Empirically based recommendations to support parents facing the dilemma of paediatric cadaver organ donation

Summary 

The aim of the study was to describe the challenges donor and non-donor parents encounter before, during, and after the organ donation decision, and to identify parents’ needs and expectations from health care professionals. A further aim was to propose evidence-based recommendations for effectively introducing the option of donation, and supporting families through the grieving process. This study was undertaken as part of a larger research project investigating the experiences of Greek parents who consented or declined organ and tissue donation, using a qualitative methodology for data collection and analysis. The experiences of 22 Greek bereaved parents of 14 underage brain dead children were studied through semi-structured interviews. Parents’ decision-making process was described as challenging and fraught with difficulties both before and after the donation period. Identified challenges were clustered into: (a) personal challenges, (b) conditions of organ request, and (c) interpersonal challenges. Parents’ main concern following donation was the lack of information about transplantation outcomes. Findings led to a list of recommendations for nurses and other health professionals for approaching and supporting parents in making choices about paediatric organ donation that are appropriate to them, and for facilitating their adjustment to the sudden death of their underage child.

Keywords: Paediatric organ donation, Support, Family, Nurse