In this podcast on Digital Interventions, Dr. Bethan Davies & Dr. Aislinn Bergin, of NIRH Mindtech, talk to freelance journalist Jo Carlowe about how these innovations can have a positive effect on young people’s mental health.
They discuss the different digital technologies available during different points in a person’s life, including mental health promotion, prevention, treatment, self-management. Additionally, they talk about the benefits of ‘Serious Games’, apps, and the emergence of virtual reality, as a form of treatment for a range of mental health issues.
You can listen to this podcast on SoundCloud or iTunes.
Intro: This podcast is brought to you by the Association for Child and Adolescent Mental Health, ACAMH for short. You can find more podcasts and other resources on our website www.acamh.org and follow us on social media by searching ACAMH.
Interviewer: Hello. Welcome to the in-conversation podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Jo Carlowe, a research journalist with a specialism in Psychology. Today I’m interviewing research fellow and chartered psychologist Dr. Bethan Davies and Research Fellow. Dr. Aislinn Bergin. Both Bethan and Aislinn work at the National Institute for Health Research MindTech MedTech Cooperative Research Group at the University of Nottingham and Bethan has written the ACAMH Topic Guide on Digital Interventions.
Interviewer: Bethan and Aislinn, thanks for joining me. Let’s start with introductions.
Dr. Bethan Davies: Okay, yes. I’m Dr. Bethan Davies and as you mentioned I’m a Research Fellow and Chartered Psychologist here at MindTech. My background is in Psychology and in particular Health Psychology, so that’s the application of psychological principles, so understanding health and how we cope with health problems and things like that. So currently I have a lead role in the ORBIT trial, which I’ll come to later and I work on any research project that basically relates to children and young people’s mental health.
Dr. Aislinn Bergin: Hi. I’m Dr. Aislinn Bergin and yes, my background is psychology and computer science. I’m also a Research Fellow here at MindTech and working on the gameChange project, which won the NIHR Mental Health Challenge Awards. So my interests are mainly digital mental health and trying to work out how we can support the NHS to implement new technologies into mental health services.
Interviewer: And can you explain a little bit about what MindTech is? What is the MindTech MedTech Cooperative?
Dr. Bethan Davies: Yes, sure. So MindTech is one of several MedTech Research Centres funded by the National Institute for Health Research, which we call NIHR for short. So NIHR are funded by the Department of Health and Social Care. So the NIHR is the research arm of the NHS, and we work with a range of other universities, industry partners and small organisations in our work as well as with the NHS.
Interviewer: Now we know digital technologies are an integral part of a young person’s life and I note in the ACAMH topic guide Bethan you state that for children and young people there isn’t much differentiation between online and offline worlds. Can you elaborate a little?
Dr. Bethan Davies: So what I mean is that as adults we often use this wording that kids need to get outside into the real world. Obviously what I had growing up in the early days of technology, I’d go home, I’d see my friends at school, go home and I still had, in those days it was MSN Messenger so I could go on the internet for an hour at a time and talk with my friends on there and then come off of there. Usually as adults we think that what kids talk about online or through digital technology isn’t the same as in the real world as the world offline. For kids and young people being online is their real world. There’s no real differentiation between online and offline communication. What they talk about on Facebook or Snapchat and Twitter etcetera has just as much power and meaning as if they spoke about it face-to-face. I think there seems to be this thing that adults think that communication is only meaningful when it’s face-to-face, with young people it seems to be that all communication across any medium has an impact, probably not just for young people now, probably adults as well. If you think about what’s spoken about online, Facebook, things like that, it has that impact as well offline.
Interviewer: And is that the same in terms of having online friends? I’m thinking… I have teenage children then often they’ll have online friends as well as real-world ones. And again, there doesn’t seem to be that much differentiation.
Dr. Bethan Davies: No. No, I think there’s been, there was a story on the BBC News recently of, I think it was a bunch of people who across the world were playing this online game and one of them died, and so they were all mourning… They’d never met each other, but they were genuinely mourning the person. It was a friend; they’d never met them, but that didn’t seem to matter; they were still a friend despite never having that real world presence as it were.
Interviewer: Now for children and young people experiencing mental health problems, getting access to support can be difficult. Can you describe some of the ways that digital interventions can help increase access?
Dr. Bethan Davies: I think there’s obviously still a lot of difficulty with accessing face-to-face mental health care. So digital interventions aren’t necessarily a solution to increase access, although they’re often cited as being a way of doing so. Digital interventions can be a way of increasing access to an evidence-based intervention or in adjunct to the processes involved in mental health care. So, there’s someone I know of called Matthew Bennion I think his name is, and colleagues, they recently did a survey of web and smartphone apps that are used and recommended for common mental health problems in adult IAPT services in England and these services are using a variety of apps and web based interventions even within their service, or they’re recommending them to clients.
So, another example, which I’ll come to later, is about using virtual reality in face-to-face sessions in CAMHS services to help facilitate communication between young clients and therapists. So a wider example, not from the U.K., of how digital interventions might help access comes from New Zealand where Sally Berry and colleagues at the University of Auckland developed and trialled SPARX, which is a computer based intervention (you also can access it online), which looks like a computer game, but it’s actually a self-help tool based on cognitive behavioural therapy principle and so in SPARX young people work through a fantasy type environment with this virtual guide that they have where they learn skills that are designed to help against depression; again they all map onto CBT principles. And so to my understanding and from what they’ve told me the New Zealand government have funded the team to provide SPARX for free across the country. It’s almost as if it’s a public health type intervention here. So it’s delivered online meaning young people at risk of depression can access SPARX for free and from their own home.
Interviewer: Just taking a step back, the term digital technologies is an umbrella from lots of different types of online interventions and so on. I’m guessing there’s a number of devices and mediums that come under that umbrella. Can you start perhaps with explaining online programmes? What would be some examples?
Dr. Bethan Davies: Online programmes are similar to self-help books for mental health and if we think about that then there’s this whole books on prescription thing now and you can go to your local library and get various self-help books. They’re a bit similar to that. So usually online programmes are accessed as a website and they often look very similar to other websites that people are familiar with. These online programmes are often based on psychotherapeutic theory and principles. It’s commonly cognitive behavioural therapy, but there are other things such as ones based on Acceptance and Commitment Therapy and typically involves completing a number of modules or chapters over a specific timeframe. They may or may not have contact with someone as part of the intervention, so it might be with a clinician or with a trained coach. Again, there’s different semantics and words used here.
At the moment I’m not sure if there’s any freely available online programmes for children and young people in the U.K., but one that’s available in Australia is called the BRAVE-online programme. Again, that’s based on cognitive behavioural principles. It’s been evaluated in several studies, and I think it’s got a child component and a parent component as well. So they’re both doing the intervention together.
Interviewer: What about Serious Games? How does it help?
Dr. Aislinn Bergin: So Serious Games are actual games that have been developed with a purpose other than fun. So they’re applied in quite a lot of different areas of behaviour change and other types of health care. An example would be Champions of the Shengha which is a game that was developed alongside children and young people, and it helps them to manage their frustration through a heart rate variability sensor. And essentially that heart rate variability sensor allows them to play this game, so the game actually responds to the child’s emotional state and it’s done through essentially a device that you can buy online…
Dr. Bethan Davies: It just clips on your ear.
Dr. Aislinn Bergin: It clips on your ear, yes.
Interviewer: You mentioned earlier the use of virtual reality. Can you say a little bit more about how that’s being used to help children and young people?
Dr. Aislinn Bergin: Yes,so the project that I’m working on is actually a virtual reality therapy for people with psychosis. Now it’s aimed more at adults, but potentially, with early intervention services you have quite a few young people, and when we’ve been doing the work leading up to the development and design a lot of people have been involved from lots of different age groups. The thing about virtual reality is that it comes in a lot of different forms, and it’s becoming a lot more mainstream these days. For instance what we’re using is a headset based virtual reality called the Oculus or another one called VIVE and these are available to people. You can buy these in shops. I think the Oculus Go was the most popular present at Christmas.
And yes, these immersive ways of delivering things like therapy can put people into situations that they are fearful of, but when it’s virtual they’re much more likely to try them out. So people are less afraid to try things out I think in the virtual world and certainly this is the findings that we’re beginning to see in the work that we’re doing.
Dr. Bethan Davies: Yes, so another form of virtual reality is through virtual world software that you can access via a laptop or a computer. So one example that you might have heard of is Second Life. This was quite popular several years ago; I remember it. It’s still available now. So an example from an industry partner that we’ve worked with is called ProReal, which is again accessed via a computer or a laptop, in which the user can create a virtual world, populate it with avatars representing themselves, representing other people in their life or a specific situation that they want to look at, and it’s also got the option where you can use props to symbolise things happening in their lives. So it’s things like you can populate it with walls to represent barriers, bombs to represent some big life event that’s happening, a treasure chest about secrets, things like that.
So ProReal has been tested out in school counselling services and it’s shown some really decent findings there and we’ve done some work collaborating with ProReal and the University of Bath about whether it can be used in Child and Adolescent Mental Health Services. So this was a very small study we did. So you can use it in a face-to-face session with a clinician, you’d have in your traditional face-to-face therapy with them, but then you also have a laptop where you can create your world, populate it with the people that are important to you. Basically in the research we’ve done it allowed the young person to set up and explain their world and what they were feeling to a clinician. It allowed them to get their thoughts and feelings out of their heads, so it’s quite abstract, into an external thing, which can then be discussed with a clinician.
ProReal allowed them to populate this virtual world with avatars representing themselves and other people, attach thought and meaning to these different avatars, and also to step in and think about what other avatars representing other people think about the same situation but from different perspectives. So in that sort of case it has been used in adjunct as part of therapy not to replace it, to help with communication between the two.
Interviewer: What about online counselling? Is that something that’s used with children and young people?
Dr. Bethan Davies: Online counselling is one way of improving access and availability by bridging the distance between therapists and clients. So again like all other digital interventions, it can come in very different formats. It can be via Skype, so you actually get to see face-to-face; it’s just not in the same room. It can be via email, so there’s a bit of a delay in response, or it can be through an instant messaging type platform, so very similar things like Facebook Messenger, things like that. So as mentioned just now young people might struggle in talking face-to-face with a clinician and again there’s issues around access and availability. Thinking again about… A lot of schools have counsellors now but again, it’s that physical presence. You might be seen going down to their office or whatever, or it might be somehow made aware that you’re going to visit a school counsellor, and again some obviously won’t like that. So online counselling can provide some anonymity and control in talking about a sensitive topic, mental health. So likewise as well, as young people are quite experienced and familiar in using instant messaging it makes sense to also provide therapeutic help in this manner. The nature of online counselling means it can be quite different from the traditional face-to-face model.
One example that I know of is called Kooth, so that’s an example of an online counselling service that does actually have some good widespread on implementation in certain parts of the U.K. So Kooth provides young people with access to online counsellors. It’s that instant messaging type format, but it’s also home to an online peer community, so young people can share their experiences and seek support from peers who are facing similar problems. So I think it’s more than a thousand children and young people across the UK log into Kooth every day and the counsellors are really quite experienced in understanding youth mental health, have had that training in an online medium; it’s not face-to-face. So Kooth is provided by Zen Zone who we are I think just about to start some work with here at MindTech and as part of that they undertake quite rigorous evaluation and data insight to check that Kooth is reaching young people and helping their mental health.
Interviewer: Right. What other the mediums are currently being used in terms of digital technologies and mental health for young people?
Dr. Aislinn Bergin: Yes, we haven’t really discussed many smartphone apps and I do think there are some really interesting applications available across different platforms and ones that are evidence-based as well. The issue sometimes with these newer technologies is that the research finds it difficult to branch over into real world use; once the randomised controlled trials are finished there’s a need for an in-depth analysis of how people use them, how they engage with those. A lot of interventions are designed to be used consistently and regularly across say six weeks, but that’s not really how we use apps so…
Dr. Bethan Davies: And it would be the same with a self-help book.
Dr. Aislinn Bergin: Yes.
Dr. Bethan Davies: They have the self-help books on prescription which suggests that like a medication it needs a certain dosage every day or however. Good example that we’ve slightly been involved with on the outside trying to figure out how to evaluate it is for an app called BlueIce, so it’s an app for trying to help young people who self-harm. It was developed by Paul Stallard and colleagues, and they co-developed it with young people who’ve had lived experience of self-harm. Young people were attending Child and Adolescent Mental Health Services, so they were in contact with treatments. So BlueIce is intended to be used by young people between face-to-face appointments at CAMHS and it has a number of functions, including a mood diary and sets of activities that are designed to help reduce their distress and urge to self-harm.
So BlueIce is taking a bit more of a formal evaluation approach. It’s undergone initial evaluation and so through a range of qualitative and quantitative data collection and analysis it’s shown that it can be helpful in changing self-harm behaviours as well as other well-being outcomes, such as depression and anxiety. The qualitative research that was done with the young people who’d used it found that it was very usable and considered quite acceptable, but importantly it also explored for who it wasn’t helpful for. Some young people reported that they weren’t at a stage where they wanted to stop self-harming and so they didn’t see the rationale in seeing how an app could help with. Likewise I think they spoke about sometimes with self-harm there are episodes where the urge is so strong, out of control as it were, that an app that wouldn’t help them in that moment. I think BlueIce is a really good example of how a mixture of quantitative and qualitative methods and data gathering is needed to best understand how digital interventions can be used, how they work, any issues. You might have the best of intentions, but actually when you test out a digital intervention, it doesn’t work and you also help to figure out if it can also help with any other outcomes as well as what you’re hoping it changes.
Interviewer: On the topic of evaluation Bethan you’ve taken a lead role as a therapist in the ORBIT study which you mentioned before. ORBIT stands for Online Remote Behavioural Intervention for Tics. Can you say something about that work and perhaps share some of the interim findings?
Dr. Bethan Davies: The ORBIT study is testing out two online interventions for children and young people. They have to be between nine and 17 years and they have a suspected or confirmed diagnosis of Tourette’s Syndrome or Chronic Tic Disorder. So this online intervention was originally developed and evaluated at the Karolinska Institute in Stockholm and it showed promising results. Instead of reinventing something completely new we thought let’s take something that’s worked in another country and adapt it here. So we’re working in collaboration with Great Ormond Street and we were awarded funding via the NIHR HTA programme to conduct a randomised controlled trial of the intervention in England.
Going on to tics, as you’ll know from the ACAMH topic guide on Tourette’s Syndrome, tics are involuntary purposeless movements and sounds. There’s no cure for Tourette’s Syndrome and chronic tics but they can be managed through medication and behavioural therapy. And so in behavioural therapy we use the premonitory urge that often happens before a tic as a way in which we can gain some control over the tics happening. The main rationale for this study, for the ORBIT study, was that many kids, many families who are affected by Tourette’s Syndrome do say they want access to behavioural therapy, but there’s a lack of access and availability to therapists in the U.K. so meaning many can’t receive it, so we thought with ORBIT if it’s online it can help provide again access to an evidence-based intervention. So in the ORBIT study we’re testing out two different online interventions. Both are similar in terms of format. They both have ten chapters completed over ten weeks. Both interventions are therapist supported. So I’m one of the therapists involved in this and I respond to messages that participants send me or worksheets they complete. I’m also there to help with any issues that they’re having with learning the behavioural therapy strategies and the missions that are in the other intervention.
So again, it’s two different interventions. One intervention is based on a therapy called Exposure and Response Prevention. So that’s one of the types of behavioural therapies that’s available and it involves teaching the young person to sit with that premonitory urge and the feeling of wanting to tic for longer and longer periods of time to help get them used to the feeling. Their parents help them in learning these new skills. And then the other intervention that we’re comparing it to is a psycho-education package designed to help increase knowledge about managing tics and that involves completing missions relating to increasing their knowledge or spreading their knowledge because a lot of the time being educated about something can help people with cope with it, or their confidence in managing it, their self-esteem, things like that. So again in both online interventions the young person and their child have separate logins, and so they do see different aspects of the intervention, but they complement each other.
In terms of an update, we’re recruiting 220 young people and their families into the ORBIT study and so far we have over 150 taking part. We’re hoping to finish recruitment in September 2019 and what, we’re not analysing any data until the study has ended so I can’t provide any interim finding, but what I can say is that we’ve had some really wonderful feedback that it is making a difference I’d say.
Interviewer: What does the research show in terms of what works best? And I know it’s going to be difficult to answer because it’s going to depend a bit on how they’ve been evaluated, but what so far is being shown to be effective amongst these digital interventions?
Dr. Bethan Davies: So something to think about here is what outcomes we’d want to be looking at. Again all digital interventions do have a bit of variation about what it is they want to change exactly. So for children and young people much of the evidence for digital interventions focuses on depression, anxiety, and they’re the most common, so a couple of years ago at MindTech we conducted and published a systematic review of what’s been done so far in terms of randomised controlled trials evaluating digital intervention for children and young people’s mental health. We also looked at previous reviews because at one point there was a flurry of all similar reviews coming out at once and when that happens you can’t tell what exactly the evidence is.
So for children and young people much of the evidence is focused on computerised cognitive behavioural therapy for depression and anxiety. It’s usually in comparison to something, a non-therapeutic intervention or receiving nothing at all. So one review that we looked at within our review did say that interventions were effective for anxiety in adolescents and young adults, but not in children, and then it’s mixed about whether these interventions are equivalent with face-to-face CBT, whether they show equivalency or not.
And there’s someone else to think about in these digital interventions is parental involvement. For children parents are the gatekeepers to health care. They’re also a pretty big model in their child’s life, and how they understand their mental health, how they look after their mental health, their access to health care, things like that. So there has been a lot of discussion about parents being involved in digital interventions for their child’s mental health is, and whether a parent needs to be involved in an intervention to be effective. So Daniel Eva is a German academic who has done a lot of research into digital interventions. They did a meta-analysis of computerised CBT for young people and did find that having a parent involved as part of the intervention for their child wasn’t associated with effect sizes, suggesting it may not be needed. But it’s a real mixed picture. It’s difficult to see exactly what, whether, how and when parents are involved because parents might particularly be needed for younger children to support their engagement in the intervention…
Dr. Aislinn Bergin: With specific conditions or specific technologies. There was that JAMA ten unanswered questions related to mental health and that really brought up that issue of we’re not really sure how people interact differently with different technologies, different conditions, and I guess parent involvement will be part of understanding that process.
Interviewer: Young people are often described as digital natives. So do they embrace these types of digital interventions more readily than adults?
Dr. Bethan Davies: I think one thing to think about is that as adults we think that because young people are using digital technologies all the time, they’re so integrated into daily life, more so for younger people, that we also think this means they want health care delivered in this medium too. I don’t think that’s always the case. They can be thinking about health care. They might think that their phone is for one specific thing; it’s for connecting with friends; it’s not for my health care; it’s not anything to do with that. So they might want to separate them out. Really important that work’s done with young people to explore their attitudes about digital mental health and about seeking out help. So there was one Australian survey with teenagers that found this group would prefer to seek face-to-face help over an online service, but actually overall the highest… they’d actually prefer not to seek help at all. So seeking face-to-face was a second option.
For likewise as well, there is quite a digital divide still, so while generally access and ownership of digital products, such as smartphones and laptops has increased, something to think about here is their longevity and sustainability. An example here is smartphones. Everyone’s familiar with apps and their mobile operating system will come up every time saying you need to update this. It might be that person doesn’t have the memory on their phone to install lots of apps, or to update them to the most recent versions. Likewise an app may no longer work if a person has an older software update on their phone and can’t update it. So suddenly an app or some digital service may no longer be available to users unless they have the most recent software update or the most modern smartphone.
Dr. Aislinn Bergin: Technology evolves so quickly and likewise our knowledge needs to increase at that extent and it doesn’t necessarily. We hear so much in the media about digital natives and these kind ofmental health apps, but there is a recent big project called The Digital Health Generation from University of Bath, Salford and Canberra, and they’ve found that actually defining young people as digital natives ignored the fact that some don’t have that familiarity with computers. They might have more familiarity for smartphones. They might not have access to the internet. They might not know how to use digital technologies to the best advantage. I think it’s more about involving people and asking them what they’re looking for. So we try and work with young people, we try and work with schools, and we try and work with families to look at what type of intervention, even if it’s not digitally delivered, might be best fit into their lives, and I think that’s what research needs to look to do.
Interviewer: It’s a rapidly developing area isn’t it? Digital technology and the use of artificial intelligence and so on? What’s new in the pipeline?
Dr. Aislinn Bergin: I think there’s some really interesting ways that people are starting to use data. So, John Torous and his team at Harvard are looking at what they call digital phenotyping and that’s a way of collecting data from how we use digital technologies that can help then start seeing patterns in behaviour, so they’re actually looking at applying that for relapse monitoring in schizophrenia. But I mean what excites me the most is things like AI and smart assistants like Siri or Alexa and how we can start making those work for us better. So it’s about individualisation; it’s about personalisation; it’s about interventions that adapt to what you need rather than adapting to a generic concept of what having that lived experience might mean. So I think that’s the way that digital mental health is evolving now and the interventions that we’re developing for that.
Interviewer: Bethan, you’ve written the ACAMH Topic Guide on digital interventions. You’ve probably covered quite a lot of what’s in that during this podcast, but can you give a quick summary of some of the areas that are covered in the topic guide?
Dr. Bethan Davies: Yes. So basically in that topic it’s really hard to synthesise everything that’s been done and every research trial that’s been done. So I tried not to do that because it’s so difficult to understand this field so I’ve just tried to give an overview of describing some different types of digital interventions as we’ve discussed here and a brief overview of what some of the current research says, but it gives it an idea of what to look out for and some caveats to think about basically.
Interviewer: Finally, Bethan and Aislinn, is there anything you’d like to say that I haven’t asked, perhaps as a takeaway message for those listening to this podcast?
Dr. Bethan Davies: I think one thing we didn’t talk about too much is that the best way of finding out if these work is working with young people. A lot of things I’ve seen are, “We’ve developed this intervention. We didn’t involve any young people or people with lived experience” and then shock horror it doesn’t work.
Dr. Aislinn Bergin: Or it looks like something they don’t want to use or…
Dr. Bethan Davies: Looks rubbish. They spend hundreds of pounds or whatever building this thing, thinking it’s going to be amazing, and then young people go, “don’t like the colour”. So the best… you’ve got to work with young people in designing digital interventions.
Dr. Aislinn Bergin: And I think that’s also in how you apply that as well. So I think one of the best ways of doing that is to speak to young people about what they’re using, how they’re using it, and consider how that can be applied into practice. I spoke a little bit about the issues of trying to understand use in the real world. The reality is that a lot of young people have these apps on their phones. They are using them and trying to understand how best you can tap into that because it is an amazing resource to have. I think it’s really key.
Interviewer: Bethan and Aislinn, thank you ever so much. You can find Dr. Bethann Davies’s topic guide on digital interventions on the ACAMH website www.acamh.org and Twitter at ACAMH. ACAMH is spelled A-C-A-M-H.
Outro: This podcast was brought to you by the Association for Child and Adolescent Mental Health, ACAMH for short.