I think part of it is, for me, is recognising how unique the journey is for the family … and the uniqueness of that journey depends where they are in that journey. Obviously, early on, it's devastating … and I suppose, how do we try and personalise that experience? … A lot of what I try and do in the early days is to remove the medicalisation and stigma of a diagnosis. I am very keen to define their beautiful child as an individual and a unique individual—not an illness, not a diagnosis, not a label. Often, I have very traumatised parents that have been through a very medical model. A child has cerebral palsy—that's it. Or they've got this and this is what's going to happen. I try—obviously, it's nuanced to the individual and the family and where they're at—but a little bit my catchphrase [is] not to define your child by the diagnosis they've got. They're going to be their own individual.

—Metropolitan Paediatrician, NSW

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I like to think I make a difference. I don't feel that every day or with every patient or with every interaction. One of the things that I think I offer families is a sense of hope and a sense of calm and a sense of context.

—Metropolitan Paediatrician, NSW

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To me, the biggest confusion with these types of families often comes from the fact that we're asking them to straddle acceptance and pragmatism, while they're swirling in hope and despair and a lot of emotion, particularly the newer diagnoses … I tend to find that it's helpful to allow space for the emotion and the grief and that conversation and almost separate that from the pragmatic discussions. … Sometimes … I'll be asking about how many seizures is the child having or where are they up to with their ambulation if it's … a muscular dystrophy. … Then, sometimes I'll have a symbolic thing, where I’ll close my notes, change my posture and be like, ‘Tell me how things are going’. I feel like there needs to be space for the fact that they'll then just want to cry and say, ‘But it's hard’ … or ‘I still keep hoping that maybe the test was wrong’. I think you can't dismiss all of that.

—Paediatric Neurologist, NSW

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As a genetic counsellor … so often with these rare, serious, severe conditions, what I feel is fundamental to just being there for the family, is listening to them. Something as fundamental as listening actually.

—Genetic Counsellor, NSW

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That relationship when you have to have difficult conversations is actually really important and it's amazing that sometimes then when you're listening, they feel able to say something they haven't been able to say. One family said, when I got them, they'd had multiple admissions, multiple teams, multiple people. Then I said to Dad, ‘What do you really want?’ He said, ‘I want him to be palliative’. And he just hadn’t been able to say that. He said, ‘I can't say that in a big group. They're all going to judge me, but I just needed to tell you.’ Sometimes, it has to be a conversation without too many people so that they can feel they are able to do that.

—Tertiary Paediatrician, NSW

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… It's very important to approach as often as you can, even though you're seeing these people regularly—approach them with kindness and with time. The thing we do run out of is time. One thing I find people desperately need is just for you to be able to stop and focus. It may not even be that long in the end. It might just be they need five minutes, but that time, being theirs, focusing in. Taking a big breath and stepping back and going these people are just desperate to hear something that they need and for you to give them the time to listen. I think that's truly important and that's where they feel heard.

—Paediatric Neurosurgeon, NSW

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So much of this really is the communication, drawing the threads together and making sure that everyone's on the same page. Particularly in a regional area where the experts are physically distant from where you are, you need to know that what was said by the neurologist, by the metabolic team, whatever, elsewhere, relayed to you in form of a letter or report, is actually what the parents understood. That shapes where you're going too. It may have shaped their expectations because they've misunderstood what's being said. So, it really comes [down] to helping them negotiate what's going on. That's where I think we can make the biggest difference.

—Regional Paediatrician, NSW

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I think of one patient I had where they had a huge amount of complicated issues, [they] were seeing multiple specialists and they said, ‘The reason that we like to come and see you is because you're the only person who puts all of our issues together in a succinct form in a letter. And then we take that letter around to all of our specialists so that they understand what's going on’. So … I didn't fix any problem, I just wrote a really good, concise, letter with all the problems that was helpful for their other specialists. But that's probably what can keep me going, that understanding that experience, sometimes, has just as much worth as medical academia.

—Metropolitan Paediatrician, WA

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To be humble enough to acknowledge, we don’t know it all and to be very transparent about, ‘I don’t have the answers for you on that one, but I know that is something that is important to you’. To be humble enough to be able to say, ‘I don’t have all the answers, but these are the things we do know’.

—Regional Paediatrician, NSW

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Trying to understand where families are in the stage, stage of grief, really. It's a grief reaction and you have your various stages through that. … It's trying to meet them on that journey … then personalising your care to where they're at, meeting them where they're at. … Then helping them through that journey. I would think a lot of the families I see are very overwhelmed by the totality of the situation, the medical and the social sequelae that they find themselves in. And part of, I suppose, the gift that we have being in the situation, is to help them prioritise what's important here and now, what our longer-term goals are and really help focus them in on that and … give them purpose, give them [the] journey.

—Metropolitan Paediatrician, NSW

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… There are some families that you can't really help them make sense of the situation they're in. Sometimes, the situation they're in is so diabolical that for anybody to make sense of it is really complicated. But I think by giving them the space and asking them about where they're at, how they're doing, where they are in their process of acceptance, it gives them something that they often don't get from anywhere else. So, they may be getting information from their parents that they're not trying hard enough to find an answer or a solution and they're getting information from the internet that they can get all these other treatments. But maybe nobody else is asking them how they're doing and helping them to accept where they're at.

—Allied Health Clinician, NSW

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… [There are] two main aspects … which are easy to forget. One is which wars to fight when there is a discussion about new and novel things. Because once there's a diagnosis, there's always a cascade of rare therapies. … So, you have to choose that … then let families run with some, if you don’t feel that that is detrimental to other care and their finances and things. The other aspect is to try and bring back the spotlight to the themes that are common to children, irrespective of their rare diagnosis. So, their sleep may be a problem. Behaviour may be a problem. And that may be something that you understand, as a care provider or clinician, that yes, this looks like anxiety. I know how to treat that.

—Paediatric Neurologist, NSW

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I always try and get the families to focus on what they can see in front of them and not plan the wedding and the job and all of these things that are not going to happen and try and get them back to the moment and enjoy the child that they've got in front of them. There are going to be positives and focus on that. And [what] I mean—I think I've done it subconsciously—is to try and focus on something really good about a child and get the parents to see it. … Yes, there are a lot of bad things, but here's the one good thing. … For the deaths, I often say, ‘The life wasn’t in vain. There was a reason. It has changed you. He has made all of us a better person’. So again, trying to get a positive out of [the] negatives.

—Paediatric Metabolic Consultant, NSW

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I do believe that, as a nurse, you can enable. You can empower families incredibly. So, what might look like impossible … so when a child stops being able to take oral feeds and they need to have nasogastric or peg feeding through their bellies, you can say to a mum, ‘Do you know what, you can do this, you can do this and you can do this. This is not going to stop you being a mum, … we're going to show you how to do this really well and you will be able to give your child nutrition’.

—Nurse Manager, NSW

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… It is really around that recognition of them knowing their child so well that I'm very much guided by what their issues are for them, to empower them to say, ‘This is the most important thing to me and this is what I'm worried about for my child, because I know him or her so well’. To be able to give them that, empower them to be able to set an agenda for them because it is their everyday and I'm just seeing snapshots, at certain time frames, time points.

—Regional Paediatrician, NSW

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… An important part of what I end up doing is giving them permission to do less. … They can spend a lot of time with everybody saying, ‘You should do this and you should do this and you should do this’. … Then, having that realistic discussion, is like, ‘What's important to you? What's doable for you? This is one child in a family and he's very important, but so are the other two and so are you and your husband’… and really having those discussions about trying to prioritise and talking about both prioritising in terms of what's important, but also what may be effective.

—Developmental Paediatrician, NSW

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… Probably what I would focus on is trying to help them to appreciate what it is that they can appreciate. Enjoy the good bits of their situation. I think probably what a lot of these families experience is so much grief and trauma for years and denial for years that they can't get to the joy, the little bits of joy that are available.

—Allied Health Clinician, NSW

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You might be there when they give a smile, that honestly, finally, after weeks of steroids or whatever, it’s just enough to light the room up. That’s all they need, is just something to keep moving forward. … If you can acknowledge that and appreciate that it’s hard gained, that’s a really big thing. It might only be something really, really tiny and mightn’t come along very often, but when it does, it’s a beautiful thing. To be able to just settle on anything that helps a family find a small amount of peace or satisfaction with their child in their life … is truly a gift. … Sometimes it’s just the joy of living in the present, trying to help them perhaps not always be navigating what’s coming next and just to celebrate the really small pleasures that sometimes come.

—Clinical Nurse Consultant, NSW

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