Experiences and Management of People With a Failing Kidney Transplant: Findings From the IN-FAKT Study

Transplant failure is associated with a morbidity burden, increased mortality, and poor quality of life. We have a limited understanding of how patients prepare for transplant failure, when they do so, and what experiences and priorities are relevant to clinical management decisions when transplants are failing. This study investigated the experiences of living with and managing kidney transplant failure among patients, families and friends, and health care professionals (HCPs).

Qualitative semistructured interview study.

Three groups of adults sampled from 3 UK hospitals: (1) people with a failing kidney transplant or one that had failed in the last year; (2) family/friends of group 1; (3) kidney transplant HCPs.

Inductive analysis based in constructivist grounded theory.

We interviewed 41 participants (15 people with failing/failed transplants, 9 family/friends, 17 HCPs). We identified 8 theoretical categories under 3 headings. First, the experience of waiting: (1) a constant threat: anticipation of failure; (2) lack of preparedness; (3) liminality: an indeterminate and in-between state. Second, shaping conversations about failing transplants: (4) navigating uncertainty; (5) responsibility and control; (6) failing to acknowledge failure: the elephant in the room. Third, the focus on the failing transplant: (7) maximizing mileage and missed opportunities; (8) the ripple effect of failure and family suffering. "Duality" emerged as the core category to describe findings that appeared to be in opposition but were experienced or delivered simultaneously. Patients experienced failure as both an inevitability and a surprise, and they felt both responsible for and as having no control over the transplant outcome. HCPs identified a need for parallel planning: simultaneously prolonging transplant survival and planning posttransplant treatment.

Adult participants only.

Our study identified targets for improving the experiences of people with transplant failure, related to explicit communication, navigating uncertainty, and parallel planning.

We interviewed people who were experiencing or had experienced kidney transplant failure, their family and friends, and health care professionals (HCPs) about their experiences of living with and managing this failure. Patients described transplant failure as a constant threat, but they did not feel prepared for it. Patients and their families have many questions including: When will the transplant fail? How will it happen? Why did it fail? HCPs are unable to fully answer these questions, and patients feel responsible for what happens to their transplant. Our research shows that talking about transplant failure is difficult for patients and HCPs and that there are missed opportunities to prepare and support people.