Child Study Center Grand Rounds 03.02.2021

March 23, 2021

Information

Promoting Youth Voices in Mental Health Interventions

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00:00Thank you so
00:01much, so so nice.
00:04Welcome everybody, good afternoon.
00:06It is a huge honor for me to
00:10introduce Doctor Gardella Pardini.
00:12I met Gabby probably exactly when
00:15the pandemic pandemic got started,
00:16so we've been developing
00:18this working relationship.
00:19This friendship remotely,
00:20which I think we're all used to by now,
00:23but it really has been just a true
00:26pleasure to learn from her in,
00:28particularly during this
00:29really unprecedented times.
00:30So it will take a couple of minutes just
00:33to tell you a little bit about her,
00:36but I think by the end of this
00:39hour you'll see why we are just
00:42so thrilled to have our be.
00:44You know part of our research group,
00:46Gabby has a PhD in psychology
00:48from the University of Cambridge
00:50where she worked on the effects
00:53of movement synchrony on sorry,
00:55the effects of movement,
00:56synchrony on human emotions,
00:58and social relationships.
00:59So you can already see how truly
01:02multidisciplinary her research is,
01:03and I think we're going to hear
01:05a lot about that today as well.
01:08She's currently apples doctoral
01:10fellow at the University of Oxford,
01:12where she combines psychiatry ethics.
01:14Arts and digital innovation.
01:17Among the many things that Gabby has done,
01:21she has Co designed and tested a number
01:24of digital tools to promote young people,
01:27civic participation,
01:28an engagement in mental health.
01:30So truly, the importance,
01:31relevance, and timeliness of
01:33her work cannot be overstated.
01:35She has worked on several
01:37fascinating interventions,
01:38one of them, called Citizens,
01:40Early Intervention Ethics where she explored,
01:43knew research methodologies to enable
01:45young people's participation in.
01:47Ethical debate around digital
01:48phenotyping in psychiatry.
01:49So truly innovative and
01:51cutting edge research.
01:52More recently,
01:52during the COVID-19 pandemic response,
01:54she has worked with multiple organizations
01:56to do things such as Co design and test,
02:00an online program to train young
02:02people to support their peers,
02:04and is currently testing the efficacy
02:06of this peer support program in
02:08helping adolescents cope with the
02:10emotional challenges of the pandemic.
02:12So I really think we have a lot
02:14a lot to learn from her work.
02:18She also has a very important
02:20set of work globally.
02:22For example,
02:22she set up and coordinated the lancets,
02:25youth leaders for global mental health
02:27and was also a leader in their global
02:30mental health campaign entitled My Mind,
02:32Our Humanity and she has worked
02:34with UNICEF on a global mapping
02:36of young people's aspirations for
02:38engagement in global mental health,
02:40so her work,
02:41both in the UK,
02:42an internationally of immense
02:44relevance and impact.
02:45She's also currently working
02:46with the University of Brasilia
02:48and other organizations in Co.
02:50Designing a chat bot.
02:51To support Brazilian young people's
02:53sense of agency and responsibility
02:54in promoting the well being
02:56of their communities.
02:57So again, you can see the breath,
02:59the impact,
03:00and the ambition of her research
03:03just by this sort of small
03:05tour of what she's done.
03:07She came to us that Jim and myself
03:10through the early Childhood Peacebuilding
03:12Consortium and what brought us
03:14together was, among other things,
03:16of course, our desire to elevate the
03:19voice of adolescents and youth and young
03:21people in the context of peacebuilding
03:24were Jim herself and I have been
03:26working this past year to think about
03:29ways to generate a youth task force
03:32to promote interdisciplinary research,
03:34primarily in sort of the
03:36context of intergenerational.
03:37Programming with adolescence
03:38youth and early childhood,
03:40so with without further ado, Gabby again.
03:42Thank you so much for being here.
03:45Truly a pressure,
03:46a pleasure and an honor.
03:48And over to you.
03:53Thank you so much Angie.
03:54I couldn't have hoped for
03:56a better introduction.
03:57This is really kind of you really lovely
03:59and thank you for the invitation.
04:01Thanks Jim. Thank you, Andrea.
04:03Thank you Rosemary.
04:04Yeah so Jim and Angie have been
04:06like a source of a wellspring of
04:08support and advice and friendship
04:10during in a very difficult year.
04:12And I very much hope that I can share
04:15with you the sort of outputs of this
04:18work together in the next talk.
04:20For now I'm going to share
04:22the work that I've done.
04:23Previously,
04:24but in any case it's an absolute
04:26pleasure to be here today and share
04:29a little bit of my research work,
04:31so I'm going to share my
04:33screen so that I can share a
04:35PowerPoint presentation with you.
04:40Right, so my talk today is called.
04:42Can you see my screen?
04:48So it's called promoting
04:49youth voices in mental health.
04:51Intervention is under described as sort
04:53of wearing many hats and I started
04:56off in psychology and then for my
04:58post Doc I switched to ethics and
05:00mental health and during this work
05:02over the past two three years I've
05:04been working in this app and like on
05:07this idea of promoting young people's
05:09voices and and I think I started
05:11small and sort of consulting young
05:13people here and there and my work
05:15has slowly progressed into something
05:17that is completely collaborative
05:18with young people and I think he was.
05:21This sort of learning of giving
05:23young people space to coproduce
05:25with you and then you know,
05:26realizing that they can do a lot
05:28more than you previously thought,
05:30and then sort of opening more space for them.
05:33So so the project that I'm going
05:35to talk about today,
05:36they they sort of describe a bit
05:38of this process of what it is
05:40to work with young people,
05:42so so they're just examples of
05:43ways we can include young people's
05:45voices in mental health,
05:46interventions in particular.
05:48So I hope to cover first sort of are
05:50as small argument for the inclusion
05:52of young people in the design and
05:54delivery of mental health interventions.
05:57And then I'll present 2 case studies.
05:59The first one, I mean,
06:00Andy mentioned both of them,
06:02so the first one is about young
06:04people's values of references in
06:05digital phenotyping and the second one
06:07is around peer support during COVID-19.
06:09And then I'll share a few reflections
06:12with you about this process of working
06:14with young people in this way.
06:16Anne.
06:16Right,
06:17so since the publication of the UN
06:19Convention for the Rights of the
06:22Child Children's Participation in
06:23public Life and Decision making
06:25has become a central theme,
06:27so not only in scientific life but
06:29also in public discourse in political
06:31discourse and children and other
06:33lessons are increasingly understood
06:34as competent and entitled to have
06:36the right to participate in have a
06:39say in issues that affect their lives.
06:42So we talk a lot about youth participation.
06:45The implementation of this participation
06:47is a lot more complicated as we're gonna see,
06:51and I understand participation.
06:52I'm using UNICEF definition here is
06:54adolescence forming and expressing
06:56their views, and most importantly,
06:57influencing matters that concern
06:59them directly or indirectly.
07:00So sort of participating is not
07:03only expressing your views,
07:04but you know these need to be taken
07:08into account by those who have power
07:11to make a decision that matters.
07:14So related concept that I'm going
07:16to also talk about in the talk
07:18is that of civic engagement,
07:20which I'm defining here as individual
07:23or collective actions in which people
07:25participate to improve the well being
07:27of communities or society in general.
07:29And there is a very nice term from
07:32the Brazilian literature which
07:33is that of youth protagonism or
07:36protagonist Leisure video which
07:38you know sort of brings this idea
07:40that young people should not be.
07:42Only this sort of audience,
07:44members of society and sort of receivers
07:46of of whatever initiatives and actions.
07:49But they should also be a
07:51protagonist in their own right.
07:53So I really like that term.
07:56And more recently,
07:58participation of young people have been
08:01discussed have been discussed in the
08:03context of mental health and well being,
08:05and the idea that young people,
08:08children and adolescents can be a sort
08:10of source of support for promoting
08:13well being locally and globally.
08:15So this has been talked about
08:18by several answer commissions,
08:19including the Global mental health word
08:22and more recently the tablet to UNICEF
08:25Lancer Commission made a really strong case.
08:28Saying that,
08:28a global movement that is for
08:30children cannot take place without
08:32having children at the heart of it.
08:34So.
08:36And we are in our research team.
08:38We have also argued that participation
08:40is important not only because it is
08:42a sort of ethical imperative to to
08:44involve young people who are going to
08:46be affected by decisions that we make,
08:48but also because it improves the
08:50relevance in acceptability of
08:51our mental health interventions.
08:53There is no point us coming up
08:55with new interventions that are
08:56not interesting for young people,
08:58and it's a waste of resources if we
09:00create interventions that are not
09:02going to be ethically acceptable by then,
09:04by them,
09:04or it's not going to be relevant
09:06or respond to their needs so.
09:08So we make that case that they must
09:10be involved and we made their case for
09:12it specifically for the covid pandemic,
09:14where so much research was just sort
09:16of being generated without much input
09:18from young people and then sort of
09:20everyone was tracking their emotions.
09:22You know,
09:22without actually asking them
09:24whether there was a relevant thing.
09:27So within research an intervention,
09:29we still see that even though
09:31there is a lot of talking about
09:33young people participating,
09:35young people are still largely framed
09:37as passive recipients of resources,
09:39so that includes being the
09:41sort of knowledge receivers in
09:43in educational contexts.
09:45For example,
09:45being the object of research being
09:48the patient of an intervention being
09:50the target of a public policy,
09:52and much less is talked about
09:55about young people being actual
09:57creators of this process is.
10:00Anne.
10:00And we have recently tried to sort of
10:03mark participation of young people,
10:05particularly in health research,
10:07and we wanted to see where the
10:09researchers would restrict themselves
10:11to involve young people in the
10:13data collection phase.
10:14Meaning young people ask the
10:16sort of participants in the study
10:18and whether they would actually
10:20bring young people into other
10:22processes within the research.
10:24So, for instance,
10:25into defining the research questions,
10:27designing the methodology,
10:28data analysis or Co.
10:29Authoring outputs,
10:30etc.
10:31So we sort of looked into all
10:34papers published in Health
10:36adolescent health journals in 2019.
10:38And we found out that just one
10:40percent of all publications within
10:42adolescent health actually mentioned
10:44using an advisor group of young people
10:47that would sort of help shape the
10:49research an 5% avoid prequel studies
10:51measure this type of engagement that
10:53goes beyond just the sort of passive
10:56being a participant in the research.
10:58So it suggests to us that even though
11:00we talk about participation a lot,
11:03that is actually not implemented in
11:05the practice of research as of yet.
11:10And in healthcare also a recent meta
11:13synthesis concluded that participation
11:15serum is a policy aspiration that
11:18has not generally been achieved or
11:20translated into clinical practice.
11:22Ann and we sort of miss out when
11:25we don't include young people
11:27and one of the reasons we miss
11:30out is that we miss out on the.
11:32Benefits for themselves, right?
11:34So we know we have argued,
11:36and we know from also empirical
11:38research that participation is an
11:40important dimension of flourishing
11:41for young people is something
11:43they value is something that they
11:45take a lot of pleasure in doing,
11:47and it's something that brings
11:49a range of benefits for them.
11:51So these are just some of the
11:53benefits described in the literature,
11:55and this includes all types of
11:57participation that goes from,
11:59you know, political participation
12:00to something related to well being.
12:02But we find that it improves relationships,
12:05self efficacy, their sense of purpose,
12:07their social capital,
12:08their competence and confidence,
12:10etc.
12:10So so there is a range of benefits
12:13for young people that are missing out
12:16when we don't include them in in in
12:19different processes within society.
12:21And what I'm going to talk about next
12:23is some ideas of how to actually
12:26include young people in research work,
12:28in particular around mental health.
12:32Think this is really important
12:33to talk about because one of the
12:36reasons I think why we don't include
12:38young people is that we actually
12:40don't know how to do this work.
12:42Collaborative is not part of the sort
12:44of traditional way of doing research,
12:46so it's not something that is actually
12:48taught in in grad school or anything.
12:50So so I think this is really
12:52important that we share practices
12:54and how different projects went in,
12:56and we can actually learn from
12:58from one another,
12:59so I'm going to 1st describe
13:01a case study around.
13:02At the X,
13:03so so this is a statical tracing
13:06tomorrow Ann and this sort of
13:09inspiration for this study was the
13:11fact that you know even though
13:14psychiatry has traditionally
13:16relied on behavioral observation.
13:17Genomics, neuroscience,
13:18all these types of sort of traditional
13:21data sources to to make predictions
13:24about psychiatric outcomes.
13:25More recently,
13:26with we've been trying out trying
13:29to predict mental health outcomes
13:31from a number of knew.
13:33Sources of data that are collected digitally.
13:36So, for example,
13:37sleep patterns that can be
13:38measured with a smartphone.
13:40Social media posts,
13:41your Twitter interactions,
13:42your Facebook posts,
13:43sort of speech and voice.
13:45Even like how you type on your phone or
13:48this has been shown in research you know,
13:51to different extents and with
13:52very variable predicted values.
13:54But you know still linked to mental
13:57health outcomes in some way.
13:59So and in particular for depression,
14:01there's been quite a lot of
14:04research suggesting that.
14:06Sort of that, for instance,
14:08your Twitter data,
14:09your Instagram photographs,
14:10Facebook language,
14:10or that could be predictors of depression.
14:13So these are studies for you
14:15know that are actually predict,
14:17so they're looking to compare with,
14:19for instance, posts from people
14:21before they got diagnosed.
14:22So it's actually like sort of
14:24predicting something that is
14:26going to happen a bit later on.
14:28It's not just diagnostic.
14:31And that of course brings a lot of
14:34enthusiasm and several services,
14:36even though the research
14:37is still in its infancy,
14:39several services already offered this types
14:41of digital phenotyping for mental health.
14:44So, for instance,
14:45a company called Cube Intelligence
14:47seems to offer you's well being index.
14:50Steer education is again like an educational
14:52company that enables schools to detect,
14:55track and response,
14:56respond to risk by collecting
14:58digital data from young people.
15:00So it seems like this is already
15:02incorporated in practice.
15:04Even though there isn't still like it,
15:06perhaps enough thinking about the
15:09ethics around digital phenotyping.
15:11Now, there are several concerns, right?
15:13So there is some concern around the
15:16accuracy of this predictive models.
15:18There is a concern around previously
15:20regarding data result sharing,
15:22in particular when we are dealing with
15:25young people, minors, digital data.
15:27And there is of course a risk of,
15:30you know,
15:31stigma and discrimination of in
15:33depending on who gets access to this
15:35data and who gets access to the results.
15:38And we argue that the voices of young people,
15:41even though this is an intervention
15:44technology that is going to
15:45affect their lives profoundly,
15:47is something that is not like
15:50discussed with them enough.
15:52So instead of to bring their
15:54voices into this debate,
15:55we we conducted this project
15:57that is called becoming good.
15:59Early intervention and more
16:00development in child psychiatry.
16:02And there was ilena saying,
16:04who is my PR here in Oxford?
16:06This leads the sort of larger
16:09project and I leave the work with
16:12young people together with David.
16:14And the goal of this study is to
16:16investigate young people's moral attitudes,
16:18preferences,
16:18and judgments around predictive
16:20technology in psychiatry,
16:20and then to build tools to improve
16:22research and engagement with young people.
16:24So we wanted them to be able to
16:27participate effectively in this,
16:28and we knew it was a very complex
16:30thing for for children for
16:32their lessons to think about.
16:33So we needed to find a way to make it
16:36relevant for them interesting and fun for
16:39them to be able to express their views.
16:42And recently we've argued for sort of
16:45methodological innovation within bioethics,
16:47so that we can in fact involve young
16:49people in ways that are engaging
16:52that are meaningful to them,
16:54and we need new methodology's
16:56to be able to achieve that,
16:58and in particular, digital games.
17:00As we argue, integrate context,
17:02integrate narrative,
17:03integrate embodyment.
17:04So that makes for a quite
17:06powerful research tool,
17:07because you're sort of capturing
17:09young people's decision making as
17:12they are embedded within a context.
17:14Which is something that a
17:16questionnaire rarely does,
17:17right,
17:17so I think this sort of motivated
17:19us to work in the development
17:21of games and we've worked in
17:23partnership with young people
17:25at every stage of the process.
17:27So we invited young people
17:29in even before the project
17:31started and work with them
17:32to coproduce all phases.
17:34And this is just a a sort of diagram of
17:37you know what's involved in making a game,
17:40which is something that is.
17:42There was completely new to me
17:44before I started this project.
17:46And it turned out to be a lot
17:48more elaborate than I thought.
17:49But yeah, just for you to see you know
17:51how much consultation there is with
17:53young people who've done a survey,
17:54created the first situation we tested
17:56with young people, created the final one,
17:58tested again, you know.
17:59Talk to them all the way they chose the name,
18:01you know.
18:02So there is a lot of back and
18:03forth with young people,
18:05and so we get to the sort of
18:07dissemination of the game.
18:08I'm in the game is called tracing
18:12tomorrow and it was released just
18:15before covid actually last year.
18:18And basically the story of the game
18:20is that you receive a letter from
18:22your GP or General practitioner and
18:24the letter says that health services
18:27have been monitoring your sort of
18:29digital activity and identified.
18:30You were at risk of developing depression,
18:33so it starts off with this,
18:35like to make it really concrete for
18:38young people about you know what it means.
18:42And we wanted to investigate using
18:44this game weather like first of all,
18:47who do young people in trust with
18:49information about their risk,
18:51thus risk information affect
18:52their self understanding and what
18:54are their normative dispositions
18:56towards these types of services?
18:58So investigate this all these
19:00questions through the game environment.
19:02So we had 1000 / 8500 UK participants.
19:05It played the game,
19:06it was over 20,000 in total.
19:08But there were.
19:10This was the number of UK participants.
19:12Within the age range we're interested in,
19:15mostly female,
19:16mostly from England.
19:18And here are so just give a taste
19:21of some of the results,
19:23but some of the results we
19:24found was that they most of them
19:26would tell someone when they got
19:28that letter and their preferred
19:30disclosure target was their parents.
19:32I think this surprises some people
19:34who may think in all the lessons
19:37go to friends first.
19:38It was actually their parents,
19:40followed by a friend.
19:41Very few of them would snap chat
19:44and still you know about a fifth
19:47would keep it private.
19:49We also found out that young
19:51people there is a later scene of
19:53the game where they actually are
19:55studying and preparing for an exam,
19:57and they are asked whether sort of
19:59this mental health service In this
20:01letter and everything would change
20:02who they are and their performance.
20:05And this is something that really surprised.
20:07Doesn't?
20:07That's why I'm sort of added here
20:09and want to point out that 36.7
20:11selected this option that it would.
20:13They would actually fail the
20:15exams because of this.
20:16Getting this information and and
20:17I mean most of them thought that
20:19it would have a negative impact.
20:21Some thought it would have no
20:23impact in a minority,
20:24so he could have a positive impact.
20:26So I think this is really sort of
20:29alarming for us to think about.
20:30If we're giving that type of
20:32information to young people
20:33without further support and advice.
20:35And that it could have actually negative
20:38effects for their sense of identity.
20:41And then we found mixed
20:42attitudes towards the service.
20:43So sort of at some point in the
20:45game they get another notification
20:47by Instagram that says that their
20:49online activity also suggests they
20:51are at risk for depression and then
20:53they have the chance within the game
20:55whether they want to sort of give
20:57more data to Instagram to actually
20:58improve their systems and algorithm,
21:00or whether they want to stop the service,
21:03delete their history and get
21:04out of the platform.
21:05So it was basically a way for us to
21:08measure their normative disposition,
21:09like are they ever happy and sort of.
21:12Positive about the platform and once
21:14you give everything away or do they
21:17actually feel sort of protective of
21:19their data and they want to either
21:21stop the service or sort of delete
21:23everything that Instagram owns about you.
21:25And here we found that almost like a
21:275050 split which I mean reviews to
21:29us that young people have concerns
21:31around social media platforms using
21:33their data for this type of purpose.
21:38And then we found out something else
21:41that was that sort of surprise as well,
21:43which was that later in the game,
21:46they have the chance to seek support for,
21:48you know, having received this letter,
21:50and maybe it affected them,
21:52and they get a chance to receive support
21:55from the school and we ask them what type
21:58of support they wanted to get an here.
22:00I mean spite what many people might
22:02think about the enthusiasm of young
22:04people about digital platforms.
22:06Mental health apps was selected by just 10%.
22:09And almost half young people wanted
22:11individual one to one support which was yeah.
22:14Which was, I think for us that that it was
22:17such a massive difference with something
22:19that surprised us and group support,
22:22which is something that is offered in
22:25many schools across the UK is actually an
22:27option that just about four 2.4% chose.
22:30And many would get no support.
22:33So, so those are just data,
22:35some a little taste of what
22:37you can collect using a game.
22:39But yeah,
22:39just in terms of the sort of
22:41summary of what I reported there,
22:43we found that most young people are
22:45willing to disclose information which can,
22:47you know, facilitate help seeking.
22:49We know that when young people don't tell
22:51anybody about difficulties that normally
22:53they don't actually reach any formal support.
22:55So I think this is important.
22:57The fact that they tell a friend a
23:00third tells a friend first means that
23:02you know the lessons must be trained.
23:04To be able to refer them to
23:08appropriate support sources.
23:09Which doesn't necessarily
23:10happen all the time.
23:11This sort of impact on self
23:13understanding is consistent with
23:14previous research around genetic risk,
23:16but it really indicates to us that we
23:18cannot give this type of information
23:20to young people in the absence of
23:22any sort of educational information,
23:24we need to say, OK,
23:25this is what it means for you.
23:27This is how malleable this is.
23:29This is how low the predictive model is.
23:32You know,
23:32we need to indicate to them that it doesn't
23:35mean that they're going to fail an exam.
23:37It doesn't even mean that they're going to.
23:40Develop depression necessarily right?
23:41So I think this is really important
23:44that whatever information is given
23:46is provided together with a lot
23:49of clarification and support.
23:50So and then we found again mixed
23:53attitudes towards this types of services
23:55from young people so that you know
23:58we feel it means that this this to
24:01mental health technologies companies
24:03that are offering these services.
24:04They really need to talk to young people,
24:08more considerate weather concerns
24:09are weather preferences are.
24:11Either their preference for face to
24:13face support also consider their
24:15privacy concerns around their data
24:17and design the service based on
24:19this concerns and this preferences
24:21rather than offering a service before
24:23any sort of consultation.
24:24So so those are our main conclusions
24:27an obviously I want to offer also
24:30submitted a logical reflection here so
24:32you know by using a digital game we
24:35could engage use at scale with something
24:37that is quite complex even for adults
24:40to think about and young people.
24:42You know they were. They love the game.
24:44They played like I think 4000
24:46played within like 3 days.
24:47They really loved it and and it was very
24:50easy for them to think about ethics
24:52in this more fun and engaging way.
24:54And you know I'm I'm an ethicist
24:56and I've been like trying to engage
24:58young people with complex ethical
25:00questions and it doesn't.
25:01You know, sometimes it's it's
25:02fun and easy to talk about.
25:04Sometimes it's very complex for
25:05them to wrap their heads around,
25:07so I think having these types of
25:10methods really allows a lot like we can.
25:12We can be a lot more inclusive
25:14in our research work and produce
25:16something that is much more scalable.
25:18Of course,
25:18the authenticity of the game choices you
25:21have less control of losing the sample,
25:23whether they're giving the right answers,
25:25whether they're being themselves or not.
25:27So that's something we're investigating
25:28in some further research,
25:29but so it looks like it could
25:32be a promising tool.
25:34So this was the peer support the
25:37digital phenotyping work and now move
25:39on to the second case that a which is
25:42quite different from the first to end.
25:44But I think also illustrates other
25:47aspects of youth participation,
25:48so this was a project around peer
25:50to peer support during covid,
25:52so this differs in the sense that
25:54young people are actually being
25:56sort of developing interventions
25:58and delivering interventions rather
25:59than thinking about ethics.
26:01So there in a way much more direct
26:04contribution to to sort of promoting
26:06the well being. Of young people.
26:09So so the project called peer support
26:12for the lessons during COVID-19 and
26:14this is the team that worked on it,
26:17so involved some third sector
26:19partners involved.
26:20A young People's Advisory group that
26:22worked with us from the start as well.
26:28And what motivated us to conduct this
26:30research was the even though young
26:33people are less affected by kovid,
26:35you know the sort of illness they are,
26:38they were hugely affected
26:40by the pandemic and lockdown
26:42measures and school closures etc.
26:44So in the UK, for example,
26:463/5 of the youth who work,
26:48they're working shut down sector.
26:50So obviously that affected their income
26:52and affected their lives tremendously.
26:55School closures obviously affected
26:56them increased anxiety there was.
26:58Reports of lack of control and
27:00certainty around their futures,
27:02so this sort of motivated us to do
27:04something for young people during
27:06that time and and even though the
27:09pandemic affects them quite a lot,
27:11they haven't been actually asked to join
27:13and to contribute to the response or
27:16even to contribute to decision making
27:18that was relevant to their lives,
27:20such as whether you know the
27:22exams are going to be counseled,
27:24how their grades are going to
27:26be a calculated,
27:27what type of support they
27:29were going to receive.
27:30What type of schooling
27:31they're going to receive?
27:32So all this you know,
27:34those are decisions that affected
27:36their lives a lot and and they were
27:39very little consulted on any of those.
27:41And we are.
27:42Wanted to to basically offer
27:44opportunities for them to support
27:46their agency in the pandemic
27:48response and promote capabilities
27:50for agency in the outbreak.
27:52So we started off by consulting a
27:55small group of young people from
27:57different networks that we worked
27:59with and we asked them like OK if
28:02you were to contribute to the well
28:05being of young people during this time,
28:07what would you do like?
28:09How would you contribute and and what
28:12they told us was that they wanted to.
28:15Support their friends and support
28:16their peers and they saw that
28:19there was great need there.
28:20But at the same time they felt
28:22they lacked the skills to do so,
28:23so so they were sort of OK.
28:25We want to support them.
28:26We see our friends are really struggling
28:28and we want to be able to do something,
28:30but I don't know that I'm prepared to
28:32do this as it feels like too much.
28:34Uhm?
28:35So so because of that we decided
28:37to focus on peer support.
28:39So that was that is an example of,
28:41you know,
28:42young people really driving the
28:43sort of agenda of the research.
28:45I had never studied peer support
28:46in my life before this project,
28:48so it was something that was like
28:50really driven by the other lessons and
28:53the consultations we had with them.
28:55Anne.
28:55So we realized that we didn't have
28:58the sort of expertise in team
29:01to to do this intervention.
29:03So we partnered up with a company
29:06known sector organization,
29:07also third sector organization
29:08called you Sarah and they focus
29:11on empowerment of young people
29:13and together with them,
29:14and together with an advisory
29:16group of young people,
29:18we developed an online peer
29:19support training course.
29:21So the purpose of this training
29:23course was to basically
29:24prepare young people to support their peers.
29:27And your community during the pandemic,
29:29so it included things like how to
29:32establish rapport with with a peer,
29:34or that you don't know or
29:36know how to support a friend.
29:38Where to get help.
29:40If you need, how to respond to a crisis,
29:43how can you help your community effectively,
29:45etc etc. So everything sort of preparing
29:49them to provide support to others.
29:51And everything was targeted to COVID-19
29:54and we then ran a pilot trial.
29:57Those are small trials I mean.
30:00My point here is really to illustrate
30:03the youth involvement.
30:04I mean, we're hoping to run bigger tries,
30:06but we can actually be
30:08sure about the results,
30:09but but those I think illustrate the
30:11point nicely of their involvement.
30:13So we rent this pilot,
30:15try to investigate the impact of receiving
30:17this training course on young people's.
30:19You know what they're supposed to learn,
30:21which is their ability to support others,
30:23but then also their civic engagement ability,
30:26their well being, and we also assessed
30:29their perceived impact of training.
30:31So we recruited 100 UK participants
30:34age 16 to 18,
30:35mostly female,
30:36and they were randomly assigned
30:39to either receive training or
30:41wait list control and we measured
30:44outcomes shortly after the course
30:46and we followed those who had who
30:49were in the trading arm for another
30:52extra three weeks to see whether
30:54the effects would be maintained.
30:59And we recruited young people
31:01all across the UK as well.
31:03So we found that the those who were
31:05in the training Group reported
31:07greater ability to provide support,
31:09so they felt more confident in
31:12their skills to provide support.
31:14They also reported more frequent support,
31:16giving to their peers,
31:17so they were more likely to help others,
31:20at least from a self reported perspective.
31:23Anne. We did not find any effect
31:26on motivation to provide support,
31:28presumably because the control group was
31:30also highly motivated to provide support
31:32where they were there for a reason.
31:35So so yeah,
31:36we didn't find anything here,
31:37and we found that the effects were
31:39maintained on like both frequency
31:41and perceived ability were maintained
31:43from baseline up to four weeks later.
31:48So then we also found effects on
31:51our secondary outcomes there.
31:52So we found that the training
31:55increased young people,
31:56civic engagement ability and also
31:59increased their own well being.
32:02And then we found sort of resonant themes
32:05from the qualitative responses they gave.
32:07So we found that many nation
32:10helping skills feeling more
32:11prepared to help friends and peers.
32:14Many mentioned a feeling of connectedness,
32:16sort of.
32:17The course having helped them
32:20build relationships during a time
32:22that they were very isolated.
32:25We also found that effect and that
32:26was something we hadn't measured
32:28in the quantitative outcomes,
32:29but we found that effect on self
32:31care and self awareness as well.
32:33So they used what they learned,
32:35not only to help other people,
32:36but also to support their themselves
32:38and to understand themselves better.
32:40And then I think I mean my favorite
32:42finding here because I'm interested
32:44in youth participation is that it.
32:46Also they mention empowerment.
32:47So they say with those words sometimes,
32:49like it made me feel and powerful and
32:51make me feel like I can make a difference.
32:54I can.
32:55I can do whatever I want,
32:56you know they were like they
32:58were really like.
32:59Make them feel really confident about their
33:01ability to contribute to the community.
33:03And because we followed the
33:05training arm for three weeks,
33:06we were able to see that some
33:08of those young people actually
33:09putting the motivation in action.
33:11So that was, for me, really.
33:13Interesting to see.
33:14Of course,
33:15I mean there was no incentive for them
33:17like following the trial we didn't like.
33:19Follow up with them and ask that I
33:21know that we didn't like encourage
33:23them to go out in the community.
33:25So anything that comes up here
33:28are completely spontaneous.
33:29So we found, for instance,
33:31young people who said they were gonna.
33:33They started the project about
33:35peer support with friends.
33:36Some young people we started
33:37an Instagram account to give
33:39information about peer support.
33:40That was also like completely
33:43unplanned from our end.
33:45Medi CEO, I had planned this an assembly.
33:47A few of them gave assemblies
33:49in their schools.
33:50Just you know sharing what they had
33:52learned from the course talking
33:54about boundaries and and this was
33:56like we have many examples of those
33:58and we kept in touch with some of
34:00those participants and we know that
34:01they actually follow through and
34:03gave those assemblies and sometimes
34:05retained in those 354 hundred participants.
34:07But it wasn't always students in the school.
34:11So, so yeah,
34:12so this was,
34:13I think for me,
34:14what really mattered from this
34:16study and something that I
34:17really want to follow up on,
34:19because it feels like we talk a
34:21lot about the benefits of yeah,
34:23of empowerment for young people themselves.
34:25But actually this this statement
34:27suggests that there is also an
34:29impact to the community that
34:30we need to be measuring here.
34:34And yeah, in terms of conclusions,
34:36we found that training young people
34:38to support their peers may lead to a
34:41range of positive outcomes across,
34:43you know mixed measures.
34:44We found this suggesting that it could be
34:47a source of resilience for adolescents,
34:49and we found this that you know
34:51promoting this agency capabilities
34:53even in the absence of any you know,
34:55sort of structured program for
34:57them to provide support to others,
34:59inspire them to improve community
35:01well being various ways. So.
35:03Of course, there are many limitations.
35:06As I said, this was a pilot trial,
35:08so we had just very short term outcomes.
35:10We didn't have a sort of active comparison.
35:13We had highly motivated participants,
35:14so all this I mean our limitations that
35:16we want to address in a larger trial,
35:18but something that really sort of
35:20bothered us at the time was that we
35:22didn't know whether the support they
35:23were giving the Community was effective
35:25from those who are receiving it.
35:27We just knew that they were giving more
35:29support and there are more confident in
35:31their ability where like does that mean
35:33that it's it's actually better support or?
35:35That young people are benefiting it anyway,
35:37so because of that we decided to run
35:39a second trial just to check whether
35:42a sort of peer delivered program that
35:44would improve young people's well being
35:47could actually have an effect in the
35:50well being of young people in the UK.
35:53And this contributes to the
35:55literature around peer interventions,
35:56which is quite limited.
35:58I mean,
35:59there are studies around peer support,
36:01but they're not necessarily very controlled
36:03or not very systematically done,
36:05and you know every person who has
36:07tried to do any sort of systematic
36:10review of the literature has concluded
36:12that there is not enough evidence,
36:15and you know it's not strong enough
36:17or we we need more studies, etc.
36:20So we wanted to also contribute to to
36:23building the evidence bases around.
36:25These interventions and also we wanted to,
36:28I mean,
36:28this is a quote from from a recent
36:31paper as well.
36:32Just say you know we we know so
36:34little like the the mixed effect
36:36about the mixed evidence around peer
36:38support really means that perhaps
36:39before we can focus on outcomes,
36:41we first need to understand
36:43what are the mechanisms,
36:44how this peer support programs
36:46are being delivered,
36:47how this peer support relationships
36:48are being established, etc.
36:49So that was also a goal of this
36:52second study to try and understand
36:54how their relationships are built.
36:57Yeah,
36:57it's it's a.
36:58I mean it's a different type of
36:59relationship from a therapeutic
37:01relationship because it's much more
37:03based on on friendship and companionship
37:04and we wanted to know whether young
37:06people are actually seeing this.
37:08Peer supporters is therapists or
37:09were they seeing them as friends
37:11or something in between?
37:12So that was something important
37:15for us to figure out.
37:17So the way we did this and this is also
37:20like nice to illustrate sort of way.
37:22You can involve young people.
37:24We invited back those who are participants in
37:27the study where they got trained so we had
37:29trained 100 of them and they were like OK,
37:32let's select the stars of the first course.
37:34Those who had like amazing performers invite
37:37them back to actually deliver this program
37:39so so they were very keen to do that.
37:41It involves a lot of
37:43commitment from their end.
37:44At the end of last year.
37:46But they were, they were very keen to
37:49contribute and to help out during Covid.
37:51So they they accepted working with us.
37:53And then we set up a team that include
37:56researchers included the third sector
37:58organization and it also included this team.
38:00We call them the uplifters which
38:02are the peer supporters.
38:03Basically, this 20 young people.
38:06And then together with this group,
38:08we could design A peer delivered
38:10educational intervention,
38:11so that was again a zoom course
38:13and this time it was focused on
38:16actually helping young people,
38:17so teaching them emotional coping skills,
38:20self compassion and finding
38:21a sense of purpose, etc.
38:23And then targeted at COVID-19.
38:26And then we wanted the course to be
38:28delivered by the other lessons themselves.
38:31Obviously that was the point,
38:32so so we had.
38:33Basically each of the 20 adolescents
38:35sort of deliver the course to
38:37a group of six or seven.
38:39So it was a program delivered
38:40throughout the course.
38:41The course of five days,
38:43so they're all together in
38:44some like joint sessions.
38:45But then they would split into small
38:48groups and they will be guided by this
38:50young person trained in peer support.
38:52So alright so then,
38:54yeah this is just like a taste
38:56of how the course looks like.
38:58Those are staff members from from the
39:01from you Sarah and it was all again
39:04on zoom and but you know they tried
39:06to make it feel a bit like field 3D
39:09even though they're all just unzoom.
39:11So they tried to set up incorporate
39:14elements of in a dancing,
39:15music and lighting so that you
39:18would feel like you were in a real
39:20environment together in time and so.
39:23So right?
39:23So then we ran a second pilot trial,
39:26which was to see whether this beer
39:28delivered coping during covid course
39:30would have any impact for those
39:32who actually received the course.
39:34So we recruited 100 young people.
39:36We advertise the study only in
39:38areas that were highly affected
39:40by covid here in the UK they're
39:43called like Tier 2 and Tier 3.
39:45Those word I had the largest number of cases,
39:48so we sort of targeted those areas.
39:51So it was quite the first
39:54sample of young people.
39:56And we had mostly females.
39:59And again we.
40:00Assign them to either receive this
40:02educational coping during covid
40:03course or wait list and then we
40:06measured well being in coping and
40:08we measured perceptions of their
40:10relationship with the peer support.
40:11As I said, that was sort of Bringle for us,
40:14so I don't have all the results for this one.
40:18'cause obviously it's quite recent.
40:19The course was just now in December,
40:22so we're still analyzing,
40:23but I can give you a taste of the
40:26perceptions of the relationship
40:28and what we found there.
40:30So so so far what we found is
40:32that there are three core themes
40:34that come up with the talk about,
40:36so we asked the young people to
40:39describe their interactions and
40:40relationships with their peer supporter,
40:42like to see whether how they would
40:44describe that type of relationship
40:45and what comes up very frequently
40:47is that they talk about the bonding
40:50and the shared experience they
40:52had with their group leaders,
40:53so they have they talk about
40:55having things in common.
40:57The bone that they shared.
40:58Some say this is a magical relationship
41:00that they want to last forever, so.
41:03They create really strong bones.
41:06Which I think is something that really
41:09sets peer support intervention set
41:10apart from it's very different from
41:13a therapeutic relationship, right?
41:15Like it is based on friendship
41:17and based on the sort of communion
41:21and companionship etc.
41:23And and then I think what was the most
41:25frequent theme was feeling hurt and
41:27feeling safe within those relationships.
41:29So many talked about being nervous
41:31but then sort of make sure that
41:33everyone like the young leader making
41:35sure everyone was getting comfort.
41:37Rible, creating a warm,
41:39loving environment for for
41:40young people to share.
41:41So this was really important to them.
41:44And then we also found that many mention
41:47the peer support as a role model,
41:49so being inspired by their peer supporter
41:52feeling that they were the best.
41:54And releasing them as role models for us.
41:57It was slightly surprising that
41:58you know much less frequently.
42:00They mention the skills and knowledge
42:02they learn from the course so you
42:04know rarely they would say I learned,
42:06you know this coping skill and you
42:08know the whole no course was coping
42:10during covid orders, so we're like,
42:12OK,
42:13I hope they learn something so we
42:15don't know yet because I haven't
42:16looked at the quantitative data,
42:18but it feels like you know something
42:21that what they really valued from this
42:23course was a space to feel heard in his.
42:26To feel safe during a time
42:28of great uncertainty.
42:29So I think this is important
42:31for us to also reflect on like,
42:33is this something that maybe yet young
42:35people were yarning for their missing.
42:37Perhaps during covid times.
42:38Do they have spaces within their
42:40daily lives within their schools,
42:42within their families to to
42:43feel hurt and feel safe?
42:45We found in the course in the
42:47media and people for the first
42:49time sort of disclosed things that
42:51were really dear to them,
42:53like disclose their gender identity
42:55for the first time disclosed.
42:56So traumatic experiences in
42:58childhood for the first time,
42:59so we feel like it's almost like for them.
43:02It was finally finding that
43:03place where they could be
43:04themselves. They could be real and they could
43:07share something that was important to them.
43:09So I think that really like made
43:11us reflect then together with young
43:13people have been reflecting on this.
43:15You know, how can we create spaces
43:17that are similar to this course
43:19but you know in in daily life,
43:21in in the spaces they are all the time right?
43:24Not only for five days.
43:27So I just wanted to offer a few reflections
43:31around what I've just talked about.
43:33So I think the first is just, you know,
43:37sort of summarizing what I've discussed.
43:39I think the first point is that
43:41by creating the right tools that
43:43speak directly to young people,
43:45so Agama sort of zoom program,
43:47you can engage young people were
43:49meaningfully and and and have scalable
43:51participation more inclusive participation
43:53from different parts of the UK.
43:55In our case.
43:56So those tools can be really powerful
43:59for participation and the second
44:00point is that the close involvement
44:03of young people across all stages so.
44:05Across both projects we involve
44:07them from the beginning to end.
44:09That really made our research
44:11and our intervention.
44:12In the case of the Covid project
44:14more relevant for them and targeted
44:16to their needs,
44:17which was something that
44:19was really important to us.
44:21Obviously,
44:22participation is not something
44:23that is easy to do.
44:25I can tell you that is not cheap in research.
44:28Of course you need to reimburse young
44:30people you don't like them providing
44:32discourses and you know sort of do
44:35research together with you without
44:37receiving the proper training.
44:38The proper reimbursement.
44:39So I think this is something to really
44:42think about as a researcher wanting to
44:45sort of undertake a journey of this type.
44:47Whether you're able to provide engagement
44:49that is resource that is impactful,
44:52that is genuine, that is,
44:53in a team friendly.
44:55Animal skills building etc
44:56and something in those.
44:57Those are aspects to consider when you
44:59work with young people directly like this.
45:01There there is a lot of admin involved,
45:03can tell you that as well so you
45:05know those are, you know,
45:07aspects to think about.
45:08Whether you know do I have capacity
45:10to do this at the moment and why do
45:12I need to budget in when I apply for
45:15a ground for example to allow for
45:16meaningful participation of young people?
45:18That's something you know,
45:19because traditionally it is not
45:21the way to go.
45:21It's not something that we think
45:23about from the outset necessarily.
45:25So, so those are important points
45:27that I just wanted to make.
45:30But more than that,
45:31I also wanted to make a more general point.
45:34I mean,
45:35obviously the types of participation
45:36that I described here.
45:38Those are very formal participation
45:39in research.
45:40We recruited young people for it.
45:42We we pay them for it,
45:44right?
45:44Like it was a sort of formalized structure.
45:47But young people's participation
45:48is happening all the time,
45:49right?
45:50So I wanted to just invite you to think
45:53about this for a moment.
45:54So we recently wrote a commentary where we
45:57argue that having a voice is not something.
46:00That is just in this formal settings,
46:02but defines every relationship having
46:04traction that the children and
46:05adolescents experience both at home,
46:07in school, work, leisure settings.
46:09You know, in in psychiatric
46:11interventions every relationship
46:12that they have in their lives is,
46:14you know, this is an aspect of it,
46:17whether they were given enough space to talk,
46:20they were given a voice.
46:21So so I wanted to just close the talk,
46:24invite you to think about, you,
46:26know a few questions in your own
46:29work in your own life if you.
46:31Work with other lessons directly,
46:33or if you have other lesson children or
46:35relatives to Justin to reflect on this.
46:38Whether you've provided them with a safe
46:40space to express their thoughts and feelings,
46:42you know if you were a clinician.
46:44For example, you know,
46:46have it so often.
46:47We see clinicians talking to the
46:48parents with the other lesson city there
46:50instead of watching the interaction
46:52happening without any participation.
46:54You know this is really important
46:56for us to reflect on.
46:57Can you ask them directly
46:59instead of asking the parent?
47:00Or you know, how do you manage this?
47:03Relationship there are there things
47:05that the other lesson may not share if
47:07the parent is in the room and then can
47:09you give them the space to talk first?
47:11You know those are aspects that
47:13you can think about in your old
47:15work and whether it applies.
47:16And then the second one is,
47:18can they be involved in this
47:19in this decision,
47:20like what medication you're going to take?
47:22Can they be involved in the decision
47:24of you know what intervention
47:25they're going to receive?
47:27How this treatment is going to work?
47:29Or you know in more in daily life decisions,
47:31right?
47:32Like,
47:32well,
47:32I don't know what we're going
47:34to have for dinner,
47:35or whether they want to go to
47:37they want to do online schooling
47:38in this way or another way.
47:40So so those are also questions
47:42to think about an and finally,
47:44for those creating outputs for young people.
47:46I think we need to always come
47:48back to this question like does my
47:50attempt at representing their world
47:52capture what's important to them?
47:54And obviously the more we have
47:56young people involved in the
47:57process of creating this outputs,
47:59the more we're going to be able to
48:01represent their world and be their advocates,
48:04so.
48:04So this is I guess all I had and
48:07I wanted to just close with a
48:09quote that I found recently in
48:12a report from a colleague and.
48:15Which is from a young person who's
48:1717 and she says we can do more.
48:19We know we can do more.
48:21Just listen to us.
48:22Children can influence change,
48:24which I think sort of sums up
48:26nicely when I try to express here.
48:28Ann and I believe we have some
48:30time for questions,
48:31but just before that I wanted to just
48:33think oh partners and collaboration
48:35collaborators from this different
48:37projects that I talked about.
48:39And then yes, and again, thanks for
48:41the opportunity to talk to us today.
48:43Talk to you today and I would be really
48:45happy to answer questions over email
48:47or talk about any of those projects.
48:49Yeah, I'm also on social media if
48:51that's a good way to connect, you know,
48:54as someone who works without the lesson,
48:56I'm like all over social media
48:57so you can find me there as well.
49:00And yes, I'll be very glad to to discuss
49:02now, Gabby, thank you. Thank you so much.
49:05It was just fantastic and Angie
49:06and I are going to try to feel the
49:09comments and the questions, but I'm so.
49:11Excited by the content that
49:13you shared with us. Thank you.
49:14Thank you Angie.
49:15Take it away and if you have any questions,
49:18raise your electronic hand or or
49:20make a assign. But Angie.
49:24Yes, thank you so much, Kathy.
49:26This was truly fascinating and I think I'm
49:28looking at the chat box because there's
49:31a lot of already sort of reflections
49:33about things that you have shared.
49:35I think Larry sorry I called you
49:37here because I think this is a very
49:40important question that I think
49:42had some follow up later on it.
49:44The question Gabby here is,
49:46do you think peer support training builds,
49:48resilience, resilience because you were
49:50making that connection and Larry's posing,
49:52does it feel because it feels good to help?
49:55And will self esteem, or because,
49:57because teens learn things
49:58that help themselves too.
49:59So could you maybe hypothesize a little
50:01bit about that sort of linkage between
50:03peer support and building resiliency?
50:05What the mechanisms might be,
50:06I think that's a lot of interest,
50:08and thank you Larry for posing that question.
50:11Yeah, I just think it was so interesting
50:13and so important that issue of you
50:15know that we're always struggling
50:17with resiliency and just what a
50:19great you know in road to this.
50:21And I'm sorry my videos disable them assigned
50:23to some special thing in this conference.
50:26Thank you great talk.
50:27Thank you so much.
50:28Thank you Larry.
50:29I think I thanks for the comments as well.
50:32Just be reading and I love that quote.
50:35From Maya Angelou.
50:36Really lovely and really
50:37expresses our qualitative results.
50:39I'm going to think about that
50:41next time I present it.
50:43Quote her in, but yeah,
50:44this question is really important
50:46about about where the effect comes
50:48from and what is the actual active
50:50ingredient there in building resilience.
50:52And sorry to sort of bring this into a
50:55sort of much higher level discussion,
50:57but I think.
50:58I think what we've been arguing for
51:00is that we need to think differently
51:03about flourishing and hapiness,
51:04and specially for children adolescents.
51:06So we tend to think of flourishing
51:08us or happiness as you know,
51:10having positive emotions right?
51:11Or it's like achieving things for yourself.
51:14And when we talk to other lessons
51:16to young people I mean they care
51:18about that but they care a lot
51:20about their role in SoC about their
51:23connection to the school about whether
51:25they're connected to their peers,
51:26whether they know people like them,
51:28whether they they're feeling
51:30included in the conversations,
51:31whether they're able to contribute
51:33to society, like all that,
51:34is part of what we understand
51:35is flourishing for adolescents.
51:37So I think I, I believe,
51:39part of the so nice, yeah,
51:41I believe part of the effect comes from,
51:43of course, learning self care strategies,
51:45and that we saw in the data set.
51:48So they say, OK,
51:49I use this meditation strategy,
51:50or I took a walk, you know,
51:53it was like I played video games when I
51:55was stressed out, and that can be tough.
51:58So anyways.
51:59So so that.
52:00Definitely happened,
52:00but I think great part of the
52:03effect on on resilience or or
52:05resilience for young people was
52:06coming from the fact that they
52:08could contribute and that was something.
52:11I mean we have.
52:12We don't.
52:13We haven't analyzed fully the results
52:15from from the peer supporters yet,
52:17but we do have data that speaks to
52:19that when they talk about you know
52:22how some of them say telling us that,
52:25like covid.
52:25Was the best year of their
52:27lives because they could be peer
52:29supporters for other young people
52:30and that really surprised us.
52:32'cause for nobody COVID-19 is
52:34the best year of their lives were
52:36like how can you say that so
52:37so that was something that was
52:39really powerful for us to learn.
52:41That was I think great part of of
52:43what made them stronger was was
52:45the fact that it could contribute.
52:47I mean obviously we need to test
52:49this in a in a larger trial,
52:51but I think that is where the results
52:53at the moment are leading us to.
52:57Alter Gilliam you have a long question
52:58said we want to hear you on mute yourself.
53:05Thank you so much and you know,
53:06let me start off by saying how,
53:08how wonderful it is to hear an ethicist here.
53:11You know giving a presentation about,
53:12you know how we think about the work that
53:14we do and maybe more importantly how we
53:16sometimes don't think about the work that
53:18we do and should be thinking about it.
53:20So my question basically is around how do we?
53:23How do we get more community based,
53:25participatory research ideas within the
53:27work that we do and try to curb this
53:30tendency that we might have to be cowboy
53:32ethnographers in the world of children?
53:34And is that mostly by training and
53:36retraining us in research methodology?
53:37Or is it more by putting pressure
53:39on funders to demand it?
53:41Or is it some kind of combination
53:43like how do you see how do you
53:45see moving us forward as a field
53:47along the ideas that you presented?
53:51Thank you, yeah,
53:51I think this is really important.
53:53Something we think about a lot as well.
53:55I think. I mean certainly we need the
53:58external agencies and the pressure
53:59right to be able to do that work.
54:01I mean, of course if we don't get
54:03funding for reimbursing young people
54:05if we don't get funding for public
54:07engagement lead for a big project like
54:09we cannot even implement this work.
54:10So we I think this is a sort of basic
54:13requirement for us to be able to do this
54:16and also for people to start thinking about.
54:18But I can see this is changing.
54:20I mean, at least in the UK.
54:23This is a requirement for many
54:25grants right now that you need to
54:28describe your public engagement.
54:29Public involvement, work.
54:32Can you still hear me because you
54:34your screen throws a little bit,
54:36you can OK good if I disappear,
54:38just give it up and.
54:41Some papers,
54:42like some journals,
54:43also require that right now,
54:44which I think is really important,
54:46they say OK,
54:46you need to have this statement
54:48saying how many young people
54:50involved or others involved,
54:51as as in PPI and and this
54:53sort of gives the pressure.
54:54'cause if you need to always right
54:56nobody you know what I mean that that
54:59becomes a sort of thing that OK,
55:00you're forced you think about
55:02when you publish as well.
55:03So I think those changes are
55:05hugely important and in one of
55:07our papers the papers that that
55:08that one that we do the mapping.
55:10We also provide some.
55:11Ideas on how you can report having worked
55:14with young people in your research?
55:16So I think this types of guidelines
55:18are very important as well.
55:19There's been a lot of material
55:21produced within the UK that gives
55:22you like researchers some guidance.
55:24And yeah,
55:24just some ideas on how to work
55:26with young people what's required.
55:28So I think this is.
55:29I mean, it's still we need to keep learning,
55:31I think, and sort of learning as we go.
55:34I would say, yeah,
55:35that has been the process with myself.
55:37So if you try to engage and it
55:39doesn't work and then I'm like, OK,
55:41let's try this now. And you sort of.
55:43You end up if you work collaboratively
55:44with them,
55:45you end up finding the answer there.