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.