Table 1 Theme 1: Family empowerment

Sub-theme 1: Giving words and clarity

I guess I feel like it does break it down a bit more and it gets them thinking about the types of things that may be asked of them or the types of questions that they might be asked to think about because families will often say, “You know, I’m sure I have a million questions but I don’t know what they are” so this kind of helps give words to what some things that might be on their mind and I guess it empowers them to think that they can be curious in this process and they don’t just have to take the information and they can actually ask more questions (Group interview)

You know, they’re trying to understand these things that are far-fetched and unusual to them and unheard of and so giving them something they can sort of hold on to sometimes might kind of help them kind of ground themselves (Organ and tissue donation nurse coordinator)

I guess it’s helping people make their own clarity about what’s actually happening here. (Chaplain)

Definitely, bridges the gap a little bit and maybe gives people the chance to actually think if there’s a publication about it, it’s official? (Educational play therapist)

I think it would help clarify some of the things we’re trying to talk about. (PICU nurse)

… I asked her, “I’m sure you have questions, you probably don’t know what they are” and she said, “Yeah, that’s right. My head’s swimming” and I think that just seeing that page would be really helpful to streamline some of their ideas. (Group interview)

Sub-theme 2: Conversation Starter

I like on the online version the language of like how can you start a conversation, how can you answer question and the questions that were tab options on there I thought were really useful and I can imagine myself asking those questions (as a parent) (Educational play therapist)

it could be a good conversation starter a good introduction to some of the things that they were feeling, (Group interview)

I think it could help open up conversations for people who may be feel a bit less confident. (Group interview)

It’s a conversation starter. And then people can find their own language. (Paediatric intensivist)

Sub-theme 4: A resource to take away

In these meetings [parents] get a lot of information, a lot of very distressing, very new and unfamiliar information and you kind of tell sometimes, they’re not really taking it all in and you never know what they’ve heard and what they haven’t heard. So I think they can sometimes really shut off about, like they just don’t want to hear the technical things. They just know the child’s going to die, they don’t need to hear how it’s going to happen sometimes but I think having something they can read, it might help them to understand the process a bit better. (Organ and tissue donation nurse coordinator)

The written format enables someone to go back and review. People will always find it difficult to take everything in one go, especially if they’re very emotional. These conversations are sometimes difficult and they will forget content and this is opportunity to go back and read it again and read it again and, that’s why written information’s helpful. (Cardiologist)

It doesn’t particularly say anything new or anything that we wouldn’t tell parents anyway but I think the beauty of it is that it gives them something to take away and, you know, with any of the sessions that we have with our families, the information is so complex and there’s so much of it that I don’t really expect them to take more than about 10 to 20% of it away in their minds, which is why we have these meetings repeatedly but I see enormous value in them being able to take something away and read quietly later because I think a lot of what’s written in the book would trigger memories about what was said in meetings that would allow them to feel more comfortable with the decision at a time when they’re drowning in complex information overload. (Neonatologist)

It gives families something they can take away and read that aligns to what they’ve been told in that (bereavement counselling) setting. (Neonatologist)

I think it would be extremely useful because when you mention to families they sort of close down and they forget the questions they might want to ask but having a resource that they can go to when they maybe deal, come to maybe deal with a little bit more terms with the information they’ve just been given, a resource that you can give them and say, when you feel up to it, have a read through this. I actually think that would be extremely beneficial. (PICU nurse)

Sometimes there’s not a huge amount of time between then and when an intubation happens for them to read … so maybe when they can read it at a point when they’re a little bit kind of calmer then at least there’s some sort of information there and if they come to it, they can go, “Oh, I’ve read that book and I should maybe pick that up again”. (Organ and tissue donation nurse coordinator)

Sub-theme 3: ‘I’m not alone in this’

I like that there’s some stories and I really like the quotes and I think that’s really helpful for people to say, yeah that’s what I’ve been thinking or that’s been my experience or just hearing something, being reminded that I’m not alone in this. Other people have walked this journey. (Chaplain)

It would help those who are struggling to make a decision – seeing others have gone through it would help. (PICU nurse)

I think it just made it a bit more personalised it sort of opened it up that, you know what, other families go through this as well and this is how they dealt with it. (PICU nurse)

I think it’s really good. I think the inclusion of the post-it notes with the families’ feedback is really good because it makes it feel much more like it isn’t just the doctors telling you what they think. (Educational play therapist)