Parents’ experiences of waiting for their child’s transplant: A focus on how healthcare providers can impact the waiting process

Abstract

Waiting for a child transplant is a form of suffering for parents, yet little research has explored how parents experience waiting and how healthcare providers can impact their waiting experiences. The purpose of this article is to investigate how parents experienced the process of waiting for their child’s transplant with a specific focus on the impact of healthcare providers on parents’ experience of waiting. Six parents from four different families participated in interviews and observations. Our narrative analysis suggested that parents had no narrative roadmap to navigate waiting and the importance of healthcare providers’ tailoring the amount and type of medical information to a parents’ needs. We discuss how waiting required parents to be hypervigilant and provide continuity of care for their child, and how this “managerial role” could lead to a loss of trust with their healthcare providers. Parents’ accounts were replete with contradictions, and as an extension of this, waiting was full of contradictions. Findings contribute to conceptual, methodological, and practical work exploring how parents live in deep uncertainty about the future, and how healthcare providers can support parents in their child’s transplantation and other life-threatening illness contexts.