Living-Related Donors' Quest for Information before Donation

Abstract

Context Providing potential living-related liver donors with all the necessary information before donation can be challenging. What information donors need and are not getting during the evaluation phase has not been defined. Objective To increase understanding of the everyday life of living-related liver donors and to suggest educational strategies that could be used by transplant centers during the evaluation process. Design An interpretive ethnographic study based on a symbolic interactionism approach. All participants were interviewed; some were reinterviewed in order to better understand their experience as a donor. Setting Interviews took place in the clinic, the donor's home, the donor's workplace, and in coffee shops depending on each donor's preference. Participants A total of 13 parents who had donated the left lower lobe of their liver to their son or daughter at least 1 year ago. Main Outcome Measures Interviews were analyzed by using qualitative research methods of coding, summarizing, and discussing concepts. Results The donors viewed the donation as a life-changing event, and 11 of 13 donors described seeking further information in addition to the information given to them by the transplant center. Searching the Internet, reading research articles, and speaking to other donors were activities demonstrated by the participants.