The Living Donor Navigator Program Provides Support Tools for Caregivers.

INTRODUCTION: The Living Donor Navigator (LDN) program is one of several initiatives designed to help transplant candidates identify living donors with the help of a friend or family member advocate to speak on their behalf. More than half of advocates in the LDN program were the spouse or parent of the candidate and served in a caregiving role. Caregivers for patients awaiting transplantation have reported poorer quality of life than the general population, suggesting more support is needed for this vulnerable group. The purpose of this study was to understand whether the LDN program met the needs of advocates who were also caregivers for the transplant candidate. METHODS: We performed a supplementary secondary qualitative analysis of a parent study conducted December 2017-January 2018 with 9 advocates who participated in the LDN program. Transcripts were reanalyzed from focus group discussions, concentrating on comments about caregiving or made by caregivers. Using manual coding and reflexive thematic analysis, we identified broad codes and major themes. FINDINGS: Our re-analysis revealed one theme overlapping with our previous analysis (Support) and 2 new themes specific to caregiver advocates: Quality of Life and Fear. Caregivers agreed that the LDN program equipped them with tools to address these areas and best serve their simultaneous caregiver/advocate roles. DISCUSSION: These analyses demonstrated that those who served as advocate and caregiver derived a benefit from the LDN program but had distinct needs from other advocates. These findings can inform continued refinement of the program and expansion to support needs of caregiver.

Enhanced Advocacy and Health Systems Training Through Patient Navigation Increases Access to Living-donor Kidney Transplantation.

BACKGROUND: To date, no living donation program has simultaneously addressed the needs of both transplant candidates and living donors by separating the advocacy role from the candidate and improving potential donor comfort with the evaluation process. We hypothesized that the development of a novel program designed to promote both advocacy and systems training among transplant candidates and their potential living kidney donors would result in sustained increases in living-donor kidney transplantation (LDKT). To this end, we developed and implemented a Living Donor Navigator (LDN) Program at the University of Alabama at Birmingham. METHODS: We included adult patients awaiting kidney-only transplant in a retrospective cohort analysis. Using time-varying Cox proportional hazards regression, we explored likelihood of living donor screening and approval by participation in the LDN program. RESULTS: There were 56 LDN participants and 1948 nonparticipants (standard of care). LDN was associated with a 9-fold increased likelihood of living donor screenings (adjusted hazard ratio, 9.27; 95% confidence interval, 5.97-14.41, P < 0.001) and a 7-fold increased likelihood of having an approved living donor (adjusted hazard ratio, 7.74; 95% confidence interval, 3.54-16.93; P < 0.001) compared with the standard of care. Analyses by participant race demonstrated higher likelihood of screened donors and a similar likelihood of having an approved donor among African Americans compared with Caucasians. CONCLUSIONS: These data suggest that both advocacy and systems training are needed to increase actual LDKT rates, and that LDN programs may mitigate existing racial disparities in access to LDKT.

A Qualitative Assessment of the Living Donor Navigator Program to Identify Core Competencies and Promising Practices for Implementation.

INTRODUCTION: The best strategy to increase awareness of and access to living kidney donation remains unknown. To build upon the existing strategies, we developed the Living Donor Navigator program, combining advocacy training of patient advocates with enhanced health-care systems training of patient navigators to address potential living donor concerns during the evaluation process. Herein, we describe a systematic assessment of the delivery and content of the program through focus group discussion. METHODS: We conducted focus groups with 9 advocate participants in the Living Donor Navigator program to identify knowledge, skills, and abilities needed for both advocates and navigators. We focused on 2 organizational levels: (1) the participant level or the advocacy training of the advocates and (2) the programmatic level or the support role provided by the navigators and administration of the program. FINDINGS: From 4 common themes (communication, education, support, and commitment), we identified several core competencies and promising practices, at both the participant and programmatic levels. These themes highlighted the potential for several improvements of program content and delivery, the importance of cultural sensitivity among the Living Donor navigators, and the opportunity for informal caregiver support and accountability provided by the program. DISCUSSION: These competencies and promising practices represent actionable strategies for content refinement, optimal training of advocates, and engagement of potential living donors through the Living Donor Navigator program. These findings may also assist with program implementation at other transplant centers in the future.