Table 4.

Clinicians' Views on Usefulness of Caring Decisions Resources

Stakeholders benefiting	Clinician quotes
Parents	I'm positive about how it might be used and the effects that it might have, and especially in allowing parents to order their thoughts and not be unduly influenced by what are sometimes not that lengthy discussions about these sort of matters. So I see it as a positive initiative. … I think in general the clarity and helping people to order their thoughts, because the parents do say that there's so much information and it's so difficult to get it into the right order. They're being expected to apply that information to the life of their child, and that's very difficult for them. Clinician-3
	I love the way it gives it all to the parents and gives them the right words to use and how to engage and all of that. … Because of that engagement process I think it gives parents tools that they can then go and ask parents, ask the doctors questions, do you know what I mean? Clinician-5
	I would want them to have as much information as possible. So I would see these resources as something I could use in conjunction with my meetings with them. Something solid and concrete they could take away and something that they could … another resource that they could access if they wanted to go deeper into a particular aspect. Clinician-3
	Do you think that this resource would assist in those cases or do you think, as some have indicated, that it might potentially delay decision making? (Interviewer) I think it might, but at the end of the day I think it would end up being a better decision. I think we don't realize the long-term impact on families about decisions that we make quickly and we move on and we forget that—and over the years I've seen a number of cases of parents that were clearly scarred badly by what happened. Clinician-5
	I think consultants might just often ask, ‘Do you have any more questions?’ and parents may not have any, but having something with them where they can just read at their own pace and then come back, especially if time allows. … Yeah and I think they also get an idea about these terms that we often take for granted, they may not be in a layperson's vocabulary that much and maybe they don't want to look embarrassed by asking, What does that mean? What does that term mean? Whereas in the book I think they're quite well explained in a layperson's language. Clinician-6
	Look, it may actually be helpful because often people don't fully take in what you're talking about. So I don't think it would be harmful at all. It may be quite good to see something in writing that somebody has been talking about. When you're having a one-on-one conversation you're just one person and I guess they want to be reassured that what you're saying is reflecting an accepted view. I guess the print brings some sort of credibility to that. I don't think the way it was written was wrong at all. Clinician-1
	It's nice to just have those bits that feel personal, because you always feel like someone's been there. I'm not the only one. When I look at it as a parent, you at least feel that personal touch, that these are real people who have been through this and I'm not the only person going through this. I think that's really nice. Clinician-4
	Look, the more I read I thought it was really good and I could see someone at a bedside or just at home with nothing to do and everything's going around in their head sort of getting onto that website and just going I want to know about that, I want to know about that, oh that's an interesting … like the taboo topics, what's that and even for that you think, Oh, that's exactly what I'm thinking. Clinician-5
	Because there's the grief afterwards and I think it starts early on when the patient may still be alive, like to be prepared and having maybe this sense of control if they know the likely scenario that's going to happen. They read about other people's experience with it in a layperson's language, I think that might help them a lot. … Yeah, I think that there are a lot of things in there that probably answer a lot of their questions and could potentially alleviate their feeling of guilt, to say they've done the right thing by looking at other people's experience. Clinician-6
	If they have the time to actually sit and think about it, and a resource that actually talks through it in a very nonconfrontational way. Because there's not a physical person talking about these individual things, but they get time to sit with this book or with the electronic resource and actually slowly think about the situation. Let it all unfold and absorb that, and then have their list of questions and go and talk to a person. Clinician-4
Experienced clinicians	It might be beneficial for some other people who need to have these discussions a lot earlier. A lot of these patients who come in have been seen for years by general pediatricians and other subspecialists with clearly long-term progressive diseases which are clearly going to be life shortening. They should really be having these discussions early and frequently. I don't feel for me personally it's very useful because we have these conversations more than other people do. Clinician-1
	Possibly for me I doubt it's changed all that much. I think we always like to think we're thoughtful and approachable and pragmatic and so I don't think necessarily, speaking personally, that that's [i.e., access to resources] changed anything for me. Clinician-2
	It's not just knowing that it's okay and knowing that there are typical thoughts that will be running through families' minds but also having that interpersonal skill-set that allows you to listen carefully as opposed to impose your own values on things. Effective change requires more than just a website or a document. But we've got to start somewhere. Clinician-2
	I think some of them [i.e., clinicians] in particular have a better understanding of the sort of situations and the resources that are available to families and how to answer some of the questions. Clinician-5
	There are many different aspects to this problem and to this activity. To some extent, yes, it is important to grasp basic ethical principles which were not.none of us … it's rare that a doctor has any formal training in philosophy or ethical thought. Likewise, in how that relates to legal aspects. So I think it is useful to have a resource that has a wide remit, where the net is spread wide. Certainly in our department it would be helpful in our day-to-day work. Clinician-3
	So it was nice to have something that actually went through a lot of these important issues. Clinician-4
	I guess we could activate this in order to finesse the terminal care aspects of it. … I think we should have it as our template on how to do this. Clinician-5
	But when you look at it the other way and from a parent's perspective, their anxieties, questions, their feelings, their guilt, what to expect, there's so many things that's going on there, which I think it's nice to … for me I found it nice to actually go through the resource and look at some of those issues. How … the questions that might come up and how I would handle those questions as well. … So I think it's helpful for me as well, because it's things that you don't quite sit and think about, but you look at it and say, Hmm, the parents do think about these things. How would we—how would I respond to such a question, for example. So it helps me prepare for such a conversation as well. Clinician-4
	It's really useful to just briefly introduce the concept of redirection of care, give them the time to really go through the resource, and then meet them again with trying to answer their questions or just going over some things in more detail and then looking at what would happen if you do this or that. I think that's a much better way of doing things. … Because a lot of those things that we discuss in the book are not something that's easy to come out with in a conversation, especially if you're meeting a parent for the first time. It's not easy to talk about those things in such a difficult situation. So I think it's a gentle way of actually introducing a lot of important issues that a parent has to deal with. Then you can sort of use that as a base to start further discussions. Clinician-4
	I think this is just as much use for health care professionals, I think, because of the way it deals with how you interact, how you engage the process. So I do think that those complicated and difficult things need to be taken out and looked at from all different angles, so people can appreciate that. … So I see the depth and breadth of the discussion in this as something that people that are in the profession should understand, certainly from where we are and obviously from all those other areas in medicine. Clinician-5
Trainees	I think it's pretty quick and easy to read, isn't it, so it's not unreasonable for nurses and trainee specialists to read. I think it would be pretty good. Clinician-1
	I would happily use this as a resource in training our own trainees. … Because it is quite a lucid exposition of the problems, with the perspective of parents, and it would be a useful training tool, I think. Certainly in our department it would be helpful in our day-to-day work, but also in our training of junior staff. Clinician-3
	I certainly think it would be useful. It would be useful just to even have, Oh, these are the things that come up. How would you approach it? Just to have a discussion based on the things that the book talks about. I think it would be a useful teaching resource as well. Clinician-4
	We see this as core to their training and, in fact, all of the issues brought out in the various chapters are things they really need to see. Because these are young people, they haven't had children of their own. They're lovely, they're terrific, they're very bright but I think this brings out more of the humanity of the situation. Clinician-5
	For me it would be a good guide, how to be prepared for these questions, because I myself haven't seen that many babies die. … I wouldn't be very prepared, I mean predicting how things go and how long the dying process may work and also what other things mean. … I've never seen a baby on whom nutrition was withdrawn, how long that may take. I don't have enough personal experience to guide the parents for that. So I think these personal stories and explanations around these topics are actually like a textbook almost where you can picture the scenarios and indirectly maybe learn from other people's experience. … It may also prepare us for questions that the parents may have, like whether they … about the legalities. Maybe also about their being in two minds about things, whether it's the right thing to do. Yeah, I think having the parents' experience in this book, it's almost like a script. It's sort of dialogue that you might then encounter in real life. So I think other than that, there's no real sort of communication training available in this area, not that I'm aware of. Certainly the college doesn't provide us with a workshop at this stage that I know of. … I find it really helpful because, yeah, we don't get a lot of training with this. Having recorded messages from parents and the questions that might actually come up gives you a heads up. Clinician-6