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.

BACKGROUND: This 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.

METHODS: A 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.

FINDINGS: Five 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.

DISCUSSION: Parental 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 PRACTICE: Care 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.