Media must reconsider its approach to engaging with people with lived experience, says report

People with lived experience of mental ill-health, distress or trauma are often being re-traumatised by talking to the media about deeply personal experiences, a new report has found.

The Not Just a Story report, which explores how people with lived experience are engaging with the media, said the relationships between journalists and those they interview are often “harmful and tokenistic”.

The report was researched and written* by National Survivor User Network (NSUN), a user-led network of groups and people with experience of mental ill-health, distress, and trauma, which called on the media to reconsider its approach to engaging with people with lived experience.

For the report, NSUN surveyed 141 people and ran two focus groups with members to hear about their experiences.

The report found that the media can cause harm due to its approach to “extracting and sharing deeply personal and often painful or traumatic” parts of people’s lives.

And it found that journalists frequently fail to consider the support and access needs of the person they are interviewing; to be clear about what the process will entail; and to let the interviewee know when they are and are not speaking on the record.

Of those surveyed who had experience of engaging with the media, nearly a quarter (23 per cent) felt they were not supported and treated with respect and sensitivity.

Many of those interviewed raised concerns about the long-term implications of their personal experiences being made public – and how they might feel about the piece in five or 10 years’ time – which in a digital age could be permanent and widespread.

One survey respondent said: “In the beginning, I was like, oh, wow. People want to interview me. People want to, like, hear about my story.

“And I didn’t sort of think about the longer term consequences of it.”

Although the process of engaging with the media can feel “validating”, interviewees can also feel obliged to disclose painful experiences because it is in a “good cause”, but this can be retraumatising, the report found.

One focus group participant said: “I think there is this kind of attitude that just that it’s automatically a good thing if you speak about your experiences and you’re like, breaking the stigma.”

Many of those NSUN spoke to said they had had a limited opportunity to contribute to a story anonymously or to seek support to think through the possible consequences of contributing.

And some spoke of how their contributions were used to “endorse a pre-determined narrative” or were reduced to their most “dramatic” or “shocking” elements.

One survey respondent said: “They kept pushing me for the ‘darkest’ details. It felt like an interrogation with no support to follow.”

NSUN’s report also raises concerns that few of those who talked to the media were paid for their time.

Of those surveyed who had engaged with the media, only 13 per cent were offered any form of payment.

The report includes guidance for people with lived experience who are thinking about engaging with the media, and separate guidance for journalists who want to “meaningfully and supportively” engage with people with lived experience.

Gabs Johnson, NSUN’s communications and membership manager, said: “From our research, this much was clear: people with lived experience of mental ill-health, distress or trauma are often re-traumatised when sharing personal experiences with the media.

“The media demands snackable, short form, attention-grabbing content; taking the fastest and easiest approach to ‘telling a story’, which often removes nuance and reduces a person’s life to a diagnosis, or a few short words stripped of their wider context to engage readers.

“We heard about an absence, or breaking, of trust in the relationship between journalist and contributor; a relationship in which one person’s deeply personal and often painful experiences are extracted, often without adequate support, only to be all too often misrepresented.

“It is a harmful and tokenistic dynamic that we also find in ‘co-production’ spaces, as well as within mental health services.”

They added: “Our findings and their accompanying guidance demand the media reconsider its approach to engaging with people with lived experience.

“We want to see journalists taking steps to undertake engagement with care and consideration, and structural changes within media spaces that re-imagine the process entirely, including calling for people to be appropriately compensated for their labour.”

*Not Just a Story: The media’s engagement with people with lived experience of mental ill-health, distress or trauma, was written by NSUN’s Gabs Johnson and Amy Wells