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A REVIEW OF THE LITERATURE

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Perspectives 11THE BLACK ORGAN AND TISSUE DONOR SHORTAGE: A REVIEWOF THE LITERATUREStephen B. Thomas, Ph.D., Director, Center for Minority Health, Graduate School ofPublic Health, University of PittsburghIntroductionOn April 16, 1999, the Department of Health and Human Services and the UnitedNetwork for Organ Sharing (UNOS) announced that the number of organ donorsincreased 5.6 percent in 1998, the first substantial increase since 1995. Donationincreases between 1997 and 1998 were substantial for whites (up 6.6 percent from4,139 to 4,410 donors) and Hispanics (up 7.8 percent from 552 to 595 donors). How-ever, the number of black donors remained relatively unchanged at 654 donors in1998, and the number of Asian donors decreased by 8.4 percent from 107 to 98 do-nors (HRSA, April 16, 1999).In April 1998, the Office of the Assistant Secretary for Planning and Evaluation, theNational Institutes of Health, and the Agency for Health Care Policy and Researchcosponsored a national conference, “Increasing Donation and Transplantation: TheChallenge of Evaluation.” The purpose of the conference was to identify methods toevaluate strategies designed to increase donation and transplantation. Despite thegrowing portfolio of funded activities, the effectiveness, replicability, transferability,and practicality of interventions that can serve as models have yet to be demonstrated.A great deal of information about well-validated theories and models of health be-havior change has been amassed in the public health and health education literature inthe past decade. However, with few exceptions, this knowledge has not been appliedand integrated into the design and evaluation of strategies for increasing organ andtissue donation among African Americans. The purpose of this article is to provide afoundation for understanding the social context of organ and tissue donation in theblack community and the social science challenges confronting any effort to increasethe participation of African Americans in donation programs.BackgroundThere is a large body of literature on organ and tissue donation and transplantation ingeneral. This review is limited in focus to those issues as they relate to African Ameri-cans. The literature is easily classified into three types. The first group includesarticles that provide statistics or data to describe the problem (“Descriptive Articles”);the second group includes research that looks at why donation rates are low amongPerspectives 12African Americans (“Explanatory Articles”); and the third group is made up of ar-ticles that suggest strategies or approaches for increasing donation rates (“Interven-tions and Evaluations”).Descriptive ArticlesIn 1995, there were approximately 44,000 people on the United Network for OrganSharing (UNOS) waiting list for organ donation (UNOS, 1997). On average, how-ever, only about 6000 to 9000 individuals on that list are transplanted each year (Yuen,Burton, Chiraseveenuprapund, Elmore, Wong, Ozuah & Mulvihill, 1998). Conse-quently, a significant number of people on the list (e.g., 3500 in 1995) die each yearwhile waiting for organs. The donor shortage is particularly problematic for blacksbecause of both a greater need for donated organs and lower organ donation ratesamong blacks compared to whites. In 1995, for example, African Americans com-prised only 12% of the US population but they represented approximately 35% of thenational waiting list for kidney transplants (UNOS, 1996). This increased need forkidneys is primarily due to a higher rate of end-stage renal disease in the black popu-lation, which is linked to a higher incidence of hypertension among blacks (USRDS,1996). The African American kidney donation rate in that same year was only 11%,resulting in a large discrepancy between the number of African American donors andpotential organ recipients (UNOS, 1996).African Americans are far less likely to be transplanted, and significantly more likelyto die while awaiting transplantation, compared to whites. In 1995, for example, only23.1% of blacks (compared to 47.9% of whites) on the kidney transplant waiting listreceived a transplant (UNOS, 1997). These and other similar statistics point to asignificant need for more donated organs from all types of donors. They also, how-ever, illustrate the urgent need for more African American organ and tissue donors inparticular. The significance of the mismatch between the number of African Ameri-can donors and those needing transplants is that for many types of transplants, includ-ing kidney transplants, the likelihood of success is greatest when donor and patientare of the same ethnicity (Yancey, Coppo & Kawanishi, 1997).Explanatory ArticlesIn reviewing the literature on reasons for low donation rates among African Ameri-cans, it quickly became evident that Dr. Clive Callender and his colleagues fromHoward University were not only pioneers in the field but continue to be the leadingsource of information about African Americans and organ donation. Of the 46 ar-ticles cited in this review, Callender is an author on 10, or more than 20%, of them.Callender’s work in this area began with a 1982 pilot study of 40 African Americanmen and women in Washington, DC (Callender, Bayton, Yeager & Clark, 1982). ThatPerspectives 13sample represents one of only 8 predominantly African American samples identifiedin this review that have been the subject of research on organ donation (see Table 1).Callender’s research is widely quoted in studies describing the African Americandonor shortage (Daniels, Rene, Fish & Daniels, 1992; Toledo-Pereyra, 1992).From focus group discussions conducted as part of the 1982 pilot study, Callenderidentified five major barriers to donation (Callender et al., 1982). They are: 1) lack ofawareness about transplantation, including awareness about the effectiveness of trans-plantation, the donor shortage in general, and the disproportionately high need forAfrican American donated organs; 2) religious myths and misperceptions about do-nation; 3) distrust of the medical community; 4) concerns about premature declara-tion of death for donors; and 5) racism, or concerns that donated organs will not bedistributed fairly among blacks and whites.Many of Callender’s findings have been replicated by other researchers in the field(See Table 1). For example, Davidson and Devney (1991) and Sanders-Thompson(1993) identified religious issues and distrust


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