Understanding Why Parents Say Yes or No to Organ Donation When Their Child Dies: Mixed-Methods Study.
Ellie Crane, Angie Scales, Leah Mclaughlin and 3 others
PMID 40488651WHAT IT FOUND
Parents approached about organ donation as an end-of-life option for their child consented 49% of the time, and the rate fell from 59% to 37%.
Nurse notes recorded timing, distress, beliefs, surgery concerns and limited time after death as factors in choices.
Key findings
01Of 594 families approached, 292 consented to organ donation, a 49% consent rate; consent fell from 59% in 2018/2019 to 37% in 2023/2024.
02In adjusted analyses, each one-year increase in the child's age was linked with 6% higher odds of consent, white ethnicity with 5.03 times higher odds than non-white ethnicity, and donation after brainstem death with 1.78 times higher odds than donation after circulatory death.
03Nurse-recorded notes identified the most common barrier as organ donation prolonging or altering end-of-life timing, and donation after circulatory death allowed only 5 minutes with the child after death; the most frequent facilitator was prior knowledge or discussion of donation.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study analysed nurse notes, not interviews with parents, so it reflects what specialists recorded rather than parents' own accounts. Ethnicity data were missing more often in cases where parents did not consent, which could bias the ethnicity finding. The data are from the UK, and the organ donation pathway may not match other countries. The study is observational, so it can describe associations and themes but cannot show what caused the decline in consent or whether changes would improve it. A change in notification practice near the end of the data period altered when some parents were approached, and the study could not evaluate its effect.
Declared interests
An author was an editor of the journal but did not handle the manuscript; no other conflicts were declared.
The easy way to misread this
Do not read the ethnicity finding as proof that non-white families are inherently less willing to consent. The analysis used nurse notes, not parent interviews, and ethnicity data were missing more often when consent was refused, so the association may be partly a reporting and data problem.