Table 1.

Semi-structured interview script

Introduction/ground rules
Introductory question—what is the first thing that comes to mind when you hear the phrase “sickle cell disease”?
Transition question—what is the biggest concern about your health?
Physical
In what ways, if any, does having sickle cell disease keep you from doing physical activities you want to do?
In what ways, if any, does having sickle cell disease get in the way of taking care of yourself?
What sickle cell disease symptoms bother you most?
In what ways, if any, does being afraid of having pain or other sickle cell symptoms affect what you do?
Psychological/social
What things, if any, do you worry about because you have sickle cell disease?
Do you worry about death from sickle cell disease?
Does your sickle cell disease affect how you get along with other people? How so?
In what ways does your sickle cell disease cause problems, if any, in your family?
In what ways, if any, does having sickle cell disease make you feel good or bad about who you are?
Happy?
Unhappy?
Afraid?
School
What problems, if any, do you have at school because you have sickle cell disease?
What do you like best about school?
What do you like least about school?
In what ways, if any, does sickle cell disease affect how you get along with other kids at your school?
Other
Is there anything else about your health or your sickle cell disease that is important to your quality of life?
Ending question