let’s not overwhelm their jobs… I want to see both sides with some sort of happy medium, if that’s possible. ‘Cause you know, let’s not piss off the industry, but let’s help the parents” [P5].
KT tool needs to be available in more than one format “It’s audience as well, right? You have to look at demographics too, and who’s bringing the people in. So, when you’re looking at anybody below the age of – I don’t know, my mom’s 75, and she’s on the smart phone all the time. But that could be a simple question that’s asked, right? Like, “what’s your preference?”” [P6].
Education should be provided during a waiting period “The reality is, you’re gonna be waiting [in the ED]. That’s a given. So give people something to make that wait a little bit more useful” [P2].
“And at that time, they could be educating their kids and themselves” [P3].
Waiting period gives caregivers time to think about what they have learned and prepare questions “Then [parents are] thinking, you’re going to be asked [about the procedure]. And now you’ve got time to think about it” [P1].
Procedural pain menu “It might be good to have some sort of… cue, or something that I could think about what techniques would work for my particular child who is there. I mean, you have, usually, a long time to wait when you go. So it might be a good time to spend that time coming up with things that would be particularly helpful for my children… And maybe spending that time while you’re waiting with a menus or checking off what would work for your kid might be helpful to communicate to the healthcare providers what your particular child might want” [P6].
Colouring book “In the kid setting, how hard would it be to come up with, say, a colouring book of someone going to get their needle or an IV put in. And then maybe a few lines on each page describing what will happen, which the parents can go through with their child to maybe have them think of some questions that they will need [to ask]…” [P3].
Mobile application “What about an app that can be created, in terms of those pieces that you could quickly call up – or when you’re checking in, that you could fill in, in some sort of a form. Because that’s kind of what we use on a daily basis” [P1].
“I like that idea. Because not only could you use that, it would be easy to transfer to any facility, right?” [P6].
Comprehensive digital platform that can be accessed via hospital Wi-Fi “When you register in the ER, they should be directing you to use the Wi-Fi. At the front page of your Wi-Fi, you should have these links to different [resources]…” [P2].