Lived Experience Media Work

In 2025/26 NSUN undertook a research project exploring the experiences of people with lived experience of mental ill-health, distress or trauma when doing media engagement work such as taking part in interviews with journalists. We published the resulting report, ‘Not Just a Story’, in March 2026. 

Our research found that people with lived experience of mental ill-health, distress or trauma are often motivated to share their experiences with the media because of a desire to raise awareness, provide representation of lesser-platformed experiences, and advocate to improve the experiences of others. However, even when it might aim to spotlight injustice, provide activists and ‘experts by experience’ with a platform, or challenge the status quo, the media’s approach to extracting and sharing deeply personal and often painful or traumatic parts of peoples’ lives can cause harm.

Our key findings (click to expand)

The long-term implications of taking part in public media engagement work are a key concern. People who took part in this project often reported limited opportunity for anonymous contribution or support to think through possible consequences following publication. 

• While being asked to share experiences with the media can feel validating, it can also enforce a sense of obligation to disclose painful experiences for a ‘good cause’. This can be retraumatising when it is not undertaken with care. 
• People often feel tokenised when engaging with the media. This is particularly significant when people feel that their contributions are used to endorse a pre-determined narrative, or are isolated or reduced to their most ‘dramatic’ or ‘shocking’ elements. 
• People experience a lack of clarity and guidance when engaging with the media. This includes receiving limited information on what the process will entail, and not being told clearly when they are speaking on or off the record. 
• Limited control is offered over the process of engagement. This includes not having a say over the angle and content of the final piece, which is often not shared with contributors for approval. 
• There is a lack of consideration around support and access needs for both Disabled and/or neurodivergent people undertaking media engagement work. This includes adjustments that can be made to make the experience less emotionally taxing for people with lived experience. 
• Participants are usually uncompensated for media work. This contributes to a sense that the time, expertise and emotional labour of people with lived experience is not valued or respected. 

Guidance

Our research asked people about ways in which they felt the process of undertaking lived experience media engagement work could be improved. Based on our findings, we have created two sets of guidance, which you can find in full below, with the option of downloading each set as a PDF or Word document. 

• The guidance for people with lived experience aims to provide support and questions to consider for people who are deciding whether they wish to speak to journalists.  

• The guidance for journalists aims to provide recommendations for media professionals who wish to meaningfully and supportively engage with people with lived experience. 

Guidance for people with lived experience

These are suggestions for people with lived experience who are considering engaging with the media. Ideally, journalists would proactively volunteer the information and support that we suggest requesting. However, we know that this is not the experience of many people taking part in this work, so this guidance outlines considerations you may want to make before agreeing to get involved.  

When asked what advice they would give to others, participants in this research project suggested: 

• Taking some time to consider whether you may find the experience triggering before agreeing to take part. You may want to reach out to trusted people to talk about your decision and consider what support you could utilise if any part of the process was distressing. 

• Considering if there may be any implications, now or in the future, of your name and personal information being made public along with your contributions. You may wish to ask to be kept anonymous/for your contributions to be attributed to a pseudonym. 

• Researching the journalist who has approached you, and/or the media outlet your contribution will be published on. Have a look at the type of content written and shared to get a better sense of the likely angle/stance of the piece. 

• Asking if out-of-pocket expenses (if applicable) will be covered if you feel able, and if any payment will be on offer for your time. You might find it helpful to share the National Institute for Health and Care Research guidelines to give an example of the rate of payment expected for lived experience work (while the rates relate to research environments, they can be used as a benchmark). 

• If you have access and support requirements, considering sharing these with the journalist (such as through a pre-prepared access document) and only agreeing to take part if these needs can be met.  

• Asking for adjustments such as the opportunity to provide written responses to questions over email instead of taking part in an interview, getting the questions in advance for a live interview (or to pre-record a clip to be shown in the segment), the inclusion of breaks into an interview, a quiet and private place for in-person meetings or interviews, and the ability to bring a supportive person to an interview. 

• Asking the journalist for information on any part of the process they do not provide clarity on. For example, you may want to ask about things like the purpose of the piece and the intended audience, which parts of your conversations are on/off the record, venue details for in-person arrangements, who else has been approached for comment, and whether they expect your contributions to be utilised on other platforms/mediums e.g. if clips from a TV interview might be shared on social media. 

• Establishing what you are and are not willing to speak about before taking part, and communicating this to the journalist (especially if taking part in a live interview) in order to decrease the chances of being asked questions that you do not feel comfortable answering. Consider preparing some sentences to communicate this in the moment if need be, for example, “as I previously shared, I’d prefer not to discuss that particular topic during this interview”. 

• Asking the journalist if you will be able to review and approve the final draft/edited recording before publication to ensure you are happy with what has been selected from your contribution for inclusion within the piece, as well as the language/terminology used outside of direct quotations to describe you and contextualise your contributions in the piece. 

• Asking the journalist if, how, and until when you will have the opportunity to withdraw your contributions after the piece is live (for example having your quotations removed from a written piece or having a recording of an interview deleted/taken down from a website/social media platforms). 

Click here to download the plaintext (Word doc) version of the guidance

Guidance for journalists

These recommendations are for journalists and/or representatives of media bodies to take into consideration when approaching individuals with lived experience of mental ill-health, distress or trauma for comment, contribution or interview. It is important to communicate the full details of what involvement entails as soon as possible, so that an informed decision about taking part can be made, and contributors can ask questions and clarify uncertainties.  

Implications of engaging with the media 

• Journalists should initiate a conversation about the possible consequences of taking part in media engagement, now or in the future. Participants should be offered full anonymity, or for their contributions to be attributed to a pseudonym. If recording for e.g. TV, other anonymising options can be offered, such as the use of a voiceover.  

• Identifying information such as someone’s name, location or place of work should never be published without consent, and consideration should be given to whether sharing identifying information is necessary in any instance. 

• Journalists and media representatives should also consider sharing information about the nature of the media that may be unfamiliar to participants. For example, we heard that former media contributors were surprised by the way in which unfamiliar media outlets were able to cross-purpose published articles on different sites, with unmoderated comments. While this cannot always be avoided, we recommend communicating the likelihood of such events.  

• It is important to make it clear to contributors whether they can withdraw their contribution before publication/have their contribution removed after publication and if so, the process for doing so. If this isn’t possible at all/by a particular date, this should be specified, along with the details of an alternative contact at the media outlet to ensure long-term contact can be maintained. 

Payment  

• Participants should be paid fairly for their time, and expenses should be covered. We encourage journalists to start conversations in their places of work about budgets for contributors, referring to the National Institute for Health and Care Research guidelines to give an example of the rate of payment expected for lived experience work (while the rates relate to research environments, they can be used as a benchmark).  

• Information and signposting should be given to participants on the implications of receiving payment on tax and benefits. 

Respect and sensitivity 

• Treat contributors as an individual rather than a story, not focussing explicitly on the most personal elements of a person’s experiences while ignoring the wider picture, and maintaining an awareness of how uncomfortable it can feel to be asked probing questions about traumatic events. 

• Allow participants’ contributions to shape the angle and content of a piece, rather than endorse an existing narrative. If you can’t do this, explain the existing narrative clearly so that participants can give informed consent. 

• Use the language that participants themselves use to describe their experiences of mental ill-health, distress or trauma in relevant contextualising information outside of direct quotations – for example, respecting if someone prefers the use of non-medicalised language to describe themselves. Speak to participants in a private environment wherever possible, or inform the person you are speaking to if you are making a call from a location where there is the possibility they will be overheard by others. 

• Journalists could consider sharing if their motivation to write the piece is connected to their own lived experiences, if they feel comfortable doing so, in order to help establish trust and mutual understanding. However, it is important to be aware that there is still a power dynamic at play, and that perspectives may differ from their own. 

Support and flexibility  

• Journalists should initiate contact by asking participants if they have any access or support requirements they would like to share via an access document or otherwise. Journalists and media outlets could consider creating a template access document for completion by participants, and proactively offering ideas for adjustments and flexibility. 

• During an interview, participants should be allowed to take breaks whenever they would like, bring a trusted person with them for support, or reword an answer/decline to answer any question. The ability to do these things should be communicated to the participant at the earliest opportunity.  

• If possible, alternative modes of contribution should be offered and arranged at request, e.g. by allowing a participant to record their own video, provide written answers to questions via email, or receive their interview questions in advance and prepare their answers. 

• Participants should be provided with a detailed schedule of events when in-person contribution is required, including a breakdown of the day and information on private spaces which can be accessed and used.  

• Journalists and media outlets should consider facilitating access to media training for people with lived experience who are acting as spokespeople. 

• Journalists should give consideration to the emotional impact that contribution may have on participants. If therapeutic support is available, this should be given to participants (and/or signposting to a wide range of external sources of support), and journalists should check in with participants at a scheduled date after publication has taken place. 

Control and agency 

• Journalists should clarify what is and is not on the record from the outset, and at various points throughout the process. 

• Journalists should offer participants the chance to establish what topics they do and do not want to talk about before engaging. 

• When approaching participants, journalists should communicate which (if any) other contributors they are approaching for simultaneous comment, especially if their contributions are going to be presented as oppositional. 

• Participants should be given the opportunity to review the final draft and make changes. As detailed above, it is also important to make it clear to contributors if and how they can withdraw their contribution at any stage of the process, including after publication. If relevant, it is also worth communicating to contributors the hierarchy of decision making within the media outlet e.g. if there is a senior member of staff who may be able to make final adjustments to the publication without oversight.  

Being kept informed 

• Participants should be kept in the loop throughout the process, including being informed of where and when the piece will be published and sent link(s) once it is live, and kept updated on any developments based on the piece, particularly for investigative journalism. 

• Participants should be told if there is a chance that a piece will not actually be picked up for publication, e.g. if a freelancer is collecting contributions for a pitch. 

Click here to download the plaintext (Word doc) version of the guidance