Rationale | Representative Caregiver Quote | Item Added to the SCPD-C v.02 |
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All 6 caregivers reported that SCPCs had an impact on their child’s emotional health | I would ask, ‘How does sickle cell affect the persons as a whole, emotionally? What are the thoughts behind a person with sickle cell, they are feeling?’ Things like that, because when you go into those—and you ask someone, I am sure if they were asked, because I ask them all the time, and he just wish it didn’t happen. Most time they wish it didn’t happen, and the main question that I get is, ‘Am I going to die?’ | Based on your observation, how much emotional difficulty did your child experience due to his or her sickle cell disease during the past 24 h (for example, being irritated or mad, worried or afraid, or feeling very sad)? |
Four of 6 caregivers reported an impact on their emotional health as a result of their child’s SCPC | I think sometimes it affects the parent, so I know you've given the gauge in how it affects the child… it affects the parent watching the child go through it. So that’s another part… I’m so sorry. I’m sniffling | How much emotional difficulty did you experience due to your child’s sickle cell pain crisis during the past 24 h (for example, stress, anxiety, sadness, or depression)? |
Caregivers discussed a tendency to go to the hospital when their child is experiencing a pain crisis. Two of 6 caregivers endorsed adding an item related to healthcare utilization | I can't count how many times we have gone to the emergency department. In the last year usually, it's just a blood test, they say it's a common cold or some little virus and they send us home, but for a while it meant an overnight stay for a couple days | Did the pain crisis lead to a visit with your child's primary care doctor, urgent care center, or emergency department during the past 24Â h? |