Examining How Adolescent and Young Adult Patients with Biliary Atresia Survive with Their Native Liver to Organize Their Daily Lives

Abstract

Objective: This study outlined the process by which adolescent and young adult patients with biliary atresia survive with their native liver to stimulate interest in and organize their daily lives by themselves. Methods: Data were collected from interviews conducted with nine patients with biliary atresia and analyzed using the modified grounded theory approach. Results: The results of the interviews showed the following findings: The patients needed to stimulate interest in their current and future lifestyle choices, despite the uncertainty of their illness and treatment, while gaining experience in organizing their daily living activities. Furthermore, the status of the parent relationship is complicated by the possibility that a parent could become a living liver donor; therefore, the roles of reconfirmation of affection in the process were identified. Conclusions: The nurses were required to detect any delays in the study process and to introduce a probabilistic view and encourage patients to look at what they currently have control over, while overseeing the process.