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.”