The focus group participants were an interdisciplinary, multicultural group of transplant healthcare professionals. A total of 18 individuals participated in three focus groups, with each group including 5-7 people. Participants included eight physicians (four nephrologists, three transplant surgeons and one transplant surgery fellow), six transplant coordinators, one nurse practitioner, two pharmacists and one data coordinator. Each group was similarly balanced in representation of different disciplines. Twelve of the participants were non-Hispanic Caucasian, four Asian, one African-American and one Hispanic (Table 2).
Table 2. Demographic characteristics of focus groups composed of 18 interdisciplinary, multicultural healthcare professionals at the Medical University of South Carolina
|Fellow (Transplant Surgery)|
In the focus groups, transplant healthcare professionals identified what they perceived as barriers to living kidney donation among African Americans in South Carolina. Barriers emphasized were: 1) preexisting medical conditions, 2) financial concerns, 3) reluctance to ask family members and friends, 4) distrust of the medical community, 5) fear of surgery, and 6) lack of awareness about living donor kidney transplantation.
Pre-existing medical conditions. While participants did not prioritize barriers, this barrier was brought up early during all three focus groups. According to the participants, the lack of available living donor kidneys is due in part to pre-existing medical conditions in the African-American population, making potential donors medically ineligible to donate. Conditions such as diabetes, high blood pressure or intrinsic kidney disease are highly prevalent in the African-American community and lead to a scarcity of qualified donors. This point is emphasized by one participant’s comment: “A lot of them have hypertension and diabetes that run in their families, and a lot of them are on dialysis together.”
Financial concerns. Focus group participants said they heard potential recipients and donors express concern about such issues as loss of time at work, loss of job, lack of transportation to the transplant center for tests and an inability to get insurance after donation. Participants said hourly employees were afraid they would lose pay when donating their kidney or may lose their employment due to their physical inability to work. Two statements were representative:
• “Economics plays a role. If you are in a job
situation where physical labor is what you have to do to earn your living, then obviously undergoing any kind of operation could potentially cause you not to be able to resume that job.”
• “People worry about their medical insurance.
Will they be able to get medical insurance if they have only one kidney?”
• Reluctance to ask. Participants talked about the reluctance of potential recipients to ask family members and friends to make such a sacrifice. According to individuals in the focus groups, African Americans appeared more reticent about asking for or accepting a loved one’s kidney. They were also less likely to come forward to volunteer and less likely to be willing to initiate discussion about transplantation among family members.
• Typical comments addressed such issues as a potential recipient’s or donor’s worry that the donor might some day have kidney failure him or herself or the donor’s child might need a kidney in the future. Following are representative statements.
• “They don’t want a kidney from their friend or
their daughter, and they don’t want to hear about it and that’s the end.”
• “They don’t want to ask their two or three healthy
kids … they just don’t want to visit that issue.”
Distrust of the medical community. Participants also identified distrust of the medical community among African Americans as a barrier to renal transplantation. Participants noted that some African Americans felt whites received preferential treatment in terms of medical care. In referring to cadaveric donation, one participant said, “They might feel that Caucasians get transplanted before African Americans if they’re on a list.”
Asked about living donation, participants said the distrust was still there but not as much as with cadaveric donation:
I think they have a fear of who does this team have a vested interest in. Are we just after the organs or are we really making sure this is safe to do? As much as we try to calm them on that factor, I think they’re afraid of that, that we just want the kidney.
Fear of surgery. Participants of the focus groups reported fears related to surgery included worries about physical and psychological changes following donation of the kidney, scarring, physical complications of the surgery and lack of support following the donation. Some said potential donors were concerned about whether they could have children later. Participants mentioned people wondered whether they could live with just one kidney and worried about what would happen if one day they lost that kidney as well. Few participants mentioned pain or death as major concerns for potential donors, but some participants said potential recipients worried about the pain their loved ones might suffer if they donated.
Lack of awareness about living donor transplantation. A recurrent theme in the focus groups was African Americans, particularly those who are less educated, do not have complete or accurate information about the transplantation process when they present for evaluation. A transplant coordinator said: “They don’t understand that they’re getting off of dialysis and they’re getting a transplant and have to take all of these medications and have to get labs all the time … It’s more involved than they understand.”
Participants said some potential recipients referred for evaluation are not aware of living donation and laparoscopic surgery as options. In addition, some potential recipients and donors are not aware of the advantages and disadvantages of transplantation. In part, participants said, this lack of awareness is due to lack of access to healthcare and to healthcare information, particularly in rural areas.
Religious concerns. When the facilitator specifically asked whether potential patients or donors had any religious objections to living donation, participants in our focus groups did not believe religion was a barrier. One participant (the only African American) made a comment reflecting the general opinion: “Surely by the time the issue is brought up, I guess they have made up their mind to do something … They may be on the fence, and they just need someone to push them over. I don’t think we have had anyone who for religious reasons refused.”
Same Race or Culture Role Models
This issue was not brought up as a specific barrier to living kidney donation among African Americans. However, when the facilitator asked how best to recruit living donors, participants made these representative comments. The first three statements were from female nurse coordinators. The last two comments were from male physicians.
• “One of the things I think might help.. .is having
an African-American donor and recipient out in the community, attending functions where African Americans are likely to attend … to increase knowledge of transplant donation.”
• “I totally agree with her in that the whole thing about this is to have role models and if you have role models in a particular race, then it’s not incorrect to do that. I mean, if it’s going to allay fears and mistrust, I think it should be welcome and it should happen.”
• “I think there should be more outreach into the communities … There are actually different cultures in the different parts of the state— different cultures that need to be educated differently.”
• “In my country, where I come from, where we’ve got a zillion different languages and a zillion different religions, I’ve always noticed
that in my team, even when I was chief resident, if I had an intern who spoke the same language as the person or was of the same religion as that person, [patients] would have greater trust in that doctor’s ability than anyone else on the team.” • “That issue, I don’t think it makes much of a difference because in one of the best, very successful living donor programs in the country, their coordinators are both Caucasians. They have one of the largest [success rates] for cadaveric or living donation in African Americans in the country, probably in the world … So I don’t think it makes much of a difference, by my own experience.”
Several participants agreed with the latter statement.