The NEON trials looked at how much of an impact recovery narratives can have on people’s mental health journeys, and what resources might be needed to make them widely available.
As the six-year study releases its findings, the programme coordinator shares what they found – and what needs to happen next.
When you’re struggling with your mental health, it’s not unusual to find that hearing the stories of people who’ve gone through similar things can help you feel better.
While the internet is great for providing access to lots of these stories, finding nuanced, authentic experiences that are relevant to your situation isn’t always easy – especially if you’re already feeling overwhelmed.
The Narrative Experiences Online (NEON) trials looked at ways to do this, alongside the benefit storytelling can have on mental health recovery, and has just released its findings.
The NEON trials
NEON was a six-year study led from the Institute of Mental Health at the University of Nottingham. It looked at whether reading, watching or listening to other people’s stories of recovery can improve quality of life for people with psychosis and other mental health conditions.
It also aimed to find out which elements of other people’s stories are most helpful.
Programme Coordinator Stefan Rennick Egglestone shared how the study team approached the task.
“The trials are not about understanding whether other people’s narratives help people – we know that,” says Stefan. “We know that from talking to enough people and I know it myself, that I’ve read narratives that have acted to improve my mental health.
“So it’s not about understanding whether narratives help people – it’s about quantifying the scale of the impact, and understanding the resources required to make that impact.”
We tried to look for a broad range of narratives that were diverse in terms of how they were presented - not just focusing on what you often see, which is very short, very simple, very positive narratives.
Existing vs new stories
NEON was split into two trials: one for people who’d experienced distress around their mental health in the month leading up to the trial, and the other for those who had also experienced psychosis of some form in the last five years.
The team had originally expected to ask people to share new stories for the collection, but quickly realized how many narratives were already published.
“It turns out the first narratives that we could find describing recovery from mental health problems was published in about 1955 in a book assembled by a British MP at the time,” says Stefan.
This meant the focus shifted to gaining consent from people to include narratives that were already published, rather than spending time collecting new ones.
The collection ended up being roughly 90% existing stories, which had already been published, and 10% created as part of the trials.
Diverse and underrepresented narratives
A key aim for the study team was ensuring the collection had a broad range of narratives, both in format – from paintings to stories to poems – and in content.
“We tried to look for a broad range of narratives that were diverse in terms of how they were presented – not just focusing on what you often see, which is very short, very simple, very positive narratives,” says Stefan.
“So we’ve included narratives from a website called The Schizophrenia Oral History Project, for example, which are quite long, complex and detailed about people’s experiences of schizophrenia – or what gets called ‘schizophrenia’.”
Another part of building the connection between reader and storyteller, and trying to create something that might help people, was the effort the team put into finding underrepresented narratives.
“We found it much harder to find recovery narratives from people who might identify as having a learning disability, for example.
“And when we realized those narratives were harder to find, we could then put our efforts into making sure that we did have some of those narratives in the collection, so it was perhaps more diverse than the narratives that you might naturalistically find in the outside world if you search for them.”
We felt that there could be something beneficial to people hearing a realistic, authentic description of mental health problems and recovery.
Authenticity is key to ‘helpful’ narratives
Surfacing more complex, nuanced narratives was another factor that became central to the project, says Stefan.
“We felt that there could be something beneficial to people hearing a realistic, authentic description of mental health problems and recovery.
“And certainly as we’ve talked to participants, people have often described to us that the more authentic narratives – which are often the longer, more complex ones – are the ones that can make an impact. But of course, I’m sure that varies in different ways with different people.”
Authenticity seems particularly important, says Stefan. A smaller study, which was also part of NEON, found that hearing narratives that described recoveries that were just a bit ahead of where the person was in their own process were the most impactful.
“It would need to be confirmed by a larger study,” he says, “but there was at least a hint there that people might most benefit from hearing people that they could most identify with.”
The team developed a web application to give access to the narratives they’d collected, which was designed to make it as easy as possible for people to the ones that might be most helpful for them.
“For some people, perhaps if they’re struggling with concentration, a shorter narrative might help, so we had that as an option.
“People could search for shorter or longer narratives, and narratives in a wide range of forms because, for example, some people are much happier with text, and other people are much happier with video.
“And we’ve also got narratives in forms that we didn’t expect, like graphic novels or even single images, where it might just be a single painting but it’s clear that someone is telling their narrative about mental health.”
Keeping people safe
As a health research study it was really important to the NEON team they didn’t compromise people’s safety, gathering stories in a way that made sure people weren’t being harmed either by telling or reading them.
“Even though we were including narratives describing recovery in the collection, almost by definition those narratives have to describe difficult periods that people have been through,” says Stefan.
“And we were quite aware that there were risks to control around how those difficult experiences were presented.
“So part of creating a collection was finding ways to keep people who might engage with the collection safe. And actually that’s perhaps one thing that differentiates ourselves from things that you might find in the public domain.”
The team reviewed every narrative included in the collection, and applied criteria to help keep the viewer safe – for example, excluding narratives with any form of hate speech, such as racism or sexism. They also included content warnings for things like descriptions of self-harm.
“It might be really important for someone at the right stage in their recovery to understand what other people have gone through,” says Stefan. “Or it might be that someone is not at all ready to hear what other people have gone through.”
The trial with people who hadn't experienced psychosis in the last five years found that there was a significant benefit to people's quality of life, of accessing the intervention.
A ‘significant benefit’ to quality of life
In both trials participants were divided randomly into two groups, where one group got access to the web application immediately and the other got access after a year.
“There was a really interesting difference between the two trials,” says Stefan.
“The trial with people who hadn’t experienced psychosis in the last five years found that there was a significant benefit to people’s quality of life, of accessing the intervention – and by significant, we’re using the word in the statistical way, so a statistically measurable increase. The actual increase was somewhat small, but it was statistically measurable.
“We found a significant increase in people’s perception that their life had meaning.”
NEON’s cost-saving potential
Looking to the future, and what might be needed to give more people access via, for example, the NHS, the benefits were found to be cost effective.
This means that for each year of high quality life that people gained due to the intervention, the cost was about £12,000. The NHS will typically commission interventions that cost below £20,000-30,000, making NEON potentially much cheaper than other interventions they might adopt.
“Now intriguingly for people who we recruited – people who were and weren’t using the health service – for people who had used the specialist mental health care provided by the National Health Service, accessing the intervention actually saved the NHS money,” says Stefan.
“And even though it cost about £300 per person to give people access to the collection, the consequence was less time spent with psychiatrists and less time spent with psychologists. So there was a saving in those resources that offset the cost of delivering a digital intervention.”
While this was on the relatively small scale of NEON’s 1,023 trial participants, it’s expected that the intervention would get cheaper on a larger scale, “so that probably underestimates the economic benefit,” says Stefan.
People who found a narrative that they identified as making them feel hopeful did experience significant benefits.
A need for more research
For the portion of the trial which included people with experience of psychosis in the last five years, the team found no statistically measurable benefit gained for accessing the intervention.
“But we found some intriguing findings that point towards a need for more work,” says Stefan.
“People who found a narrative that they identified as making them feel hopeful did experience significant benefits.
“Now, we don’t truly know whether finding a hopeful narrative was the cause of that or whether people who were more likely to identify a narrative as hope-inspiring were more likely to experience benefit. That’s why future work is needed, but it’s at least a positive signal.”
For the people in that portion of the trial who were also already using NHS mental health treatment services, the benefits they gained were very close to being cost effective so, Stefan suggests, the intervention may not need much tweaking to be cost effective, “but those changes would need to be made and evaluated, and the intervention would need to be evaluated again”.
Using the findings for future research
While the long-term hope for NEON is the collection will be public availability of the collection, in the shorter term the knowledge from the study is already being used to inform other projects.
“For example, I was involved in another NIHR-funded study that looked at whether access to a scan of someone’s liver, combined with narratives describing recovery from periods of alcohol misuse after receiving a similar scan, could help people,” says Stefan.
“It was a fairly small-scale study but for people who received the scan and the narratives, it found quite a large reduction in the amount of alcohol that they were drinking and quite a large increase in the time people stayed engaged with alcohol treatment services due to that intervention.
“But yeah, the idea would be some form of direct public benefit from the collection of narratives,” he concludes, “and then it’s about finding the right route towards getting it out into the world.”
Read the final study report on the Institute of Mental Health website, and find out more about the study on NEON’s project page.
