Experiences With Kidney Transplant Among Undocumented Immigrants in Illinois: A Qualitative Study

RATIONALE & OBJECTIVE: Noncitizen, undocumented patients with kidney failure have few treatment options in many states, although Illinois allows for patients to receive a transplant regardless of citizenship status. Little information exists about the experiences of noncitizen patients pursuing kidney transplantation. We sought to understand how access to kidney transplantation affects patients, their family, health care providers, and the health care system. STUDY DESIGN: A qualitative study with virtually conducted semistructured interviews. SETTING & PARTICIPANTS: Participants were transplant and immigration stakeholders (physicians, transplant center and community outreach professionals), and patients who have received assistance through the Illinois Transplant Fund (listed for or received transplant; patients could complete the interview with a family member). ANALYTICAL APPROACH: Interview transcripts were coded using open coding and were analyzed using thematic analysis methods with an inductive approach. RESULTS: We interviewed 36 participants: 13 stakeholders (5 physicians, 4 community outreach stakeholders, and 4 transplant center professionals), 16 patients, and 7 partners. The following seven themes were identified: (1) devastation from kidney failure diagnosis, (2) resource needs for care, (3) communication barriers to care, (4) importance of culturally competent health care providers, (5) negative impacts of policy gaps, (6) new chance at life after transplant, and (7) recommendations for improving care. LIMITATIONS: The patients we interviewed were not representative of noncitizen patients with kidney failure overall or in other states. The stakeholders were also not representative of health care providers because they were generally well informed on kidney failure and immigration issues. CONCLUSIONS: Although patients in Illinois can access kidney transplants regardless of citizenship status, access barriers, and health care policy gaps continue to negatively affect patients, families, health care professionals, and the health care system. Necessary changes for promoting equitable care include comprehensive policies to increase access, diversifying the health care workforce, and improving communication with patients. These solutions would benefit patients with kidney failure regardless of citizenship.