Design and Testing of New Education on Living Kidney Donation and Transplantation for Native Americans

Purpose: Native Americans disproportionately experience chronic health conditions that contribute to renal disease. Prior to this research, there were no known empirically tested educational programs on living kidney donation and transplantation (LKDT) created for Native Americans who experience renal failure and who may be eligible for a kidney transplant. The study purpose was to develop and empirically test a new culturally targeted LKDT educational intervention for Native Americans receiving kidney dialysis who may be eligible for a kidney transplant.

Methods: A community based participatory research approach was used and was guided by both a community and a clinical advisory board. The conceptual basis was grounded in the Transtheoretical Model of Behavior Change and the oral tradition of storytelling. There were 3 aims. For aim 1, qualitative description was employed to elucidate the factors that influence LKDT education for the intended population. Individual interviews with five Native American participants who were receiving renal dialysis but who were not yet evaluated for renal transplant were conducted. Transcribed recordings were analyzed using the constant comparative technique. For aim 2, an educational program on LKDT was developed and evaluated. The intervention was designed based on the scientific literature, the results from aim 1, and the theoretical/cultural context of the study. Advisory boards evaluated the intervention prior to empirical testing. For aim 3, the 24 minute DVD and accompanying brochure was tested in renal dialysis centers using a delayed intervention control design. The study included 139 participants whose dialysis site (n = 139) was randomly assigned to the experimental group or the delayed intervention control group. Participants were 139 Native Americans, who were not ruled out as ineligible for renal transplant (70 experimental; 69 control). Pre/post-intervention measures were knowledge of LKDT and readiness to have a conversation about LKDT with family/friends. The concept of hope was also measured pre/post.

Results: Aim 1) Themes included: a cautious approach toward living kidney donation and transplant conversations, a concern for others, and expectations for culturally-sensitive education. Community advisory members confirmed the findings and conveyed an urgent need for education on renal disease and both living and deceased kidney donation and transplant. Aim 2) The intervention was evaluated favorably and the preferred method of delivery was face to face interaction with a dialysis center staff member using a DVD and accompanying print material. Messages of healing and hope were desired along with stories. Aim 3) Results of the site randomized trial identified no significant change in LKDT knowledge, more hopeful participants reported higher knowledge, and family conversations resulted from program exposure.

Conclusion: Culturally-sensitive education on kidney donation and transplantation is needed for Native Americans and interventions should include stories of community members and convey a message of hope in addition to basic education about kidney disease, the benefits of kidney transplant, and information about donor risks and benefits. This site randomized trial was a pilot study that requires replication or further testing with a different population such as family members.