June 19, 2024

New research proves that personal accounts of how people have overcome mental health struggles are effective at helping others in similar experiences – and cost-effective too

Lived experiences chronicling everything from pain management to drug addiction abound online, but do they really aid recovery? New research led by experts at the University of Nottingham and published this week in World Psychiatry proves definitively that – in mental health settings at least – they do.

The team painstakingly curated a digital library of hundreds of audio, video, written word and image files recounting stories of mental health recovery, told through prose, poetry and even the odd graphic novella.  

Study participants, all with non-psychotic mental health problems like low mood, stress and anxiety, were given access to use it as much or as little as they liked over the course of a year. The results revealed an uplift in their quality of life.

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“I think seeing on a large scale that other people have had similar experiences, and that things get a bit better in the future, can give people hope,” explains study co-ordinator Dr Stefan Rennick-Egglestone.

“And if people have hope, they can try new things to find better routes to a brighter future.”

The work – a world first – was born out of study lead prof. Mike Slade’s time as a clinical psychologist in the NHS, where he saw recovery narratives used ad-hoc, rather than as a formal practice tool. 

The team spent two years planning how to investigate using narratives to aid people’s recovery. Image: Kampus Production

“Giving people an autobiography that describes someone’s process of recovering from mental health problems, and saying: ‘Read this, it might help you’,” Rennick-Egglestone offers, by way of example.

Securing a £2m research grant from the National Institute for Health and Care Research, Slade’s team spent two years building a theoretical framework to investigate how narratives might aid people’s recovery. 

Through a round of pre-study interviews with people dealing with mental health issues, they also identified scenarios where these lived experiences might have an adverse effect – rekindling latent symptoms, for example, or causing self-doubt if recovery were to seem unattainable. 

Seeing that other people have had similar experiences, and that things get a bit better in the future, can give people hope

“What convinced us overall was that the benefits of hearing someone else’s narrative far exceeded the harms,” says Rennick-Egglestone.

The NEON study – Narrative Experiences Online Intervention – gathered more than 600 stories from all over the world, drawing on existing, published work and digital repositories. The team collected 50 more of their own along the way, including several from people who had heard about the study and wanted to lend their voices.

“Every narrative is exactly as it was donated to us or as it was published,” clarifies Rennick-Egglestone. “We didn’t go down the route of creating artificially positive narratives, because otherwise you create an unrealistic version of recovery, and if people can’t achieve it, they start to blame themselves.”

mental health

The results revealed another unexpected boon: an increased perception among participants that their lives had meaning. Image: Keira Burton

Along with a ‘statistically significant’ improvement in quality of life, the results revealed an unexpected secondary boon: an increased perception among participants that their lives had meaning. “There’s a growing body of evidence that this is a protective factor against depression and anxiety, and a whole range of common mental health problems,” says Rennick-Egglestone.

One participant noted how personal and honest the narratives were. “I took from them that ‘yes, me too!’ feeling that feels so validating when you realise you’re not alone in your experiences,” they told the team. Another, dealing with an ADHD diagnosis, said the stories gave them hope, even when they didn’t come across as entirely positive: “Just sharing the story, sharing the hurt, the confusion or the fight was enough for me, regardless of the outcome.”

To many working in the mental health space, NEON’s results might sound like stating the obvious. Recovery stories have been one element of NHS Wales’ online cognitive behavioural therapy project for some time, for example. 

I took from them that ‘yes, me too!’ feeling that feels so validating when you realise you’re not alone in your experiences

“They can be a powerful way to establish common ground and connection, and to foster empathy and unity with others,” says project manager Fionnuala Clayton. “They can also be a great way to reduce stigma around mental health experiences.”

In Scotland, the Scottish Recovery Network (SRN) maintains its own library of narratives, which fed into the NEON study. “They help people feel like a human being,” says SRN director Louise Christie. “And they motivate people to embrace the idea that they can make beneficial changes in their lives. It gives them agency: they’re not just sitting waiting for a doctor or nurse to solve the problem.”

But while NEON’s findings might be unsurprising, they do address one stark reality of mental healthcare provision: its cost.

The National Institute for Health and Care Excellence sets an upper limit on the cost of commissioning health care at £30k per quality-adjusted life year. Using recovery narratives comes in at around two-thirds cheaper. Where study participants were already receiving mental health care, engaging with stories saved the NHS money and resources, through fewer visits to psychiatrists and psychologists, for example.

Using recovery narratives could be up to two-thirds cheaper than existing mental health treatments, the research shows. Image: Sam Lion

Rennick-Egglestone hopes now that having proved the economic case for NEON, it will find purpose in different healthcare settings. A small study involving people dealing with alcohol abuse is showing early promise. There are plans for similar research with dementia patients, and the team is seeking funding to implement NEON in two healthcare trusts, as well as a third-sector organisation.

He sees it as part of a broader shift towards harnessing the power of story, of shared experience, in health care, signalled by the NHS’ increasing use of peer support workers. 

“We’re part of that process,” says Rennick-Eggletone. “The process of realising that the personal experiences of other people can be helpful in various ways within a health treatment context.”

Main image: fotostorm/iStock

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