Table 2 Example of the analysis process

‘Because this concept is very scary and it’s so [...] yes I think then [...] that I imagine maybe many parents think so too. Then you hear that, “ok, now we are in a palliative phase”, then [...] I think a lot of people can probably think, “ok then it’s death that’s the outcome, now we’ve got it”. [...] It cannot change then, it cannot be reversed. It’s a bit of a scary concept’.

The concept is scary. Many parents think so, too. Once hearing that the child is in a palliative phase, many likely think that death is the outcome. Once they have received that message, it cannot be changed.

Scary concept for both HCPs and parents, associated with death

A concept still associated with death and dying

Frightening concept that evokes negative emotions

‘But for many, the fact that we mention the word palliation will still be completely dramatic, that we could risk them disappearing out the door’.

Mentioning the word ‘palliation’ can be dramatic, and there is a risk of losing parents.

Dramatic word, risk that parents are lost

HCPs’ responsibility for introducing and using the concept and obtaining a common meaning

‘But that term palliation [...] I do not think we mentioned it today. And I do not feel like it either. Because I think it’s a concept that [...] I envision a cancer ward with completely terminally ill cancer patients. In my head, it’s like that, sorry’.

The concept of PC is associated with cancer wards and terminally ill cancer patients.

PC associated with terminal illness

A concept still associated with death and dying