Table 1 Background of the participants

Demographics of the parents

 Survey filled in by

Both parents

Mother only

Father only

Unknown

 Highest degree of education

Low (maximal secondary education)

Medium (post secondary non academic)

High (academic/college or university)

Unknown

 Median age of the mother (at delivery)

Perinatal data

 Any prior pregnancies

Prior miscarriage

Prior extreme premature birth (GA 24–26 weeks)

Prior premature birth (GA 27–37 weeks)

Prior stillborn child

 Timing of the counseling conversation

At day of birth

1 day before birth

2–3 days before birth

>3 days before birth

Do not remember

Decision-making characteristics

 Decision made on initiating care

Active treatment

Comfort care

Other (for example, wait and see)

 Outcome (in case of active treatment)

Survivor

Death

Both (twin pregnancy with one survivor and one deceased)

 Self-reported child morbidity (in case of survival)

Any physical disabilities (minor-major-severe)

Any intellectual disabilities (minor-major-severe)

Decision-making information

 Persons deciding whether or not to initiate active care

Parent(s)

Joint decision parent(s) and doctor, parental opinion decisive

Joint decision parent(s) and doctor, both equally decisive

Joint decision parent(s) and doctor, doctors’ opinion decisive

Doctor

Do not remember

Other (for example, ‘obvious’ or ‘unclassifiable’)

Parents who felt like they had a choice on whether or not to initiate active treatment for their baby (% yes)