Table 3 Impacts of sickle cell pain crises (SCPCs) on children, as reported by their caregivers

The pain crises. He would holler. Scream. Run through the house… Just more pain. The screaming, usually when he go through crises, everything starts to swell up. In his stomach, hands, lips, and ankles. And he don’t want to be bothered, so I know that’s when I really have to take him in

When he’s in a crisis, it’s just intensifies about 10 times more. He’s screaming and in a lot of pain. And then sometimes—but the pain is kind of weird, because sometimes it’s like it’s certain body parts. It’s never in one area. Sometimes, 'My arm is so numb, and it hurts, and it feels like needles and pins sticking in.' And then there’s other times where he just, he has a really bad stomach ache, but he cannot hold anything down

Emotional Health

 Sadness

 Agitation/Irritability

 Anger

 Frustration

 Worry

 Fear

9 (100)

As bad as she want to [play with others], she’ll break down and cry… frustrated and angry. She gets so angry when you don’t let her, cause she be willing and wanting to

 Sleep

 At home or at hospital

 Trouble falling asleep

 Trouble staying asleep

9 (100)

No one slept. Because when you're in the hospital, they're coming in and checking often, and it's just hard to get comfortable. Or we are waking him to give him the medicine…stay ahead of the pain, so then you have to try to get him to go back to sleep

School

 Attendance

 School work

 Attentiveness during class

8 (89)

She’s not able to take her test when she’s supposed to. She has to do make-up…and then sometimes she can’t catch—she’s not catching up because she has so much to do, and she’s a little bit behind

Social and Recreational Activities

 Unable to participate or needing to stop participation

6 (67)

Um, he likes to play basketball, and he’ll run, run, run, and then all of a sudden, he’ll stop, and I’m like, 'Why’d you stop? You know, finish it,' or whatever. He’s like, 'No… I think that’s enough. ‘I said… 'Why? ‘And he doesn’t really have a explanation for it. But I can look at him and tell it’s like, you know, 'I don’t want to, ' and I said, 'What is it? Are you afraid of being in pain or, you know, you think you might be in pain? ‘He’s like, 'Maybe.'

Physical Functioning

 Unable to complete physical tasks

Immobile

4 (44)

I mean, he is not going to be climbing anything, that’s for sure, and he is not going to be jumping, because his bones are hurting. He is not going to be doing any of that, that’s why he just sits

Daily Activities

 Difficulty getting ready in the morning

 General inactivity

 Unable to use bathroom

3 (33)

No, he can’t move. No, I even have to help him to the bathroom. I even got him one of those urinals from the hospital. He has it in his room