Table 5.
Focus Group Responses: Perceived barriers to HCT as a treatment for SCD (Theme I)
| Lack of Knowledge and Education About Bone Marrow |
| 1. “Because a lot of African-Americans don’t know anything about bone marrow transplants, because they’re not being informed like…maybe a lot of them take their children, like we do, to the clinics. Maybe a lot of them don’t read the pamphlets. I see that’s about the only way you can get any type of information is to read.” |
| Financial Cost |
| 2. “I think (unintelligible) perception that the cost implication. Of course it costs money but I wouldn’t place a cost on any life of my family. I think there’s a misperception that there are not a lot of people that have medical insurance. That they may not be willing or able to raise money for a transplant. So I think those are the two misperceptions I think are out there.” |
| 3. “Another thing is finances. It is expensive!” |
| Psychosocial |
| 4. “I think the discomfort of being a donor, because I remember when we first went to get tested my sister’s like oh, is he going to be a donor, that’s a lot of pain in there. I’m thinking if it ever came down to a decision it would probably be a hard decision to make. But if I had a chance to save my child.” |
| 5. “I was going to say I think it’s sometimes our spirit, for some African-Americans, our spiritual background in terms of we may not always be aware of what’s available in terms of technology and medicine and it’s more kind of just let God do whatever. But there may be some medical things available to us that can help us and heal us and cure us.” |
| 6. “Fear, because when they tell you that they can’t give you a percentage of if they’re going to make it out or not, especially when you don’t have a perfect match. When they can’t give you a percentage of after day one, they call it day one because they start all over. It’s like starting a brand new life. They’re saying we don’t know if she’s going to make it out or not, and we’ve only done three cases in The United States, and two of them didn’t make it and one made it, but is on a lot of medication still. So, you know a lot of stress.” |
| Trust Issues |
| 7. “Parents are too afraid to question the doctors because they think that the doctors know it all, and that they’re afraid to tell the doctor can I get a second opinion, or where can I go to get a second opinion. So I think a lot is afraid to ask questions of your doctors.” |
| System Barriers |
| 8. “There’s a booth set up I think at the state fair and I want to say its bone marrow but everything around it says cancer or leukemia. I don’t see one sickle, no nothing, but it all says cancer. And Baylor is really big on bone marrow, Baylor downtown, but it’s strictly geared toward cancer. It’s not geared towards Sickle Cell.” |
| 9. “Not having any idea what it is. No information…they just think that we have basic illnesses because we’re black and being that there are options, they don’t want to be open to the options, is what I’m saying.” |