Table 1

Interview schedule

Open questionsPrompts
Demographics and introduction
Check understanding of what the interview is about
Do you have any questions?
About child and family
Please can you start by telling me about (child’s name) and your family?
Were you aware that (child) was unwell before they were born?
When was (child) diagnosed? (where were they at this time—home, hospital, PICU)
What was that like for you and your family?
At that point did you know that (child’s) life would be limited?
What plans or decisions were made at this point about their care?
Who was involved?
What were your wishes and fears at this time?
Child becoming ill and time on PICU
Can you tell me about when (child) became poorly and went to hospital and PICU?
What was that like?/How did you feel?
Did you have plans or discussions about (child’s) admission to PICU?
How many times did they come to PICU?/How long were they on PICU?
What were your wishes and fears at this time?
Decision making and planning on PICU: general
When (child) was being cared for on PICU, can you tell me about your experiences of decision making and planning for their care in the future?
What decisions?/Who initiated?/Discussion?/Who made final decision?/Were you involved? How?/Timing/ Feelings
Plans made? You?/Medical team(s)/Together?/formal or informal?/Timing/ Feelings
Did you have any wishes or fears about decisions being made or planning about (child’s) care at this time?
EOLC/PC decisions, ACP and planning on PICU
When did you realise/understand that (child) was going to die?
Did you make plans for their end of life care?
At this point did you have any idea about what ‘end of life care’ might mean or what it might look like?
What were your wishes and fears at this time?
Was a decision made to limit treatment/withdraw active treatment, for example, taking the tube out?
How was this decision made?
ACP specific
When (child) was on PICU did you/were you offered the chance to complete an ACP?
Did you know what it was?
What was the process like?/How did it feel?
Did it get reviewed at any time?
What do you think was the most useful thing about the ACP? Were there any problems with using one?
What were your hopes and fears at this time?
If not:
Do you know what an ACP is?
Do you think you would have liked to have been offered the opportunity to complete one?
Do you think you would have used it?
What do you think would be the most useful thing about an ACP document?
What do you think might be the problems with an ACP?
Around time of death and beyond
Do you feel able to describe what happened when (child) died?
What was most important to you at this time?
Who was there? Had this been planned previously? What decisions about who was present did you make?
Who helped you or supported you?
Did time/planning/ discussions influence the decisions made? How?
Are there any plans/decisions that you would make differently?
Is there any advice that you would give other parents facing a similar situation in the future?
  • ACP, advanced care plan; EOLC, end of life care; PC, palliative care; PICU, paediatric intensive care unit.