It is increasingly important to CORC that young people are not just the 'researched upon', when thinking about youth mental health, but that they are involved in the work and research that we do at every level and stage of the organisation. We want to bring together the people who provide mental health support, the people who use it, and the people who research it, so that together we can move mental health research forward.
We have looked at some of the big questions that young people ask us about outcome measurement:
Watch our YouTube Live Chat Series for young people with an interest in mental health research and mental health data. With different guests, we discuss what outcome measures are, what some of the research is around youth mental health, what a young person CENTRED measure would look like and how we could make them more directly useful for young people, alongside services and finally what our next steps should be as a niche organisation wanting to incorporate young people into our work more.
Want to be a guest or expert on our next YouTube Live Chat? Contact us at firstname.lastname@example.org. We always look for people with different experiences and opinions.
24th October 2019: Do mental health services work?
- 21:57 - Topic of this Live Chat: Do mental health services work?
- 22:30 - What does the research tell us about the effectiveness of mental health services?
- 28:12 - Does it surprise you that data suggests that approximately 50% CYP can be said to reliably improve under mental health services?
- 29:05 - What do questionnaires in mental health services really tell us and how can we use them better?
- 33:01 - How accurate are the results from questionnaires, and what is the impact if service users don’t understand how they will be used?
- 40:58 - What is the advantage of measuring the responses at a group level as opposed to looking at each person individually?
- 52:12 - What are other alternatives to mental health services?
- 12:00 - Suggestion for next Live Chat: How is mental health different to wellbeing?
- 13:55 - Suggestion for next Live Chat: Is it helpful for individual young people who are starting services to know how other young people found them?
- 16:00 - Suggestion for next Live Chat: When do you go to a mental health service and when would you choose to do something else?
24th April 2019: What would young people measure?
- 0:18:47 - What about Young People Centred Measures to be tracked and monitored on a user-friendly app? Does it work for service users and service providers? Is technology the answer?
- 0:16:55 - Mental Health Tracking App - Dailio used my Luís: https://daylio.webflow.io/
- 0:29:11 - Learn more about CORC's Regional Seminar in 2019, involving young people Regional Seminar summary - here.
- 0:33:43 - What would you tell your past self? Looking back and reflect? Does it work for you?
- 0:40:17 - What is a Goal Based Outcome Measure? Learn more about GBOs here.
- 0:06:32 & 0:43:35 - Learn more about the NHSE Survey findings that our Research Associate Luís talked about here. And the Revised Childrens Anxiety and Depression Scale here.
- 0:55:21 - CORC Forum 2019 here.
- 1:00:15 - Miranda Wolpert starting a new role and her thoughts about CORC. Find out more here.
- 1:03:18 - Could we visualise outcome measures more? For example via gifs, memes or emojis?
Having an honest conversation about mental health treatment
- 12:25 - Are we funding the right things to support better mental health?
- 13:04 - Should non-medical approaches be more researched?
- 16:43 - Would it be useful to know the success rate of therapies?
- 21:21 - Can we measure outcomes in different ways, other than using forms?
- 25:17 - Does recovery mean to being able to do the “normal” routine?
- 27:47 - Should we be thinking of recovery as a way of 'repairing' mental health?
- 41:09 - How do we create balance between involving, but not overwhelming young people with technical details around treatment outcomes?
Outcome measures are ways for measuring or recording the change of your mental health and wellbeing and are used to try and understand the impact of the treatment or intervention that you are receiving. They are usually in the form of a questionnaire and can be filled in by either you, your parents or carers, practitioners or your teachers.
Feedback measures on the other hand are usually questionnaires which record your experience of the service or session you are attending.
The short animation below explains what an outcome measure is and how it might be used in children and young people’s mental health services.
In a nutshell, outcome measures:
Help you and your therapist to better understand your situation.
Allow you to share your experience during treatment.
Let someone know how much the support you are receiving is helping.
Enable changes to your support and treatment.
Help improve services for others.
What would a good outcome look like for you in your treatment or therapy?
This is a tricky question as there may be many different people involved in your care; you, the clinician, your parents, your teacher who all have different ideas about what a ‘good outcome’ might look like. In the blog below Karolin Krause, PHD writes about a workshop which explores this question and the different areas of discussion it opens up for us.
The blog was also depicted in the illustration below:
In treatment outcomes we talk a lot about getting ‘better’ but what does that mean? Is your treatment helping? Are your symptoms getting better? Are you and your therapists making progress towards your goals? This infographic report looks at different ideas about what ‘better’ may mean in treatment outcomes and presents research data exploring how much ‘better’ young people are when they have finished getting help from mental health services.
Two of the Anna Freud National Centre for Children & Families Young Champions, Juliette and Jummy, tell us about their experience of what makes a good outcome and how they would measure it.
The overarching aim of questionnaires is really to hear from young people directly about how you’re doing and what support you find is working or not working for you. We don’t yet have a thermometer we can give people that tells us how depressed you are for example.
Questionnaires are our best thermometer at the moment but are certainly far from perfect!
One thing we hear time and again is that a questionnaire can only be as useful as the way in which it is used – if you don’t know why you’re completing it, it’s not going to be worthwhile.
For practitioners and service providers to be able to explain this however, they first need to know why the data are being collected and how they’re going to be used, and we know that training and access to this information isn’t always readily available to services.
The development of mental health outcome measures has historically been practitioner-led. We share thinking from those with lived experience, and from ongoing co-production work about improvements to outcome measurement. A big thanks to Beth Ingram and Mark Rawlings for sharing their thoughts.
Why bother with outcome and feedback measurement questionnaires?
Young people often tell us that outcome and feedback measurement can open up conversations as it may be easier to say something on a questionnaire than it is in real life as it were. We also hear that being able to look back and compare how you’re doing now to how you were doing 6 months ago is a helpful to identify distance travel, especially as improvement may seem marginal, which can in and of itself be disheartening.
For practitioners, we see outcome and feedback measurement as providing another piece of information that can help to build a picture of what’s going on for a young person they’re working with. And for services, having a way of looking at how the young people you’re supporting, as a whole are doing, is particularly helpful in identifying areas that are going well and ones that may need more attention. Of course, being able to back up arguments for funding with data is a really important reason for collecting data, especially in times when funding is limited.
How do we make sure the mental health questionnaires don’t feel like a ‘tick box exercise’?
Co-designing questionnaires with young people is probably the best way for this not to feel like a tick box exercise! We think giving young people a choice between types of measures, which means practitioners and services need the training and flexibility to do this, is also important.
However, we also have to recognise and be explicit that sometimes it will feel like a tick box exercise – some questions may not feel like a good fit for you. But, if we explain why this information is useful (so we can look at similarities and differences in experiences across different young people) then at least we are being transparent about this.
Bringing together different types of measures may go some way to help with this. So having a more general measure of depression and anxiety that is complemented with a more tailored and individual measure such as the Goal Based Outcome Tool.
And finally, having a space to discuss this and talk about what you think about the questionnaire is really important, so even if a service has to complete a certain measure, if you can share your views with the person asking you to complete it, this is one common courtesy that again, we can probably be much better at doing.
Practitioners and service providers are absolutely committed to providing the best possible support to young people that is informed by the latest research findings. We know that services are under increasing strain due to high levels of need, limited funding, and increasing levels of severity in certain groups. Like we’ve heard from young people today, we hear from practitioners and service providers that language, overall accessibility, and knowing how to access research are major barriers, in addition to time and capacity constraints.
At CORC we are pretty good at disseminating accessible summaries, through blogs and videos for example, in a timely manner – but we could certainly do more. We think it's really important not to see this as something that you should do at the end of a project but as something that needs to be central throughout – right from identifying what the project is and the questions you’re looking to answer, to make sure the research is going to be practically meaningful for practitioners, services and young people.
This is something we’re not bad at in CORC, and the research we’ve done looking at ethnic differences in access to services for example came from questions identified from member services.
We think it’s really important to make sure the right questions are being asked – both at a wider project level and at a specific questionnaire level.
One area we’re particularly looking at in relation to the former at the moment (which is slight tangent) but we’re starting a project to ask young people what they want to know about the role of screen time in young people’s mental health. So we’re really trying to ensure we’re asking questions that can be addressed in future research that are relevant to young people, so we can make sure young people will be invested in what we’re doing and we can be in good position to get honest feedback.
In terms of honest feedback from questionnaires, it’s really about transparency – making sure people know why they’re being asked these questions, who will see their responses, and what will be done with the data. Even if the feedback won’t be used in sessions and will only be used for service improvement, we find that young people are really happy to give honest feedback to try and help the service for other young people like them in the future, but this needs to be transparent.
How people are asked to give feedback, and having a trusting relationship with the person asking, are absolutely crucial. They need to be the right questions, asked in the right way, by the right person, at the right time.
The main reason is to try and answer the tricky question of whether the help being provided is working for the groups of young people. You can then look at more specific questions – is a service or intervention more helpful for certain groups than for others, are there some groups we think we should be seeing but don’t seem to be – but it’s harder to answer these and the overarching question in general in terms of both absolute numbers but also in terms of 'representativeness', if you only have data on 10% of all the people coming to your service, for example.
In the long run, the more representative data we have on groups of young people accessing support, the more credibility we have for the findings and conclusions. This means that academic publications based on data from young people accessing services can have more sway on other researchers and policy-makers.
Yes, they could without question be more user friendly. There are certain measures that are more user friendly than others, such as the Child Outcomes Rating Scale. We can absolutely do more with new technology to drive a step change in how measures are collected.
One area we are particularly interested in at the moment, and that we’re trying to get funding for, is to develop an interactive, animation based measure, where a young person selects an avatar similar to them. The animation then goes through different scenarios for the avatar (such as finding it difficult to get out of bed in the morning) and the young person then rates how similar or not that scenario is to them. Their response would then determine the next scenario (such as finding it hard to get out of bed because it’s hard to sleep because of worrying about x, y or z).
How does online mental health support compare to face to face support?
This is a really important and big question to answer.
NICE (the National Institute for Health and Care Excellence), who make guidelines about best practice treatments, recommends digital cognitive behaviour therapy be offered for mild depression for example.
There are also daily mood trackers, like Daylio - watch here.
What we hear from young people is that they really want choice and information – what are the strengths and limitations of one type of treatment vs. another. So we think for some, being able to access support at a time and place that suits you online will be really beneficial. And for others, especially if you feel you’re being palmed off by online support and don’t have a choice in the type of help you’re receiving, it’s not going to be as appealing.
After looking at how life is going for you, you might find some things you want to change. These are your therapy 'goals'. Goals should include what you think is important, what your parents/carers think is important and what needs to happen to keep you safe and well. Services are there to help you, so don't be afraid to ask questions and talk about what matters to you. It is important to be honest when talking.
These questions should help you to see if what you're doing is working. Mental health professionals will help you track your progress and goals, often with questionnaires.
- If you are sectioned, you have the right for your section to be reviewed regularly.
- Remember you have a right to complain if you think someone is doing something wrong.
- if you don't think things are getting better, you can talk about trying a new treatment.
- It is ok to change your goals.
However, you might not feel like you are making progress with your mental health professional and you might not know what to do when this happens. This is very common amongst young people. In the video below Roslyn Law, Consultant Clinical Psychologist at the Anna Freud National Centre for Children and Families (AFNCCF) explores these issues and different options which may be available to you at that time.
Humans have been doing things to support their own mental health for forever. And yet, because of imbalances within the academic community and the mental health profession this never gets talked about. In fact, there is barely any large scale research into what people can do to help themselves and which approaches work for whom.
The role of self- care for our wellbeing is explored by the McPin Foundation. The McPin foundation is an organisation which seeks to transform mental health research by putting the lived experience of people affected by mental health problems at the heart of research.
Below is also an infographic showing the journey of how the McPin Foundation got to the Top 10 most pressing, unanswered questions about children and young people’s mental health:
Our partners at EBPU mapped out our projects & plans against @McPinFoundation's young people's 10 Mental Health Research Priorities:
Below is also an infographic reviewing research literature on different self-care methods. Often this is an area under-researched and we are really interested in developing our knowledge base on different self-care approaches YOU may use:
Here is also a list of different self-care strategies you may want to explore to help your wellbeing:
I just wanted to say a big thank you for the opportunity to go today and speak as panel member at the CORC Regional Seminar in London. I found it really helpful both for personal development and for closure on time at CAMHS and the chance to speak up and be heard! Plus of course understanding more about how the data is considered and the opinions of professionals were very interesting.Maddi (Young Champion AFNCCF)
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Your voice is key in helping us understand, change and improve mental health support and services. We are always looking for people to help us by sharing their opinions, experiences and ideas - either through participating in our research and surveys, commenting on our resources or taking part in our events.
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On My Mind aims to empower young people to make informed choices about their mental health & wellbeing. These pages have been co-produced by young people to help other young people.