ASN's Mission

To create a world without kidney diseases, the ASN Alliance for Kidney Health elevates care by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world.

learn more

Contact ASN

1401 H St, NW, Ste 900, Washington, DC 20005

email@asn-online.org

202-640-4660

The Latest on X

Kidney Week

Abstract: TH-PO877

Experiences of Ethnically Diverse Living Kidney Donors

Session Information

Category: Transplantation

  • 2102 Transplantation: Clinical

Authors

  • Velez-Bermudez, Miriam E., University of New Mexico Health Sciences Center, Albuquerque, New Mexico, United States
  • Rishel Brakey, Heidi, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, United States
  • Myaskovsky, Larissa, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, United States
  • Unruh, Mark L., University of New Mexico Health Sciences Center, Albuquerque, New Mexico, United States
  • Singh, Pooja, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, United States
  • Pandhi, Nancy, University of New Mexico Health Sciences Center, Albuquerque, New Mexico, United States
Background

Living kidney donors enter the donation process in good health but are often ill-prepared to face any negative outcomes following donation. Adverse post-donation outcomes are more prevalent among ethnic minorities. We aimed to provide an in-depth description of ethnically diverse donors’ positive and negative outcomes to inform development of an online module of lived experiences.

Methods

We used the DIPEx (database of individual patient experiences) method to conduct in-depth individual interviews with a diverse sample of donors. This method combines in-depth patient interviews with rigorous systematic, purposeful sampling and qualitative analysis. All interviews were conducted by a primary and secondary interviewer and analyzed by a qualitative research team.

Results

Fourteen donors (9 women; 8 White, 5 Hispanic, 1 Native American) completed narrative interviews. Findings highlight the critical role of social support in validating the decision to donate and aiding post-donation recovery. Participants felt compelled to donate to prevent dialysis use or death for their recipient. Although familial duties seemed to motivate donation for Hispanic and Native American women, a call to action as a healthy individual was a greater motivator among the White donors. Most (n=13) felt well-supported by healthcare providers throughout the entire pre-donation period, though three participants reported erroneously being told they had developed kidney disease in primary care due to a lack of clarity regarding post-donation clinical care. Among directed donations (n=12), most reported either no change or improvement in the relationship to the recipient. Many donors (n=11) experienced unanticipated outcomes post-donation, including minor complications (e.g., constipation, fatigue, pain), moderate complications (e.g., hernia, gout), or emotional distress (e.g., depression, mourning loss of kidney). Despite these adverse outcomes, all participants were enthusiastic about donation and reported no regrets.

Conclusion

Adverse outcomes post-donation did not preclude living donors’ enthusiasm and support of donation; therefore, greater transparency about post-donation outcomes is warranted. An online DIPEx module presenting these diverse experiences may enhance awareness and understanding of the donation process for future living kidney donors.

Funding

  • Other NIH Support