Abstract: TH-PO877
Experiences of Ethnically Diverse Living Kidney Donors
Session Information
- Transplantation: Donation and Access
November 02, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
Abstract Time: 10:00 AM - 12:00 PM
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