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Table 2 Participant language when describing each concept

From: Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

   Parent Example Language N (%) Child Example Language N (%)
Symptom Abdominal/ stomach pain “[tells me] stomach’s hurting” CH-001-F-P [9 Y/O]) 20 (100%) “tummy hurts” (RP-013-M-C [5 Y/O]) 12 (100%)
Diarrhea/Loose stool diarrhea comes, it comes fast” CH-016-F-P (6 Y/O) 20 (100%) “[my stool] it’s liquid” (CH-013-M-C [9 Y/O]) 10 (83%)
Blood in stool “blood in his stool” (CH-008-F-P [4 Y/O]) 18 (90%) red blood in the toilet” (CH-001-F-C [9 Y/O]) 11 (91%)
Stool urgency “[child says] ‘I have to poop [now]” (RP-013-F-P [5 Y/O]) 17 (85%) I’ll have to, like, run to the bathroom” CH-015-F-C [11Y/O]) 8 (66%)
Incomplete evacuation “[tells me] I have to go again” (NO-002-F-P [6 Y/O]) 17 (85%) I had to use the bathroom again” (NC-001-F-C [10 Y/O]) 8 (66%)
Stool frequency “[he is] constantly going [to the bathroom]” (CH-016-F-P [6 Y/O]) 16 (80%) Maybe it [number of poops] goes to the 30s” (CH-014-M-C [8 Y/O]) 8 (66%)
Feeling gassy/ passing gas “he has gas” (CH-004-F-P [11 Y/O]) 16 (80%) I have like gas constantly” (CH-004-M-C) 8 (66%)
Constipation “[he says]‘I have to go to the bathroom, but nothing is coming out” (CH-014-F-P [8 Y/O]) 14 (70%) It feels like I have to do it, and I try doing it, do a number two, but, like, I, like, can’t go” (CH-001-F-C [9Y/O]) 7 (58%)
Stomach cramping He’s like, “I have a little cramping, mommy”” H-003-F-P [4 Y/O]) 14 (70%) I get cramps because of it” (CH-007-M-C) 7 (58%)
Incontinence she’s had some accidents” (CH-005-F-P [4 Y/O]) 14 (70%) see a stain in my underwear” NC-001-F-C [10 Y/O] 5 (41%)
Bloating “her stomach swells up” (CH-001-F-P [9 Y/O]) 10 (50%) feels like my stomach’s full” (NC-001-F-C [10 Y/O]) 5 (41%)
Mucus in stool “[stool] that’s bloody and mucusy” (RP-014-F-P [4 Y/O]) 13 (65%) It looks like snot, kind of” (NC-001-F-C [10 Y/O]) 2 (16%)
BM anticipation /tenesmus Sometimes he’ll [go] to the bathroom to poop, but doesn’t have to, so he just sits there” (CH-004-F-P [11 Y/O]) 4 (20%) “‘I need to go to the bathroom.’ I go to the bathroom straight away and then ... Then I’m super confused why it doesn’t happen. I’m like, ‘Wait. Why is it not happening?’” (CH-014-M-C [8 Y/O]) 3 (24%)
Vomiting “vomiting” (CH-004-F-P [11 Y/O]) 3 (15%) “I threw up” (RP-013-M-C [5 Y/O]) 1 (8%)
Dizziness/lightheadedness she really feels dizzy” (NO-001-F-P [11 Y/O]) 2 (10%) dizzy” (N0–001-F-C [11 Y/O]) 1 (8%)
Flu-like symptoms you know, feels kinda sick” (NO-001-F-P [11 Y/O]) 3 (15%) 0 (—)
Emotional/ psychological impacts Low mood/upset it [UC] makes him sad (CH-010-M-P [4Y/O]) 11 (55%) it [UC] makes me cry” (CH-001-F-C [9 Y/O]) 8 (66%)
Worry, anxiety, fear “he’s afraid” (NO-002-F-P [6 Y/O]) 10 (50%) “it scared me” (CH-013-M-C [9 Y/O]) 4 (33%)
Embarrassment he’s just embarrassed” (CH-003-F-P [4 Y/O]) 10 (50%) it’s kind of embarrassing to have it [UC]” (CH-007-M-C) 1 (8%)
Frustration it’s more frustrating with him” (CH-010-M-P [4 Y/O]) 9 (45%) it’s [UC] annoying” (NC-001-F-C) 1 (8%)
Anger “he get angry at” (CH-010-M-P [4 Y/O]) 1 (5%) I’m angry that my stomach hurts” (CH-001-F-C [9 Y/O]) 1 (8%)
Physical impacts Impact on play & physical activities you know he doesn’t wanna play with anything” (CH-003-F-P [4 Y/O]) 16 (80%) it hurts when I try running” (CH-001-F-C [9 Y/O]) 6 (49%)
Fatigue and tiredness he would be tired too. Very tired, ‘cause I think it [UC] was just exhausting” (CH-013-F-P [9 Y/O]) 14 (70%) I feel really weak … And lazy … Even though I feel those things,” (NC-001-F-C [10 Y/O]) 3 (24%)
Limitations on eating “loss of appetite” (CH-013-F-P [9 Y/O])
“[biggest impact] not being able, being able to eat certain stuff” (NO-001-F-P [11 Y/O])
11 (55%) “[there are] foods I’m not allowed to eat” (CH-002-F-C [8 Y/O]) 3 (24%)
Impact on sleep he’s gonna be getting up during the night because he has to use the bathroom” (RP-013-F-P [5 Y/O]) 2 (10%) “The pain wakes me up” (CH-015-F-C [11 Y/O]) 4 (33%)
Weight loss or changing weight he lost a lot of weight” (NO-002-F-P [6 Y/O]) 4 (20%) 0 (—)
Social impacts Impact on social life There’s many weeks he can’t go see his friends” (RP-013-F-P [5 Y/O]) 5 (25%) I couldn’t go to my church [to see friends]” (RP-013-M-C [5 Y/O]) 3 (24%)
Having to plan around UC doesn’t wanna be too far away from the bathroom” (CH-004-F-P [11 Y/O]) 2 (10%) I have to like stop and take my medicine” (NC-001-F-C [10 Y/O]) 1 (8%)
Other Impact on school He doesn’t even want to go to school” (CH-009-F-P [4 Y/O]) 14 (70%) Like, I miss some stuff in class” (CH-004-M-C [11 Y/O]) 9 (74%)