Table 2 Daily impacts of sickle cell disease on children, as reported by their caregivers

Emotional Health

 Anxiety

 Depression

 Anger

 Feeling judged

 Frustration

7 (78)

And it was, 'Why do I have to do this? Why do I have to go through this?' You know, 'Why me?' So, it affects her because now she's getting older and she's realizing what she's missing. She’ll see the… kids that don't have sickle cell get to run, and play, and jump, and do –so it affects her. She doesn't like sitting on the sidelines sometimes. So, you'll catch her crying. You’ll catch her upset

Social and Recreational Activities

 Modify or limit activities including: physical education, recess, field trips, or sports

6 (67)

He would like to play football, and that’s just not going to happen for many reasons. Because, just getting bruised, that can be an issue… I might take him shopping or do something kind of fun. But not too fun… any little thing can trigger him going into a crisis or just a lot of pain

Physical Functioning

 Limit physical activities including: running or playing

5 (56)

Sometimes she likes to run, and she likes to jump, and she likes to play; she loves to dance. So, with her, she gets winded so quick that she has to stop and sit down, and then she has to get back up and so… with sickle cell, you have a lack of oxygen you can pull into all of your organs, so with her, she’s off top like, OK, I can't go as long or I can't, but it doesn't stop her, but she’s going to try it

Daily Activities

 Interference in day-to-day activities

 General low activity

5 (56)

[He’s] not as active as my other kids. Um mainly you got to, “Come on let’s go,” you got to prep him up to get him to go to school and stuff like that

School

 Attendance

 School work

 Attentiveness during class

4 (44)

He’s literally falling asleep in class. He’ll come home and fall asleep and won’t finish his studies or his homework