Vampire Problems in Pediatric Kidney Transplantation-Navigating Transformative Experiences and Informed Consent.

Abstract

There are clear legal and ethical requirements for informed consent in pediatric kidney transplantation. While much is done pre-transplant to educate patients and families on the risks and benefits of transplantation and its associated medical therapies, it can be difficult to truly prepare them for the transformative nature of the transplant- how it will change their lives, their families' lives, and their view of themselves and their world. Using the lens of "transformative experiences" as described by philosopher L.A. Paul, we describe the transformative nature of pediatric kidney transplantation. We encourage the health care team to acknowledge this transformative experience, and outline practical strategies including shared decision making and patient and family engagement to help communicate with families undergoing this transformation, both before and after pediatric kidney transplantation.