How Parents of Adolescents and Young Adults with Biliary Atresia Surviving with Native Livers Transfer the Responsibility of Medical Treatment to Their Children in Japan

Abstract

BackgroundThis study examines how the parents of adolescents and young adults with biliary atresia, surviving with their native livers, transfer medical treatment responsibility to their children, and how becoming a living liver transplant donor affects this process. The basis for the study was that becoming a living liver transplant donor may influence the transfer of responsibility. MethodsA qualitative, descriptive design was employed using a modified grounded theory approach. Data were collected from eight parents from November 2016 to August 2017 through semi-structured interviews conducted in two Japanese hospitals. Interpretive analysis from the viewpoint of the analytical theme and analytical focus person was conducted, resulting in a diagram and storyline explaining the process. FindingsFive categories were generated from one father and seven mothers (aged 40–60 years) of outpatients (aged 17–25 years): parental ability to cherish the child's “now” (live in the moment); put the brakes on their child's life; learn as they go; leave the child's life to the child; and openly express reservations about becoming a living liver transplant donor for their child. DiscussionParental transfer of responsibility for treatment may be influenced by close-knit parent–child relationships, perception of the child's growth, and parental concern about becoming a living donor. Application to practiceCare providers should understand parent–child relationships and the parents' concerns about becoming living donors, thereby enabling them to recognize that medical treatment control must be relinquished to foster children's autonomy as adults.