Early Steps of the Kidney Transplant Process: What Are the Experiences of Dialysis Social Workers?

Abstract

Introduction: Dialysis social workers (DSWs) educate and advocate for end-stage kidney disease (ESKD) patients during the kidney transplantation (KT) process. However, little is known about the barriers DSWs face as they help patients get waitlisted and how to best support their efforts. We interviewed DSWs across New York (NY) State to examine their experiences, supports, and challenges in helping dialysis patients progress through KT education, referral, and evaluation.

Methods: We conducted semi-structured interviews with DSWs in NY State who had participated or expressed interest in a program designed to educate DSWs about KT and used rapid qualitative analysis to identify themes.

Findings: We interviewed 17 DSWs. Seven themes emerged: (1) DSWs report involvement in KT interest assessment, education, referral, and evaluation support, (2) DSWs report varying nephrologist support in helping patients progress to KT, (3) DSWs perceive social support and adherence as key factors in KT centers' eligibility determinations, (4) DSWs have knowledge gaps around living donation and appreciate learning about KT from transplant centers and non-profit organizations, (5) Patients express KT concerns and DSWs counsel them about these concerns, (6) DSWs report solutions to help patients complete KT evaluation appointments, and (7) DSWs report communication deficiencies between dialysis centers and transplant centers, and patients.

Conclusions: Education for DSWs, support from nephrologists, and resources to help patients complete KT evaluation steps facilitated DSW engagement throughout the pre-transplant process, underscoring the need for multi-level, cross-disciplinary programs to support these efforts.

Keywords: dialysis; live donor kidney transplantation; transplant access; transplant education.