Understanding why parents say yes or no to organ donation when their child dies: a mixed method study

Introduction: There is a shortage of organs for children. In the UK, consent rates are declining. The emotive nature of a child’s death makes Paediatric organ donation (OD) complex and unique. There is limited research on family experiences in this context.
Objectives: To understand why parents consent to or decline OD after their child’s death.
Methods: Data were analysed from 594 families (2018–2024), including (1) a qualitative analysis of anonymised clinical notes on parental decision-making discussions and (2) statistical analyses of clinical and demographic variables.
Results: Parental non-support was influenced by the perception that OD prolonged or altered end-of-life care, cultural and religious beliefs, and the need for surgery. Factors supporting OD included altruism, creating a positive legacy, and prior knowledge of OD. Families fell into four decision groups: those who immediately consented, immediately declined, hesitated but consented, and hesitated but declined. Concerns were similar between hesitant groups, regardless of the final decision. Regression analysis indicated that each additional year of the child’s age increased consent likelihood by 6% (p<0.001), white families were 5 times more likely to consent than non-white families (p<0.001), and consent was 1.8 times more likely when donation after brainstem death was possible compared to circulatory death (p=0.003).
Conclusion(s): This is the largest UK study on Paediatric OD to date and provides new information about which parents are more likely to consent to OD in specific situations. This study highlights critical factors shaping parental decisions and underscores the need for tailored approaches that address the emotional and logistical complexities parents face. Developing specific support strategies that acknowledge contextual, religious, and procedural concerns may enhance consent rates and facilitate a more bespoke family-centred approach to Paediatric OD and palliative care.