Table 4 Strategies to overcome conceptual barriers

a) Early implementation of PPC

i) Timely introduction

Perhaps the fact of intervening sooner would create less fear. When people hear “palliative care” they immediately think: “Ah that means: death”. (Nurse, speaker 8, center 2)

b) The use of synonyms

ii) Euphemisms

I like the term “accompagnement” in these situations (…) it means “being with” (…) “palliative” evokes, in my opinion, something a priori negative and I do not feel comfortable using it. (Nurse, speaker 3, center 1)

For me, more than using this word [PPC], it’s more about contextualizing it together with the parents and the child. I think that the child and the parents have a different view on the situation. We must try to make them understand that knowing that a disease is incurable does not mean stop giving care, but entails a different way of caregiving (…) one should use the word “comfort care”, for me that is more appropriate (Nurse with PPC specialization, center 2)

c) Explicit use of the term PPC

i) De-bunk the stigma

We need a common language (…) You have to call a cat ″a cat″ (…) among the general public there is maybe a kind of ″mystification″ of palliative care, in the sense of palliative equals death, but it is our task as professionals to finally inform the public on the federal level and the rest. (Nurse, speaker 1, center 1)

ii) Bring clarification to family & team

The concept (…) should bring clarification to the treatment team and the patient. Therefore I actually understand palliative care as non-curative care. That is a crucial point for me, which I then need to discuss with the parents so that we know where we stand. (Physician, speaker 2, center 4)

We on the nursing level use the word (…). We say: «the doctors have talked with the parents; we are in a palliative care situation now». I think for us this word signifies a change of attitude in the perception of the type of care we will provide. (Nurse, speaker 4, center 2)

d) “Word of mouth”

i) Family satisfaction

We deprive ourselves a little of the opportunity to give them a chance (…) In the family room I see how much families speak to each other. Every time a family has really benefitted and been satisfied, well, this information goes around. Families speak a lot among them (Social assistant, speaker 2, center 2)

e) Support of specialized PPC team

i.) Benefits of specialist PPC team

I think we would benefit to have a systematic support [external PPC service] (…) to bring a bit of order in the discussion, in the ideas, in the emotions when preparing to pass from curative to palliative care. (Nurse, Speaker 3, center 1)

ii.) Drawbacks of specialist PPC team

There are different models in Switzerland and in the world, also in pediatrics, on this subject matter, with some hospitals having specialized teams in the background (…) I think that it is not desirable (…) there are not so many cases in oncology (…) it would be an exaggeration to have such a team (…) it would also create certain problems. (Physician, speaker 1, center 4)