Background: The prevalence of end-stage renal disease is 3.5 times greater among the >2.5 million Native Americans or Alaskan Natives (NAs) in the US than in Caucasians, due to earlier age of diabetes onset. Additionally, NAs wait twice as long for kidneys, but donate at lower rates.

Methods: To determine factors correlated with willingness to donate (WTD) in the Native community, we conducted a cross-sectional study using a self-administered survey we designed to assess knowledge, attitudes, and beliefs about organ donation and transplantation. We adapted three existing instruments using cognitive interviewing and recruited participants using purposeful sampling. The final survey covered specific domains such as spiritual beliefs, attitudes, and knowledge regarding WTD. Cross-sectional data was gathered via our survey from NA adults ≥18 years old recruited at regional pow-wows. The Native community was involved in each aspect of the study planning based on community-based participatory research principles. We examined bivariate associations between donation intentions and demographics, and crude associations between attitudes, beliefs and knowledge with WTD using chi-squared analysis.

Results: Among NA adults (N=183) who took the survey (43% men; mean age 43, range 18-78 years), from 55 tribes, 65% reported WTD, but < 50% were organ donors on their drivers' license. WTD was not significantly associated with gender, education or income. Age was negatively associated with WTD by linear regression (OR 0.97, p<0.001). Two statements in the 'trust' domain were significantly associated with WTD: “I trust that doctors and hospitals use donated organs as they are supposed to,” (OR 2.29) and “I don't think doctors would try as hard to save my life if I were an organ donor,” (OR 0.22). Five questions in the 'spirituality' domain had statistically significant associations with WTD, e.g., “If I donated my organs, I would worry that my spirit would not be at rest,” and “I believe that donating my organs will disturb my passing process.”

Discussion: While spiritual beliefs are associated with negative associations with WTD, building positive associations through increasing trust between Native people and the medical community might be an effective area to target to increase WTD in the Native community.

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