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Table 2 Code tree

From: Decision-making at the limit of viability: the Austrian neonatal choice context

Overall theme

Code

Sub code

Coding example

Decision-making

Decision models

Guidelines

“we follow the guidelines ... of the ÖGKJ, uh and uh ... we treat routine- really routinely at 24 + 0, so there’s no question about that if we treat it or not” (Interviewee 4)

Grey zone

“we really try to implement this, this uh new guideline from ... in Austria, yeah. We recognise that in in comparison to the the ... so the guideline in Switzerland and in Germany uh it’s so ... there is a wider uhm ... space ... for for decision making. And and therefore w-we we think we have to offer really a process of uh uh, consultation, counselling in that process. If the mother wants, yeah.” (Interviewee 6)

Psychological support

“the SOP would be that ideally the mother and the father have ... a counselling talk before birth, with the pediatrician and a psychologist. Or let’s say neonatologist and plus psychologist ... it’s not necessarily that both together talk to them, because this is, a resource problem, but both groups have to talk to them, yes. This is the ideal situation.” (Interviewee 1)

Ethics committee

“yeah, we do have, they come together immediately if you need this committee and if. ... the nurses are in this committee, there are people from people different wards who don’t have to do anything with, with the patients, we are in psychologist and so they canmeet immediately and you have a a written m paper afterwards m regarding the discussion and also the decision ...” (Interviewee 2)

Communication with parents

Individualized

“regarding treatment, it’s mostly it’s possible, or always, nearly always to ... work... together with the parents. If you talk to them, if you have enough time for them, if you try to understand them, I think you won’t have a problem, regarding this question.” (Interviewee 2)

Paternalism

“we sometimes really have to fall back and make a paternalistic decision.” (Interviewee 5)

Ethical challenges

Context

Cultural-religious context

“nowadays I think or for me is a-, it’s a challenge that we have so many different cultures. ... and ... or we ... maybe ... don’t understand every religious aspect that’s going on in the parents.” (Interviewee 2)

Social context (typology of parents and guidelines)

“So it’s a language problem, and if you look at the immigrants of the last years, it’s not only language, but it’s a s-social situation, they they don’t, they are not really able to imagine the situation (at NICU) ...” (Interviewee 1)

Legal context

“yes it was a challenge before the ethic commission was established. Now we have uh uh a judge in the commission and uh also uh with Medizinrecht, also, uh medical ...” Interviewee 3)

Obvious question

Uncertainty (vigorousness assessment)

“sometimes you are not even sure, i-if is it ih, a 23 weeker, or is it a 24 weeker for instance” (Interviewee 2)

Tragic question

Best interest

“If it were easy to know what the best interest of the child is, we would not need to discuss it”. (Interviewee 5)

Moral distress

“nurses sometimes want to stop therapy. Because of futility and futility is a very difficult thing.” (Interviewee 1)

Professional virtues

“They must have the feeling for the very small and we ... the very ... tiny and and ... also ill babies. So, it’s a, it’s a kind of ... of ‘I like this’. So, at my ... my, my I – I ha- started my trai- aso my training o-on the NICU. First day on the NICU and I went into the NICU and i said ‘Okay, that’s it’.” (Interviewee 3)