UCSF

ABSTRACT

LIVING-RELATED LIVER DONOR'S PERCEPTIONS OF LIFE AFTER DONATION

Annette Sue Nasr RN, PhD(c)

Purpose: The purpose of this interpretive research study was to understand the perceptions of life experiences of individuals who participated in living-related liver donation (LRLD). The specific research question of this study was: What is the impact of LRLD on the physical, emotional, and familial lives of the donor post-donation?

Background: Pediatric patients suffering from end stage liver disease (ESLD) must depend on cadaveric liver donation or living liver donation in order to sustain life. According to the United Network of Organ Sharing (UNOS) approximately 85,000 candidates are listed for organ transplantation, 17,000 are listed for liver transplantation. Cadaveric liver donation cannot meet the demand presented by children with ESLD, therefore alternatives to cadaveric donation must be established. One alternative to cadaveric donation is living liver donation. Historically there have been over 2,000 living liver donors in the United States (UNOS, 2004), most often a parent of the child with ESLD.

Methods: This interpretive study used ethnographic methods to gather information from 13 living parental donors regarding their physical, emotional, and familial lives since their donation. Donors were recruited from two transplant centers on the western coast of the United States. Interviews were audio taped and transcribed. Data was analyzed in order to produce themes and revealed specific dimensions of these phenomena. This study was approved by the Internal Review Board at Stanford University as well as the Committee on Human Research at UCSF.

Results: The overarching theme that expressed the impact that LRLD had on the donor was that of transformation. Within this theme of transformation major categories included: a self-awareness process, a re-clarification of familial relationships especially with the child who received the donated organ, and a change in perspectives on community.

Implications: Information developed in this study can be used to prepare the donor during the pre-transplant phase as well as to develop interventions to facilitate the adjustment of donors post-transplant. This study will provide nurses and healthcare professionals working in the field of transplantation insights about the issues that LRLD face.