Mental Health app co-creation: the story so far

Co-creation News Technology

Our 2013 YouthNet research into the way young people seek help in the mobile environment found that stress is a consistent factor in young people’s lives.

To address this key insight, we want to build an app that will ‘de-stress a situation’ and give young people space to make reasoned choices about their next steps.

YouthNet has developed a co-creation system which brings together young people, subject-matter experts and digital specialists to generate and refine digital product concepts.

So far we’ve run two co-creation sessions for our proposed mental health app, with a third scheduled. This will be followed by design, building and testing stages before the first iteration of the app is released.

We’re working with digital agency Neontribe to facilitate the process, ensuring that together we will develop an innovative, sustainable product that is truly driven by and developed with young people.

As YouthNet’s project manager I’ve been heavily involved with all stages of the process so far:

Session 1

The first session ended on a high note, the group of young people manage to work collaboratively on personas and scenarios, coming up with eight ideas on how technology might be able to help in stressful situation (Charlotte Poulter, one of our volunteers, gives the low-down on how this day went on her blog: Volunteers Raid YouthNet).

Session 2

The second session was attended by a group of 12 young Londoners, 3 from the previous session. In true YouthNet style, we started the day with an ‘opening round’ – your name and something that makes you happy. Just going around the room put a smile on my face, reminding me that it’s the simple things in life that make most people happy.

The group was then presented with the eight ideas from the first section. Splitting into groups, each had the massive task of selecting an idea, and breaking it down to a level that they were able pitch back to group.

During the session, they were prompted to question themselves on needs, approach, benefits, competitions, when the app will be used and by who. They then made their initial pitch to other teams and refined and enhanced their app concept based on feedback.

Young people pitching an app ideaAfter an intense day, the teams were ready to pitch back to the whole group. Pitching was probably the most challenging part of the day, involving standing up and talking in front of 20-odd people. But I was impressed: in a short time period they managed to achieve a well-thought out concept, create story boards, organise themselves and present a pitch that would even impress the inhabitants of Dragon’s Den. They managed the Q&A from the others well and the app concepts were so impressively thought out and detailed I could almost visualize them working on my phone.

 

Special thanks to all who had volunteered their Saturday to contribute in the creation of the app:

Stephanie M, Sarah B, Rachel C, Tia A, Anjeli S, Amy H, Sarah C, Morenike L, Ciara M, Steffany M, Luke S and Rebecca B.

Young people need help with anxiety- charities warn of increase in demand for help

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In the week following the announcement of a new quality standard aimed at improving care for people experiencing anxiety disorders*, two leading charities have released figures indicating a sharp increase in the numbers of young people needing help.

Anxiety UK, which supports people living with anxiety, and YouthNet, the national online charity for 16 to 25 year olds, have both seen increased demand for their online services supporting young people during January 2014, as compared to the same time last year.

During January 2014, Anxiety UK experienced a 40% increase in visitors to their website information pages for young people with anxiety disorders and 106% increase in those accessing resources for parents and carers of young people with anxiety.

YouthNet, which runs TheSite.org, an online guide to life for young people, also saw increased visits to their information and support for young people with mental health concerns (up 13% from January 2013).

The charities have warned that this increased trend highlights the need for accessible and trusted information and support for young people coping with anxiety.

Emma Thomas from YouthNet said: “Realising you have a mental health issue can be really stressful in itself. While we welcome a new quality standard, it’s important to recognise that young people are often unsure about how to talk to professionals and need support to help distinguish their feelings and cope. Young people are increasingly looking online for this first, so trusted information in a style and tone they relate to, as well as a safe place to share openly, is vital.”

Nicky Lidbetter, Anxiety UK’s CEO said: “We typically see an increase in enquiries and website visits during this time of year however the rise in the number of visits to our web pages dedicated to young people during the first part of 2014 appears to be a new trend and one that we will need to monitor. Ensuring that young people have access to accurate information and ongoing support is critical as we know that early intervention often prevents the development of more entrenched and difficult to treat, anxiety disorders in adulthood.”

In response, YouthNet has launched a series of videos with mental health campaigner Jonny Benjamin and This Morning’s Dr Ranj to dispel the myths about what happens when you get medical help for a mental health condition.

Young people and anxiety will be a major focus for Anxiety UK in 2014, with plans to increase services to schools to better equip them with the skills to provide support to students affected by anxiety whilst also supporting teaching professionals where stress rates are often high.

-ends-

Notes for editors:

*On February 5, 2014 The National Institute for Health and Care
Excellence (NICE) issued standards to improve the quality of care and support for children, young people and adults with anxiety disorders.

http://www.nice.org.uk/newsroom/pressreleases/AnxietyDisordersQualityStandardPublished.jsp

 

About YouthNet

YouthNet is the charity behind online guide to life, TheSite, which supports around 1 million 16 to 25 year olds in the UK each year.

The UK’s first exclusively online charity, YouthNet has been creating digital solutions to ease young people’s isolation and to make their lives better for 17 years. Currently, YouthNet runs two complementary digital services:

  • TheSite – the guide to life for 16 to 25 year-olds, with 2,000 articles/videos/blogs about job seeking, housing, sexual health,
    mental wellbeing, drugs and more
  • StepFinder – Local help, easily found. An app that pin-points
    the nearest local support service and shows young people how to get there and what to expect.

About Anxiety UK
Anxiety UK is a user-led charity with more than forty years’ experience in supporting those living with anxiety. Anxiety disorders are common and treatable. Anxiety UK works to relieve and support those living with
these conditions by providing information, support and understanding via an extensive range of services, including fast access to reduced cost 1:1 therapy services. The Anxiety UK helpline alone receives over 16,000 calls a year from people suffering from phobias and anxiety disorders.

The charity provides support to people with any anxiety condition, or specific phobia such as fear of spiders, blushing, vomiting, being alone, public speaking, heights – in fact, any fear that stops people from living their lives to the full.

For more information, visit www.anxietyuk.org.uk

 

Metaphor, mental health and online support

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There is no foolproof formula for successful online support.  Using the written word to ensure a young person feels listened to, understood, informed and positive about their next steps is a complex and varied task.  As Advice and Training Manager, my role is not just to do this myself, but to train others to do it too.  As with any inexact science, it’s much easier to identify something that is done right, than it is to say and to teach how it is done. As a result, I’m always interested in identifying, blogging about and exploring in more depth what it is about successful support that makes the real difference, what it is that makes someone respond like this;

I would just like to say thank you so much as i feel its basically saved my life. The people who reply should be so proud to be able to have that effect on someone like myself who feels there’s no way out of this hell. After receiving my reply i have now realised there is and i now have the courage to get help. Thank you so so so so so much! you’ll never know what you’ve done for me, you’ve saved my life!” (askTheSite feedback)

 

My previous blog post explored stories and writing and their role in support. Stories and

Image: Tim Parkinson - Flickr timparkinson

creative writing about experiences create a great vehicle for metaphor and simile. In my opinion, these are really valuable tools in supporting those who are struggling, particularly with mental health and particularly online.  In this piece I hope to explore why in more depth.

We see metaphor everywhere in mental health. Famous writers have given us endless metaphorical imagery capturing mental distress. Famously, Sylvia Plath represented her depression as a bell jar;

“because wherever I sat—on the deck of a ship or at a street café in Paris or Bangkok—I would be sitting under the same glass bell jar, stewing in my own sour air.” – Sylvia Plath- The Bell Jar

and Winston Churchill as his black dog (note his description of life without depression as well);

“I think this man might be useful to me – if my black dog returns. He seems quite away from me now – it is such a relief. All the colours come back into the picture.” – Winston Churchill (in a letter)

Black dog has in fact been used many times in history as a metaphor for depression or melancholy. More recently, Sane, our mental health expert partner on askTheSite, launched their Black Dog campaign, with an aim to reduce the stigma surrounding mental health and give people the language to talk about it.

“The purpose of the campaign is to give people a language in which to express their inner feelings of anxiety, depression and loneliness, to talk more openly and seek help.” – Sane’s website.

But it isn’t just the famous, the writers and the campaigners who use language creatively. Many people suffering from a range of mental health problems describe their stories and experiences in powerful metaphorical terms.

The intangibility of mental health

Depression, and other mental health conditions can be deeply intangible. Many people have said depression would be so much easier to handle if we changed colour in a depressive period. This would provide ourselves, and others with a tangible sign that things weren’t right – and something recognisable to blame our mood and feelings on.

The inadequacy of medical language

In addition, the language we use to talk about depression is often woefully inadequate. The word ‘depression’ has become part of the spectrum of everyday language people use to describe feeling sad or low. This makes it hard for people to understand the real difference between feeling sad (a natural response to aspects of life) and suffering from depression. This can influence people who have never had a mental health problem and therefore fail to understand why you can’t ‘cheer up’. Of course, it also affects people who are themselves struggling with depression and feel they are a failure for feeling, what they see as unnaturally sad or incapable. It would seem that a greater linguistic distinction would be helpful. Unipolar seems to be becoming a more popular term, purely to get away from the overused ‘depression’.

The shared experience

However, even if ‘depression’ was used purely to describe a type of mental illness like schizophrenia or bipolar, it doesn’t explain what that actually feels like. Metaphor can help to pin these feelings down. It allows us to portray something that can’t be easily reduced to simple factual words. Instead, we are using language of shared experience to transfer a feeling. We are explaining something in the mind in terms of something else, something outside of us that others have also experienced. This means both people can take a step back and examine it as something separate. It becomes something more people can relate to. Everyone knows what it feels like to be in fog, or can imagine what being trapped constantly behind glass feels like.

In addition, the endless potential of metaphorical language allows us to identify more easily the variations of experience that form part of a mental health difficulty. And identifying the experiences is a step towards understanding and managing them. Using depression as an example, if someone is able to say ‘today is a foggy day, and that’s usually followed by days behind a glass wall – but I’ve noticed that the glass wall phase only comes if I have been drinking’, they are in a good position to take make decisions and take positive steps forward. We can help people to think about and describe their experience and make those more detailed distinctions.

In fact, it’s hard to see how we can discuss personal conscious experience in the depth needed to provide support with mental health without comparing it’s activities to other things we can see in the world outside. Like that famous ‘does red look to you like red looks to me?’ question, everyone’s experience of ‘happy’ may be very different, and we’ll never know – but you could argue that this matters less – as long as it is a positive experience.

On the other hand, in order to provide mental health support for others, and for others to feel like they are understood, it’s important that we find a way of trying to share more creatively what an experience actually feels like. And people react positively to the recognition of a shared feeling through metaphor – whether it’s a special poem they feel captures their experience, a personal story that they can relate to or some written support online, capturing something that shows that the person behind the screen really understands what they are going through.

Reframing the negative

It’s also worth recognising the power of language and metaphor not only to describe a negative feeling, but to change your perspective on it by reframing it using more positive language.  For example, I have heard a relationship described as ‘spread thin, squashed and suffocated’ by one party suffering from depression and the difficulties that caused. The language powerfully portrays a sense of the destructive nature of mental illness on relationships and is potentially something others, including the other person involved could relate to and understand. Perhaps, as part of helping this couple feel more positive about their future, their experience could be described as ‘struggling with and learning to manage the introduction of a difficult new ball in the juggling act that is any relationship’. Suddenly, while not completely positive, the experience feels like something which has an end, something recognisably difficult but something that can be managed and something that they are not the only people to experience.

Metaphor and simile in online support at YouthNet.

In a world of online support, all we have is words.  We can’t use body language or tone of voice to convey empathy or understanding. In fact, many of the young people who come to TheSite.org specifically choose us because they don’t have to speak to someone face to face, instead taking their time to write everything down, to make sense of it and to ask questions without embarrassment. In addition, services like our community, allow many young people going through similar things to share their feelings, and take time to find new ways to express and understand them, in a way that would be hard offline to anywhere near the same extent.  I’ve pulled out some examples of metaphor in personal stories written by our users;

“Most of the time I felt drunk on grief. It’s a hard emotion to explain unless you have felt it ? I felt like I wasn’t really in control, like I was running on auto pilot and not thinking straight and at the same time there was a giant cave of sadness in my stomach….I had been running and running and finally I had stopped to catch my breath and it had caught up with me.” – from a personal story on Step Finder.

“I felt such utter despair it rocked straight through my core leaving me with emptiness……..it was the start of an incredibly downhill spiral …..I still have days where I feel empty” – from a personal story on Step Finder

You can read some of the reactions and recognition these stories created in my previous blog here.

Part of our team’s role is to ensure those young people feel the same empathy and understanding from us through the words we use. If, by listening to their metaphors, sharing ours and using language creatively to describe  and break down experiences, they know that we understand how they feel, they are more likely to trust us. They will feel less alone in their experience. They will be able to better understand and talk about their own emotions and to think about the suggestions for support and management we offer.

Finally, while I don’t think it is as simple as training our volunteer advisors to ‘use metaphor’, I do think that the more we can help them identify and understand the elements of effective support, the easier it will be for them to give it themselves.

Growing up gay in the UK

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This weekend is Pride London, the annual celebration of diversity and the lesbian, gay, bisexual and transgender (LGBT) community. It’s also 42 years ago this week that the Stonewall riots took place in New York. The contrast couldn’t be starker. In just over four decades New York’s gone from rioting to celebrating outside the Stonewall Inn as New York legalised same sex marriage. Now seems an interesting time to consider what life’s like for today’s LGBT youths in the UK.

What may come as a surprise to some of you is that the picture isn’t quite as rosy as you’d perhaps expect. Research from Stonewall (the UK charity named after the Stonewall Inn) has painted a picture of the homophobic bullying that’s endemic in our schools. In particular, the word ‘gay’ remains the generic derogatory term of choice (‘that’s so gay’) for secondary and even primary school students. Many claim that’s it’s just a word (a certain proverb about sticks and stones is often mentioned), or that it’s clearly not intended as bullying, so it’s surely not a problem?

This couldn’t be further from the truth. The impact of homophobic bullying – intended or not – has led to a number of high profile and tragic suicides by teenagers, both here in the UK, but even more so in the US. Like Dominic Crouch, a 15 year old schoolboy from Cheltenham who jumped to his death over rumours that he was gay. No-one knows whether he was or not, but homophobic bullying clearly destroyed his life.

And this is just the beginning. There is a brilliant online project, hugely boosted by high profile support from Google, that aims to tell LGBT teens that It Gets Better. I definitely think this is true, but it’s also a reality that gay men (and we can reasonably assume LGBT people more widely) are still much more likely to commit suicide, suffer depression and addiction than our heterosexual counterparts. The logical conclusion is that this is a repercussion of the sense of shame, secrecy and even self-loathing that is felt by many LGBT people and which, it seems abundantly clear to me, often starts in the playground.

I’m so proud to work at YouthNet, knowing that TheSite.org provides a safe space where, through the boards and askTheSite in particular, we can support young people as they explore and come to terms with their own sexuality. I can’t help but wish I’d known about it when I was doing likewise.