The Transplant Experience for Undocumented Immigrant Patients Formerly Receiving Emergency Dialysis and Caregivers

Abstract

ImportanceIndividuals of undocumented immigration status with kidney failure face barriers to receiving transplants due to lack of health insurance despite no regulatory barriers. Little is known about the perspectives on kidney transplant among individuals with undocumented immigration status with kidney failure who relied on emergency hemodialysis.ObjectiveTo examine the overall experiences of transplant among transplant recipients of undocumented immigration status who previously relied on emergency hemodialysis and their family caregivers.Design, Setting, and ParticipantsIn this qualitative study, semistructured 1-to-1 interviews were conducted with transplant recipients who had previously received emergency hemodialysis and transitioned to scheduled dialysis and their primary caregivers living in Denver, Colorado, between May 1, 2022, and March 31, 2023, in English or Spanish.Main Outcomes and MeasuresThemes and subthemes regarding the experience of transplant as an undocumented immigrant previously receiving emergency hemodialysis were identified. Interview transcripts were translated, deidentified, and then analyzed using thematic analysis.ResultsA total of 25 participants including 15 transplant recipients (5 [33.3%] female and 10 [66.7%] male; mean [SD] age, 49.5 [9.8] years) and 10 caregivers (7 [70.0%] female and 3 [30.0%] male; mean [SD] age, 44.5 [22.3] years) participated. Six themes were reported: limited kidney replacement therapy education while receiving emergency hemodialysis (lack of awareness of kidney disease and treatment options and discriminatory kidney replacement therapy education due to immigration status), hope for transplant once receiving scheduled dialysis (prospect of transplant through scheduled dialysis, family and quality of life as transplant motivators), transplant education and health insurance after transition to scheduled dialysis (inadequate transplant education in dialysis clinic, peer-to-peer transplant education, and peer-to-peer communication regarding availability of private health insurance), uncertainty during transplant evaluation (difficulty navigating the evaluation and wait-listing process, lack of communication regarding timeline, and concern for family limiting living donation), posttransplant improvements (ability to work after transplant is critically important given immigration status, autonomy with transplant improves mental health, and vigilance in maintaining transplant), and transplant facilitators (self-advocacy, spirituality and optimism, and peer support).Conclusions and RelevanceThis qualitative study of transplant recipients of undocumented immigration status and their caregivers found that individuals formerly receiving emergency dialysis are excluded from education and access to transplant, and peer support throughout the transplant process helped with education and motivation to pursue transplant. These findings may be used to implement improvements in access to support and education for patients of undocumented immigration status with kidney failure, especially in areas where scheduled dialysis is not available.