Survivors | Caregivers | ||
Meaning unit | Meaningful concept | Meaning unit | Meaningful concept |
Pain interference | |||
Existing concepts in the PROMIS item banks | |||
“[couldn’t] Play with [sibling’s name] and [sibling’s name].” | Hard to do things with family. | “The one where they blew up her bladder. Yeah oh it was awful. She screamed a lot. Yeah had a lot of pain with that and yeah so I warned her about that because she had that done several times.” | Hurt a lot. |
“Less focus.” (other problems pain caused) | Hard to pay attention. | “He was just in a lot of pain from it and he had to just–. I gave him medicine–he had to just chill out for the whole day.” | Pain so bad had to take medicine. |
New concepts | |||
“With the pain I was having I just felt like I couldn’t eat. I just wanted to lay down and go to sleep.” | Hard to eat. | “Mhm, she didn’t want anything to eat. I mean, she didn’t want her cup or anything like that.” (when she had pain) | Hard to eat. |
“So it made stuff really hard like showers were hard because they hurt so much.” | Hard to bathe/shower. | ||
Fatigue | |||
Existing concepts in the PROMIS item banks | |||
“Probably making crafts or on the trampoline.” (things can’t do with friends when tired) | Hard to play or go out with friends. | “This past spring, she got really really tired and it was after a lot of dance, a lot of rehearsals, lots and lots and lots.” | Felt tired. |
“I always get home from school and just go to sleep.” | Needed to sleep during the day. | “She’ll probably fall asleep in the car on the way home. When she gets home, she’s just kind of quiet in her room laying down.” | Needed to sleep during the day. |
New concepts | |||
“Like if I’m wanting to walk around and I’m just so tired, I have to like, I can’t I have to sit down and just chill out.” | Too tired to walk. | “Sometimes she’s just kind of ill and cranky and, um, don’t mess with me type of attitude.” (when she is fatigued) | Felt irritable. |
“Well, just that um by, I guess, by getting tired, it’s harder to move as fast and just be able to keep the speed up to get back, I guess.” | Too tired to move. | “And then he’ll fall asleep in class.” (because child is tired) | Fell asleep at school. |
Psychological stress | |||
Existing concepts in the PROMIS item banks | |||
“That I was never going to make it.” (thoughts when stressed during sickness episode) | Felt worried. | “[Child’s] stress was more, I don’t think so much about doing the heart cath itself. It was that, ‘I’m not going to be able to possibly play football anymore,’ and that upset him.” | Felt distressed. |
“Emotions… that I was feeling bad and stuff like that.” (how child felt when stressed) | Felt distressed. | “And it’s just every little detail, he was worried about. Is my stance right, what’s going on, I’ve hit before and now I can’t, I’m not getting hits.” | Felt worried. |
New concepts | |||
“Faster heartbeat but that’s just part of being stressed.” (child’s physical experience of stress) | Physical experience of stress. | “Her blood pressure will be high.” (when child is stressed) | Physical experience of stress. |
Stigma | |||
Existing concepts in the PROMIS item banks | |||
“I guess my perception on things is different than other people’s perception. It’s harder for me to do some things than others.” | Felt different from others my age. | “Just would say, ‘You are cross eyed or cock-eyed’ or ‘You have a lazy eye.’” (how others would bully child) | Others my age bullied me. |
“Um after the boy teased me, I tried not to like let it bother me but I was still, I mean I was kind of self-conscious about my scars back then and I still kind of am now.” | Unhappy how condition affected appearance. | “Or they look at him and then their reaction on their face, of, you know, disapproval.” | Others my age seemed uncomfortable. |
New concepts | |||
“Because they didn’t quite understand about it, or know they were being mean or anything.” (Why did they tease you?) | Others didn’t understand me. | “He told his story in a poem and they then realized what happened, and people were in awe and they started treating him differently. And they realized that it was – that he had went through a lot of things, um, and that the cause of his, you know, his as far as his eye kind of looking the way it is. They didn’t realize – they just didn’t know the story and once they heard the story, they kind of changed their, um, tone as far as being mean.” | Others treated me differently. |
“It’s just when you treat me differently I’m just like you know, don’t do that like you don’t have to change how you treat me because of my past so I’ll just tell them like I’m fine now but after I tell them cancer, they’re like oh my goodness. And I’m like it’s okay you know. So I just do that, and like have yearly checkups and so it’s all good now.” | Others treated me differently. | ||
Meaning and purpose | |||
Existing concepts in the PROMIS item banks | |||
“To have all as the rest of my life when I’m in school and have a really big house and being able to be a doctor at St. Jude.” (important goals) | Have goals for myself. | “And so for her, to be able to give a person the nose that they want, or to help them look the same after a bad accident or something, for her, that’s going to be perfect down the line. So right now, she’s trying to line up the academics to make that happen.” (child’s goals) | Things I want to do in life. |
“Like, because when I had cancer and stuff, I mean, I could’ve died.” | Pleased to be alive. | “He just – he is here for a purpose to either bring our family close together or he is here to mentor or show someone else that, um, no matter what you go through, it could be worse. Or you know, it – it could always get better.” | Purpose in life. |
New concepts | |||
“Because at St. Jude they helped me and I want to help other kids like me survive cancer and yeah.” (why being doctor a goal) | Want to help others. | “She decided at one point in time that that’s what she wanted to do when she was older, because she wanted to help kids that didn’t have anywhere to go really.” | Want to help others. |
PROMIS, Patient-Reported Outcomes Measurement Information System.