Table 2.

Selections from the Interview Guide

1. Cognitive debriefing questions

● Have you had any pain or hurting today?

● When you answered this question, you chose this face [point to face by child]. How do you think this person is feeling? How much pain is this person having?—REPEAT THIS FOR ALL FACES

● When is the last time you had pain or hurting? Can you tell me about that time? Now can you point to the face that shows how much pain or hurting you were having that time?

● Have you heard the word “discomfort” before? If yes, what does “discomfort” mean?

2. Usability testing questions for parent and child

● Could you see all the faces clearly on the screen?

● Would you be willing to use the small computer again to answer questions about your pain?

3. Questions for the parent/legal guardian relating to the original instructions

● How well did your child understand the instructions you gave him/her?

● How confident are you that your child understood the response scale?

● If your child had to complete this each night, do you think your child would be able to think back over the course of the day and indicate his/her worst pain using this scale?

4. Questions for the parent/legal guardian relating to the alternate instructions (if applicable)

● Did the alternative instructions help instruct your child on what to do?

● How confident are you that your child understood the question?

● If your child had to complete this each night, do you think your child would be able to think back over the course of the day and indicate his/her worst pain using this scale?

5. Indicators of pain

● Can you tell me about your child’s pain related to sickle cell disease?

● Can you tell when your child is experiencing pain related to sickle cell disease? How can you tell? What do you observe?