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How can wearable technology contribute to understanding social behaviour in adolescents with autism?

By Siobhan Morris, on 18 January 2019

In the latest instalment of Grand Challenges’ spotlight on Adolescent Lives, Siobhan Morris learns more about Dr Jamie Ward and Professor Antonia Hamilton’s project exploring how wearable technology can contribute to improving understanding of social behaviour in autistic adolescents.

Autism, or autism spectrum condition, refers to a range of developmental conditions that are characterised by difficulties with social interaction. People with autism can struggle with non-verbal communication, including the use of gaze, imitation, and other social cues. This can create a barrier to social engagement. Dr Jamie Ward (previously UCL Institute for Cognitive Neuroscience, now Lecturer in Machine Learning at Goldsmiths) and Professor Antonia Hamilton’s (Professor of Social Neuroscience, UCL) project, ‘Expanding the social self through theatre in adolescents with autism’, therefore aimed to explore new ways of using wearable technology to help understand social behaviour in adolescents with autism.

The project centred around the work of Flute Theatre, a theatre company that has developed a means of bringing autistic children into the theatre and onto the stage. Flute’s approach is to help autistic children learn how to synchronise and engage socially through a series of theatrical games. Children who have profound difficulties with communication and social behaviour are encouraged to stand up and perform alongside a troupe of actors — all in front of a live audience. As Dr Ward remarks: ‘The effect of the work on the children’s behaviour is remarkable, and parents and carers often report on having witnessed their child interacting in ways they never before thought possible. But, as scientists, we do not fully understand the mechanisms at play during these unique social interactions between actors and children.’

Therefore, during a week of performances in 2018 at the Bridge Theatre in London, the project team studied these interactions in detail using wrist-worn movement sensors. The aim was to see if patterns of connection, or synchrony, could be found between the participants and how these related to moments in the play. Crucially, the team sought to discover if this technology could be used as a way of gauging a child’s engagement with others, and might it be used, for example, in the classroom, or during therapy sessions.

Participants

Significantly, the project’s findings demonstrated that data from wearable movement sensors can indeed be used to study interpersonal behaviour and synchrony in studies involving autistic children. When people work together, or engage with one another, they move in similar ways. Crucially, the project discovered that some of the children moved with the adults in unexpected ways. In one instance, for example, a child did not appear to be particularly interested in the performance and did not seem to be watching the adults; but when his movement data was analysed, the team discovered that he was gently moving in perfect synchrony with the others. He was engaged, just not in an obvious way.

The findings, however, were only possible due to the inter-disciplinary nature of the work. As Dr Ward notes: “This project simply could not have happened without intense cross-disciplinary interaction. The work required a strong understanding of autism research and clinical practice, knowledge of behavioural and interpersonal synchrony (through psychology and neuroscience), practical experience of wearable sensing and machine learning (through computing and engineering), and lastly, but importantly, a great connection to theatre and theatre practice. Having worked as both an engineer and an actor, and then being based at Professor Antonia Hamilton’s lab for Social Neuroscience, this overlap of fields was a fantastic opportunity for me personally. Generally, cross-disciplinary research is difficult, firstly in finding the right people to talk to, and then because of a lack of common language leading to difficulties in agreeing common objectives. Facilitators like Gregory Thompson (UCL Entrepreneur in Residence) really helped us to make the right connections, upon which the grant from Grand Challenges allowed us to explore those collaborations without the constraints of having to specify in advance exactly what it was we would achieve. This freedom led to a more creative, and ultimately fruitful, collaboration.”

The project’s findings have recently been published in ISWC (Proceedings of the ACM International Symposium on Wearable Computing) and the team are also currently compiling a journal article aimed at the autism research community. The team also have several grant applications in the pipeline related to this work to enable this seed project to act as a catalyst for further studies.

In addition, following the project’s success, a two-day event will take place in May at the Bloomsbury Theatre, where Flute will again team up again with Professor Hamilton, Dr Ward, and other scientists at UCL and Goldsmiths, to explore what goes on in the brain of an actor — and the audience — during performance. The piece, entitled ‘Deconstructing The Dream’, will be a ticketed event, open to the public and should be a lot of fun (as well as provide valuable data for research!). More details will be announced shortly.

Between Spaces: Museums and Mental Wellbeing in Young People

By Siobhan Morris, on 11 January 2019

In the latest feature showcasing Grand Challenges’ Adolescent Lives initiative, Siobhan Morris learns more about the impact of using museum objects and practices on adolescents’ mental health in psychiatric inpatient settings.

In Britain, the number of under-18’s presenting to hospital accident and emergency departments with psychological distress has more than doubled in the first half of this decade. Likewise, NHS figures published in September 2018 revealed that almost 400,000 children and young people aged 18 and under are in contact with the health service for mental health problems. Such increases, however, have occurred during a period of austerity and amid cuts to services. Psychotherapists have consequently warned of “a serious and worsening crisis” following a survey of staff in child and adolescent mental health services.

Dr Humera Iqbal and Dr Katie Quy (Lecturers in Psychology in the department of Social Science, UCL Institute of Education), in collaboration with Dean Veall (Learning and Access Officer, Grant Museum of Zoology) and Professor Paula Reavey (London South Bank University), therefore set out to explore what impact using ideas from museum spaces and creative practice could have on young people based at psychiatric inpatient settings. The project sought to ask: how can we foster a sense of belonging in young people with mental health needs in inpatient hospital settings a) to wider society and b) within the unit as a space of wellbeing? More specifically, the project asked: can museum-based practices facilitate discussions with adolescents experiencing mental health difficulties with issues relating to identity, memory, belonging and wellbeing?

To do so, the project conducted a detailed literature review and developed a database of museum and cultural practitioners working on mental health and with young people and details of inpatient hospitals working with arts and cultural organisations. Alongside this, the team worked with young people in inpatient settings – hospital units that provide intensive assessment and treatment for young people with mental illness or psychiatric disorders for which enhanced community treatment is no longer viable or safe. To address the question of how to foster a sense of belonging in these units, the team conducted interviews with museum and hospital staff and conducted three workshops (based on non-clinical interventions) – two in an inpatient unit and one at UCL Museums. Undertaking research in hospital settings with patients and engaging young people as co-researchers, allowed the team to find out about their experiences, both positive and negative, of cultural engagement and if it was something they identified with.

UCL Grant Museum of Zoology

To facilitate such discussions, the team used a range of museum-based activities with the young people including, object handling, art appreciation, and curation. For example, the team took a 700 million year old dinosaur bone from the Grant Museum into hospital, encouraging the adolescent patients to handle the object and interact with one another. They then facilitated conversations which emerged from the object handling. The project demonstrated that such workshops connected young people to the outside world and wider society by allowing them an opportunity to handle the rare and valued objects, and that this made the young people feel valued and important. In addition, the workshops created a space to make friends, to talk, and to forge connections during a time of boredom and often isolation for inpatients.

In this regard, the project found that such non-clinical interventions can be highly effective. The workshops demonstrated that providing a space for discussion around objects led to debates relating to the teenage patients’ sense of self and place in society, as well as discussions on race, class, and wellbeing. Patients and staff noted that experiences could be explored in a less risky manner due to discussions being externalised and based on the art and object rather than the individual circumstances. In this way, using museum practice in inpatient settings led the workshops to be seen as ‘safe’ and helped to diminish the stigmatising effects of inpatient admission. Participants could engage with the outside world and the young people were encouraged to think of museums as safe spaces. One challenge that emerged from this pilot study was around measurement and the need for development of tools for measuring the effectiveness of such non-clinical trials in adolescents.

Humera and Dean speaking at the Participation in Cultural Heritage for Mental Health Recovery, International Conference

Humera and Dean speaking at the Participation in Cultural Heritage for Mental Health Recovery, International Conference in Ghent (organised by FARO)
photo by Simon Bequoye

The project also found that there was a need to provide support for museum practitioners when conducting such workshops. In speaking with cultural practitioners, the project team learned about their needs in working with teenagers with mental health difficulties and identified ways in which academics could help with meeting these needs. The team were also able to reflect on ways of developing impactful (museum practitioners specialise in this) but also empirically and theoretically driven work (using theories on belonging from psychology and sociology).

As Dr Iqbal noted: “The funding provided a great opportunity for two very different disciplines to come together and merge practices in a small pilot study. What we have learned is that there is more work to be done in developing and measuring the effectiveness of non-clinical interventions and thinking about how space can influence wellbeing. Also, there is a real need for early intervention work before young people get to inpatient settings. We really hope to be able to work more with teenagers experiencing mental health challenges.”

Further information about the project is available on the Grand Challenges website.

Autistic Adolescents’ Use of Social Media

By Siobhan Morris, on 9 January 2019

The latest post in Grand Challenges’ Adolescent Lives series showcases Will Mandy and Laura Hull’s project which asked, can we promote happier, healthier adolescence for autistic people by gaining a better understanding of how they use social media?

“Social media is today a place within which we socialise, not just a means of communication. Social media is not an alternative to the real world – it is the real world. [Therefore] the best way to appreciate the impact of social media is to focus on specific sets of relationships: those between schoolchildren, between teachers and schoolchildren and between both of these groups and parents.” So argues Professor Danny Miller et al in How the World Changed Social Media (UCL Press, 2016). In collaboration with Professor Miller, Dr Will Mandy and Laura Hull (UCL Clinical, Educational, and Health Psychology) project – ‘Autistic Adolescents’ Use of Social Media’, therefore aimed to do exactly that, appreciate the impact of social media on autistic adolescents and ask how do autistic teenagers use social media to construct identity and build communities?

To do so, the project posed the questions:

  • To what extent do they participate in the benefits of social media? Can we enhance these benefits?
  • To what extent do autistic adolescents suffer costs of social media usage? Can we minimise these risks?
  • How can we study autistic teenager’s use of social media?

The team interviewed and gathered responses from adolescents and their parents, noting the importance of undertaking participatory research with autistic people. In this regard, Mandy and Hull not only sought to research the topic itself, but also investigate how to conduct research into this area.

Two key strands emerged in the project’s findings: control and community. Meeting the expectation on social media of responding quickly was identified as a major difficulty for autistic teens, however control in choosing when and how to engage with others and interacting on their own terms was seen as beneficial.

Similarly, social media was viewed as affording an opportunity to connect with others in a unique way and to find communities of people with shared interests. As one participant noted: ‘You can celebrate being part of a community”, whilst another commented: “It’s peopling completely on my terms.”

However, the adolescents noted it was difficult to marry online communities with experiences in the ‘real world’ and many did not wish to have their online engagement come offline. Difficulties in understanding what is appropriate to share was also found to be a key concern.

In this regard, the project sought to stress both the benefits and risks of using social media for autistic teens with Mandy and Hull synthesising the key conclusions into a rough guide for teens and their parents. Alongside this, the project identified a number of implications for policy including: the opportunity social media affords for developing communities based on shared interests; the importance of parents being up-to-date on current trends and online content to ensure autistic teens stay safe online, the potential for social media platforms to act as vehicles for autistic teens to transition to adulthood by balancing independence and autonomy with safeguarding measures.

In addition, the project has also raised the question – do autistic adolescents use social media in similar ways to non-autistic adolescents? As Dr Mandy asks, “Can we promote happier, healthier adolescence for autistic people by understanding how they interact with social media? If so, how might researchers measure how autistic adolescents use social media to construct identity and build communities?” Ultimately, fundamental to understanding autistic adolescents’ use of social media is understanding how non-autistic adolescents use such platforms. Yet despite the ever growing prominence and role of social media in everyday life, this is not yet known.

Similarly, as Laura Hull stated: “The project was an incredible opportunity for an early career researcher to experience interdisciplinary work, and being able to work with Professor Miller from UCL Anthropology allowed us to evaluate our methodologies and seek to improve research practice as we go forward with this project. Learning about these teenagers’ experiences of social media, it was heartening to see so many positive attitudes to online social interaction within this often marginalised group.”

The project’s guide for adolescents using social media can be accessed here. Further information about the project is available on the Grand Challenges website.

 

Global migration, local impact – Lives on hold in Lampedusa

By Siobhan Morris, on 4 December 2018

In 2017 UCL’s Grand Challenge of Justice & Equality contributed to the funding of a research project entitled, Global migration and local lives in the Italian island of Lampedusa, which examined the impact of migration and attitudes towards migrants on the small Italian island of Lampedusa. Dr Michela Franceschelli, Lecturer in Sociology at the Thomas Coram Research Unit, Department of Social Science, UCL’s Institute of Education and the PI of the study, produced a 30 minute film documentary to disseminate the project’s findings, entitled, CCÀ SEMU. Here we are, lives on hold in Lampedusa.  Below, Dr Franceschelli outlines the project’s work and illustrates how producing a documentary enabled the research findings to be presented in a more inclusive and engaging manner.

Lampedusa is Italy’s most southerly territory located 205km off the coast of Sicily and the first port of arrival to Europe for the thousands attempting to cross the Mediterranean Sea. Between January and October 2016, 144,527 migrants have arrived in Italy, 69% per cent of them via Lampedusa (Interni, 2016). Differently from Greece, which constitutes the route to Europe for many Syrians fleeing war, the majority of migrants and refugees heading to Italy are mostly from Africa, particularly Nigeria (26%) and Eritrea (16%) (Interni, 2016). In autumn 2013, the island witnessed a tragic shipwreck just off its coastline where 368 migrants died while attempting to reach the mainland. With such a tragedy and with increasing numbers of incoming migrants, Lampedusa has become central to debates concerning European migration policy.  Because of this, media attention on the island has increased and Lampedusa has been portrayed as the ‘migrants’ island’ and the centre of the ‘Mediterranean migration crisis’.

Based on interviews with local residents and ethnographic fieldwork, the project explored what life is like for the local people of Lampedusa on the island today. Hence, the research project shifts the focus away from the rescues of migrants at sea and looks at the experiences of the local community. It particularly aims to understand what bonds and what divides the community; the perception of local people about how Lampedusa has changed; and what it means to be Lampedusan to them.

The film illustrates themes from the research and portrays the complexity of the lives on the island. It highlights the contradictions of a community which continues to feel at the periphery of Italy and Europe, despite now being at the centre of global attention.  The research found that the ‘crisis’ for Lampedusans was less about migration and more about the institutional failure of the Italian government, exemplified by complaints about poor quality public services such as schooling, transport links, and healthcare. In Lampedusa, the mismanagement of migration has come to be seen as just another symptom of the more general inadequacy of the Italian state, unable to meet even the most basic demands of the community.

The film documents the local population’s discontent with the government, which it shows has led to a general sense of resignation. As Franceschelli notes: ‘We felt this sense of resignation was expressed well by the Sicilian saying, often used by research participants ‘CCÀ SEMU’, which we translated into English as ‘here we are’’.  This phrase testifies to the feelings of both a hope and need for change, but also an acknowledgement of an awareness that the change demanded will be decided by those living outside the island.

The film was launched at a sold-out event at the Bloomsbury Theatre in March 2018. Since its launch, the film has enjoyed tremendous success. In July 2018, CCÀ SEMU. Here we are, lives on hold in Lampedusa won first prize as Best Documentary at the 2018 Taormina Film Festival and the film has also been screened at several festivals and events, including Verso Sud Film Festival, in Frankfurt. In addition, the project was awarded funding by the ESRC Festival of Social Science and included as part of an event on ‘Art and Migration in the Mediterranean Sea’ at the Horniman Museum in London in November 2018. As Franceschelli said: ‘‘Translating the project’s findings into a documentary film gave me the opportunity to reflect on the great potential of films to communicate research findings and engage with audiences that otherwise would never hear about social science research.”

The trailer for the film can be accessed here. The film was directed by Luca Vullo at Ondemotive Productions, with Director of Photography Daniele Banzato, Original Music by Giuseppe Vasapolli, Animation by Voilà Silvia and the researcher Dr Adele Galipò.

Free Speech in the Age of Social Media

By Siobhan Morris, on 27 November 2018

On Monday 3rd December, UCL’s Grand Challenge of Justice & Equality will host an evening of discussion on Free Speech in the Age of Social Media, exploring the difficulties of upholding freedom of speech in an age when communications cross geographical boundaries, and consequently, country-specific laws governing such practices. Ahead of the event, Colm MacAuliffe (PhD candidate at Birkbeck, University of London) offers an introduction to the debate and asks, in what circumstances should free speech be allowed?

For over ten years, I worked across the arts and culture industry as a film curator, working with innumerable festivals and, more latterly, archives through the UK, Ireland and beyond. During this time, I developed a specific interest in archive television –  television not available on YouTube! – and happened across all manner of British and continental intellectuals, beige suited and chain smoking, merrily discussing the meaning of culture, drunkenly decoding advertisements or even just calmly pointing out the rampant racism inherent in a soap opera. I began to wonder: what happened to the age of intellectuals on television? Through the course of my research, I began to find, or re-discover, television programmes from the BBC and Channel 4 with all sorts of radical messages both blatant and inherent in their productions. Last year, I decided to combine this research with academia and commenced a PhD at Birkbeck, University of London which traces an genealogy of intellectual theory through the academies of France through cultural interlocutors in Britain: New Left Review, Screen, the music press and, indeed, BBC and the early days of Channel 4. This further opened my eyes to the potential – both positive in an entryist sense but also potentially damaging in a cataclysmic sense! – of letting public intellectuals, or indeed any public figure with an opinion, loose on the small screen.

Image credit: CC / Flickr – wiredforlego

My research is very much rooted within what is termed the “Golden Age of Theory” i.e. post-1968 and ending sometime around the mid 1990s when theory reverted to a small ‘t’ and became quickly historicised through the proliferation of books announcing “An Elegy for Theory”, “Post Theory”, “After Theory” and so on. However, was this age of theory really over? Perhaps theory simply has a history and merely the rhetorical fireworks associated with such a term are now deployed in entirely different networks and fashions.

The role of television has been supplanted by social media in the 21st century; therefore how is ‘theory’, or the role of the public intellectual, applicable to such an all consuming business model such as Facebook? And how do we react when people exercise their freedom for expression on social media? Is the internet transnational and therefore ‘above’ the legal laws of any one country?

To illustrate this, I remembered a television show entitled Hypotheticals from the late 1980s. The show centred around the loquacious Australian QC Geoffrey Robertson hosting a series of discussions around politically pertinent social issues of the day. And on one particular episode, titled ‘A Satanic Scenario’, the singer Yusuf Islam – more commonly known as Cat Stevens – openly called for Salman Rushdie, who was then the subject of a fatwa, to be killed. Without wishing to re-hash thirty year old debates, I began to ponder how would this have played out in 2018? How would this be regulated if it was uttered through the medium of Facebook?

The regulation of free speech can be divided into two camps: social and custom. This is illustrated by the differing approaches to free speech between say, Germany and the US. In the US, the Law stays out of regulation and it is up to the State to regulate. Accordingly, Holocaust denial is allowed. Moreover, it emphasises Donald Trump’s refusal to condemn the Nazi’s as quite a shocking move. However, in Germany, free speech is regulated by the Law. One could argue that they do not trust their own society. Either way, Holocaust denial is illegal.

Each of us has a social responsibility. Should we be more alert? And in what circumstances should free speech be allowed? And, in terms of Facebook, which model is more applicable and relevant: the US model? Or the German model?

These conversations were happening thirty years ago as evinced by the Yusuf Islam episode. They are still happening now: Dutch anti-Islam MP Geert Wilders was forced to cancel a planned contest inviting people to submit a cartoon of the prophet Muhammad following death threats and large-scale protests in Pakistan. In Charlottesville, Virginia, white supremacist protesters are protected under free speech rights. We repeatedly have conversations about what we can and what we cannot say. And these are resurrected every time a new means of communication comes in. I expect our freedom of speech debate on December 3rd to be lively, entertaining and provocative, reflecting upon both the cross disciplinary thrust of Grand Challenges and the all pervasive power of free speech regulations across our entire communications sphere.

| The event is free and open to all – registration can be completed via Eventbrite | Further information regarding the event can be found on the Grand Challenges events page.

The Science and Culture of Insomnia

By Nina Quach, on 22 November 2018

This fourth post in the Adolescent Lives series showcases the wonderful initiatives exploring sleep and sleeplessness, led by Clinical Scientist Kimberley Whitehead, from the UCL Department of Neuroscience, Physiology and Pharmacology, and Professor Matthew Beaumont from the Department of English Literature.

Andrew Carnie Sleep Project 2017

 

Most people have experienced insomnia at some point in their life, to varying degrees. About 10% of adults are affected by chronic insomnia – decreasing their quality of life and mental wellbeing. Though a clinical diagnosis can help to identify and mitigate the causes of sleeplessness, it doesn’t necessarily paint the full picture of patients’ experience of insomnia.

“I was working in the field of sleep neurology and I always felt that biology by itself was not fully capturing the experience of my patients and how they reacted to sleep disorders”, Kimberley shares. Physiological indicators can give some insight into the quality of sleep, but leave out a large aspect of the patients’ experience and how they relate to it. In reality, the sleep experience is not restricted to the time we spend in bed, but is influenced by a large variety of factors – life events, moods and emotions, and even the individual’s perception and understanding of insomnia itself.
How are sleep patterns affected by our environment and physical condition? How was insomnia perceived throughout history and treated in the arts? How do our objective quality of sleep and subjective experience differ? These are the topics that Kimberley and Matthew explored in a series of events involving scientists, artists, and members of the public.

In a symposium on sleep and sleeplessness, Kimberley and Matthew brought together perspectives from clinicians, biologists, historians, artists, and cultural critics:

  • Professor Matthew Beaumont (University College London, Department of English Language and Literature / UCL Urban Laboratory)
  • Kimberley Whitehead (University College London, Department of Neuroscience, Physiology and Pharmacology)
  • Andrew Carnie (artist)
  • Dr Sofia Eriksson (National Hospital for Neurology and Neurosurgery)
  • Professor Simon Morgan Wortham (Kingston University, Department of Humanities)
  • Professor Nick Franks (Imperial College London, Department of Life Sciences)
  • Dr Sasha Handley (University of Manchester, Department of History)
  • Dr Fran Knight (University College London, Institute of Education)
  • Dr Stefan Blayney (University of Sheffield, Department of History)

Attendees had a chance to share their thoughts at a drinks reception, to the sound of a sleep-inspired music set specifically created by Alex Solo. This particular aspect of this public engagement initiative was supported by the Physiological Society.
The multi-disciplinary perspectives from the symposium fed into an essay published by Kimberley and Matthew in the Lancet, in which they approach sleeplessness from two complementary perspectives – the sciences and the humanities – and explore how the two viewpoints intersect and shed new light.

Following on the symposium, Kimberley organised an exhibition, ‘Representing the body: art, physiology and pathology collide’, at the UCL Pathology Museum in collaboration with curator Subhadra Das and artist Andrew Carnie.

Andrew Carnie, Jump. Laser cut lambs leather, 2017.

The commissioned series of artwork explored the transition from wakefulness to sleep, with the artist particularly inspired by the concept of the body being ‘swallowed’ by sleep, and the motif of dusk. This exhibition was celebrated with an opening event in which Kimberley, Andrew, and pathologist Alan Bates from the Royal Free Hospital discussed their work.

In parallel, as part of the Grand Challenges’ Adolescent Lives series, Kimberley and Matthew wanted to explore how adolescents can influence and direct the development of sleep research to facilitate co-production of knowledge. Kimberley conducted a workshop involving young patients with cancer at the Teenage Cancer Unit, facilitated by artist Frances Newman, which highlighted the influence of all aspects of life on people’s sleep habits and experience. Topics frequently raised by the participants were the pleasure they took in sleeping, fluctuations in sleep according to what they knew was planned for the following day, and domestic pre-sleep routines such as spending time with pets. These contributions will inform Kimberley’s research going forward.

Andrew Carnie, Wave, goodbye.
Water colour and stitch on Hahnemühle Leonardo paper, 2017.

 

“All the work that has come out of this collaboration, including the article we published in the Lancet, has been about trying to find a common language for scientific, social, historical approaches”, Matthew concludes. “It has reinforced our initial speculation that this was a really interesting way of drilling down into both the hard sciences and the broader social questions. I am delighted that Kim has reached out to me.”

 

 

Further resources:

Teen Views on Adolescence

By Siobhan Morris, on 19 November 2018

In the latest feature showcasing Grand Challenges’ Adolescent Lives initiative, Siobhan Morris discovers more about teenagers views on what exactly is meant by the term ‘adolescence’.

Adolescence is commonly viewed as a time of pivotal development, when individuals go through a range of physical and social transitions. But adolescence as a life stage can be ambiguous and unclear, which has led to academic debate around how best to define adolescence. Public health researchers have highlighted the significance of adolescence as a developmental period, suggesting that ‘adolescence’ in developed populations should span the ages of 10 to 24, coinciding with the physical, behavioural, and social changes that occur during this time. But social scientists have shown, mainly through cross-cultural comparisons, that the cut-off point between childhood and adulthood is not always so easily defined by age.

So, what is ‘adolescence’? This was the question Dr Emily Emmott (Teaching Fellow at UCL Anthropology) and Francesca Vaghi (PhD candidate Thomas Coram Research Unit, UCL Institute of Education/Department of Anthropology and Sociology, SOAS) posed to 28 teenagers aged 14 to 18 at a workshop held at UCL in June. The event, part of the Grand Challenges supported project, ‘A Time of Change? Harmonising the meaning of “adolescence” between young people and researchers‘, brought together teenagers and researchers to share their views and opinions about what adolescence means to them and address if and how the scientific understanding of adolescence complements or conflicts with their own views and identities. The result was a day of lively conversations and stimulating reflections.

The workshop began with research talks followed by two co-creation activities – making a timeline from childhood to adulthood, and exploring ways to communicate research findings to young people. The key findings (outlined below) can be grouped under two themes: meanings of adolescence and communicating adolescence.

In defining the meaning of adolescence, the young people talked about adolescence as a period of increasing freedom and independence and concurrently, as a time of exploration and self-discovery. Alongside such positives, however, participants also characterised adolescence as an ‘awkward’ time filled with uncertainties and contradictions around what to do and how to act. As one participant aged 17 noted, “The bad thing about being my age is being expected to act like an adult at college/work, but being treated like a child at home.”

Overall, teens in the workshop generally recognised both the positives and negatives of adolescence and it was not viewed as an inherently negative stage in life – contrary to societal stereotypes, which often focus on adolescence as a time of upheaval and stress. The participants also thought that age mattered less than big life transitions in determining the end of childhood, with one participant succinctly noting, “Forget about age! Age isn’t accurate enough.”

Regarding how to best communicate academic research on adolescence, the teenagers came up with a range of ideas and devised a communications plan with a clickbait headline. They agreed that there is a need for research findings to be communicated to both young and older people and felt that engaging adults in conversations about younger people’s experiences was helpful in countering stereotypes. Alongside this, the workshop also explored if the words used by researchers to categorise life stages and adolescence were meaningful for teenagers. Participants commented that the term ‘adolescent’ sounded formal, but were emphatic in noting that they did not want to be termed ‘young people’! This was felt to be an ambiguous phrase.

How then should researchers define and talk about this pivotal life stage? The project demonstrated that adolescence is about development and transitions. In that sense, a rigid age-range of adolescence is likely to conflict with how adolescents themselves view adolescence. As Francesca Vaghi comments, “One of the main lessons learnt was that there is ample potential for researchers and young people to co-create data in academic enquiry. Conducting research with, rather than about, participants can help us refine questions and go in directions we might not have thought of exploring, such as challenging the over-emphasis on teenagers’ risk-taking behaviours that predominates in much of the literature about adolescent health. Equally, participants’ insights were very helpful in showing novel avenues through which we can disseminate findings to the wider public, which is an increasingly urgent matter to address as we endeavour for research to have an impact beyond academia.”

In addition, the workshop findings indicate researchers need to focus on the positives as well the negatives of adolescence – examining the benefits, not just the risks. As one of the young people noted, “We spend most of our lives as adults, so it’s important to understand what happens before, and how it impacts adulthood.”

The project’s ultimate aim, however, was to reflect what the young people said, spreading their voices into the research community and beyond. The work provides an example of how teenagers can be involved as partners rather than the subjects of research, showing how to communicate research in innovative ways to wider, and younger, audiences. As Dr Emily Emmott noted, “As a researcher, participation activities are brilliant as they help you understand and challenge your preconceptions. There is also something very rewarding and exciting about coming up with ideas together with participants.We believe adolescents are experts of adolescence, and their voices are worth listening to.”

This project was also supported by Larissa Pople and Dr Alex Turner from The Children’s Society, Cliff Manning from Parent Zone, and Cait Griffin from UCL Institute of Cognitive Neuroscience.” The project’s findings report can be accessed here. Further information about the project is available on the Grand Challenges website.

160 Characters: Peer-to-peer support via text message for adolescents living with HIV

By Siobhan Morris, on 9 November 2018

In the second example drawn from Grand Challenges’ recent Adolescent Lives initiative, Siobhan Morris reveals the impact of the 160 Characters project and its role in providing peer-to-peer support via text message to adolescents living with HIV in South Africa.

In adolescents aged 10 to 19 years old, HIV is the leading cause of death in Africa and the second leading cause of death of adolescents globally. In South Africa, over 15% of young women and 5% of young men aged 15-24 are infected with HIV. Moreover, research shows that HIV positive adolescents are at increased risk of mental health problems, which can in turn lead to poor health outcomes. Given the large number of adolescents living with HIV, there is an urgent need to develop approaches to provide ongoing support that is immediate and accessible to all HIV positive adolescents. Therefore, as part of Grand Challenges’ Adolescent Lives initiative, Dr Geordan Shannon of UCL’s Institute of Global Health partnered with The SHM Foundation to develop a solution to provide support for adolescents living with HIV in South Africa.

To do so, the team used data generated by Project Khuluma – a psycho-social support intervention that provides closed, peer-to-peer support groups to adolescents living with HIV via text message. Launched in 2013, Project Khuluma has supported 160 adolescents in Cape Town and Pretoria, generated more than 60,000 text messages, and recorded increased social support and self-reported medical adherence, and decreased internalised stigma. However, the impact of the intervention had never been comprehensively evaluated, leveraging the rich data source of the text messages. The 160 Characters Project therefore sought to bring together the insights of adolescent service users, medical science, social science, implementation science, literature, and technology to generate innovative methodologies ‘to crack’ and unlock the Khuluma text message data.

Adopting a cross-disciplinary approach, as championed by UCL’s Grand Challenges initiative, was key. As the project team noted, “adolescent lives are complex and no single discipline in isolation can fully address the often complex cultural, health and social needs of this vulnerable group.” The project therefore pioneered the use of a ‘six voices’ research framework in order to develop a methodology for analysing the text message data. Each of these six voices represented a member of the research team, bringing together insights to develop a participatory, interdisciplinary methodology. The six voices represent – adolescent service users, medical science, literature, socio-cultural, implementors, and technology.

The project was developed around the perspectives of nine Khuluma Peer Mentors – adolescents living with HIV in South Africa – who were included in the research through a participatory research cycle to make sure their voices were heard and that solutions were sustainable and appropriate. As Malebo Ngobeni, a Project Manager for The SHM Foundation in South Africa, notes, “Mentors are easily able to see beyond what is said in a text because they have lived many of the experiences that are being discussed.”

The project ran two cross-disciplinary workshops where each of the ‘six voices’ was represented by a member of the collaborating research team. In summarising discussions, it was noted that each of the different ‘voices’ took different approaches to the texts:

• Literature was interested in how communication doesn’t work more than how it works; the comic events that lead to resolution, or the tragic events that lead to miscommunication.
• Medical Science was interested in the hard end points like change to immunological states, these correlate with soft end points like self-reported adherence.
• Social Scientists looked at the individual voices and how they contribute to and are shaped by broader social issues, thinking about how best to build social dynamics so as to meet, often
measurable, outcomes.
• Technologists who focus on design look at how we might replicate effective interactions in real life through technology; mathematicians take a naïve approach and build systems from the
data based on mathematical language.
• Implementation Scientists thought about where this intervention fits into the health system, what does it provide that other services don’t?
• Adolescent Service Users saw the potential to change attitudes toward HIV through sharing personal experiences and building self-confidence.

Overall analysis showed that there were five key thematic concerns that arose when workshop participants analysed the data. These included self & identity; relationships & responsibility; community & acknowledgement; society & influences; and HIV. At the centre of the project, however, was the input and validation from adolescent service users themselves. The analysis highlighted that adolescents didn’t explicitly discuss or bring up HIV directly very often. Whilst the stigma of living with HIV manifests in all interactions, speaking about the issues associated with it without speaking directly allows adolescents to have a new attitude toward the virus. As the project’s final report notes, “it is precisely the fact that these [text message] support groups are removed from the anxiety and stigma of their relationships and day to day interactions inflected by their status, that makes this a space where they can explore new identities.”

Alongside the workshops, the 160 Characters Project also delivered a range of outputs over the course of the Grand Challenges’ small grant period. These included: drafting two academic papers; development of a 160 Characters website to house information, blogs, future research results, and help build a network of like-minded practitioners; a dissemination workshop to discuss next steps; and submission of two grant applications to the Medical Research Council and British Academy respectively to allow the team to pursue in-depth analysis of the data corpus from each of the ‘six voices’.

Ultimately, the 160 Characters Project aims to develop an interdisciplinary methodology for evaluating the effectiveness of online communities and digital support groups globally. In the long term, it will involve adapting and implementing the methodology to other existing online communities in partnership with governments, NGOs and national health services that use different platforms such as Facebook, forums, chat rooms, Whatsapp, or other bespoke mobile applications to meet the mental health and well-being needs of vulnerable populations. As Nikita Simpson from The SHM Foundation has remarked, “the 160 Characters Project was one of the most fascinating and innovative projects I have ever worked on. The mixed bag of people from different disciplines and geographies brought such colourful insights to the table, and really opened up the layers of meaning within the text message data. My existing interpretations of meaning within the messages was both challenged and enriched. I see this methodology now being applied to sticky problems in global health across the field.”

Similarly, Dr Geordan Shannon concluded, “the 160 Characters project means a lot to everyone involved. It is innovative, participatory, & exciting. It brings together a dynamic interdisciplinary team, puts adolescents at the heart of the project, and challenges us to redefine what healthcare really means. We are now looking to take this project to scale.”

Find out more about the project here, on The SHM Foundation blog, and read the project’s findings report, in full, here.

How can we tackle inequalities embedded in society?

By Siobhan Morris, on 5 November 2018

UCL Grand Challenges invites proposals to address the theme of Embedded Inequalities. Despite the demographic, socio-economic, and cultural transformations that have occurred over the past decades, vast inequalities remain both within and among countries. We’re looking for innovative scholarly thinking to tackle these injustices, with funding of up to £2,500 available for cross-disciplinary projects.

With the recent centenary of women gaining the right to vote in the UK, the UK’s first transgender conference being held in September, and more than fifty years after equality commissions were first established in the UK and other European and North American states, there has been increased attention on issues of structural and relational inequality in society. Despite the demographic, socio-economic, and cultural transformations that have occurred over the past decades, vast inequalities remain both within and among countries.

Paraisópolis (Paradise City), Sao Paulo, Brazil. Copyright: Luiz Arthur Leirão Vieira (Tuca Vieira). Photograph: Tuca Viera/Tuca Vieira

Injustice and inequity are therefore becoming increasingly prominent in political debates, particularly concerning access to social goods, education, technology and resources. With recent reporting showing 13.5 million people are living in poverty in the UK and of these, 60% are in households including an inadequately paid full-time worker; close to eight in ten companies and public-sector bodies in the UK paying men more than women; and disadvantage on the basis of ethnicity remaining prevalent in the UK labour market, to what extent can there be said to have been real progress made since the emergence of equality commissions and legislation, or are we witnessing a return to the inequalities of the past?

Such inequalities often overlap and are experienced in relation to one another. In this context, cross-disciplinary discussion and interdisciplinary scholarship can shed light on ways in which research can examine these issues, identifying new ways and effective solutions to tackle the inequalities and injustices that remain entrenched throughout society.

The Grand Challenge of Justice & Equality therefore invites researchers, at postdoctoral level or above, to apply for funding for activities under the theme of Embedded Inequalities. In total, £10,000 of funding is available to support activities through the initiative, costing up to £2,500 each for expenditure before 31 July 2019. External non-academic partners are welcome as a third partner, particularly community or other organisations with experience of the social issues around inequality, however first and second applicants must be UCL-based and must represent different disciplines. Full details are available in the Call for Proposals and guidance on how to apply can be found here.

The deadline for completed applications is 9am Monday 3 December 2018 – apply here.

For further information, advice regarding submissions, or for an informal discussion of the initiative, please contact Siobhan Morris.

Thrown Away or Fresh Start? Life After Permanent School Exclusion

By Siobhan Morris, on 31 October 2018

In the first of a series of posts reflecting on Grand Challenges’ recent Adolescent Lives initiative, revealing the impact of the research undertaken on this topic, Siobhan Morris finds out what happens to adolescents who are permanently excluded from school in England today.

As part of the Grand Challenges Adolescent Lives initiative, Dr Alison Macdonald from UCL’s Department of Anthropology recently collaborated with Lasse Johansson, a documentary filmmaker at UCL and Sally Dennehy a state school teacher in Somerset, on a project entitled, ‘Beyond the “Engagement” Paradigm: Participating in young lives in rural Somerset‘. The project sought to understand adolescence in the context of permanent school exclusion in non-selective state schools and to challenge societal misconceptions about the ‘excluded kid’.

The project examined what happens to ‘forgotten kids’ who are permanently excluded from school, unpacking the social and personal complexity of social ‘re-engagement’ amongst young adults as they strive to carve out a life for themselves in rural England today.

To address these questions, the team spent time conducting interviews and ethnographic research with adolescents who had been permanently excluded from school. These interviews formed the basis for a film capturing the story of two young men, aged 20, living in the rural west of England who were permanently excluded from school at the age of 14 and received the remainder of their education in a Pupil Referral Unit. The film explores their reflections on the experience of school, their memories of the journey through exclusion, and ends with a portrait of their lives and ambitions today.

The project has identified significant implications for education policy. In England, exclusions have risen by 40% over the past three years, with 35 children being told to permanently leave their school every day. The project’s findings have shown that communication between schools and alternative provision academies is essential for the well-being of vulnerable students. However, they argue that this should not be achieved solely by preventing exclusion in the first place. Instead, noting that we need to re-think the role and meaning of exclusion and understand that exclusion can sometimes be the start of a positive process of re-engagement.

Consequently, the project highlights the need to move away from polar thinking around inclusion and exclusion towards a more holistic understanding of adolescent learning. In addition, they advocate that the voices of young people themselves must be included in such debates and should be influential in shaping policy.

As Dr Macdonald explains, such conclusions were arrived at as “bringing together our different disciplines of film, anthropology and education challenged us to think about research in new ways. Putting the participants’ voices and ideas at the centre of the film was an important goal, and Lasse helped us to engage in film techniques that empowered our participants to have their say and dictate the terms of filming. The process of making the documentary also became a structure and activity through which we got to know the participants, combining ethnographic research with participatory film techniques. This was an especially effective mode of conducting research because it was by thinking through the film content that the qualitative data on lived experience of school exclusion came to life.”

Adopting UCL Grand Challenges’ cross-disciplinary approach enabled the project to develop participatory research with young people by making a film in conjunction with them that captures their views of education and everyday life. “Going beyond our single disciplines opened up a research space that not only pushed our individual knowledge bases as we shared a great deal of skills and expertise, but it also enabled us to address several aspects of our project aims at the same time: produce ethnographic data; produce a social impact film; shift previously held assumptions (including our own) and engage in participatory research methods.”

Following the project’s success, Dr Macdonald has subsequently gained ethics clearance to continue the project’s ethnographic work for another year. The film has also been presented at a teachers’ inset day to inform teaching on this topic. Looking to the future, the project team plans to promote the film among teachers and make it available for teacher training and inset days, publish the project findings in both a public engagement forum and anthropology journal, and substantially develop the project in preparation for a larger funding bid.

Further information about the project is available here.