Daily Life of Adolescents with Biliary Atresia Surviving with their Native Liver: Change Process of the Patient-Parent Relationship

The state of awaiting liver transplantation causes cognitive uncertainty for a patient [1]. Most children undergoing liver transplantation are those with biliary atresia, and most liver transplants to a child are carried out by a donation from their parents in Japan [2,3]. The ambiguous nature of biliary atresia and the possibility of living donor liver transplantation (LDLT) cause suffering to not only patients but also parents who are candidate donors [4]. In addition, when patients reach adolescence, the relationship between children and parents changes, which might make their suffering more complicated. Therefore, this study examines whether adolescent patients and their parents experience suffering in their daily lives, how this shifts during the adolescent period, and how this suffering relates to the nature of biliary atresia and the future possibility of LDLT. Specifically, this short report describes the characteristics of the daily lives of adolescents with biliary atresia surviving with their native liver, and those of their parents, as well as the patient-parent relationship.