Empowerment
When asked if learning more about SCA made them feel better about
managing their illness, patient participants agreed.
Parent participants were able to provide context to these responses.
”You know, [the video] lets them understand that there’s something
that they can do about the sickle cell to make it easier for
them… I know that this information is going to help them. I can
talk to them, but they need to have this information themselves. So I
really appreciate that.” - Parent Participant 1.
Talking about managing SCA as a youth can be difficult. Parent
participant 3 unpacks this: ”For young adults, a lot of times what I’ve
noticed with my son, he’s very kind of reserved when it comes to talking
about sickle cell. And that’s why I think one of the reasons
participating in these things is a little bit tough on him. He does it
but not too often.” Encouragingly, the child of this participant was a
leader in the patient focus group discussion. The meaningful engagement
of this “reserved” patient embodied the empowerment created by
connecting and learning about SCA with other youth.
Parent participant 1 spoke to the use of magma as imagery and the
comfort this metaphor provided:
”The usage of the magma. It gives you an understanding better of what
can happen, and the thought that you have some control over it, that it
doesn’t have to erupt, it doesn’t have to get to that level. So that
makes me feel good.”