Racial disparities continue to be prevalent throughout many areas of healthcare, including kidney transplantation. The Organ Procurement and Transplantation Network reported that African Americans comprised 68.3% of the waiting list in South Carolina from 1988 to May 2005 and received 49.2% of renal transplants during the same period. Also during that period in South Carolina, only 20.8% of the kidney transplants performed were from living donors, of which only about one-third (33.3%) were from African Americans.
Numerous researchers have reported on barriers to cadaveric organ donation in the African-American community. In a pilot project, Callender and his colleagues conducted focus groups with 40 African Americans and identified five major barriers to cadaveric kidney donation. These barriers were: 1) lack of awareness about transplantation, 2) religious myths and misperceptions about donation, 3) distrust of the medical community, 4) concerns about premature declaration of death for donors, and 5) racism. Subsequent studies confirmed Callender’s results, while others contradicted some of his findings. For example, Yuen and her colleagues surveyed 163 patients at three family practice centers in the Bronx in a racially diverse but socioeconomical-ly homogeneous community. They found a high level of support for organ donation among all racial groups and no objections based on religious affiliation. 6) Pradel and her associates at the University of Maryland conducted focus groups with a racially mixed group to explore donors’ and recipients’ attitudes toward living donor kidney transplantation. They found all participants had a positive attitude toward living donor kidney transplantation. The main perceived barrier was the potential recipients’ reluctance to accept the donor’s offer.
Researchers in Sweden conducted interviews with 12 potential donors to identify their motives in donating a kidney. While not specifically addressing barriers related to race, the study did identify “factors of concern” for donors. Two related to our study were: fear of not passing the medical screening and awareness of personal medical risks. Some researchers also report a concern being financial hardships created by living donation, while others reported potential recipients reluctant to ask family members and friends to donate living organs. Finally, some researchers found African Americans did not hold as high an opinion of transplantation as whites, in part because of what African Americans viewed as lack of fairness in the transplant process. A few researchers have studied healthcare professionals’ attitudes and knowledge about organ donation, but these studies related primarily to cadaveric donation.
Davis and Randhawa conducted 11 focus groups in black African and black Caribbean communities in the United Kingdom to assess awareness of and attitudes toward organ donation. They found a lack of available information in the black communities leading to low levels of awareness about organ donation and transplantation. Switzer and his colleagues studied factors associated with ambivalence among newly recruited bone marrow donors of all races. Their research identified concerns about finances, missing time from work, fear of procedure, pain and lack of information.
Given the broad range of issues and the lack of a standardized approach to identifying barriers to donation, little comparable information exists on barriers to living kidney donation among African Americans. Thus, the purpose of our study was to explore the perceptions of transplant center healthcare professionals about barriers to living kidney donation among African Americans in South Carolina. In this article, we report the results of three focus groups with transplant center staff at the Medical University of South Carolina (MUSC) in Charleston.