The Physical and Psychosocial Adaptation Experiences of Youths Diagnosed with Biliary Atresia and Treated Using the Kasai Procedure at Infancy

Biliary atresia (BA) is a disease of the liver and bile ducts. Newborns with BA must undergo the Kasai procedure immediately after birth to survive. Postoperative nutrition, portal hypertension, and splenomegaly affect prognosis on an ongoing basis. With recent advancements in medicine and health care quality, children treated for BA can survive into adolescence and even early adulthood. This qualitative descriptive study explores how these youths have adapted, and their concerns as they continue to age. A total of 13 patients with BA aged 16-24 years were recruited using purposive sampling at a gastroenterology outpatient clinic in northern Taiwan. In-depth semi-structured interviews were conducted with each participant. The participants' life experiences were extracted into three themes via inductive qualitative content analysis: (1) being responsible for one's dietary regimen, (2) adjusting one's mindset about the illness, and (3) facing long-term challenges. Healthcare professionals can provide care recommendations tailored to the developmental needs of this patient group during regular follow-ups, assist them with self-care management and with accepting their uniqueness, provide information, and discuss their future careers and family plans.