Family experience of waiting for living donor liver transplantation: from parental donor perspective.

AIMS AND OBJECTIVES: The aim of this study was to investigate from the perspectives of the donor parents of children with biliary atresia, the essence of family experiences during the period when waiting for a living donor liver transplant. BACKGROUND: Living donor liver transplantation is a new hope for children and families when the child suffers from biliary atresia. It is obvious, during the waiting period, for a family with a child undergoing living donor liver transplantation, that the process has a serious impact and there is a need for them to be well-prepared. DESIGN: A descriptive phenomenological design was used in this study. METHODS: Nine donor parents from a medical centre in Taiwan participated in this study. The inclusion criteria were that the parent had a child with biliary atresia, that the child had received living donor liver transplantation over the last year and a half and that the parent was the living donor for child's liver transplantation. An open in-depth interview technique encouraged the parents to reflect on their experiences as the process raised their feelings to a conscious level. The data were analysed using the Colaizzi's approach. RESULTS: This study explores the essence of families undergoing the waiting period for living donor liver transplantation surgery from the point of view of the donating parents. Five themes emerged: (1) surgery as hope of rebirth, (2) negotiating the decision to have surgery, (3) the selection of the donor to achieve family welfare, (4) preparing and planning for the surgery and (5) worry over the impact of the surgery. CONCLUSIONS: The results demonstrate that the parents' experiences included a variety of domains: hope of rebirth, mental negotiation while deciding on surgery and choice of donor, coping with the preparation for surgery and the possible impact on the family of the surgery. RELEVANCE TO CLINICAL PRACTICE: The findings indicated that nursing professionals should provide family-centred care to assist the family with the steps needed to move toward surgery.

Biliary atresia.

Care of the child with biliary atresia is a challenge for pediatric nurses. The cause of the disease is not known, and new diagnostic tests and treatment options are continually being developed. This article addresses fundamental issues specific to the care of children with biliary atresia. In order to understand the clinical manifestations and the treatment rationale, pathophysiology and theories of etiology are discussed. Nursing care of the child and issues regarding the teaching and support of the family system are addressed, with suggestions for independent reading.