Table 2

Participant quotes relating to theme A: Children’s wide-ranging experiences of pain

A spectrum of pain
It feels like I’m being stabbed when there’s like, a sharp spike. It feels like I’ve been stabbed and sometimes it just goes like…where it’s stabbing and stabbing. (P7)1a
It feels like you’re on fire. (P4)1b
It can go anything from like…a dull background to I dunno, like, if my arms hurt and I try to lift them you’re just like ‘ooh’ you know it’s like a jab. (P11)1c
It feels really like tight… like when you accidently prick yourself like with a pin or something…. it feels like a load of pins in muscles hurting it quite a bit. (P1)1d
The worst pain is in my back cos it’s like a pain that actually like hurts, the rest of it’s kind of, just more uncomfortable, um and like, subtle in a way, I guess like, the pain my back is like, I wanna say pounding but not, pounding’s not the right word cos it doesn’t do that, but it’s like, stronger. (P9)1e
Distribution of pain: from everywhere’ to specific body sites
It’s more noticeable in, in like my back, particularly like my upper back and over my shoulders. (P11)2a
In my neck my arms and my legs, and I get pain in my hands and my feet as well. I get pain everywhere, really. (P9)2b
A lot in my neck, on the right-hand side of my neck as well, at the bottom, and at the top…but then also lower down the spine nearer to my hips. (P5)2c
Walking upstairs, like, all my bones and stuff all start to hurt. (P1)2d
I started getting joint pain then. But it’s kind of like, every, every joint really. (P4)2e
I get a lot of headaches and migraines and I also just get general like joint pain. I used to have a lot of back problems, where it would like kind of like be really painful to move my back at all. (P2)2f
Walking up like stairs and that like, I’ll always be in pain like in my legs…and just like my joints in general. (P1)2g
Pretty much everywhere. (P11)2h
Headaches, throat aches, stomach aches where I can’t eat for weeks um, I basically just get pain all over my body. (P12)2i
My skin, it’ll all really hurt and be sensitive so like, anything touching it will hurt. (P1)2j
(She finds) some things are very sensitive to touch and to brush some of [her] hair was very painful, because I think there’s certain things, when her skin just becomes more, um, more sensitive. (Father, P3)2k
I get [abdominal pain] if I’m nervous but sometimes it’s like not if I’m nervous because I’m run down. But it’s still like that similar pain to when you’re nervous. (P1)2l
Random to specific triggers for pain
(Don’t)know what brings it on, it just happens. (P9)3a
It’s very random… And then one day I could go like barely even feeling it and like the next day it could be bad. (P8)3b
Is normally there, but it’s like, sometimes, it’ll just randomly show up if I do walking…and well, really any kind of sport as well. (P6)3c
My legs hurt but that’s cos…I’ve come back from school so I’m tired. (P11)3d
Tiredness definitely makes it a lot worse. (P2)3e
It’s more, prominent on days where I have to do like a lot in a day. (P11)3f
In the cold it gets really bad. (P4)3g
It just tends to hurt a lot more when I’m cold. (P6)3h
I have to shut my ears cos it’s too loud or, like the bright lights I find, like too much. (P4)3i
If there’s like, loud noises…or like big, like flashy lights, then that just makes it quite a lot worse. (P2)3j