Abstract

BACKGROUND: The real causes of organ donation refusal decisions of parents after pediatric brain death and the factors that most influence their decisions are not known sufficiently in Turkey. This study aimed to investigate the detailed factors that may be relevant to parents’ refusal, including their education level and knowledge about organ donation.

MATERIAL AND METHODS: Between August 2017 and September 2018, parents who had been asked to allow organ donation from their deceased child were included in this study. An appointment for a home visit for administration of a questionnaire was arranged with the families for the purpose of giving their consent to the study. The questionnaire included items on parents’ demographic data, education level, knowledge about organ donation, and the underlying causes of donation refusal.

RESULTS: The study included 24 parents (12 mothers and 12 fathers) of 13 pediatric patients because the mother of one patient and the father of another died before their child’s brain death. The rate of illiteracy in the parents was 33.3% and only one (4.2%) parent had graduated from university. The rate of knowledge about organ donation was 70.9%, and the most common source of information was television programs (35.9%). All parents remarked on their insufficient information about organ donation. The two most common reasons for organ refusal were unwillingness to allow damage to the child’s internal organ integrity (28.7%) and thinking that their child would feel pain at the time of organ donation (21.2%).

CONCLUSIONS: The most important reasons relevant to parents’ organ donation refusal are the parents’ low level of education and insufficient information about brain death and organ donation. The unwillingness to allow impairment of their child’s internal organ integrity and thinking that their child would be in pain at the time of organ donation were the most common reasons.

Keywords: Brain Death, Child, Parents, Adolescent, Child, Preschool, Decision Making, Health Knowledge, Attitudes, Practice, Infant, Intensive Care Units, Pediatric, Organ Transplantation, Tissue and Organ Procurement, Turkey