Understanding Why Parents Say Yes or No to Organ Donation When Their Child Dies: Mixed-Methods Study

Area of Science:

• Pediatric Organ Donation and Transplantation
• Bioethics and End-of-Life Care
• Health Services Research

Background:

• International shortage of pediatric organs for transplantation.
• Parental consent is a significant limiting factor in pediatric organ donation.
• Limited research exists on parental decision-making in pediatric organ donation.

Purpose of the Study:

• To explore parental consent and declination for pediatric organ donation.
• To identify factors influencing parental decision-making in this context.
• To develop theories on parental consent likelihood in pediatric organ donation.

Main Methods:

• Mixed-methods analysis of quantitative and qualitative data from 594 UK cases (2018-2024).
• Quantitative analysis of clinical/demographic variables and regression.
• Qualitative content analysis of parental discussions and decision-making notes.

Main Results:

• Increased child's life-years (6% per year), white ethnicity (5x odds), and brain death donation (1.78x odds) correlated with higher consent.
• Barriers included perceptions of prolonged end-of-life care, cultural/religious beliefs, and surgical needs.
• Facilitators included altruism, legacy creation, and prior knowledge; parents categorized into four decision groups.

Conclusions:

• Findings offer new insights into factors shaping parental consent for pediatric organ donation.
• Tailored approaches addressing emotional, logistical, religious, and procedural concerns are needed.
• Developing specific support strategies can enhance consent rates and family-centered care.