I think anybody would doubt that one of the most difficult things that a health care professional ever
has to do is to tell a child that they or their parent has a life threatening condition and might die.
But what we know now is that these conversations are incredibly important because they set the trajectory for the child
in the family going forward and has enormous impact on the child's well-being and the family functioning in general.
But there are also conversations which can't be avoided or certainly shouldn't be avoided.
There often are because we know that should not absolutely excellent observers of everything that goes on around them.
Everybody has children with that experience of children, which I'm sure all of you will know.
Kids are very good at picking up things they notice, changes in mood, changes of behaviour and changes in facial expression.
And they ask questions that they're not told they put two and two together.
They might get five rather than four, but it still means they're trying to work out what's going on.
Just two little examples from our own experience one from a low income context so little and boy in
a ward in sub-Saharan context and the child opposite him had been very unwell and died one night,
and he woke up in the morning to find the bed was empty and he started asking every adult you could find every doctor,
every nurse, what happened to their child? And they all gave me different explanations at the end.
One of the nurses noted that he kept asking what was going on.
And she said to him, Why are you asking these questions?
And he said, Because I need to know who's telling me the truth and who I can trust.
So we also have another example in the high income context of of a of a girl who told
us later on that she used to go and sleep outside a parent's bedroom every night.
She knew something was seriously, seriously wrong. Nobody told her, and she thought it was something about the safety of the house.
She knew the parents were very distressed.
In the week or two, before her father died from a new degenerative condition, they told her and she worked it out.
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.
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.
Decades ago, when I was doing, we're doing a study of of palliative care in children,
and we're doing a comparative study of the first hospice in the world that was based in Oxford.
And my job as a junior researcher was to go and visit all these families in their homes.
And I turned up that in advance because my 25 page schedule to all three families, hundreds of questions.
And on page one halfway through was a Christian and a kind of a warm up question.
You know, how did you find out about it and how did you feel about the diagnosis that we just told you?
And what I discovered was that almost every family was stuck in that moment and those the answers that question
led to somewhere between half an hour and half a day because that was the moment that people remembered vividly.
They remembered the curtains, they remembered the light. They remembered the voice. The trajectory of their lives changed.
And it wasn't uncommon experience. So we realised then how important it is.
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.
And they're not something to for doctors. There's something for health care workers, for radio, radio therapists, all sorts of people.
Every health care professional who works with children has to deal with this in some work, at some point in their lives.
We've done some work in Uganda, and I remember very clearly one of the health care professionals.
She was a health care worker working in a refugee on the north eastern Ugandan
border near South Sudan packed refugee camp with South Sudanese refugees,
having escaped the war in Darfur and elsewhere,
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.
It was a lot of illness, a lot of chaos.
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.
So even for her, in those circumstances, it was as important as elsewhere.
And these are not uncommon problems. So a lot of it in conditions in children.
And we know that 1.8 million children are infected with HIV now around the world.
So it's a common condition. And more than 300000 children develop cancer each year.
So those are just two conditions. There are many other conditions, but those are the two that are mainly studied.
So these are not uncommon conditions.
And in low and middle income countries context and particularly Africa, the survival from cancer in particular is actually very poor.
It's something that we see very little, very little information, very little attention.
But survival for children in cancer and in high.
Some countries can be up to 80 per cent from childhood cancers,
but in low income countries it came down to 10 or 20 per cent and it's just unconscionable.
That difference can occur. But nonetheless, it does emphasise how important the other issues are on communication is important,
and things like being able to advocate for your own care is another key component of all this.
For parental parental love and conditions, even more important, even more common, should I say again,
and HIV is very common in parts of sub-Saharan Africa and up to a 25 percent import in areas which a
child is living with a period of HIV and cancer is very common in a country which got the statistics.
Two point eighty five million children are living with a parent's diagnosed with cancer.
So these are actually really common conditions and these are common experiences.
And in a way, when it comes to adult conditions, many adult clinicians, some I don't see the family,
I don't have any sense of the family is actually part of what they need to be dealing with.
And it's understandable, perhaps in the busy clinic. But it's important. It's an important oversight that needs to be dealt with.
Why is it so difficult? Why do these conversations not occur often?
The first is we all want to protect children from distress, especially our own and especially health care professionals.
Look after someone so you don't want to upset children,
but actually not telling them we've discovered is not protecting them because they do have a very good sense of it.
Health care professionals also don't want to get into this sort of thing.
Often it's very distressing to tell a child so you might avoid it on that basis.
You have a very busy clinic, a very busy day. These are not simple things to do.
So that's another important issue. And of course, the curative ethos is very strong in medicine.
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.
But these but we can still do an enormous amount through other kinds of communication, other kinds of care we can provide for people.
That's one of the biggest problems is a lack of understanding much more broadly amongst clinicians or
health care professionals and the community in general about children's developmental understanding.
I'll come back to that in a moment. But children's understanding of loss, separation, illness, illness, causality develops over time,
and you need some understanding of that before you have these kinds of conversations.
And perhaps finally, very importantly, there is a substantial lack of available guidelines.
Simple guidelines just take you step by step through these issues because if those are available, then it becomes a much, much easier task.
So what was important to communicate the truth about the illness first?
It enables children to understand what's happening. They are much more likely to cooperate with procedures.
They adhere to treatment.
And we now know from a number of studies that can affect illness caused you to understand things they participate things with,
with the procedures they take the medication. It's much easier, and they'll also allow children and family to advocate for that.
And these children often very good at expressing their voice about the kinds of things they do and don't want.
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
creates another barrier in the relationships was important to communicate about parents illness.
As I said, you're not very good observers.
They noticed changes in parents appearance and behaviours, and they're aware if a parent is taking medication or attending a clinical hospital.
So not giving children information leads to them attempting to make sense of their own situation.
And they rely on their perceptions to make it to kind of construct a reality around them.
And often that reality is not quite right. They don't get it quite right.
And that can lead for those difficulties, and they left to cope by themselves.
And as I said, ultimately the fix the psychological and physical will be.
So this is just a brief summary I can send you if you want a much more detailed description of children's developing understanding.
So in the first two years of life, children developed what we know as something called object permanence.
They understand things as being permanent. They understand the perception of a caregiver or a parent in their face.
And when they're not there, they appreciate that and they distressed and they want the person to return.
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.
But they do not understand the irreversibility.
So it's very important, especially in the traumatic situations, to be quite clear to children if somebody has died.
We know of so many circumstances. We are understandably parents in difficult circumstances or even friends or caregivers or
health care professionals hit a small child because you could almost not buried yourself.
Don't worry, the person gone away, then hospital, they'll come back another day.
They'll come back at some point. And we know that one of the most difficult things for children to cope with,
to believe that someone's going to come back and they never come back is something children often remember forever.
At the age of five to six children understand death as we would understand it the complete finality of death.
So that's an important watershed. I'll come back to the issue of magical thinking just in a moment,
because that's a very important watershed at the same time around that 47 years of age.
But then getting on to adolescence is another important period.
Children's executive function adolescence executive function start to mature as they arrive into adolescence,
so the attentional capacity tends to control.
The whole decision making process for adolescence is very different, and most importantly, peers start becoming much more important than family,
or certainly at least as important a family and the great driver, not only emotionally but biologically behaviourally.
So when this serious illness in the family or in the child herself at a recent period,
they've been drawn back into the family fold into family issues, we.
They're trying to get out of it and create a lot of issues.
What is magical thinking is the term is often used and doesn't mean magic, but what it means is it true,
is about prudent belief that thoughts, events or wishes can cause external events.
In other words, we all occasionally, you know you have an argument with somebody the next day who they're the
corporations that I cause it and we know somewhere along the line that's not true.
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.
They also are developing a conscience. So the idea that things happen that often end up feeling guilty for things that happened around them.
So if someone becomes ill or they become ill, they often feel somehow they're implicated unless they have proper explanations.
We looked after a little boy. His mother had a contrasting condition.
She was actually being managed quite well. And one day he was. He was he was six or seven years of age.
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.
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.
Unfortunately, she developed some complications of her condition, and three months later, she died.
And we only discovered two or three years later that he was pretty sure that he was the cause of his mother's death,
that he had actually kept her term. She had not got her medication.
And then she then slowly gone downhill because in the argument, say, Well, you know, I need my medication, I need to get it.
What he didn't realise was, quite understandably, she didn't say, well, the next day, she went and got it.
And if a simple explanation had been present there, it would have been a lot easier for them.
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,
they start to understand some of these relationships,
but they're pretty concrete to try to understand things like your hair falling out or losing weight because you're ill.
But they won't understand side effects. They don't understand the internalisation of the internal functioning of the body.
So if you talk to children up to about 11, you have to keep it pretty simple and pretty concrete.
But beyond 11, you can make it more more concrete, more abstract than that.
So the effective communication tool have what is said we now know leads to lower anxiety.
Delayed disclosure is associated with feelings of anger and betrayal.
It helps trust and enhance adherence and lack of disclosure, especially in the HIV context,
often really often ends up with poor understanding of the risks of unprotected sex.
Unfortunately, it turns out that children of parents who are HIV positive or HIV negative themselves are probably at greatest risk of developing HIV.
And it's a complicated story, but we would come back to that interesting.
The large study in Egypt, which is of children that had cancer and their parents,
found that the communication was very central to the way in which children adhered and the way in which they could function more generally.
As I just mentioned, there's one Chinese study because very few studies like this in China,
but it's an interesting study about HIV, and it was a complicated study.
I went into the ethics of it, but they did it quite nicely.
But they interviewed 626 children and adolescents whose parents had HIV, and they're trying to establish,
did they know that the parents of HIV and and the vast majority of them had not been
told by the parents or the caregivers not being told formally that the parents of HIV?
But of those 60 per cent who hadn't been told, 80 per cent knew in one way or another, they cleaned it.
This was in the Chinese context where you, perhaps with this kind of information, was not flowing very easily, so they worked something out.
So several years ago, the Lancet journal commissioned us to produce a series which tried to pull some of this together.
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,
which we thought would take six months and took three years, but was really very widely over related issues.
And then pull it together and develop workshop and develop guidelines because it was really a dearth of guidelines,
the very limited training and the very few opportunities for ongoing supervision.
This is such a common experience and we've all well, I wouldn't say all,
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.
We also we also put together a workshop of international experts from kind of
around the world who had one meeting just to sort of lay out the groundwork.
And then they worked with us through an iterative process around how you develop the guidelines based on the evidence,
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.
And this is just briefly the series and I can send you a set of the papers.
And it came with an editorial, and I think they were very struck by how how little was known about it more widely.
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.
These are not things that are complicated, complicated scientific issues, but they are clear and many of them are actually quite simple.
So just to give you a few examples of the kinds of simple, simple things,
I won't go into any detail that the guidelines came and there were pages and pages of things,
you know, advisers to kind of wording that could be used, but simple things that so many families have said.
If you use their names and their children's names, it is so helpful in the centre in some kind of gigantic conveyor belt.
Speaking to anonymous health care professionals but when their names are used, it makes such a difference.
I always say to medical students, Just look in the notes.
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.
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.
But things like when you mentioned give the name of the condition.
We all feel very anxious. A difficult moment. You say your child's got retinoblastoma or something like that.
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.
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?
And just give them a moment because their minds will just be racing as to what that means?
Will they not be playing with their friends? Will they not go to a party? What can't they do?
What will be happening? All the things that will be preoccupying their mind and they may not be listening to you.
And there may also not know. You might think they know what the condition is, but they don't.
So just giving them a moment and then offering them a bit about that,
often what they understand and then having to follow the cues to the call of details about how you take all that forward.
But two things that parents always said at the very end and children at the end.
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.
You're kind of out there by yourself.
And then one thing to help them about not being alone, which is maybe even just a telephone number that you can communicate because.
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.
So HIV is many people would know it's still an enormous issue.
Thirty six point seven million around the world of HIV aids, 1.1 million individuals worldwide,
newly infected in Asia in 2016 and the highest rates in young women and especially young women of childbearing age.
But the power of antiretrovirals means that almost all of very few of these women children are now infected prior to entry retroviral medication.
The transmission rate was 40 percent, 35 to 40 percent of children, which it is transmitted to HIV in utero or during breastfeeding.
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.
But what it means is this enormous cadre of children who are growing up in
families where a parent is HIV and the communication to those children is so,
so critical and it's very hard for these families.
You can just imagine how hard is to think, how am I going to especially living in small circumstances.
You've got to take your you take your own medication every single day and religiously.
It is somewhat if your child is a couple, you have a cat,
you've got to be very careful about how the cleaning our blood, all these different things that need to be done.
And it's certainly preoccupied in.
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,
once they can talk about their medication, there's a lot of planning that can be done.
We developed something called a which is a family based intervention where we used, where we trained and the big team.
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.
So these are people who had no professional qualification but had got the equivalent of a kind of what we
might call a GCSE and who worked with the families in their homes around talking to the children about HIV.
A couple of key issues was to actually work with the parents about their own feelings.
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,
they could almost not cope. So needed at least one session debriefing session, if you want to call it, they could talk about.
So what would you do if they say, will you die and helping them?
The consequences and also the biggest fear for most parents is how did you get it?
So giving them simple, uncontained, contentious, true. Not every single bit of the truth.
Experiences of how you may have got to, because that's what kids want to know you.
Am I going to get educated?
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,
a couple of studies in the Congo, which show quite clearly that elephants and young and even younger children really want
to know and filled the important that they could protect themselves in due course.
So it was a five session thing we ran.
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.
And I don't want you to worry too much about the rather unpleasant looking a diagram,
but basically it's just the sense that what happens to people at the top, if then corner is you.
The distress, fear and isolation leads to what you might call avoidant coping. You don't talk to your kids about things.
The easiest thing, easiest way to deal stress is just not to talk to them.
The non-disclosure often leads to strains in the relationship and then avoidance of sex education.
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.
But helping someone to understand it and to find ways of dealing with in very simple terms is important.
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,
they use the word virus that we call the partial disclosure.
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.
We work to things like helping take the child to a clinic, visits a familiarised health clinic.
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,
you know, been to clinics in India almost anywhere, but especially in areas where social, economic reality disadvantage,
the kids are massively busy and then most you feel just be overwhelmed by all the people and all the rushing about.
So may helping the kids to feel that this is a place they could go. It's a place they know.
The parents are being looked after, discussing a bit of a care plan that the kid goes to hospital with Maddox or a mother
goes to hospital before he goes to who would look after them and appointing a guardian.
Even for a short period of time.
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,
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.
We also found that this led to quite a lot of improvement in parent child relationships.
So in some, I think what we're trying to do here is make what we might call impossible conversations a bit possible.
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,
what we could have helped her with what health care professional could help do with
is her own feeding to her understanding and the lack of isolation in this family.
We couldn't have changed the trajectory of the father's condition.
That was something that no one could change.
But what they could do was to help the family with this and certainly to help this young girl with her isolation.
Thank you.