Evidencing a broader, more personalised approach to mental health support
Change is how we understand the world; how we gauge progress. It’s how we feel compared to yesterday. How the economy is faring year on year. How the world is changing, and whether we feel that change is tracking in the right direction. But as important as it is, evaluating change is rarely easy.
For mental health professionals who understand that change is rarely linear or straightforward, it can seem like an impossible task.
Anyone who has assessed and monitored progress in mental health care knows that change and improvement are dependent on perspective, expectation and a million other shifting determinants, some of which may be outside our control.
To compound this issue, we are still inclined to measure progress in mental health using a frame developed for assessing physical health outcomes. These are singular and narrowly defined in nature. As a result, when used by mental health practitioners, we see brief, short-term insights around reduction of distress. The big picture is out of reach and therefore impossible to evaluate.
A bit like reviewing a restaurant after only half a spoonful of dessert.
As a backdrop to this, the wider culture around assessment and diagnosis in the world of mental health is, in places, reductive, narrow and prescriptive; people are defined by symptoms and problems. This approach does not reflect human lives with all the complexities therein.
Is this partial view of progress all that is possible, given the complexities of mental health? Or is it a reflection of the narrow focus of mental health services themselves?
Closer to the truth is that it is time for a wholesale review of the measures we use to evaluate mental health support. This is especially true for newer services, such as those delivered digitally, which are expanding the type and mode of support available, reflecting what children and young people want and broadening the scope of support.
As Dr Terry Hanley, senior lecturer at the University of Manchester, recently wrote: “There is a growing need to define what mental health support looks like today so that we have an accurate understanding of the potential of new approaches and new modes of delivery. It also follows that we need to evolve our understanding of outcome measures so that we avoid using old systems to measure newer, broader services.”
A recent paper published by The King’s Fund also addresses this point. It looks back on how physical health systems used to measure performance by the number of procedures carried out. It identifies a shift in approach at the point when providers were rewarded for how well they cared for patients, based on clear outcome measures.
“In short,” writes the author, “health systems needed to refocus from activity to value, with value defined as health outcomes divided by the cost of delivering them.”
The same need for a shift in focus, from volume to value, is evident in mental health services. And not before time. With stigma falling and demand rising, we have an urgent challenge to provide care at scale while meeting individual need.
The Government’s Improving Access to Psychological Treatments (IAPT) initiative, largely based on offering CBT oriented therapy, although set up to provide greater support, has been criticised for taking a volume-based approach to addressing demand. Drop-out rates are high.
Around a quarter of people who are referred to IAPT do not take their referral any further, declining treatment, while almost a third drop out during the course. From those who complete their course, half achieve recovery. This equates to less than 20% of the total referred.
This shows that we need to broaden out what is offered to those seeking help and put choice at the heart of meeting need.
It’s not that there isn’t therapeutic choice out there. There are a plethora of approaches, from CBT and art or drama therapy, to humanistic therapies or psychodynamic therapy – and a lot more besides. Taking a pluralist approach, adapting therapy to the individual, is an important way to extend choice and personalise an individual’s therapeutic journey.
According to Professor Miranda Wolpert MBE, understanding the breadth of options available in a framework of choice is critical: “I think we need to question and think about the choices that are available and to think much wider than we have to date. Not just choices within therapy but choices beyond therapy and for people’s lives more generally. I think the evidence base is rather narrowly focused on some sorts of interventions and forms of help and has had less information on other things that people can do for themselves that don’t involve a professional – or from a different range of professionals and others – that may be of help to individuals.”
A self-care campaign launched this Summer by the Anna Freud National Centre for Children and Families acknowledged that specialist mental health services were unlikely ever to be able to tackle the mental health disorders without community and self-care.
It examined this under-researched area further, asking young people to identify ‘what works for them’. The aim of the study was to “understand more about the huge range of activities and approaches young people may be using without the involvement of a mental health professional, either alongside or instead of seeking specialist help.”
Findings showed that young people had used a wide variety of self-care strategies, including listening to music, reading or watching television. While these approaches could never replace the work of specialists, it is nonetheless interesting to understand self-initiated measures used to manage mental health, while demonstrating that individuals do not always need a professional or medical intervention to feel better.
More recently, NHS England, Public Health England and other charities have launched ‘Every Mind Matters’, a new online platform supporting people in taking care of their mental health. The site asks individuals to answer quiz questions before offering a personalised action plan.
This includes a set of self-care actions aimed at addressing mental health issues such as stress or depression. Backed by celebrities and a major advertising push, the site crashed at launch due to sheer volume of online traffic, perhaps indicating a level of demand or curiosity from individuals who are keen to learn more about managing mental health.
The need for broader yet tailored care is at the heart of the NHS Long Term Plan, which focuses on a personalised approach across the health and care system. The plan looks beyond notions of ‘mental health support’ being delivered by a professional, acknowledging that there are other ways for individuals to feel better or be offered non-medical support.
Part of this commitment to personalisation of care must surely also mean personalisation of ‘recovery’ – or outcome measures. There is some debate about whether such measurement should be wholly personalised (‘idiographic’), based on comparable standard measures (‘nomothetic’) or a combination of both. What’s clear is that we must get to grips with individual recovery.
According to Jenna Jacob, research lead at the Child Outcomes Research Consortium, “Research suggests that recovery is individual to that person and may be aligned to aspects such as quality of life and functioning, rather than symptoms which we traditionally have measured using outcome tools. I think the only way to really know what recovery means and what that looks like is to ask people.”
The Kings Fund paper, cited earlier, tackled related issues of perspective in relation to outcomes and what constitutes ‘recovery’. The difference in a medical professional approach compared with that of a service user demonstrates a deep divide.
Some service users, it said, are “suspicious of the value and motives of health services which, as they see it, treat narrow clinical aspects of mental illness, such as controlling the medical symptoms of a disorder, in ways that damage people’s sense of empowerment and self-esteem.”
This deficit-driven approach to diagnosis paints a picture of support and treatment being ‘done unto’ people, excluding them from any decision-making. Instead, assumptions are made about what, for them, would be a positive outcome to plan for.
In developing Kooth, now the UK’s largest digital mental health and wellbeing support service, our founder Elaine Bousfield deliberately set out to do the opposite. The arrival of Kooth challenged traditional assumptions around mental health support. As well as making support available online for children and young people, it was crucial that the service was based on humanist principles and reflected the people using it.
What we have 15 years later is a vibrant and complex service which has grown quickly into a large and thriving community.
It does not diagnose or pathologise mental health issues, knowing that mental health is often defined by a myriad of outside determinants and that human minds are messy and complex and broad. It values practice-based evidence and experience, acknowledging that support is nuanced. Help and support is predicated on the belief that everyone has assets to build on.
As one young person said recently: “Coming here helps cos I know I’m not alone. It’s been so hard for the last few months but I am starting to see a little hope”
This approach and the direction the service has taken means we have created something both broad and personal. Something that doesn’t fit in a neat box. It doesn’t adhere to medical notions of ‘recovery’ still based in diagnosis and pathology. So there is no way we can simply define what Kooth is in the existing medical framework.
This notwithstanding, we have sought to open up the service and define the ways in which it supports positive change. We knew this research would be groundbreaking; Kooth is huge now, with more than 2,200 children and young people logging in every day and a myriad of pathways to support. 95% would recommend it to a friend.
We also knew this exercise was necessary. Without it we can’t evidence our reasons for proposing a new set of outcome measures which we believe should be incorporated in the NHS’s Mental Health Service Data Set.
And while we see that evidence-based practice continues to be prized above all else, in order to address value over volume and need in all its forms, it’s clear there should be greater room for practice-based evidence and other innovative approaches as part of a rich and expansive mix of available support.
This led the team here, with partners at the University of Manchester, to look to social science for a framework – we chose the Theory of Change. This approach enabled us to look at young people in the round, pulling out data reflecting their direct experience rather than prescribing measures from on high.
Our aim was to identify all the characteristics of the service that lead to better mental health and wellbeing. These characteristics or ‘mechanisms of change’ will be used to inform a new set of outcome measures we will develop.
As Sir Norman Lamb, former MP and active mental health campaigner, commented: “This report describes the therapeutic journey of children and young people on Kooth. It outlines the different routes they take and defines the most helpful mechanism for change, which may lead to better outcomes and, ultimately, happier lives. It isn’t a study you’ll find anywhere else. The deep and rich data that XenZone has accumulated over the last 15 years is unique.”
It is our intention to take these new outcome measures to the NHS with a recommendation that they are used to evidence the impact of digital mental health support services in England. The new measures will challenge the current system for collecting data to incorporate evidence and outcomes from newer online services.
To uncover the mechanisms, a qualitative action research design was used. Kooth practitioners worked collaboratively with the University of Manchester research team to develop a detailed understanding of how young people were engaging with different elements of the service, examining what might be viewed as successful outcomes. The team used anonymous therapy transcripts and explored this systematically, using thematic analysis and generating maps to show the different pathways through Kooth.
This work informed the development of an overarching Theory of Change. The mechanisms for change we discovered were wide-ranging, with some findings underlining the experience of our counsellors and reiterating consistent feedback sent in by children and young people.
Some findings surprised us. For instance, we found that children and young people experienced therapeutic alliance not only with their online counsellors but with Kooth as a whole. This is an incredibly powerful mechanism of change. Children and young people choose to use the service and choose to return. Once they feel held in the service, then the chance for preventative or early intervention – and positive change – increases.
And because Kooth has been shaped by and for young people, they see themselves reflected back in the service, which in turn increases their sense of ownership and alliance.
We also found that the physical absence of a therapist allows children and young people to express themselves differently. They are able to focus exclusively on their situation and their feelings without fear of judgement or dismissal and without having to take account of a therapist and a room. This is linked to another finding which inspired the title of this report – the existence of a ‘Positive Virtual Ecosystem’. By this we mean Kooth’s safe and supportive therapeutic environment, which gives children and young people licence to explore themselves with no chance of a negative backlash common to other social media platforms.
Researchers also observed young people benefitting from the choice available within the service, navigating their way to their preferred mode of support on any given day, week, month or year. The many different therapeutic ‘touch-points’ available was found to be central to the effectiveness of the community – or Positive Virtual Ecosystem – with children and young people able to use digital tools such as mood trackers, access peer support through online forums, read and contribute articles or contact therapists as and when they wished.
We found that the anonymity of the service makes many young people feel it is safe to open up and therefore get to the issues they wish to address more quickly.
Another mechanism for change was the site’s accessibility. Young people can use it when they need to, going back for more support as required. The young person therefore, is in control of the pace of support, which shifts the power dynamic away from the therapist.
There are many more aspects of change described in the report. What we have with this bank of evidence is a springboard for developing a new set of outcome measures in 2020, which are fit for purpose for us and others with similarly dynamic therapeutic models of support who are using technology to bring support to people who need it.
As with all this work, the measures will come from our service users rather than being prescribed by practitioners.
Measures that show the impact of peer support on a young person who needs a sense of community and a safe space online. Measures that show what happens in a one-off chat session at 9pm when a young person is desperate to be heard. Measures that show the outcomes for a young person working long-term in our service being helped into wider services when they felt they could never have spoken out face-to-face.
It’s only by acknowledging the spectrum of support needed and the importance of choice that we can offer a service like Kooth. The vital next step is to match this to outcome measures which will not only capture the breadth of impact, but allow us to build a truly ‘ground-up’ evidence base for online services.
Research and Evaluation Director, XenZone
To access the report, the executive summary and expert video interviews click here