Transition to Adult Care
A common thread woven throughout the conversation was transition to adult care. Dynamics of family relationship were explored in this transition. The parent participants all stated that they were quite involved in their child’s SCA management, providing that constant support at all ages. Parent Participant 3 reflected on providing support for hydroxyurea adherence, ”I know, eventually he’ll get it and just do it on his own. But until then I still want to be that little voice in his ear. Encouragement.” Patient Participant 1 reflects on their perspective as a youth,
”I found as I was transitioning throughout my teenage years I kind of just started getting to know my body more I started to know like, what the limits were, like how hard I could push myself. And as I knew my body, people, like friends and family around me, just trusted me. So I feel like it is one of those things that does just come with experience as well.”
It also became apparent that the issue of seeking emergent care was also an important one in the community. As in any emergency, quick assessment and treatment is crucial. Awareness is increasing in sickle cell emergent care, especially in pediatric departments. Participant 2 continues,
”Some doctors pretty like really know what’s happening. ‘We’re getting your medication like all loaded up’, but before it was like they had to call an on call doctor. And that would take a while just for me to get medication. So kind of slowed down the process and you’re sitting in pain for a little longer, but it’s gotten better now.”
However, parent participants expressed that work still needs to be done in addressing sickle cell care in an adult setting, especially as youth transition to adult care. Parent Participant 3 recalls, ”We had a crisis and we ended up with the adults. There was no information. They treated it, like you had a cold or you know, he was in a minor pain. And then I had to, you know, step out, got up and voiced my opinion, and eventually a doctor came and, you know, offered us the care that he deserved. They are not ready yet to deal with [them] coming in as young adults. And information needs to be there, ASAP.”
For pediatric sickle cell patients, emergency cards have proved useful in the past. Patient Participant 2 recalls,
”They gave us a little card that said that, like we have sickle cell and like, like the stuff that we can do in like the first like 20 minutes that they get there to help relieve the pain. And I think that was pretty helpful. But now that I’m older, it really doesn’t help. It’s like for like the pediatrics.”
Also, the young adults of the group highlighted the importance of recognizing their role as their own illness experts. They communicated that the rate limiting step to receiving treatment is provider awareness of emergent management for sickle cell crises, especially regarding medications.
”I also feel like I can pretty much tell a doctor, what I’m feeling like how I’m feeling and probably what medications I would need. Like, because when I go in there, I pretty much know what’s happening… and like, see if they could get it approved faster, because I know not like every nurse can distribute medication like that. But stuff like that would help.” - Patient Participant 2