Knowledge Gaps
The video was able to provide learning for patient and parent participants. Our youngest patient participant (4) said, ”I learned that sickle cells can’t really bring oxygen; other blood cells can.” Another young participant (5) stated they ”learned about the function of the sickle cells”.
Older teenage participants specifically commented on learning about why TCD ultrasound and MRI screening is important. ”I did all these tests, but I never really knew why I was doing these tests. So, I felt like the video adequately explained the reasoning behind the tests.” - Patient Participant 1.
For Parent Participant 2 it was helpful to hear familiar information in a new way: “You know, like today, just listening to that video… it was a different perspective, it was actually a revelation. I’m like, oh, you know, I’ve done so much research… but here I am, and still learning.”
Although participants were happy with the educational content of the video there were suggestions for future content. One parent suggested stressing the potential for sickle cell emergencies in other areas of the body such as in the eyes and the importance of screening eye appointments. Another suggestion was to include information on what to do to receive help when experiencing a SCA emergency. Another participant inquired about whether it is safe to take hydroxyurea in pregnancy.