Most of the findings from our focus groups on living kidney transplantation were consistent with those of the research on cadaveric transplantation. Analysis of the focus group transcripts revealed the following perceptions of barriers to living kidney donation in the African-American population: 1) pre-existing 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. Implications of these results are addressed below.
Pre-existing medical conditions. Since diabetes, hypertension and kidney disease are prevalent in the African-American community, promoting general health among African Americans will help increase the pool of available living donors. Numerous health promotion programs are aimed at such issues, including programs in churches and other settings. However, this barrier is complex and not likely to be easily resolved.
Financial concerns. Currently, surgery costs for most living donors are covered by the federally sponsored End-Stage Renal Disease Medicare program. Delmonico and his coauthors recommended that guidelines similar to those for short-term disability be established to compensate for a donor’s lost wages. Atthe present time, the federal legislature is exploring other ways to cover donor expenses related to travel and loss of work time.
Reluctance to ask. Certainly, African Americans are not the only group reluctant to ask friends and family members to make the sacrifice of donating a kidney. Schweitzer and his colleagues in Germany also observed this concern among potential recipients. Pradel and her associates found this barrier among potential recipients of all races. However, our focus group participants noted they heard more concerns about recruiting from African Americans than from other racial groups. Participants suggested that transplant coordinators, other healthcare professionals, and friends and family members of potential recipients could also help in recruiting living donors. More public and grassroots education could also reduce potential recipients’ reluctance to ask.
Other barriers. The rest of the barriers we found (distrust of the medical community, fear of surgery and lack of awareness about living donor kidney transplantation) confirm findings of other researchers. 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. 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, this lack of awareness is due to lack of access to healthcare and to healthcare information, particularly in rural areas.
These three barriers could be addressed in part by public education and by educational campaigns aimed specifically at the African-American community. Indeed, such campaigns have been shown to be successful in increasing the living donor rate among African Americans.
Some findings from our focus groups on living kidney transplantation did not support those in previous studies. For example, when asked whether religion played a role in whether an individual would be willing to ask for or to donate a kidney, transplant center health professionals participating in our focus groups did not believe religion was a barrier to living kidney donation among African Americans. This result agreed with the findings of Yuen and her colleagues related to cadaveric donation. Our focus groups were with healthcare professionals working primarily with individuals presenting to be evaluated for transplantation and their families. Therefore, it may be these individuals already dealt with any religious misgivings about the procedure. In addition, since only one African American participated in the focus groups and he was the one who made the comment quoted in the methodology section about there being no religious reservations, perhaps other participants were reluctant to disagree with him. Therefore, it would be worthwhile to continue to explore what role religion has in transplantation decisions in the African-American community.
A strength of our study is it is one of few to explore transplant healthcare professionals’ perceptions of the barriers to living kidney donation among African Americans. Our study also confirms perceived barriers to living donation for all populations, including
African Americans. Some of the barriers we identified are similar to those Switzer and his associates found in their research on unrelated bone marrow donors—finances, missing time from work, fear of procedure, pain and lack of information.
One limitation is that our study only addressed the perceptions of a small group of transplant healthcare professionals in South Carolina. In addition, only one African American participated in the focus groups. However, the participants in this study included a diverse work group of healthcare professionals with broad domestic and international training and experience in living kidney transplantation. The participants also have many years of experience in working with potential recipients and donors in hospitals and other settings, giving them insights into barriers to living kidney donation.
Therefore, the results of the focus groups are a first step in identifying the barriers perceived by healthcare professionals to living kidney donation among African Americans. Further research needs to confirm these perceptions and should address the attitudes of transplant health professionals, the general public, and potential recipients and donors toward living kidney donation and determine the best practices to increase the pool of living donors among African Americans and other racial groups. Further research could also build on the existing research related to educational programs designed to inform and recruit African Americans willing to donate and receive living kidneys.