November 20, 2020 • 45 mins
Professor Lucy Bray is a Professor in Child Health Literacy in the Faculty of Health and Social Care at Edge Hill University in the UK and the Children's Nursing Research Unit at Alder Hey Children's Hospital.
Professor Bray has worked within acute children’s nursing for over twenty years, specialising in children’s surgery.
Her research interests include the education, information needs and preparation of children, young people and their parents for surgery, procedures and interventions. Her work explores how children and young people can be provided with information in a meaningful and timely way.
The majority of Lucy’s research is based on qualitative research approaches and uses innovative methods which aim to facilitate the involvement of children and young people.
Follow Professor Bray on Twitter here.
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Thinking of Oscar website and contact details can be found here.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Lucy (00:00):
We completely underestimate often what
(00:02):
children know. A lot of theinformation that we protect
children from is often throughtrying to do good. Through often
as adults, assuming that we'reacting in children's best
interest that we don't want toworry them, we don't want to
call them upset. But often whathappens when you do that is you
you exclude the children frohaving the opportunity to joi
(00:24):
you on a journey and to undrstand actually what's hap
ened. We know from quite a lotof work that if you don't give t
e opportunity for children to hve that conversation and have th
t information, they'll fill thegaps in themselves often with
information that isn't right.
What might have been somethinquite simple that's been kind
of protected and not shared. Chidren will often think tha
(00:45):
there's something far worse hppening or something very d
fferent and they'll fill tht with their own imaginations.
t can lead to a lot of misinforation and actually m
re anxiety than would have beenaused in the first place may
e through having those conversaions with them.
David (01:08):
Welcome once again, to the Not Mini Adults Podcast,
Pioneers for Children's HealthCare and Well Being. My name is
David Cole and together with mywife, Hannah, we are the co
founders of UK children'scharity, Thinking of Oscar. This
is the ninth episode of oursecond season. If you've ever
had a child who has had to gointo hospital to have a
(01:28):
procedure and you've notnecessarily understood or known
what to say to them. You feltequally that they haven't been
given enough information aboutwhat's going on, then this is
the episode for you. Today weare joined by Professor Lucy
Bray. Lucy is a professor inchild health literacy in the
Faculty of Health and SocialCare at Edge Hill University in
(01:49):
the UK, and also works at theChildren's Nursing Research Unit
at the Alder Hey Children'sHospital. Professor Bray has
worked within acute children'snursing for over 20 years,
specialising in children'ssurgery. Her research interests
include the education,information needs and
preparation of children, youngpeople and their parents for
surgery, procedures andinterventions. Her work explores
(02:12):
how children and young peoplecan be provided with information
in a meaningful and timely way.
The majority of Lucy's researchis based on qualitative research
approaches and uses innovativemethods, which aim to facilitate
the involvement of children andyoung people. We had a truly
wonderful conversation withLucy, and we hope you enjoy it
as much as we did.
(02:39):
Lucy. Hi, thank you so much forjoining us on the Not Mini
Adults Podcast. We're sodelighted to have you on.
Lucy (02:46):
It's an absolute pleasure.
Thanks so much for asking. Thankyou.
David (02:50):
Welcome. Well, as you know, one of the things that we
try to do is to get our currentlisteners to give us
recommendations of people thatwe should talk to and you were
one of those people from DonRabanne who's we've been, you
know, working with for quite along time now. He was actually
our first person that we spoketo on the podcast. It was a long
(03:10):
time ago, that we did it. But hesaid so many great things about
the work that you're doing andthe importance of how that links
to, I guess, to his work.
Empowerment, I think is one ofthe things that we're going to
talk about. Is a theme that kindof runs through a lot of the
conversations that that we have.
You're, I guess, looking at itfrom a slightly different
(03:32):
perspectiv, and we'll talk aboutthat as we move forward with
health literacy and how thatwas. But I think just to begin
with, if we could just kind of,maybe take you back a little bit
and say. How did you get to bedoing what you're doing? How
did you start working with inpaediatrics and child health?
Lucy (03:51):
Okay, so I suppose I was always very interested in
working in some way withchildren, young people, even
from school, I knew that thatwas what I wanted to do. I'm not
sure why but it always wassomething that appealed very
much and considered teaching.
Did some placements in kind ofprimary schools and thought
maybe not for me. Then spentsome time shadowing medical
(04:13):
colleagues and although it wasvery interesting, didn't feel
that it really matched what Icould see myself as doing. So
went into a nurse training. Sowas one of the first kind of
degree cohorted nurses when theywere looking at nursing becoming
a degree based profession andabsolutely loved it from day
(04:35):
one. It was a four year courseand did a range of placements in
lots of different settings andnever really looked back. It's
always felt such a privilege towork with children, young
people. I think from day one,the ability of children and
people to cope with quiteadverse circumstances is pretty
amazing to see. I think they putadults to shame. I think when
(04:58):
you see them cope with really,really difficult circumstances
and how they do that. So workedwith children having operations,
so plan surgeries, some minorsurgeries, some quite major kind
of surgical procedures. Wasstruck from quite early on, I
suppose I've always been one ofthose people that wondered why,
which can be quite annoying attimes, probably. But so it's the
(05:20):
why is it like this? or are howcan be in a situation that this
happened? Children, young peoplecoming for operations and
procedures, that really withinhealth services are pretty
minor, day to day procedures.
They're not the big proceduresthat we might invest a lot of
time in preparing children for.
Quite minor kind of day surgeryprocedures and was struck by the
(05:44):
fact that many of thesechildren, young people didn't
quite know what to expect. Sooften, when a child is admitted,
they will be weighed, they'llhave anaesthetic cream for time,
someone will come and talk tothem, the anethetist will see
them. But actually, there seemsquite a gap in the speed of the
admission and anyone reallyhaving the time to sit down and
(06:04):
talk to the child and the parentabout what was going to happen.
What that would look and feellike for them. Was really
interested in how we could dothat. Talking to parents, they
would say how some of in somecases that struggle to know what
to say to their child. So wewould have children admitted who
(06:26):
have been dressed in theirschool uniform, and drip into
the hospital in their car andwill suddenly putting the gown
on and was having an operationbecause the parent hadn't wanted
to upset their child by tellingthem that they were going to
have an operation. They didn'twant their child to be worried.
So absolutely best interests atheart. But actually, that
created problems then when thatchild arrived at hospital,
(06:47):
obviously what a shock to themsuddenly, you know, be having an
operation, or a procedure. Thereseemed a real area there for
improvement and we could dothings better. So at that point,
was looking at doing some kindof further education. I've
always quite enjoyed studying,quite enjoyed reading and
finding out things we dont know,a lot of people below Oh, no.
(07:09):
But I really, really enjoy thatkind of aspect. Started to look
at the evidence around how weprepare children for procedures.
What are their informationneeds? So what does the child
who's come into hospital for,say, a tonsillectomy? What
information do they want toknow? We know what they are
provided with but what what dothey actually want to know. I
(07:32):
was really struck by a lack ofevidence that we had lots of
information from healthprofessionals, we had lots of
information from parents, whichof course is really useful. But
no one had actually askedchildren themselves. So what do
you want to know. So one of myfirst projects was looking at
children who were coming in forminor procedures. What their
(07:55):
information needs were. Thesechildren, were telling stories
of, the hospital would send outa leaflet to their parents,
nothing specifically for thechildren and their child would
try and read it to try and workout what it meant the language
wasn't very understandable.
(08:16):
Children would say things likethe parents, like well, I think
he's off his food a bit, becausehe hasn't been eating really
well for the last weeks. Thenyou turn around and talk to the
child they would tell you howthey were practising not having
breakfast so that when theiroperation came, they wouldn't be
hungry in the morning. Theparent wasn't really aware of
that. But the child had readsomething about fasting, and was
(08:37):
working through, you know,developing their own strategies
for kind of coping with that.
There was a real lack ofevidence of children actually
informing what we do for thosechildren and young people before
they come into hospital. Thatinterest kind of continued,
continuing to work as a nurse. Ialways felt very passionate, to
remain kind of clinicallygrounded. To remain working with
(08:59):
children, young people as anurse, and that really informed
a lot of early research that Iwas involved in. To actually see
a problem in practice and beable to work, work from practice
in the children up to develop aproject. I think always means
that hopefully the work thatyou're involved with makes the
most difference. Then expandedthat work and ended up doing a
(09:23):
PhD, was approached by mymaster's supervisor who was
Professor Peter Calorie who wasfabulous and approached me to
say, did I want to do a PhD.
Which seemed the strangest thingbecause I didn't know anyone
who'd ever done a PhD. I didn'treally know what one was.
(09:43):
Ofcourse, how could I possiblybe capable of doing a PhD?
That's for like really cleverpeople. So embarked upon a
journey of part time PhD whileworking clinically and within
the hospital. Then I think thatproject focused on young people
(10:04):
who were having surgery for longterm conditions. So these were
children, young people who'vebeen born with a condition where
surgery was always going to beon the horizon. Surgery was
always going to be apossibility. At what point, the
decision was made for thatsurgical procedure. This this
was a procedure for children whoneeded a continence dermis or
(10:26):
needed management to managetheir continence into adulthood.
So this was a an operation thatwas done that required lifelong
kind of management. Talking tothose children, young people
about how much they hadunderstood about that decision
how much information they'd hadabout that. Whether their
expectations of it had matchedthe reality of living with it.
(10:48):
Often, some of the young peoplewould talk about that, that they
hadn't really understood what itwas and therefore living with
that afterwards felt quite hard.
Because they felt that theyhadn't really signed up for
everything that was involved forthem. Whereas other young people
who've maybe been a little bitmore active in that decision and
fully understood what itinvolved, felt happier with the
(11:09):
outcomes. So really started tosee this link between children
having information andknowledge, being able to then
get involved in those choicesand interactions and
consultations, and how that hadimpacted them. Change the
outcomes, so how that could makethem have a better experience.
(11:31):
Adapt to life with a conditionor a treatment better. You said
right at the beginning aboutempowerment, and really that's
the thread that runs through.
Unless you really haveinformation, and know what's
gonna happen to you, becausemost of the time, it's the
children, the young people thatsomething is happening to. It
(11:54):
makes it really hard to takeownership of whatever that is,
whether that be treatment or adisability or a long term
condition. Unless that happens,then it then it makes it really
hard for those children, youngpeople. After doing my PhD,
there was a part time positionthat was advertised within
academia, It wasn't reallyanywhere that I had to see
(12:15):
myself working. I loved workingon the ward remained really
passionate. Then came to alittle bit of a difficult point
where I had to make a decisionthat when I was in charge of a
ward, it was really difficultwhen I wasn't there enough. When
I was working at the university,there were things that I
couldn't do properly because Iwas on the ward on those. I had
(12:38):
to make the difficult decisionto leave clinical practice. It
was a really difficult decisionbecause I did love that job. But
I've thoroughly enjoyed workingwithin the university. It's
helped kind of develop aprogramme of research, really, I
suppose around children'sinformation. So probably worked
(13:01):
for maybe 10 years on variousprojects, looking at children
and young people and what theyknew about conditions, what they
understood about procedures, andhospitals and who nurses are and
all those things that we cansometimes take for granted. It
was only really when I wasfortunate to be promoted to a
(13:24):
professor, where you have tochoose your professor name. So
you get to choose what you're aprofessor in. I spent a lot of
time kind of reading aroundhealth literacy and was very
interested in the notion of it.
Actually looking back, that hasalways been the frame for my
work, but didn't necessarilylabel it as such. It felt like
it was kind of always meant tobe but at the beginning of that
(13:49):
journey, I hadn't really heardof what health literacy was. It
was just, I was responding tokind of like identified needs in
practice, I guess things that Ifelt could make a difference to
children and young people.
Things that children and youngpeople were saying that was
missing and lacking and thatthere was a need for. To arrive
(14:09):
at the point of being associatedwith health literacy feels feels
like home, it feels like workwas always heading there.
Hannah (14:18):
It was like you had to do that work to find the label.
Did you?
Lucy (14:22):
Yeah,
Hannah (14:22):
Theres nothing you could aim for, because you were the
person and I appreciate that youwill have peers around you and
other people that you learnfrom, but you've been part of
spearheading that. I think it'sfair to say.
Lucy (14:35):
Yeah, so and I think you from every piece of work you do
from every interaction that youhave with colleagues. I've been
lucky to work with some amazingcolleagues over the years. Every
interaction and project that youwork with you learn something
from that and you take it on toyour next one. Every interview
that I've done with a child anda young person or a parent you
(14:57):
learn from. It is a massiveprivilege to go into families
homes and them tell you abouttheir experiences of something,
which is often been a difficult,you know, difficult occasion or
a difficult event in their life.
It does feel such a privilegeand you take something from
every one of those interactionsand every one of those projects
and it builds together as awhole, I guess. So I feel really
(15:20):
fortunate, but never at thebeginning of being a children's
nurse would have thought thatthis was where I would end up.
But yeah.
Hannah (15:31):
You reminded me of ,its an Oscar reference, actually. So
when we were in hospital withOscar, which, as you probably
know, was a short period oftime. Obviously nobody expected
that we would be leaving himthere. Holly was picked up by a
(15:52):
friend and neighbour and broughtin and we asked to speak to the
psychologist as to what weshould, what should we say to
her cuz I had no experience withthis obviously. But I knew that
what we were going to say wasgoing to be really important. So
we were told about using reallyclear language. Don't say he's
(16:12):
fallen asleep, don't say he'snot coming back. You know, just
be really, really clear over onthe language that you use. So we
did that. Obviously, it wasdifficult, but she heard it.
Then that was on the Thursdaymorning, we had to talk to her.
Then on the Saturday, thing isshe was three and three
(16:34):
quarters. So we still had to beat ballet at 9:30 on Saturday
morning, but it was easier justto keep everyone going at their
routine. I remember driving outof the driveway and she made
some passing comment on what'seasier without Oscar being
around or something. I rememberslamming my foot on the brake
and explaining in very, veryclear language that that was,
you know, that she really didn'tmean that. She never ever got
(16:58):
muddled on that again. David andI have been able to follow the
path that we have followedsubsequently, thanks to
counsellor who came into ourlife really soon after he died.
She was just, Maui wasabsolutely amazing. She helped
(17:20):
us sort of carry on with that.
With that learning that childrenunderstand so much more than you
appreciate. The only thing youneed to do is moderate it. Don't
answer the question that youthink they've got, answer the
question that they ask you. Sothat means that you can always
keep it within the scope oftheir understanding. The reason
I said this now, because thisstory is about you and the
(17:45):
journey that you've been goingon. Whenever people are talking
about a situation or you know,other events that happen in
people's lives, that might bedifficult and they don't want to
tell their kids about them. I'vealways just learned so much
from, if Holly can understanddeath from three and three
quarters, you know, then andshe's not unique. It is helped
(18:07):
me spot other things that otherchildren are understanding and
communicate with themdifferently as a result. I think
the whole underestimating kidsand young people thing is we
accidentally do it and yet,there's an awful lot of wisdom
comes out of children and youngpeople's minds isn't there.
Lucy (18:29):
There is absolutely, and I think obviouslythat's an example
of one of the most hardest bitsof information to share. I
can'timagine doing that. That isreally, really hard. But you're
right, we, we completelyunderestimate often what
children know. A lot of theinformation that we protect
(18:51):
children from is often throughtrying to do good through often
as adults, assuming that we'reacting in children's best
interest. That we don't want toworry, then we don't want to
call them upset. But often whathappens when you do do that is
you exclude the children fromhaving the opportunity to join
you on a journey and tounderstand actually what's
happened. We know from quite alot of work that if you don't
(19:17):
give the opportunity forchildren to have that
conversation and have thatinformation, they'll fill the
gaps in themselves often withinformation that isn't right.
What might have been somethingquite simple that's been kind of
protected and not shared.
Children will often think thatthere's something far worse
happening or something verydifferent.They'll fill that with
their own imaginations and itcan lead to a lot of
(19:39):
misinformation and actually moreanxiety than would have been
caused in the first place maybethrough having those
conversations with them. But Ithink you're right Hannah. It's
so important to be led bychildren. So rather than I think
sometimes what can happen inreally busy constrained health
services is that we provideinformation, we give information
(20:01):
and therefore the child's gotthe information that they need.
But there isn't always the timeto go back to that information
at a later time. There isn'talways a time to say, okay, so.
So tell me what you understandabout that now and to check back
what they've gained and whatthey've understood. So we know
we've been doing some worklooking at kind of like prep
(20:24):
sheets, which are questions forchildren and young people to
ask. So rather than being toldthis and this, their questions
that they might want to ask ofhealth professionals when
they're having thoseinteractions. I think that just
helps. Helps children know thatthey're welcomed to ask
(20:45):
questions, because sometimeswhen in kind of busy health
services and busy clinics.
Parents have got agendas.
Parents have got lots ofquestions to ask,
understandably. The healthprofessionals got lots of
important information toprovide. Sometimes it feels too
busy for the child to asksomething that seems quite
simple and might not be the bestquestion. Sometimes they can
(21:08):
kind of stay quiet and not feelable. So by providing something
it legitimises that actuallyyou're here, you're a really
important part of this, you arethe most important part of this
conversation. Ask the questionsthat you want. I think you're
right, just thinking about whatyou were saying then that we
(21:28):
assume there's so manyassumptions made about
children's competencies, in thatwe assume that a five year old
is too young to understand, buta 13 year old will be fine and
will know what's happening. Soactually, a five year old, is
probably very capable ofunderstanding, if it's provided
in the right way, and discussedin the right way. And a 13 year
(21:50):
old, it might be the first timethey've ever interacted with
health services ever. Soactually, they might be less
able to understand and navigatewhat's happening. But an eight
year old, who's had lots ofcontacts. So we make assumptions
all the time we make assumptionsthat parents will know how to
have conversations with theirchildren about procedures. I
mean, this is this is myresearch, my whole research
(22:13):
field, it's my life for 15years. If my children need to go
for a procedure, it's quitedifficult to know, when do you
say, what words do you use,because you really don't want to
create extra anxiety for them.
You want to make sure thatthey're prepared and that they
know what's going to happen. Itcan be really hard. But I think,
(22:33):
you know, there are so manyassumptions made. So parents
might assume that the healthprofessional will talk to their
child about what will happen.
Health professionals mightassume that parents have had
those conversations. So you canbe left with a bit of a hole
when no one's providing theinformation. There's some
amazing resources out there. Butwe know for some of the work
we've done that people thataren't necessarily actively go
(22:54):
and look for information. Theywant to have information
provided for them, they want toendorsed by the person that
they're going to see. There'slots of points along the
journey, that things can goreally well Or that a child can
be left uncertain and a bitanxious and lacking in
information.
Hannah (23:32):
How do you implement that change? Because we
understand how constrained thehealth services anyway. Even if
money were no object is still amammoth organisation. So it's
never going to be easy. When youtalked about the prompts, for
(23:54):
example, is that made availableto the child via the appointment
setting process? ,
Lucy (24:00):
Yeah so I think, from experience, you can kind of
implement the best kind ofhealth professional information,
training ,speech, developingyoung people as much as
possible. That will work to anextent. But I think my passion
is that children and youngpeople are empowered to take
some , not responsibility . Butit's expected that they will
(24:27):
they'll have access toinformation. So children don't
exist in a bubble. So if there'shealth services, we want them to
come informed and prepared andwe know what's going to happen.
It's not just giving a child aleaflet. It's bigger than that,
it's recognising that theparents know that it's important
(24:49):
for the children to haveinformation. Its health
professionals recognising thateven a young child should be
involved in that. Increasinglyhealth literacy and kind of my
work is focused on empoweringchildren and young people. So
it's making that informationvisible. It's making that
information accessible. So likethe prompt sheet that we've
made. We've created animationsin the past, working with
(25:13):
children and young people. Sochildren and young people very
much telling us what they wantto know when they come. So these
are the things that is importantto include. I think it's so
great working with children,young people, because if the
environment right and therelationship is there, and it's
trusting. They will tell youexactly what's right and what's
(25:33):
wrong about the work that you'redoing. I think any of my work
has always been more, you know,the better for children and
people saying, well, I wouldn'tdo it like that, I think you
need to do it like this. Sowe've been able to change and
adapt what we've created.
Looking at resources that arecreated for children and
youngpeople. But we have foundthrough some of the work that
(25:55):
we've done that when we focusedvery much on children, young
people, the parents have gone.
Yeh, but what about us and sowe've actually had to then go
and find additional funding.
Then create extra informationfor parents, with children and
young people always being theheart and an hour kind of
primary consideration. Butrecognising that parents also
have information needs, thatwhen they come, they might feel
(26:18):
a bit disempowered. Might not beable to feel able to ask
questions. I know I'm sure allof us have come home from an
appointment and thought. Oh, Iforgot to ask this or they said
something about medication, butI can't remember what it was
that they'd said. Becausethey're really often very busy
interactions. All of our work ischild centred, but recognising
(26:40):
that kind of wider system thatalso needs to be in place in
order for that child to be ableto use information that's
created for them, I guess. I'mnot sure if that answered your
question. I'm not sure if thatwent off on a bit of a tangent.
Hannah (26:55):
That was good to Im gonna hand over to DC as he's
been elbowing me.
David (27:01):
I was thinking when you were saying, what about us? What
about us? It just reminded me ofStuart and I know that Hannah
was thinking it as well. We weredriving along, slightly off
topic. So apologies for anyonelistening to this. But we were
driving along in the car. We'vegot a 10 year old, a five year
old and a two year old. Iremember us having a bit of a
kind of vote as to whatever itwas that we were going to do. We
asked a five year old and a 10year old, and they gave us a
(27:23):
vote. And suddenly the two yearold pipes up what about me?
Lucy (27:27):
Absolutely. Yeah, absolutely. As soon as children
have a voice at any kind oftable or any kind of choices and
decisions, then they're lifelongskills in a way. So within our
health system as it is we, youknow, we can be quite kind of
paternalistic of children, andthen suddenly they hit
(27:47):
transition at 16 18. They areexpected to go into appointments
on their own. That can be a realshock for some children, young
people who've always had aparent to advocate for them and
speak for them and report forthem. It's their lifelong skills
in children and young people,knowing how to look for credible
(28:10):
information. Knowing whatcredible information looks like
and then being able to processthat, understand it and see that
they can participate and usethat knowledge in shaping their
own behaviours and their kind ofchoices. It is such a lifelong
skill and it's too late to waituntil young people are 14 15 16
(28:32):
and then suddenly think, oh,they're, they're adolescents, we
should be involving them.
Obviously, you wouldn't involvea three year old in it in a
major life surgery decision. Butthere are choices that children
can always be involved in, allthe way through. Assumptions
about how how big a child has tobe before they can be involved,
can sometimes disadvantageyounger children from really
(28:56):
learning those skills.
David (28:59):
When we first spoke, there was one thing that struck
me that you were discussing,which was that, just the way in
which different childrenunderstand different things. But
also if they've been in thesystem for a while, they start
to talk in medical lingo, butthey don't necessarily fully
understand it. But they canconverse, because they've been
(29:22):
around it for a while. But thatjust seems to be you know,
there's real trouble aroundthat..
Lucy (29:28):
Yeah. I think that's also the way that that some health
professionals and the systemskind of work in. a child, young
person comes in, and they cantalk about, I don't know peak
flows and blood sugar levels andthey can talk about the things
that they hear in conversationall the time. But I know some of
(29:50):
our work has shown that evenolder young people can do day to
day management. Can talk in avery medicalised language,
because that's what they'velearned over many years of
engaging with health services.
But if you sit down in depthwith them and say, so what is
your condition. What is it thatyou have and what happens in
your body that makes that so.
(30:12):
Some of them can really struggleto actually tell you what that
is, especially if it's acondition that may be started
from birth. If it's a congenitalcondition, because all of those
diagnostic conversations, all ofthose initial condition,
conversations can often happenbetween healthcare professionals
and parents. Can often beassumed as that child passes
(30:35):
through the system for the nextfew years that someone has
actually sat down and spent alot of time with that child
looking at what they see iswhat's happening in their body
and what happens. We've talkedto our number one child who was
14, who had a diagnosis ofscoliosis. Who thought that it
(30:57):
was. Didn't realise it was herspine. She got quite a long way
along, she had seen a physio forthe altered posture. Didn't
quite understand that it was herspine thought it was her muscle
rather than her spine that havebeen affected. There's
opportunities there to have aconversation with that young
(31:20):
person to check what theirunderstanding is. What do you
understand about what'shappening? We've spoken to
younger children with asthma,who would draw, when they draw
what their asthma is they mightdraw. One of the children drew a
really big heart, because whenthey're having an asthma attack
their heart pounds. When theythink of their asthma, they
think of their heart. That'swhere they thought it was, they
(31:43):
thought it was in their heart.
It's not until you you know, youspend time actually sitting down
and play specialists andprofessionals throughout the
health service that are oftenreally good at this. To sit down
and actually check out, what doyou understand about this? What
are your understandings of this?
(32:05):
Unless that happens, that childand young person can get to
quite an old age and notactually fully understand what
it is they have.
Hannah (32:13):
Has your work in the past encompass the impact of
labels. Labelling a child orlabelling a condition because we
spoke to Professor Neil Sebirefrom Great Ormond Street in
series one. He had, it was offon a tangent, so we didn't fully
explore it with him. But he hada really strong opinion of it. I
(32:33):
think the idea that, I thinkthat the very highest level was
that giving somebody a label, itcan actually mean many, many
things. It's just not asstraightforward as the title is
Lucy (32:47):
No. We've worked with families with children with a
disability who fought for yearsfor a label and not because it
made any difference to them ortheir child or their family. But
it just meant that servicesopened up to them that weren't
available without the label.
Some work that we've done withchildren with chronic lung
disease didn't use the label.
(33:11):
Didn't like the term chroniclung disease, because people
would tease them that it wasinfectious, that they might
catch it from them, they didn'twant to play with them in the
playground, because it had theword disease in it. That has
connotations of concern for somechildren and young people. So
they said they had asthma, whichwhich was a far more
recognisable condition. So theseare quite young children making
(33:34):
decisions about how theyrepresent themselves and their
condition to other people. To beable to join in with peers and
friends and make choices aboutwhat they share and what they
don't share about conditions andtreatments that they have.
Unless there's those openconversations, children are
making those decisions sometimeson their own. In what can be
(33:56):
tricky circumstances.
David (33:58):
When you were talking at the beginning and just kind of
sharing your journey as to howyou've got to what you're doing
and the research that you'vedone. It just struck me as to
how this hasn't come about inthe past and how someone hasn't
really looked, you know, hasn'tlooked at it. It does play into
that kind of Not Mini Adults andthere's an assumption that is
(34:19):
made that people either do talkto their children, and have the
ability to do that, or the wantto do that, or the foresight to
do that, or that just children,you know, miraculously
understand what's going on.
Lucy (34:32):
Yeah.
David (34:34):
I think you taking the decision to move out of clinical
practice and move into, youknow, the research area and
we've heard it from a fewpeople, both friends and
colleagues and people that we'vespoken to. It's an opportunity
for you to to help many, manymore children than you would
have been able to do on a kindof one to one basis. But I'm
(34:57):
actually interested in how yourwork and research works on a
more global scale. So whatyou're doing is obviously,
within the UK within theparameters of the kind of local,
so working in Alder Hey. I thinkyou've done, you know, working
and then in and around thenortheast and what have you, but
(35:18):
what about more global scale? Sodo you interact with other
hospitals around the world? Whathave you learned from them or
vice versa? Yeah,
Lucy (35:27):
Yeah so I'm quite fortunate to linked colleagues,
specifically from Australia andNew Zealand. A colleagues that I
work with Benny Carter. We havelinks with guys in New Zealand
and Australia. So we've donework using kind of arts based
methods where we've exploredchildren's understanding of
their conditions and how theymanage that. It's been really
interesting to work with. Realsimilarities between the
(35:51):
countries. I mean, obviously,these are developed countries.
They have quite similarities inthe way that the health systems
work, but real similarities inin the way that children kind of
approach their understandings ofillness and condition. So the
recent project that we've beenworking on looking at children's
kind of understandings ofCoronavirus and the information
(36:13):
that we have around that. Wewere really fortunate to work
with colleagues from Sweden andCanada and Brazil, Spain,
Australia and New Zealand.
Again, real similarities,despite all the different ways
that all the countries copedwith lockdown and restrictions
and whether children went toschool or stayed at home. There
wasn't massive dissimilaritiesin the information that children
(36:34):
had. The information thatchildren wanted and kind of the
approach that families andsociety had to sharing
information with them. Soalthough a lot of the work is
based, kind of in the north ofEngland and i think that's
arisen from wanting to work on aone to one direct level with
children, which is difficultwhen they're spread all around
(36:57):
the world. That passion toactually sit down with children
and look at look at theirunderstandings and information.
But actually, the things that wefound have applicability and
transferability, to most well,to many kind of cultures and
societies. In which children areoften seem to be less capable
than they are. But just to pickup on a point that you were
(37:22):
saying about, that justgenerally, children don't have
the information that they need.
I think that open conversationwill acknowledge those children
that don't want information. SoI think it's just having a note
of caution that not all childrenwill want to be involved, to
have information, to makechoices and decisions. But it
(37:46):
should be the children's choiceto not rather than it being an
assumption that they won't. Sojust picking up David, you were
saying there about parentshaving skills to tell their
children about things. It mightbe that the child actually
doesn't want to know. It'sasking, so it might be that the
child wants to know, that has aquestion about this. If you're
(38:08):
led by the child, they mighthave a question about a and then
you can answer a, they don'twant to know x, y, and Z. That's
fine, because they'veacknowledged actually I don't
want to know that now. You canpick that up at a later date.
But just like adults, childrenare unique and individual. So
they need to be able to have achoice of actually what
(38:29):
information and things theywant. Sorry, I was just
thinking, I should have saidthat. I need to say that before.
So thank you for letting me addthat in.
David (38:36):
I think we feel like we could probably talk to you talk
to you for hours. But there's acouple of questions that I just
wanted to kind of finish upwith. One is, if any parents are
listening to this, and they are,you know, and their children or
child is having to go in for anyprocedure, is there any guidance
that you would give them interms of how to talk to them? Or
(38:57):
just, you know, kind of addressthat and think about going about
that kind of activity.
Lucy (39:02):
Yeah. So I think no matter what age the child is. We know
that children tend to copebetter with a procedure if they
have some information and theyknow what to expect. So anything
that you can provide the childwith is likely to help,
obviously be led by them, whatdo they want to know what
questions do they have? Thefirst way to approach that is to
(39:23):
tell them that what's going tohappen tell them that in a
week's time, we're likely to goin and have this procedure or
we're going to go and see thedoctor and we're going to do
this. There's a lot of evidencefor younger children, it might
be that you only kind of tellthem a few days before whereas
older children will want alonger period of time to process
(39:44):
the information and think uptheir own kind of questions. We
know that younger children arequite interested in the what?
where? who will be there? Whatwill it look like? Who will do
what? Will you be with me? Willmum and dad be able to stay with
me? Whereas older children aremore interested in kind of what
will it feel like, what can Ichoose about this. But if you
(40:07):
kind of led by your child, thenit's easier to have those
conversations. There's someamazing resources out there. If
you're a bit stuck to know whatto say, there's charities. Dom's
amazing digital platform ofexplorer, which has kind of 3D
modelling of procedures. Thechild can see what it will look
(40:29):
like, hear what it will soundlike, see, he'll be there, know
the difference between a nurseand a doctor. Actually, they're
not entering an environment ofuncertainty and strange people.
They know what what's going on.
So already that they're feelingmore informed. There's children
in hospital, which is a charitythat creates videos about a
massive range of procedures. Soyou can watch those with your
(40:53):
child and go back and look atthem again. There's books,
there's cartoons, there's somany resources, but it has to
start with telling your child inthe first place. So having that
conversations. We know that ifchildren do know, then they will
have a better experience. It'snot just the one experience,
(41:14):
there's sometimes the firstinteraction that a child has
with health services is soimportant. Because if that goes
wrong, then that can sometimesimpact on that child's future
engagement for the rest of theirlife. So you can end up with a
child that doesn't want to goand have immunizations. A child
that doesn't want to go tofuture appointments. So it is
(41:37):
really important to get it rightfirst time. Although it may feel
tricky, is really important totalk to your child about what
might what might happen.
David (41:49):
No, thank you and sorry.
I thought one other question Iwanted to ask. What next? in
terms of your research and whatyou want to do what what next?
Lucy (41:59):
Well, I suppose there's just so many, there's so many
ways in which children arecurrently, I suppose not
afforded the voice that theyshould have and could have
within kind of services. I wouldlike to work more with children,
young people creating resources,but it's not just creating the
(42:21):
resources. But I think as afield, we need far more evidence
about the impact that thesemake. So that we, we have
evidence to show that childrenwill have a better experience if
they know what's going to happenand they're prepared and they
understand. But we need more ofthat evidence. Because
otherwise, it's really hard tosell to funders that creating
(42:43):
these resources with childrenfor children is worth the
investment. That sounds quiteobvious but how can it not be
worth the investment to createsomething as simple as a an
animation or a leaflet forchildren. But unless you've got
evidence to show that, that thiswill impact and reduce the costs
(43:04):
of the NHS by so much then it'shard to it's hard to gain
funding to create these theseresources in the first place. So
I think it's havingopportunities to create and work
with children, young people alittle bit more to understand
what health literacy looks likefor them for various kind of
interactions and conditions, butalso to build on this evidence
(43:26):
that actually this stuff doesmatter.
David (43:33):
Our final question, I think we say this to to
everyone, is that if you had amagic wand, and you could do and
solve anything within childhealth, what would it be?
Lucy (43:45):
That's a really mean question. That's a really hard
question to answer. Because, ofcourse, you'd wish that children
were never poorly and so neverneeds to go to hospital anyway,
that wouldn't even be needed.
But I guess assuming that isalways going to be the case, I
think just that we canrecognise, just that systems are
in place to work with childrenso that their experiences can be
(44:09):
as good as possible. I guess andthat we don't miss those really
simple opportunities to sit downwith children and say hello and
ask them about how they'refeeling. Ask them about if they
have any questions. They arereally simple little points
along those trajectories thatactually can make quite a
difference to how children kindof experience health services.
(44:32):
But of course, if I had the bigmagic wand, then there would be
no need for health servicesbecause no one would ever be
ill.
David (44:40):
I think we will all agree with that book. Lucy, thank you
so much for joining us. It'sbeen such a, you know, such a
pleasure speaking with you. Ithink the topic that you are
just you know, your life's workas it were. It's so important
and we're so glad that we'vebeen able to find you and share
it and and have this discussion.
So thank you
Lucy (44:59):
Ahh Thank you very much.
Thank you.
David (45:07):
Again, thank you so much for joining us on the Not Mini
Adults Podcast. We're so keen tomake sure that these podcasts
are listened to by all the rightpeople. We do think that there's
an opportunity for people tohopefully be inspired by them
and help them in their careersin child health. A big thank you
to Lucy for also giving up hertime and having the conversation
with us. All the details forThinking of Oscar and also about
(45:31):
Lucy's work can be found in theshow notes. If you know of
anyone that you think that weshould be talking to, then
please do get in touch. Wereally hope that you can join us
again. If you've missed any ofour podcasts, then please go
back and listen to some of theamazing people that we've been
fortunate enough to speak to. Wereally hope that you're
listening again soon.
We completely underestimate often what
(00:02):
children know. A lot of theinformation that we protect
children from is often throughtrying to do good. Through often
as adults, assuming that we'reacting in children's best
interest that we don't want toworry them, we don't want to
call them upset. But often whathappens when you do that is you
you exclude the children frohaving the opportunity to joi
(00:24):
you on a journey and to undrstand actually what's hap
ened. We know from quite a lotof work that if you don't give t
e opportunity for children to hve that conversation and have th
t information, they'll fill thegaps in themselves often with
information that isn't right.
What might have been somethinquite simple that's been kind
of protected and not shared. Chidren will often think tha
(00:45):
there's something far worse hppening or something very d
fferent and they'll fill tht with their own imaginations.
t can lead to a lot of misinforation and actually m
re anxiety than would have beenaused in the first place may
e through having those conversaions with them.
David (01:08):
Welcome once again, to the Not Mini Adults Podcast,
Pioneers for Children's HealthCare and Well Being. My name is
David Cole and together with mywife, Hannah, we are the co
founders of UK children'scharity, Thinking of Oscar. This
is the ninth episode of oursecond season. If you've ever
had a child who has had to gointo hospital to have a
(01:28):
procedure and you've notnecessarily understood or known
what to say to them. You feltequally that they haven't been
given enough information aboutwhat's going on, then this is
the episode for you. Today weare joined by Professor Lucy
Bray. Lucy is a professor inchild health literacy in the
Faculty of Health and SocialCare at Edge Hill University in
(01:49):
the UK, and also works at theChildren's Nursing Research Unit
at the Alder Hey Children'sHospital. Professor Bray has
worked within acute children'snursing for over 20 years,
specialising in children'ssurgery. Her research interests
include the education,information needs and
preparation of children, youngpeople and their parents for
surgery, procedures andinterventions. Her work explores
(02:12):
how children and young peoplecan be provided with information
in a meaningful and timely way.
The majority of Lucy's researchis based on qualitative research
approaches and uses innovativemethods, which aim to facilitate
the involvement of children andyoung people. We had a truly
wonderful conversation withLucy, and we hope you enjoy it
as much as we did.
(02:39):
Lucy. Hi, thank you so much forjoining us on the Not Mini
Adults Podcast. We're sodelighted to have you on.
Lucy (02:46):
It's an absolute pleasure.
Thanks so much for asking. Thankyou.
David (02:50):
Welcome. Well, as you know, one of the things that we
try to do is to get our currentlisteners to give us
recommendations of people thatwe should talk to and you were
one of those people from DonRabanne who's we've been, you
know, working with for quite along time now. He was actually
our first person that we spoketo on the podcast. It was a long
(03:10):
time ago, that we did it. But hesaid so many great things about
the work that you're doing andthe importance of how that links
to, I guess, to his work.
Empowerment, I think is one ofthe things that we're going to
talk about. Is a theme that kindof runs through a lot of the
conversations that that we have.
You're, I guess, looking at itfrom a slightly different
(03:32):
perspectiv, and we'll talk aboutthat as we move forward with
health literacy and how thatwas. But I think just to begin
with, if we could just kind of,maybe take you back a little bit
and say. How did you get to bedoing what you're doing? How
did you start working with inpaediatrics and child health?
Lucy (03:51):
Okay, so I suppose I was always very interested in
working in some way withchildren, young people, even
from school, I knew that thatwas what I wanted to do. I'm not
sure why but it always wassomething that appealed very
much and considered teaching.
Did some placements in kind ofprimary schools and thought
maybe not for me. Then spentsome time shadowing medical
(04:13):
colleagues and although it wasvery interesting, didn't feel
that it really matched what Icould see myself as doing. So
went into a nurse training. Sowas one of the first kind of
degree cohorted nurses when theywere looking at nursing becoming
a degree based profession andabsolutely loved it from day
(04:35):
one. It was a four year courseand did a range of placements in
lots of different settings andnever really looked back. It's
always felt such a privilege towork with children, young
people. I think from day one,the ability of children and
people to cope with quiteadverse circumstances is pretty
amazing to see. I think they putadults to shame. I think when
(04:58):
you see them cope with really,really difficult circumstances
and how they do that. So workedwith children having operations,
so plan surgeries, some minorsurgeries, some quite major kind
of surgical procedures. Wasstruck from quite early on, I
suppose I've always been one ofthose people that wondered why,
which can be quite annoying attimes, probably. But so it's the
(05:20):
why is it like this? or are howcan be in a situation that this
happened? Children, young peoplecoming for operations and
procedures, that really withinhealth services are pretty
minor, day to day procedures.
They're not the big proceduresthat we might invest a lot of
time in preparing children for.
Quite minor kind of day surgeryprocedures and was struck by the
(05:44):
fact that many of thesechildren, young people didn't
quite know what to expect. Sooften, when a child is admitted,
they will be weighed, they'llhave anaesthetic cream for time,
someone will come and talk tothem, the anethetist will see
them. But actually, there seemsquite a gap in the speed of the
admission and anyone reallyhaving the time to sit down and
(06:04):
talk to the child and the parentabout what was going to happen.
What that would look and feellike for them. Was really
interested in how we could dothat. Talking to parents, they
would say how some of in somecases that struggle to know what
to say to their child. So wewould have children admitted who
(06:26):
have been dressed in theirschool uniform, and drip into
the hospital in their car andwill suddenly putting the gown
on and was having an operationbecause the parent hadn't wanted
to upset their child by tellingthem that they were going to
have an operation. They didn'twant their child to be worried.
So absolutely best interests atheart. But actually, that
created problems then when thatchild arrived at hospital,
(06:47):
obviously what a shock to themsuddenly, you know, be having an
operation, or a procedure. Thereseemed a real area there for
improvement and we could dothings better. So at that point,
was looking at doing some kindof further education. I've
always quite enjoyed studying,quite enjoyed reading and
finding out things we dont know,a lot of people below Oh, no.
(07:09):
But I really, really enjoy thatkind of aspect. Started to look
at the evidence around how weprepare children for procedures.
What are their informationneeds? So what does the child
who's come into hospital for,say, a tonsillectomy? What
information do they want toknow? We know what they are
provided with but what what dothey actually want to know. I
(07:32):
was really struck by a lack ofevidence that we had lots of
information from healthprofessionals, we had lots of
information from parents, whichof course is really useful. But
no one had actually askedchildren themselves. So what do
you want to know. So one of myfirst projects was looking at
children who were coming in forminor procedures. What their
(07:55):
information needs were. Thesechildren, were telling stories
of, the hospital would send outa leaflet to their parents,
nothing specifically for thechildren and their child would
try and read it to try and workout what it meant the language
wasn't very understandable.
(08:16):
Children would say things likethe parents, like well, I think
he's off his food a bit, becausehe hasn't been eating really
well for the last weeks. Thenyou turn around and talk to the
child they would tell you howthey were practising not having
breakfast so that when theiroperation came, they wouldn't be
hungry in the morning. Theparent wasn't really aware of
that. But the child had readsomething about fasting, and was
(08:37):
working through, you know,developing their own strategies
for kind of coping with that.
There was a real lack ofevidence of children actually
informing what we do for thosechildren and young people before
they come into hospital. Thatinterest kind of continued,
continuing to work as a nurse. Ialways felt very passionate, to
remain kind of clinicallygrounded. To remain working with
(08:59):
children, young people as anurse, and that really informed
a lot of early research that Iwas involved in. To actually see
a problem in practice and beable to work, work from practice
in the children up to develop aproject. I think always means
that hopefully the work thatyou're involved with makes the
most difference. Then expandedthat work and ended up doing a
(09:23):
PhD, was approached by mymaster's supervisor who was
Professor Peter Calorie who wasfabulous and approached me to
say, did I want to do a PhD.
Which seemed the strangest thingbecause I didn't know anyone
who'd ever done a PhD. I didn'treally know what one was.
(09:43):
Ofcourse, how could I possiblybe capable of doing a PhD?
That's for like really cleverpeople. So embarked upon a
journey of part time PhD whileworking clinically and within
the hospital. Then I think thatproject focused on young people
(10:04):
who were having surgery for longterm conditions. So these were
children, young people who'vebeen born with a condition where
surgery was always going to beon the horizon. Surgery was
always going to be apossibility. At what point, the
decision was made for thatsurgical procedure. This this
was a procedure for children whoneeded a continence dermis or
(10:26):
needed management to managetheir continence into adulthood.
So this was a an operation thatwas done that required lifelong
kind of management. Talking tothose children, young people
about how much they hadunderstood about that decision
how much information they'd hadabout that. Whether their
expectations of it had matchedthe reality of living with it.
(10:48):
Often, some of the young peoplewould talk about that, that they
hadn't really understood what itwas and therefore living with
that afterwards felt quite hard.
Because they felt that theyhadn't really signed up for
everything that was involved forthem. Whereas other young people
who've maybe been a little bitmore active in that decision and
fully understood what itinvolved, felt happier with the
(11:09):
outcomes. So really started tosee this link between children
having information andknowledge, being able to then
get involved in those choicesand interactions and
consultations, and how that hadimpacted them. Change the
outcomes, so how that could makethem have a better experience.
(11:31):
Adapt to life with a conditionor a treatment better. You said
right at the beginning aboutempowerment, and really that's
the thread that runs through.
Unless you really haveinformation, and know what's
gonna happen to you, becausemost of the time, it's the
children, the young people thatsomething is happening to. It
(11:54):
makes it really hard to takeownership of whatever that is,
whether that be treatment or adisability or a long term
condition. Unless that happens,then it then it makes it really
hard for those children, youngpeople. After doing my PhD,
there was a part time positionthat was advertised within
academia, It wasn't reallyanywhere that I had to see
(12:15):
myself working. I loved workingon the ward remained really
passionate. Then came to alittle bit of a difficult point
where I had to make a decisionthat when I was in charge of a
ward, it was really difficultwhen I wasn't there enough. When
I was working at the university,there were things that I
couldn't do properly because Iwas on the ward on those. I had
(12:38):
to make the difficult decisionto leave clinical practice. It
was a really difficult decisionbecause I did love that job. But
I've thoroughly enjoyed workingwithin the university. It's
helped kind of develop aprogramme of research, really, I
suppose around children'sinformation. So probably worked
(13:01):
for maybe 10 years on variousprojects, looking at children
and young people and what theyknew about conditions, what they
understood about procedures, andhospitals and who nurses are and
all those things that we cansometimes take for granted. It
was only really when I wasfortunate to be promoted to a
(13:24):
professor, where you have tochoose your professor name. So
you get to choose what you're aprofessor in. I spent a lot of
time kind of reading aroundhealth literacy and was very
interested in the notion of it.
Actually looking back, that hasalways been the frame for my
work, but didn't necessarilylabel it as such. It felt like
it was kind of always meant tobe but at the beginning of that
(13:49):
journey, I hadn't really heardof what health literacy was. It
was just, I was responding tokind of like identified needs in
practice, I guess things that Ifelt could make a difference to
children and young people.
Things that children and youngpeople were saying that was
missing and lacking and thatthere was a need for. To arrive
(14:09):
at the point of being associatedwith health literacy feels feels
like home, it feels like workwas always heading there.
Hannah (14:18):
It was like you had to do that work to find the label.
Did you?
Lucy (14:22):
Yeah,
Hannah (14:22):
Theres nothing you could aim for, because you were the
person and I appreciate that youwill have peers around you and
other people that you learnfrom, but you've been part of
spearheading that. I think it'sfair to say.
Lucy (14:35):
Yeah, so and I think you from every piece of work you do
from every interaction that youhave with colleagues. I've been
lucky to work with some amazingcolleagues over the years. Every
interaction and project that youwork with you learn something
from that and you take it on toyour next one. Every interview
that I've done with a child anda young person or a parent you
(14:57):
learn from. It is a massiveprivilege to go into families
homes and them tell you abouttheir experiences of something,
which is often been a difficult,you know, difficult occasion or
a difficult event in their life.
It does feel such a privilegeand you take something from
every one of those interactionsand every one of those projects
and it builds together as awhole, I guess. So I feel really
(15:20):
fortunate, but never at thebeginning of being a children's
nurse would have thought thatthis was where I would end up.
But yeah.
Hannah (15:31):
You reminded me of ,its an Oscar reference, actually. So
when we were in hospital withOscar, which, as you probably
know, was a short period oftime. Obviously nobody expected
that we would be leaving himthere. Holly was picked up by a
(15:52):
friend and neighbour and broughtin and we asked to speak to the
psychologist as to what weshould, what should we say to
her cuz I had no experience withthis obviously. But I knew that
what we were going to say wasgoing to be really important. So
we were told about using reallyclear language. Don't say he's
(16:12):
fallen asleep, don't say he'snot coming back. You know, just
be really, really clear over onthe language that you use. So we
did that. Obviously, it wasdifficult, but she heard it.
Then that was on the Thursdaymorning, we had to talk to her.
Then on the Saturday, thing isshe was three and three
(16:34):
quarters. So we still had to beat ballet at 9:30 on Saturday
morning, but it was easier justto keep everyone going at their
routine. I remember driving outof the driveway and she made
some passing comment on what'seasier without Oscar being
around or something. I rememberslamming my foot on the brake
and explaining in very, veryclear language that that was,
you know, that she really didn'tmean that. She never ever got
(16:58):
muddled on that again. David andI have been able to follow the
path that we have followedsubsequently, thanks to
counsellor who came into ourlife really soon after he died.
She was just, Maui wasabsolutely amazing. She helped
(17:20):
us sort of carry on with that.
With that learning that childrenunderstand so much more than you
appreciate. The only thing youneed to do is moderate it. Don't
answer the question that youthink they've got, answer the
question that they ask you. Sothat means that you can always
keep it within the scope oftheir understanding. The reason
I said this now, because thisstory is about you and the
(17:45):
journey that you've been goingon. Whenever people are talking
about a situation or you know,other events that happen in
people's lives, that might bedifficult and they don't want to
tell their kids about them. I'vealways just learned so much
from, if Holly can understanddeath from three and three
quarters, you know, then andshe's not unique. It is helped
(18:07):
me spot other things that otherchildren are understanding and
communicate with themdifferently as a result. I think
the whole underestimating kidsand young people thing is we
accidentally do it and yet,there's an awful lot of wisdom
comes out of children and youngpeople's minds isn't there.
Lucy (18:29):
There is absolutely, and I think obviouslythat's an example
of one of the most hardest bitsof information to share. I
can'timagine doing that. That isreally, really hard. But you're
right, we, we completelyunderestimate often what
children know. A lot of theinformation that we protect
(18:51):
children from is often throughtrying to do good through often
as adults, assuming that we'reacting in children's best
interest. That we don't want toworry, then we don't want to
call them upset. But often whathappens when you do do that is
you exclude the children fromhaving the opportunity to join
you on a journey and tounderstand actually what's
happened. We know from quite alot of work that if you don't
(19:17):
give the opportunity forchildren to have that
conversation and have thatinformation, they'll fill the
gaps in themselves often withinformation that isn't right.
What might have been somethingquite simple that's been kind of
protected and not shared.
Children will often think thatthere's something far worse
happening or something verydifferent.They'll fill that with
their own imaginations and itcan lead to a lot of
(19:39):
misinformation and actually moreanxiety than would have been
caused in the first place maybethrough having those
conversations with them. But Ithink you're right Hannah. It's
so important to be led bychildren. So rather than I think
sometimes what can happen inreally busy constrained health
services is that we provideinformation, we give information
(20:01):
and therefore the child's gotthe information that they need.
But there isn't always the timeto go back to that information
at a later time. There isn'talways a time to say, okay, so.
So tell me what you understandabout that now and to check back
what they've gained and whatthey've understood. So we know
we've been doing some worklooking at kind of like prep
(20:24):
sheets, which are questions forchildren and young people to
ask. So rather than being toldthis and this, their questions
that they might want to ask ofhealth professionals when
they're having thoseinteractions. I think that just
helps. Helps children know thatthey're welcomed to ask
(20:45):
questions, because sometimeswhen in kind of busy health
services and busy clinics.
Parents have got agendas.
Parents have got lots ofquestions to ask,
understandably. The healthprofessionals got lots of
important information toprovide. Sometimes it feels too
busy for the child to asksomething that seems quite
simple and might not be the bestquestion. Sometimes they can
(21:08):
kind of stay quiet and not feelable. So by providing something
it legitimises that actuallyyou're here, you're a really
important part of this, you arethe most important part of this
conversation. Ask the questionsthat you want. I think you're
right, just thinking about whatyou were saying then that we
(21:28):
assume there's so manyassumptions made about
children's competencies, in thatwe assume that a five year old
is too young to understand, buta 13 year old will be fine and
will know what's happening. Soactually, a five year old, is
probably very capable ofunderstanding, if it's provided
in the right way, and discussedin the right way. And a 13 year
(21:50):
old, it might be the first timethey've ever interacted with
health services ever. Soactually, they might be less
able to understand and navigatewhat's happening. But an eight
year old, who's had lots ofcontacts. So we make assumptions
all the time we make assumptionsthat parents will know how to
have conversations with theirchildren about procedures. I
mean, this is this is myresearch, my whole research
(22:13):
field, it's my life for 15years. If my children need to go
for a procedure, it's quitedifficult to know, when do you
say, what words do you use,because you really don't want to
create extra anxiety for them.
You want to make sure thatthey're prepared and that they
know what's going to happen. Itcan be really hard. But I think,
(22:33):
you know, there are so manyassumptions made. So parents
might assume that the healthprofessional will talk to their
child about what will happen.
Health professionals mightassume that parents have had
those conversations. So you canbe left with a bit of a hole
when no one's providing theinformation. There's some
amazing resources out there. Butwe know for some of the work
we've done that people thataren't necessarily actively go
(22:54):
and look for information. Theywant to have information
provided for them, they want toendorsed by the person that
they're going to see. There'slots of points along the
journey, that things can goreally well Or that a child can
be left uncertain and a bitanxious and lacking in
information.
Hannah (23:32):
How do you implement that change? Because we
understand how constrained thehealth services anyway. Even if
money were no object is still amammoth organisation. So it's
never going to be easy. When youtalked about the prompts, for
(23:54):
example, is that made availableto the child via the appointment
setting process? ,
Lucy (24:00):
Yeah so I think, from experience, you can kind of
implement the best kind ofhealth professional information,
training ,speech, developingyoung people as much as
possible. That will work to anextent. But I think my passion
is that children and youngpeople are empowered to take
some , not responsibility . Butit's expected that they will
(24:27):
they'll have access toinformation. So children don't
exist in a bubble. So if there'shealth services, we want them to
come informed and prepared andwe know what's going to happen.
It's not just giving a child aleaflet. It's bigger than that,
it's recognising that theparents know that it's important
(24:49):
for the children to haveinformation. Its health
professionals recognising thateven a young child should be
involved in that. Increasinglyhealth literacy and kind of my
work is focused on empoweringchildren and young people. So
it's making that informationvisible. It's making that
information accessible. So likethe prompt sheet that we've
made. We've created animationsin the past, working with
(25:13):
children and young people. Sochildren and young people very
much telling us what they wantto know when they come. So these
are the things that is importantto include. I think it's so
great working with children,young people, because if the
environment right and therelationship is there, and it's
trusting. They will tell youexactly what's right and what's
(25:33):
wrong about the work that you'redoing. I think any of my work
has always been more, you know,the better for children and
people saying, well, I wouldn'tdo it like that, I think you
need to do it like this. Sowe've been able to change and
adapt what we've created.
Looking at resources that arecreated for children and
youngpeople. But we have foundthrough some of the work that
(25:55):
we've done that when we focusedvery much on children, young
people, the parents have gone.
Yeh, but what about us and sowe've actually had to then go
and find additional funding.
Then create extra informationfor parents, with children and
young people always being theheart and an hour kind of
primary consideration. Butrecognising that parents also
have information needs, thatwhen they come, they might feel
(26:18):
a bit disempowered. Might not beable to feel able to ask
questions. I know I'm sure allof us have come home from an
appointment and thought. Oh, Iforgot to ask this or they said
something about medication, butI can't remember what it was
that they'd said. Becausethey're really often very busy
interactions. All of our work ischild centred, but recognising
(26:40):
that kind of wider system thatalso needs to be in place in
order for that child to be ableto use information that's
created for them, I guess. I'mnot sure if that answered your
question. I'm not sure if thatwent off on a bit of a tangent.
Hannah (26:55):
That was good to Im gonna hand over to DC as he's
been elbowing me.
David (27:01):
I was thinking when you were saying, what about us? What
about us? It just reminded me ofStuart and I know that Hannah
was thinking it as well. We weredriving along, slightly off
topic. So apologies for anyonelistening to this. But we were
driving along in the car. We'vegot a 10 year old, a five year
old and a two year old. Iremember us having a bit of a
kind of vote as to whatever itwas that we were going to do. We
asked a five year old and a 10year old, and they gave us a
(27:23):
vote. And suddenly the two yearold pipes up what about me?
Lucy (27:27):
Absolutely. Yeah, absolutely. As soon as children
have a voice at any kind oftable or any kind of choices and
decisions, then they're lifelongskills in a way. So within our
health system as it is we, youknow, we can be quite kind of
paternalistic of children, andthen suddenly they hit
(27:47):
transition at 16 18. They areexpected to go into appointments
on their own. That can be a realshock for some children, young
people who've always had aparent to advocate for them and
speak for them and report forthem. It's their lifelong skills
in children and young people,knowing how to look for credible
(28:10):
information. Knowing whatcredible information looks like
and then being able to processthat, understand it and see that
they can participate and usethat knowledge in shaping their
own behaviours and their kind ofchoices. It is such a lifelong
skill and it's too late to waituntil young people are 14 15 16
(28:32):
and then suddenly think, oh,they're, they're adolescents, we
should be involving them.
Obviously, you wouldn't involvea three year old in it in a
major life surgery decision. Butthere are choices that children
can always be involved in, allthe way through. Assumptions
about how how big a child has tobe before they can be involved,
can sometimes disadvantageyounger children from really
(28:56):
learning those skills.
David (28:59):
When we first spoke, there was one thing that struck
me that you were discussing,which was that, just the way in
which different childrenunderstand different things. But
also if they've been in thesystem for a while, they start
to talk in medical lingo, butthey don't necessarily fully
understand it. But they canconverse, because they've been
(29:22):
around it for a while. But thatjust seems to be you know,
there's real trouble aroundthat..
Lucy (29:28):
Yeah. I think that's also the way that that some health
professionals and the systemskind of work in. a child, young
person comes in, and they cantalk about, I don't know peak
flows and blood sugar levels andthey can talk about the things
that they hear in conversationall the time. But I know some of
(29:50):
our work has shown that evenolder young people can do day to
day management. Can talk in avery medicalised language,
because that's what they'velearned over many years of
engaging with health services.
But if you sit down in depthwith them and say, so what is
your condition. What is it thatyou have and what happens in
your body that makes that so.
(30:12):
Some of them can really struggleto actually tell you what that
is, especially if it's acondition that may be started
from birth. If it's a congenitalcondition, because all of those
diagnostic conversations, all ofthose initial condition,
conversations can often happenbetween healthcare professionals
and parents. Can often beassumed as that child passes
(30:35):
through the system for the nextfew years that someone has
actually sat down and spent alot of time with that child
looking at what they see iswhat's happening in their body
and what happens. We've talkedto our number one child who was
14, who had a diagnosis ofscoliosis. Who thought that it
(30:57):
was. Didn't realise it was herspine. She got quite a long way
along, she had seen a physio forthe altered posture. Didn't
quite understand that it was herspine thought it was her muscle
rather than her spine that havebeen affected. There's
opportunities there to have aconversation with that young
(31:20):
person to check what theirunderstanding is. What do you
understand about what'shappening? We've spoken to
younger children with asthma,who would draw, when they draw
what their asthma is they mightdraw. One of the children drew a
really big heart, because whenthey're having an asthma attack
their heart pounds. When theythink of their asthma, they
think of their heart. That'swhere they thought it was, they
(31:43):
thought it was in their heart.
It's not until you you know, youspend time actually sitting down
and play specialists andprofessionals throughout the
health service that are oftenreally good at this. To sit down
and actually check out, what doyou understand about this? What
are your understandings of this?
(32:05):
Unless that happens, that childand young person can get to
quite an old age and notactually fully understand what
it is they have.
Hannah (32:13):
Has your work in the past encompass the impact of
labels. Labelling a child orlabelling a condition because we
spoke to Professor Neil Sebirefrom Great Ormond Street in
series one. He had, it was offon a tangent, so we didn't fully
explore it with him. But he hada really strong opinion of it. I
(32:33):
think the idea that, I thinkthat the very highest level was
that giving somebody a label, itcan actually mean many, many
things. It's just not asstraightforward as the title is
Lucy (32:47):
No. We've worked with families with children with a
disability who fought for yearsfor a label and not because it
made any difference to them ortheir child or their family. But
it just meant that servicesopened up to them that weren't
available without the label.
Some work that we've done withchildren with chronic lung
disease didn't use the label.
(33:11):
Didn't like the term chroniclung disease, because people
would tease them that it wasinfectious, that they might
catch it from them, they didn'twant to play with them in the
playground, because it had theword disease in it. That has
connotations of concern for somechildren and young people. So
they said they had asthma, whichwhich was a far more
recognisable condition. So theseare quite young children making
(33:34):
decisions about how theyrepresent themselves and their
condition to other people. To beable to join in with peers and
friends and make choices aboutwhat they share and what they
don't share about conditions andtreatments that they have.
Unless there's those openconversations, children are
making those decisions sometimeson their own. In what can be
(33:56):
tricky circumstances.
David (33:58):
When you were talking at the beginning and just kind of
sharing your journey as to howyou've got to what you're doing
and the research that you'vedone. It just struck me as to
how this hasn't come about inthe past and how someone hasn't
really looked, you know, hasn'tlooked at it. It does play into
that kind of Not Mini Adults andthere's an assumption that is
(34:19):
made that people either do talkto their children, and have the
ability to do that, or the wantto do that, or the foresight to
do that, or that just children,you know, miraculously
understand what's going on.
Lucy (34:32):
Yeah.
David (34:34):
I think you taking the decision to move out of clinical
practice and move into, youknow, the research area and
we've heard it from a fewpeople, both friends and
colleagues and people that we'vespoken to. It's an opportunity
for you to to help many, manymore children than you would
have been able to do on a kindof one to one basis. But I'm
(34:57):
actually interested in how yourwork and research works on a
more global scale. So whatyou're doing is obviously,
within the UK within theparameters of the kind of local,
so working in Alder Hey. I thinkyou've done, you know, working
and then in and around thenortheast and what have you, but
(35:18):
what about more global scale? Sodo you interact with other
hospitals around the world? Whathave you learned from them or
vice versa? Yeah,
Lucy (35:27):
Yeah so I'm quite fortunate to linked colleagues,
specifically from Australia andNew Zealand. A colleagues that I
work with Benny Carter. We havelinks with guys in New Zealand
and Australia. So we've donework using kind of arts based
methods where we've exploredchildren's understanding of
their conditions and how theymanage that. It's been really
interesting to work with. Realsimilarities between the
(35:51):
countries. I mean, obviously,these are developed countries.
They have quite similarities inthe way that the health systems
work, but real similarities inin the way that children kind of
approach their understandings ofillness and condition. So the
recent project that we've beenworking on looking at children's
kind of understandings ofCoronavirus and the information
(36:13):
that we have around that. Wewere really fortunate to work
with colleagues from Sweden andCanada and Brazil, Spain,
Australia and New Zealand.
Again, real similarities,despite all the different ways
that all the countries copedwith lockdown and restrictions
and whether children went toschool or stayed at home. There
wasn't massive dissimilaritiesin the information that children
(36:34):
had. The information thatchildren wanted and kind of the
approach that families andsociety had to sharing
information with them. Soalthough a lot of the work is
based, kind of in the north ofEngland and i think that's
arisen from wanting to work on aone to one direct level with
children, which is difficultwhen they're spread all around
(36:57):
the world. That passion toactually sit down with children
and look at look at theirunderstandings and information.
But actually, the things that wefound have applicability and
transferability, to most well,to many kind of cultures and
societies. In which children areoften seem to be less capable
than they are. But just to pickup on a point that you were
(37:22):
saying about, that justgenerally, children don't have
the information that they need.
I think that open conversationwill acknowledge those children
that don't want information. SoI think it's just having a note
of caution that not all childrenwill want to be involved, to
have information, to makechoices and decisions. But it
(37:46):
should be the children's choiceto not rather than it being an
assumption that they won't. Sojust picking up David, you were
saying there about parentshaving skills to tell their
children about things. It mightbe that the child actually
doesn't want to know. It'sasking, so it might be that the
child wants to know, that has aquestion about this. If you're
(38:08):
led by the child, they mighthave a question about a and then
you can answer a, they don'twant to know x, y, and Z. That's
fine, because they'veacknowledged actually I don't
want to know that now. You canpick that up at a later date.
But just like adults, childrenare unique and individual. So
they need to be able to have achoice of actually what
(38:29):
information and things theywant. Sorry, I was just
thinking, I should have saidthat. I need to say that before.
So thank you for letting me addthat in.
David (38:36):
I think we feel like we could probably talk to you talk
to you for hours. But there's acouple of questions that I just
wanted to kind of finish upwith. One is, if any parents are
listening to this, and they are,you know, and their children or
child is having to go in for anyprocedure, is there any guidance
that you would give them interms of how to talk to them? Or
(38:57):
just, you know, kind of addressthat and think about going about
that kind of activity.
Lucy (39:02):
Yeah. So I think no matter what age the child is. We know
that children tend to copebetter with a procedure if they
have some information and theyknow what to expect. So anything
that you can provide the childwith is likely to help,
obviously be led by them, whatdo they want to know what
questions do they have? Thefirst way to approach that is to
(39:23):
tell them that what's going tohappen tell them that in a
week's time, we're likely to goin and have this procedure or
we're going to go and see thedoctor and we're going to do
this. There's a lot of evidencefor younger children, it might
be that you only kind of tellthem a few days before whereas
older children will want alonger period of time to process
(39:44):
the information and think uptheir own kind of questions. We
know that younger children arequite interested in the what?
where? who will be there? Whatwill it look like? Who will do
what? Will you be with me? Willmum and dad be able to stay with
me? Whereas older children aremore interested in kind of what
will it feel like, what can Ichoose about this. But if you
(40:07):
kind of led by your child, thenit's easier to have those
conversations. There's someamazing resources out there. If
you're a bit stuck to know whatto say, there's charities. Dom's
amazing digital platform ofexplorer, which has kind of 3D
modelling of procedures. Thechild can see what it will look
(40:29):
like, hear what it will soundlike, see, he'll be there, know
the difference between a nurseand a doctor. Actually, they're
not entering an environment ofuncertainty and strange people.
They know what what's going on.
So already that they're feelingmore informed. There's children
in hospital, which is a charitythat creates videos about a
massive range of procedures. Soyou can watch those with your
(40:53):
child and go back and look atthem again. There's books,
there's cartoons, there's somany resources, but it has to
start with telling your child inthe first place. So having that
conversations. We know that ifchildren do know, then they will
have a better experience. It'snot just the one experience,
(41:14):
there's sometimes the firstinteraction that a child has
with health services is soimportant. Because if that goes
wrong, then that can sometimesimpact on that child's future
engagement for the rest of theirlife. So you can end up with a
child that doesn't want to goand have immunizations. A child
that doesn't want to go tofuture appointments. So it is
(41:37):
really important to get it rightfirst time. Although it may feel
tricky, is really important totalk to your child about what
might what might happen.
David (41:49):
No, thank you and sorry.
I thought one other question Iwanted to ask. What next? in
terms of your research and whatyou want to do what what next?
Lucy (41:59):
Well, I suppose there's just so many, there's so many
ways in which children arecurrently, I suppose not
afforded the voice that theyshould have and could have
within kind of services. I wouldlike to work more with children,
young people creating resources,but it's not just creating the
(42:21):
resources. But I think as afield, we need far more evidence
about the impact that thesemake. So that we, we have
evidence to show that childrenwill have a better experience if
they know what's going to happenand they're prepared and they
understand. But we need more ofthat evidence. Because
otherwise, it's really hard tosell to funders that creating
(42:43):
these resources with childrenfor children is worth the
investment. That sounds quiteobvious but how can it not be
worth the investment to createsomething as simple as a an
animation or a leaflet forchildren. But unless you've got
evidence to show that, that thiswill impact and reduce the costs
(43:04):
of the NHS by so much then it'shard to it's hard to gain
funding to create these theseresources in the first place. So
I think it's havingopportunities to create and work
with children, young people alittle bit more to understand
what health literacy looks likefor them for various kind of
interactions and conditions, butalso to build on this evidence
(43:26):
that actually this stuff doesmatter.
David (43:33):
Our final question, I think we say this to to
everyone, is that if you had amagic wand, and you could do and
solve anything within childhealth, what would it be?
Lucy (43:45):
That's a really mean question. That's a really hard
question to answer. Because, ofcourse, you'd wish that children
were never poorly and so neverneeds to go to hospital anyway,
that wouldn't even be needed.
But I guess assuming that isalways going to be the case, I
think just that we canrecognise, just that systems are
in place to work with childrenso that their experiences can be
(44:09):
as good as possible. I guess andthat we don't miss those really
simple opportunities to sit downwith children and say hello and
ask them about how they'refeeling. Ask them about if they
have any questions. They arereally simple little points
along those trajectories thatactually can make quite a
difference to how children kindof experience health services.
(44:32):
But of course, if I had the bigmagic wand, then there would be
no need for health servicesbecause no one would ever be
ill.
David (44:40):
I think we will all agree with that book. Lucy, thank you
so much for joining us. It'sbeen such a, you know, such a
pleasure speaking with you. Ithink the topic that you are
just you know, your life's workas it were. It's so important
and we're so glad that we'vebeen able to find you and share
it and and have this discussion.
So thank you
Lucy (44:59):
Ahh Thank you very much.
Thank you.
David (45:07):
Again, thank you so much for joining us on the Not Mini
Adults Podcast. We're so keen tomake sure that these podcasts
are listened to by all the rightpeople. We do think that there's
an opportunity for people tohopefully be inspired by them
and help them in their careersin child health. A big thank you
to Lucy for also giving up hertime and having the conversation
with us. All the details forThinking of Oscar and also about
(45:31):
Lucy's work can be found in theshow notes. If you know of
anyone that you think that weshould be talking to, then
please do get in touch. Wereally hope that you can join us
again. If you've missed any ofour podcasts, then please go
back and listen to some of theamazing people that we've been
fortunate enough to speak to. Wereally hope that you're
listening again soon.
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