To be or not to be a living donor: questionnaire to parents of children who have undergone renal transplantation

Between 1981 and 1994, 67 transplantations were performed in 59 children below 16 years of age at Huddinge University Hospital. In most of the cases, one of the parents was the donor. The aim of this study was to evaluate how the transplantation influenced the parents. One hundred sixteen individual questionnaires were sent out to the donor parents and to the parents who for different reasons had not been donors. Of special interest was to investigate the emotional reactions, the social consequences, the relationship to the child, and the parents' attitudes toward donation. Thirty-five donors and 41 nondonors replied. The majority of both donors and nondonors were satisfied with the medical information. The nondonors expressed more stress and anxiety before the transplantation. More than half of the donors experienced the operation as more painful than they had expected. Despite this fact, the nondonors showed significantly more psychosomatic/psychiatric symptoms than the donors after the operation. The donors reported an improved relation to the recipient child after the transplantation to a greater extent than the nondonors. Half of the donors reported an improved self-esteem after the donation. None of the donors regretted their donation and all of them would do the same again. This study indicates that ethical and psychological risks in parental kidney donation should not be regarded as a major obstacle. However, irrespective of the parents being a donor or not, they wanted more psychosocial support both before, during, and after the transplantation.