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Kimberly R. Jacob Arriola, PhD1, Michelle Annmarie Doldren, MPH, CHES1, and Jennie P. Perryman, PhD, RN2. (1) Rollins School of Public Health, Emory University, 1518 Clifton Road, NE, Room 510, Atlanta, GA 30322, 404-727-2600, kjacoba@sph.emory.edu, (2) Emory Transplant Center, Emory University, 1364 Clifton Road, NE, Atlanta, GA 30322
Insufficient organ and tissue donation remains the major barrier to transplantation today. Donation rates among Whites are considerably higher than minority donations, and the combination of histocompatibility-complex results and the process of matching donor and recipient blood groups contributes to most of the available kidneys being allocated to Whites rather than poorly matched ethnic/racial minority patients (Minniefield et al., 2001). For kidney transplants specifically, biological differences between Blacks and Whites make cross-transplants more difficult. This coupled with high rates of diabetes and the resulting high need for kidneys transplants contributes to the large number of African Americans on the waiting list to receive kidneys. Family acceptability is a contributing factor to organ donation (UNOS, 1999). A population-based survey of 4,816 Whites, 722 Blacks, and 75 Hispanics found that Blacks were more likely to report that their families oppose organ donation and 24% of the Black respondents did not know their family’s position on donation (Gallup Organization, 1985). Furthermore, Blacks who expressed a willingness to donate were less likely than Whites to have told to their family. In the absence of discussion, Blacks are less likely to donate a family member’s organs as compared to individuals of other racial/ethnic backgrounds. While donation decisions may be considered of a personal nature, in most states, the family will be asked to consent to deceased donation. Therefore, means to foster family discussions about donation are critical to close the gap between the supply and demand for solid organs (Thompson, 1992). The current study is the formative research phase of a larger study that sought to test the effectiveness of a culturally-sensitive organ and tissue donation intervention for Black parishioners, their families, and clergy. The purpose of this presentation is to understand the role of family in the organ and tissue donation decision-making process as well as generational influences on donation decision-making. Ten family focus groups were conducted with at least three generations represented at each focus group (N = 42). Topics covered include personal views and experiences, generational views, and knowledge surrounding donation and transplantation. Preliminary findings indicate that families spend little time discussing and thinking about donation, family members are largely unaware of each other’s views on donation, and that although younger family members have greater knowledge and awareness surrounding donation they are not necessarily more supportive of it than older family members. Implications for fostering family discussion surrounding donation will be discussed.
Learning Objectives:
Keywords: Decision-Making, Family Involvement
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.