Making up 13.4% of the United States population, African Americans (AAs) account for 28.7% of candidates who are currently waiting for an organ donation. AAs are disproportionately affected by end-organ disease, particularly kidney disease, therefore, the need for transplantation among this population is high, and the high need is also observed for other solid organ transplantation. To this end, we worked with the AA community to derive an empirical framework of organ donation strategies that may facilitate AA decision-making. We used a cognitive mapping approach involving two distinct phases of primary data collection and a sequence of data analytic procedures to elicit and systematically organize strategies for facilitating organ donation. AA adults (n = 89) sorted 27 strategies identified from nominal group technique meetings in phase 1 based on their perceived similarities. Sorting data were aggregated and analyzed using Multidimensional scaling and hierarchical cluster analyses. Among 89 AA participants, 68.2% were female, 65.5% obtained > high school education, 69.5% reported annual household income ≤ $50,000. The average age was 47.4 years (SD = 14.5). Derived empirical framework consisted of five distinct clusters: fundamental knowledge, psychosocial support, community awareness, community engagement, and system accountability; and two dimensions: Approach, Donor-related Information. The derived empirical framework reflects an organization scheme that may facilitate AA decision-making about organ donation and suggests that targeted dissemination of donor-related information at both the individual-donor and community levels may be critical for increasing donation rates among AAs.
Keywords: African Americans; Organ donation; barriers; cognitive mapping; facilitators; formative research.