Perspectives of Caregivers of Kidney Transplant Recipients and Transplant Candidates About Kidneys From Donors With Hepatitis C Virus Infection

Abstract

Rationale & Objective

Kidneys from deceased donors with active hepatitis C virus infection (HCV-RNA+) are commonly transplanted into HCV-negative recipients, yet little is known about the perspectives of their caregivers. This study’s objective was to better understand caregiver experiences about the transplantation of HCV-RNA+ donor organs, with particular attention to caregiver educational needs and perception of risks.

Study Design

Cross-sectional study at 2 centers.

Setting & Participants

We conducted a qualitative study of 20 adult caregivers of patients in the THINKER-NEXT trial, in which patients consented to receive kidney transplant offers from HCV-RNA+ donors. At the time of the interview, participants were either providing support to waitlisted patients or to recipients of HCV-RNA+ donor kidneys.

Analytical Approach

Semistructured interviews explored caregiver knowledge, concerns, and experiences related to HCV infection and transplantation. Transcripts were coded thematically using an iterative, consensus-based approach.

Results

Caregivers described 4 central themes: 1) patient and caregiver dynamics shaped transplant decisions and caregiving responsibilities; 2) knowledge and attitudes about HCV influenced acceptability of organs with HCV, with initial concerns often offset by the desire to avoid dialysis; 3) privacy, stigma, and the strength of social support networks influenced willingness to disclose transplant details; and 4) cautious optimism and uncertainty in preparing for life after transplant. Many caregivers expressed a need for clearer guidance on HCV risk, caregiver safety, and posttransplant care.

Limitations

Transferability may be limited because participants were caregivers of clinical trial participants at academic medical centers.

Conclusions

Caregivers were supportive of transplantation from donors with HCV infection. However, they identified gaps in education and posttransplant support. Integrating caregiver perspectives into education, particularly about infectious risk mitigation and caregiver safety, may better enable patients and caregivers to thrive after transplant. These insights are particularly relevant as practices evolve toward transplanting organs with diverse infectious risks, including xeno-organs.

Plain-Language Summary

Some kidney transplants come from donors with infections such as hepatitis C virus (HCV) infections, but little is known about the experiences of caregivers of patients considering these organs. This study explored the experiences of 20 caregivers who had received kidney transplants or were on the waiting list. All the patients had received kidney transplants from donors with active HCV infection or had agreed to consider offers of kidneys from donors with HCV. Caregivers generally supported the practice of transplanting kidneys from donors with the HCV infection because of a desire to improve their patients’ quality of life. However, many caregivers expressed a need for clearer guidance on the risks of HCV infection, caregiver safety, and posttransplant care.