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I think anybody would doubt that one of the most difficult things that a health care professional ever

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has to do is to tell a child that they or their parent has a life threatening condition and might die.

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But what we know now is that these conversations are incredibly important because they set the trajectory for the child

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in the family going forward and has enormous impact on the child's well-being and the family functioning in general.

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But there are also conversations which can't be avoided or certainly shouldn't be avoided.

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There often are because we know that should not absolutely excellent observers of everything that goes on around them.

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Everybody has children with that experience of children, which I'm sure all of you will know.

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Kids are very good at picking up things they notice, changes in mood, changes of behaviour and changes in facial expression.

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And they ask questions that they're not told they put two and two together.

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They might get five rather than four, but it still means they're trying to work out what's going on.

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Just two little examples from our own experience one from a low income context so little and boy in

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a ward in sub-Saharan context and the child opposite him had been very unwell and died one night,

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and he woke up in the morning to find the bed was empty and he started asking every adult you could find every doctor,

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every nurse, what happened to their child? And they all gave me different explanations at the end.

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One of the nurses noted that he kept asking what was going on.

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And she said to him, Why are you asking these questions?

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And he said, Because I need to know who's telling me the truth and who I can trust.

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So we also have another example in the high income context of of a of a girl who told

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us later on that she used to go and sleep outside a parent's bedroom every night.

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She knew something was seriously, seriously wrong. Nobody told her, and she thought it was something about the safety of the house.

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She knew the parents were very distressed.

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In the week or two, before her father died from a new degenerative condition, they told her and she worked it out.

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And she said that the years she spent she could have been so helped because of fears was so misplaced, and she stood for them alone through that time.

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So I think children do not have to have an understanding of this. My own personal experience with it, and you do the mess with everything.

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Decades ago, when I was doing, we're doing a study of of palliative care in children,

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and we're doing a comparative study of the first hospice in the world that was based in Oxford.

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And my job as a junior researcher was to go and visit all these families in their homes.

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And I turned up that in advance because my 25 page schedule to all three families, hundreds of questions.

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And on page one halfway through was a Christian and a kind of a warm up question.

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You know, how did you find out about it and how did you feel about the diagnosis that we just told you?

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And what I discovered was that almost every family was stuck in that moment and those the answers that question

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led to somewhere between half an hour and half a day because that was the moment that people remembered vividly.

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They remembered the curtains, they remembered the light. They remembered the voice. The trajectory of their lives changed.

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And it wasn't uncommon experience. So we realised then how important it is.

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We weren't the only people, but how important it is for us to be able to talk to children and talk to families about these important things.

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And they're not something to for doctors. There's something for health care workers, for radio, radio therapists, all sorts of people.

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Every health care professional who works with children has to deal with this in some work, at some point in their lives.

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We've done some work in Uganda, and I remember very clearly one of the health care professionals.

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She was a health care worker working in a refugee on the north eastern Ugandan

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border near South Sudan packed refugee camp with South Sudanese refugees,

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having escaped the war in Darfur and elsewhere,

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saying But the biggest thing she had with all these kids to deal with to for help them to make sense of the experience, they bring a lot of loss.

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It was a lot of illness, a lot of chaos.

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But what they needed was some explanation, some coherence as to what was going on about them, especially when it came to illness and impending loss.

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So even for her, in those circumstances, it was as important as elsewhere.

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And these are not uncommon problems. So a lot of it in conditions in children.

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And we know that 1.8 million children are infected with HIV now around the world.

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So it's a common condition. And more than 300000 children develop cancer each year.

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So those are just two conditions. There are many other conditions, but those are the two that are mainly studied.

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So these are not uncommon conditions.

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And in low and middle income countries context and particularly Africa, the survival from cancer in particular is actually very poor.

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It's something that we see very little, very little information, very little attention.

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But survival for children in cancer and in high.

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Some countries can be up to 80 per cent from childhood cancers,

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but in low income countries it came down to 10 or 20 per cent and it's just unconscionable.

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That difference can occur. But nonetheless, it does emphasise how important the other issues are on communication is important,

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and things like being able to advocate for your own care is another key component of all this.

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For parental parental love and conditions, even more important, even more common, should I say again,

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and HIV is very common in parts of sub-Saharan Africa and up to a 25 percent import in areas which a

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child is living with a period of HIV and cancer is very common in a country which got the statistics.

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Two point eighty five million children are living with a parent's diagnosed with cancer.

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So these are actually really common conditions and these are common experiences.

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And in a way, when it comes to adult conditions, many adult clinicians, some I don't see the family,

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I don't have any sense of the family is actually part of what they need to be dealing with.

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And it's understandable, perhaps in the busy clinic. But it's important. It's an important oversight that needs to be dealt with.

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Why is it so difficult? Why do these conversations not occur often?

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The first is we all want to protect children from distress, especially our own and especially health care professionals.

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Look after someone so you don't want to upset children,

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but actually not telling them we've discovered is not protecting them because they do have a very good sense of it.

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Health care professionals also don't want to get into this sort of thing.

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Often it's very distressing to tell a child so you might avoid it on that basis.

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You have a very busy clinic, a very busy day. These are not simple things to do.

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So that's another important issue. And of course, the curative ethos is very strong in medicine.

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Still, they're often dealing with the fact that is no longer possible is often perceived as failure because we can't get somebody physically right.

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But these but we can still do an enormous amount through other kinds of communication, other kinds of care we can provide for people.

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That's one of the biggest problems is a lack of understanding much more broadly amongst clinicians or

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health care professionals and the community in general about children's developmental understanding.

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I'll come back to that in a moment. But children's understanding of loss, separation, illness, illness, causality develops over time,

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and you need some understanding of that before you have these kinds of conversations.

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And perhaps finally, very importantly, there is a substantial lack of available guidelines.

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Simple guidelines just take you step by step through these issues because if those are available, then it becomes a much, much easier task.

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So what was important to communicate the truth about the illness first?

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It enables children to understand what's happening. They are much more likely to cooperate with procedures.

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They adhere to treatment.

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And we now know from a number of studies that can affect illness caused you to understand things they participate things with,

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with the procedures they take the medication. It's much easier, and they'll also allow children and family to advocate for that.

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And these children often very good at expressing their voice about the kinds of things they do and don't want.

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If they don't know what's wrong with them, it makes it more difficult or if they know something's wrong and people are not telling them it often

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creates another barrier in the relationships was important to communicate about parents illness.

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As I said, you're not very good observers.

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They noticed changes in parents appearance and behaviours, and they're aware if a parent is taking medication or attending a clinical hospital.

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So not giving children information leads to them attempting to make sense of their own situation.

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And they rely on their perceptions to make it to kind of construct a reality around them.

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And often that reality is not quite right. They don't get it quite right.

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And that can lead for those difficulties, and they left to cope by themselves.

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And as I said, ultimately the fix the psychological and physical will be.

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So this is just a brief summary I can send you if you want a much more detailed description of children's developing understanding.

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So in the first two years of life, children developed what we know as something called object permanence.

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They understand things as being permanent. They understand the perception of a caregiver or a parent in their face.

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And when they're not there, they appreciate that and they distressed and they want the person to return.

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But between three and four, they start to understand that that idea of death is something that's part of the natural course of things.

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But they do not understand the irreversibility.

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So it's very important, especially in the traumatic situations, to be quite clear to children if somebody has died.

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We know of so many circumstances. We are understandably parents in difficult circumstances or even friends or caregivers or

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health care professionals hit a small child because you could almost not buried yourself.

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Don't worry, the person gone away, then hospital, they'll come back another day.

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They'll come back at some point. And we know that one of the most difficult things for children to cope with,

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to believe that someone's going to come back and they never come back is something children often remember forever.

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At the age of five to six children understand death as we would understand it the complete finality of death.

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So that's an important watershed. I'll come back to the issue of magical thinking just in a moment,

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because that's a very important watershed at the same time around that 47 years of age.

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But then getting on to adolescence is another important period.

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Children's executive function adolescence executive function start to mature as they arrive into adolescence,

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so the attentional capacity tends to control.

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The whole decision making process for adolescence is very different, and most importantly, peers start becoming much more important than family,

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or certainly at least as important a family and the great driver, not only emotionally but biologically behaviourally.

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So when this serious illness in the family or in the child herself at a recent period,

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they've been drawn back into the family fold into family issues, we.

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They're trying to get out of it and create a lot of issues.

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What is magical thinking is the term is often used and doesn't mean magic, but what it means is it true,

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is about prudent belief that thoughts, events or wishes can cause external events.

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In other words, we all occasionally, you know you have an argument with somebody the next day who they're the

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corporations that I cause it and we know somewhere along the line that's not true.

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But for children between the age of four five six seven, that's what they believe. And that's not they think that really happened at the same time.

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They also are developing a conscience. So the idea that things happen that often end up feeling guilty for things that happened around them.

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So if someone becomes ill or they become ill, they often feel somehow they're implicated unless they have proper explanations.

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We looked after a little boy. His mother had a contrasting condition.

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She was actually being managed quite well. And one day he was. He was he was six or seven years of age.

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He decided he wasn't going to go to school and Epic refused and just happened to be the day she was going to the clinic.

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So of the big argument that ultimately decided OK, she would stay at home and spend the day with him at home, and he stayed at home.

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Unfortunately, she developed some complications of her condition, and three months later, she died.

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And we only discovered two or three years later that he was pretty sure that he was the cause of his mother's death,

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that he had actually kept her term. She had not got her medication.

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And then she then slowly gone downhill because in the argument, say, Well, you know, I need my medication, I need to get it.

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What he didn't realise was, quite understandably, she didn't say, well, the next day, she went and got it.

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And if a simple explanation had been present there, it would have been a lot easier for them.

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So just a bit about what you understand about illness and the relationship between illness, the body function and body structure at about seven to 11,

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they start to understand some of these relationships,

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but they're pretty concrete to try to understand things like your hair falling out or losing weight because you're ill.

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But they won't understand side effects. They don't understand the internalisation of the internal functioning of the body.

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So if you talk to children up to about 11, you have to keep it pretty simple and pretty concrete.

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But beyond 11, you can make it more more concrete, more abstract than that.

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So the effective communication tool have what is said we now know leads to lower anxiety.

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Delayed disclosure is associated with feelings of anger and betrayal.

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It helps trust and enhance adherence and lack of disclosure, especially in the HIV context,

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often really often ends up with poor understanding of the risks of unprotected sex.

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Unfortunately, it turns out that children of parents who are HIV positive or HIV negative themselves are probably at greatest risk of developing HIV.

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And it's a complicated story, but we would come back to that interesting.

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The large study in Egypt, which is of children that had cancer and their parents,

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found that the communication was very central to the way in which children adhered and the way in which they could function more generally.

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As I just mentioned, there's one Chinese study because very few studies like this in China,

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but it's an interesting study about HIV, and it was a complicated study.

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I went into the ethics of it, but they did it quite nicely.

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But they interviewed 626 children and adolescents whose parents had HIV, and they're trying to establish,

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did they know that the parents of HIV and and the vast majority of them had not been

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told by the parents or the caregivers not being told formally that the parents of HIV?

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But of those 60 per cent who hadn't been told, 80 per cent knew in one way or another, they cleaned it.

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This was in the Chinese context where you, perhaps with this kind of information, was not flowing very easily, so they worked something out.

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So several years ago, the Lancet journal commissioned us to produce a series which tried to pull some of this together.

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And what they want us to do was to review all the literature, which are great and grateful to them for being very patient for this venture,

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which we thought would take six months and took three years, but was really very widely over related issues.

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And then pull it together and develop workshop and develop guidelines because it was really a dearth of guidelines,

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the very limited training and the very few opportunities for ongoing supervision.

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This is such a common experience and we've all well, I wouldn't say all,

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but most of us at some point being there in terms of loss of a relative loss of and which you are involved at some point.

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We also we also put together a workshop of international experts from kind of

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around the world who had one meeting just to sort of lay out the groundwork.

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And then they worked with us through an iterative process around how you develop the guidelines based on the evidence,

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but also based on good clinical common sense. And we had people really from mass, from mass general to people who work in refugee camps.

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And this is just briefly the series and I can send you a set of the papers.

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And it came with an editorial, and I think they were very struck by how how little was known about it more widely.

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Yet there was actually a lot of information there which could be used to kind of develop these guidelines, which were actually not rocket science.

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These are not things that are complicated, complicated scientific issues, but they are clear and many of them are actually quite simple.

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So just to give you a few examples of the kinds of simple, simple things,

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I won't go into any detail that the guidelines came and there were pages and pages of things,

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you know, advisers to kind of wording that could be used, but simple things that so many families have said.

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If you use their names and their children's names, it is so helpful in the centre in some kind of gigantic conveyor belt.

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Speaking to anonymous health care professionals but when their names are used, it makes such a difference.

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I always say to medical students, Just look in the notes.

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If you can't remember the names of something to write down the back of your hand a piece of paper because in the stressful moment you might forget.

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But it makes such a difference to be able to use an existing his or her brother and not remembering the name issues around privacy.

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But things like when you mentioned give the name of the condition.

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We all feel very anxious. A difficult moment. You say your child's got retinoblastoma or something like that.

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And that moment you is such a tense moment and that the tendency of health care providers is just a rush on because you just don't want to wait there.

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But you need to wait for a moment and just let the parents. With a child every spring to absorb that moment and say, do you know what that is?

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And just give them a moment because their minds will just be racing as to what that means?

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Will they not be playing with their friends? Will they not go to a party? What can't they do?

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What will be happening? All the things that will be preoccupying their mind and they may not be listening to you.

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And there may also not know. You might think they know what the condition is, but they don't.

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So just giving them a moment and then offering them a bit about that,

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often what they understand and then having to follow the cues to the call of details about how you take all that forward.

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But two things that parents always said at the very end and children at the end.

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One is you won't be alone. They are always someone to support you through this because I think families think you're getting to this stage.

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You're kind of out there by yourself.

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And then one thing to help them about not being alone, which is maybe even just a telephone number that you can communicate because.

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So just to mention, I just give you just mention of a study we did in northeastern south South Africa and around how you talk to children about HIV.

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So HIV is many people would know it's still an enormous issue.

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Thirty six point seven million around the world of HIV aids, 1.1 million individuals worldwide,

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newly infected in Asia in 2016 and the highest rates in young women and especially young women of childbearing age.

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But the power of antiretrovirals means that almost all of very few of these women children are now infected prior to entry retroviral medication.

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The transmission rate was 40 percent, 35 to 40 percent of children, which it is transmitted to HIV in utero or during breastfeeding.

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Now one percent even in studies in places like Zambia, South Africa and less than one percent at the John Ratcliffe, all of the messaging so.

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But what it means is this enormous cadre of children who are growing up in

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families where a parent is HIV and the communication to those children is so,

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so critical and it's very hard for these families.

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You can just imagine how hard is to think, how am I going to especially living in small circumstances.

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You've got to take your you take your own medication every single day and religiously.

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It is somewhat if your child is a couple, you have a cat,

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you've got to be very careful about how the cleaning our blood, all these different things that need to be done.

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And it's certainly preoccupied in.

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A lot of parents don't want to talk to their children about it, but it is enormously helpful that parents find what the children once it can be open,

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once they can talk about their medication, there's a lot of planning that can be done.

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We developed something called a which is a family based intervention where we used, where we trained and the big team.

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So I come back to a moment, a big group of us who work this one out with a simple succession, but women who were called lay health care workers.

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So these are people who had no professional qualification but had got the equivalent of a kind of what we

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might call a GCSE and who worked with the families in their homes around talking to the children about HIV.

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A couple of key issues was to actually work with the parents about their own feelings.

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First, because the feeling that most of these mothers and fathers had about how you talk to a child and what the questions would be meant,

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they could almost not cope. So needed at least one session debriefing session, if you want to call it, they could talk about.

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So what would you do if they say, will you die and helping them?

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The consequences and also the biggest fear for most parents is how did you get it?

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So giving them simple, uncontained, contentious, true. Not every single bit of the truth.

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Experiences of how you may have got to, because that's what kids want to know you.

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Am I going to get educated?

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But it is also important for children to do have a sexual education because of the risks that these kids and in the in the studies,

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a couple of studies in the Congo, which show quite clearly that elephants and young and even younger children really want

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to know and filled the important that they could protect themselves in due course.

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So it was a five session thing we ran.

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It was a big, randomised controlled trial, which we compared it to a sort of standard of care, which has been enhanced standard of care.

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And I don't want you to worry too much about the rather unpleasant looking a diagram,

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but basically it's just the sense that what happens to people at the top, if then corner is you.

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The distress, fear and isolation leads to what you might call avoidant coping. You don't talk to your kids about things.

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The easiest thing, easiest way to deal stress is just not to talk to them.

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The non-disclosure often leads to strains in the relationship and then avoidance of sex education.

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I won't go to risk, but it's this what we call avoidant coping, which so many people in stress we all use at some point.

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But helping someone to understand it and to find ways of dealing with in very simple terms is important.

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The results were really positive. He said it wasn't that difficult to help people disclose, some of them didn't use the word HIV,

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they use the word virus that we call the partial disclosure.

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But not only did they disclose more to the child who who was involved in the study, but they also tend to disclose to other kids.

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We work to things like helping take the child to a clinic, visits a familiarised health clinic.

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So wasn't this kind of big thing, and we help the clinics to be a bit friendly to the kids or to kind of be welcoming because if you've been,

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you know, been to clinics in India almost anywhere, but especially in areas where social, economic reality disadvantage,

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the kids are massively busy and then most you feel just be overwhelmed by all the people and all the rushing about.

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So may helping the kids to feel that this is a place they could go. It's a place they know.

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The parents are being looked after, discussing a bit of a care plan that the kid goes to hospital with Maddox or a mother

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goes to hospital before he goes to who would look after them and appointing a guardian.

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Even for a short period of time.

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The kids could say who they want to do because we know that water that often happens to these kids, especially in big sub ships,

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they get split up amongst a lot of other families where if this is worked out and the student advance can make a big difference.

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We also found that this led to quite a lot of improvement in parent child relationships.

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So in some, I think what we're trying to do here is make what we might call impossible conversations a bit possible.

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And if I go back to the little girl who slipped just outside her mother's and a father's bedroom and his father a neurodegenerative condition,

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what we could have helped her with what health care professional could help do with

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is her own feeding to her understanding and the lack of isolation in this family.

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We couldn't have changed the trajectory of the father's condition.

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That was something that no one could change.

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But what they could do was to help the family with this and certainly to help this young girl with her isolation.

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Thank you.