TABLE 3.

Caregivers are motivated to consider HCT and seek consultation because of their child’s diminished quality of life, recent complications, a need to make a major medical decision, or the concern about future severe complications

Subthemes	Quotes
Disease is impairing the quality of life	“She would like to proceed with the gene therapy due to the fact she doesn’t want to continue life having to be on the schedule with the infusions.”
SCD complications limiting future aspirations	“I just see her wanting to do things in life, like go off to college and stuff, and I’m just kind of wary about sending her away. Knowing how many times she’s sick out of the week. I just hate to see her go and not be successful because of her illness.”
The desire to live without the fear of unpredictable complications	“It (HCT) will give you the opportunity to live life with minimum amount of risk. We may have hypertension, but we don’t think that if I might go to bed today and not wake up because of the disease I have.”
A major medical decision-making brings urgency to the disease	“I am still really concerned because she is scheduled for surgery this Friday. I still have up until that day. I still have to really make a conscious choice to whether or not removing her spleen is the best choice or keeping heron the chronic transfusion would be better because it works.”
Recent disease complication serves as a reminder of the suffering and danger associated with the disease	“He’s able to walk on his own but he has pain or you know that sound the body can make when you’re walking like a cracking sound a popping sound will come upon him and he has to stop. He’ll stumble. He stumbles a lot.” “[Child] be okay, and then all of the sudden we have an acute chest syndrome. It scared me. It [death] could just happen like that for her.”