Rationale b) family/friends of group (a); b) kidney transplant HCPs.Analytical Approach: Inductive analysis based in constructivist grounded theory.Results: 41 participants were interviewed (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 describing findings which appeared to be in opposition, but which were experienced or delivered simultaneously.Patients experienced failure as an inevitability and a surprise, and felt both responsible for and a lack of control over the transplant outcome.HCPs identified a need for parallel planning; simultaneously prolonging transplant survival and J o u r n a l P r e -p r o o f planning post-transplant treatment. Limitations: Adult participants only.Conclusions: Our study identified targets for improving the experiences of people with transplant failure, related to explicit communication, navigating uncertainty, and parallel planning. J o u r n a l P r e -p r o o f Plain-language summaryWe interviewed people who were experiencing or had experienced kidney transplant failure, their family and friends, and healthcare professionals (HCPs) about their experiences of living with and managing this failure.Patients described transplant failure as a constant threat, but didn't 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.
Venter et al. (Sun,) studied this question.