Lived experience of pediatric liver transplant recipients

Abstract

This study aims to uncover the experiences of pediatric liver transplant recipients. Liver transplantation was approved in 1983, but little is known about this extraordinary technological therapy from the pediatric recipient's perspective. Phenomenological methods explore the meanings and shared practices embedded in a situation through language. Using this method establishes a safe environment for children to reflect on their lives. In Being and Time (1927) Heidegger tells us that there are two types of covered-upness, undiscovered and buried. The entering question What is the lived experience of pediatric recipients undergoing liver transplantation? aims to uncover the background of everyday practices of pediatric liver transplant recipients. Interpretation of the text and art work revealed four themes from the nine recipients---connections BEING the same and different, ordinary and extraordinary experiences, invasive procedures: "It really hurted and I have to scream" and parental responses: "Mommy would be sad." The children revealed stories about their everyday lives at school including success and failure in the academic world and the social sphere. Their normal lives included the following activities, frequent clinic visits, taking daily medicine, and regular blood drawing contrasted with Brownies, family vacations and making friends. The children expressed pride in their ability to live with new responsibilities. The adolescents offered the following advice to potential recipients, "take one day at a time and keep faith in yourself." These shared experiences led me to reflect on the pedagogical relationship between children and providers, a relationship that transforms my life as well as theirs. Practitioners shape the lives of recipients by developing a tactful relationship supporting their choices in an uncertain world. They face a daily challenge of accomplishing typical developmental tasks while surviving a life threatening illness. Finally, I proposed nursing implications that inform practitioners about caring for children who are recipients of liver transplantation in the midst of technology.