Child Study Center Grand Rounds 03.02.2021

Transcript

• 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.