Table 2 Participant language when describing each concept
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%) |