Investigating SANE’s programs around stigma in the media: exploring media engagement experiences of advocates with lived experience of complex mental illness

ABSTRACT

Objective

SANE facilitates and supports media engagements with their Peer Ambassadors to help elevate the perspectives and lived experiences of people with complex mental illness. This study aimed to explore Peer Ambassadors’ media engagement experiences to better understand their support needs and facilitate improved preparation for their future media engagements.

Methods

Peer Ambassadors (n = 10) participated in interviews about their media engagement experiences. Participant responses were inductively coded and analysed thematically.

Results

Three main themes were identified. These related to factors that motivate and influence media engagement experiences, and lived experience advocates’ support and training needs. These were: Empowerment as motivation to share lived experiences with the media; Openness, flexibility and transparency is needed from journalists to positively influence media engagement experiences; Preparation and support for Peer Ambassadors surrounding media engagements is essential.

Discussion

Media engagements provide a valued opportunity for Peer Ambassadors to share their experiences with large audiences and generate widespread impact on awareness and public stigma. Recommended practices should focus on providing support and training to lived experience advocates to best equip them for undertaking media engagements. Proactively creating additional media opportunities could be expected to increase the reach and impact, as well as the diversity, of the lived experience stories being shared.

KEYWORDS:

• Complex mental illness
• social stigma
• lived experience
• advocacy
• consumer advocacy
• communications media

Introduction

Public stigma towards people with lived experience of complex mental illness

Compared to common mental illnesses, such as depression and anxiety, public stigma is higher towards people with more complex and lower prevalent mental illnesses such as schizophrenia, bipolar, obsessive compulsive and personality disorders (Angermeyer & Matschinger, 2003; Wood et al., 2014; Schomerus et al., 2023; Schomerus et al., 2022). These conditions may be defined as ‘complex mental illness’, which can have recurring and persistent symptoms and more complex support needs (Morgan et al., 2021). Commonly held misconceptions about people with these conditions include stigmatising beliefs that they are unpredictable, dangerous, violent, incompetent and unable to take care of themselves (Angermeyer & Matschinger, 2005; Angermeyer & Dietrich, 2006; Feldman & Crandall, 2007; Crisp et al., 2005; Reavley & Jorm, 2011). Due to their lower prevalence, members of the public are less likely to know someone or have social contact with someone with lived experience of complex mental illness, which further contributes to stigma (Angermeyer et al., 2004).

This heightened stigma is also reflected in media portrayals of people with lived experience of complex mental illness (Gu & Ding, 2023; Gallagher et al., 2023; Hildersley et al., 2020). People with these conditions are most commonly portrayed as being unpredictable, incompetent, and a danger to others (McGinty et al., 2016; Corrigan et al., 2005; Bowen et al., 2019). The media has been identified as a key source of information about mental illness (Reavley et al., 2011), and media portrayals of complex mental illness have been found to influence public attitudes (Ross et al., 2019). Stigmatising portrayals of people with mental illness have strong potential to negatively influence attitudes among members of the public. Such portrayals have been found to increase stigmatising public beliefs about dangerousness, agreement with stereotypes, and desire for social distance (Reavley et al., 2016; Ross et al., 2019). Media portrayals have also been found to contribute to discriminatory behaviour towards people living with complex mental illness (Yang et al., 2022). The impact of stigma reduces social inclusion and life satisfaction, increases loneliness, and negatively influences help-seeking behaviours and overall recovery (encompassing both personal and clinical recovery) (Lim et al., 2018; Link et al., 2001; Stuart, 2006; Świtaj et al., 2009). Due to its detrimental impacts, reducing stigma has been identified as a priority area in Australia’s Fifth National Mental Health and Suicide prevention plan (Department of Health, 2017) and by the 2020 Mental Health Productivity Commission (Productivity Commission, 2020).

Challenging negative stereotypes through positively framed media portrayals

Alongside the potential to negatively influence public attitudes about people with lived experience of mental illness, the media can also positively influence public attitudes to reduce stigma. Previous research has shown that positively framed news stories about lived experiences of complex mental illness, including stories about recovery (including both clinical and personal recovery) and personal success, can reduce stigmatising attitudes (Ross et al., 2019). These provide alternative narratives about complex mental illness to those usually portrayed in the media, and may act to challenge stigmatising beliefs.

The 2022 Lancet Commission on ending stigma and discrimination in mental health highlighted the responsibility of all media organisations to promote mental health and contribute to the reduction of stigma and discrimination (Thornicroft et al., 2022). They issued a call to action for ‘all media organisations to systematically remove stigmatising content from their products' (p. 1471) through improved policy statements and action plans. Partnering with the media presents a key opportunity to share lived experience stories and key advocacy messages to change attitudes about people with lived experience of complex mental illness. Such an anti-stigma strategy has the potential for widespread reach. Media advocacy also provides an important opportunity to amplify the voices of people with lived experience (Estrada-Portales, 2016), creating awareness of the realities of living with a complex mental illness and the societal and healthcare changes that are needed to improve recovery and social inclusion.

Sharing lived experience narratives in a public domain

By sharing their experiences and perspectives, people with lived experience of complex mental illness can contribute to stigma-challenging narratives in the media and other public domains, such as through speaking events and through mental health websites. The sharing of lived experiences increases understanding through either or both ‘education' and ‘contact' with a person who is living with complex mental illness, which helps to develop understanding of and empathy for what it is like for someone to have a complex mental illness (Corrigan & Kosyluk, 2013). Such an understanding also emphasises a sense of shared humanity (De Vecchi et al., 2016) and encourages perspective-taking (Mann et al., 2023) which can reduce ‘othering' of people with lived experience of complex mental illness. Furthermore, personal contact can help to challenge misconceptions that are commonly held about people with complex mental illness, such as that they are dangerous, incompetent or unable to recover (Corrigan & Kosyluk, 2013).

Research into the impact on people sharing their lived experience narratives in the media is limited. It has, however, been investigated in young people who have lived experience of mental illness (which may include, but is not necessarily, experience of complex mental illness) involved in batyr’s speakers program. batyr is a youth-focused mental health advocacy organisation that aims to reduce stigma and encourage help seeking by engaging young people in conversations about mental health through lived experience speaker presentations (batyr, 2022). A randomised controlled trial further found the batyr@schools lived experience speaker program to be effective at reducing stigma and increasing help-seeking intentions in high school students in Years 9−12 (Hudson & Ingram, 2017). Semi-structured interviews with 18 batyr speakers revealed there are also benefits for the speakers in sharing their lived experiences (Lindstrom et al., 2021). Participants described having an improved understanding of recovery through reflecting on its nature as a process, improved self-acceptance, and reduced self-stigma. Participants also described feeling increased social connectedness, empowerment, purpose, and confidence to ‘break down' the stigma associated with mental illness through speaking about their lived experiences (Lindstrom et al., 2021). The impact of sharing lived experience narratives has also been investigated in an Australian sample of young people with lived experience of suicide, with positive effects including additional meaning making from reflecting on and sharing their lived experiences in a supportive environment, which often had an unintended therapeutic effect (Wayland et al., 2020).

While there are benefits reported at an individual level, it is also important to recognise the possible detrimental impacts in sharing lived experience narratives. These include the emotional toll involved in sharing lived experiences and engaging with audiences on sensitive topics, as well as potential harm from editing narratives to fit a recovery narrative or align with anti-stigma goals (Yeo et al., 2021a). While the co-produced nature of recovery narratives aims to avoid perpetuating stigma towards people with mental illness (Kaiser et al., 2020), it can also mean that the lived experience advocates may not be encouraged to use language that best resonates with their experiences or to share details of their story that may hold specific importance to them, in order to avoid causing harm in others. Furthermore, editing lived experience narratives can also reduce diversity in the stories being shared, and therefore limit the public’s understanding of the realities of living with complex mental illness by only sharing narratives that align with advocacy goals (Yeo et al., 2021b). Interviews exploring the sharing of lived experiences of suicide as part of suicide prevention activities and research highlighted the importance of ensuring lived experience speakers are valued and emotionally supported in speaking about their experiences (Wayland et al., 2020). It was also emphasised that appropriate training needs to be provided to lived experience speakers to prepare them for their speaking roles, including engaging with audiences on emotional topics such as mental distress and suicide.

SANE’s Peer Ambassador program

SANE is an Australian organisation who support people affected by complex mental health issues through counselling and peer support, research, and advocacy (SANE, 2023). SANE’s Peer Ambassador program is made up of people with lived experience of complex mental illness, either their own or as a carer, who share their personal experience to help raise awareness and reduce stigma. The program currently has 71 Peer Ambassadors, who are selected via an expression of interest and interview process to ensure readiness for an advocacy role. Peer Ambassadors are lived experience advocates who contribute to SANE’s advocacy work by sharing their lived experience stories at a range of speaking events, as well as research and media opportunities. Peer Ambassadors receive payment from SANE for their advocacy engagements.

SANE facilitates and supports media engagements with their Peer Ambassadors to help elevate the perspectives and experiences of people with lived experience of complex mental illness (SANE, 2022). One part of this involves providing training and supporting Peer Ambassadors to engage with the media to raise awareness about and reduce stigma towards complex mental illness, and to provide hope to Australians affected by complex mental illness. Approximately one third of the current Peer Ambassadors have undertaken media engagement opportunities through SANE.

This study aimed to better understand the experiences of SANE’s Peer Ambassadors in undertaking media engagements to share their lived experiences of complex mental illness. This included their motivations for participating in and experiences of media engagement, as well as seeking feedback about Peer Ambassadors’ support and training needs to facilitate improved preparation for future media engagements. Given the highly sensitive and personal nature of sharing lived experiences in a public domain, this study sought to understand how to ensure that media engagement is a supportive and positive experience. The feedback provided by participants is expected to inform the support provided to lived experience in undertaking media engagements to increase the likelihood of a positive experience, as well as to encourage the involvement of additional lived experience advocates in media engagement opportunities. Ultimately, this research aims to contribute to improving the positive impact of SANE and other mental health organisations in increasing awareness and understanding of lived experience of complex mental illness through the media.

Methods

Participants

Participants were invited to take part in an interview via an email forwarded to the Peer Ambassador mailing list by the SANE Peer Ambassador Coordinator. Peer Ambassadors were eligible to participate if they had prior experience engaging with a media professional to share their own experiences of living with complex mental illness. The lead researcher (AR) collaborated with the Peer Ambassador Coordinator to ensure that a range of experiences and perspectives were captured in the sample. This was to ensure that the findings were most relevant, and to subsequently maximise their relevance and usefulness to inform possible future media initiatives to be implemented by SANE.

A total of 10 Peer Ambassadors expressed their interest in participating, and all 10 participated in a subsequent interview. Participant demographic information is shown in Table 1. Six participants were male and four were female. Participants represented a range of life and advocacy experiences, with age ranging from 23 to 68 years, and length of experience as a SANE Peer Ambassador ranging from 2 to 37 years. Participants also had a range of diagnoses, including schizophrenia, bipolar disorder, borderline personality disorder, obsessive compulsive disorder, and depression.

Table 1. Participant demographic information (N = 10).

Gender	n (%)
Female	4 (40%)
Male	6 (60%)
Non-binary, gender diverse, other	0 (0%)
	Average (SD)	Range
Age (years)	45.70 (13.57)	23–68
Experience as a Peer Ambassador (years)	11.65 (11.94)	2–37

A total of 7 participants (70%) held advocacy roles with mental health organisations in addition to their role with SANE as a Peer Ambassador. These roles were held across a range of Australian mental health organisations. In their responses to interview questions, participants drew on all their media engagement experiences across all of the organisations they were involved with in their responses.

Materials and procedure

The interview questions were designed in consultation with SANE’s media and communications staff, whose work involves supporting Peer Ambassadors in undertaking media engagements. Ethics approval was obtained from The University of Melbourne's Human Research Ethics Committee (HREC#: 23811).

After expressing interest in participating, Peer Ambassadors were contacted by the lead researcher (AR) to schedule their interview. The interview guide was provided to participants prior to the interview taking place to support preparation and facilitate more considered responses from participants. Informed consent was provided, and the demographics survey was completed, via the online survey platform, Qualtrics, prior to the scheduled interview time.

Interviews took place via videoconferencing platform Zoom (n = 8) or via phone (n = 2). Interview duration ranged from 26 to 58 min, with an average duration of 34 min. Interview questions focused on prior media engagement experiences, including what factors contributed to a positive or negative experience, as well as their support and training needs to facilitate improved preparation for future media engagements. A copy of the full interview guide is included in Appendix.

Diagnostic terms (such as schizophrenia and bipolar disorder) were used by the lead researcher in the interviews and within the framing of the study more broadly to help clarify the research focus on lived experience of complex mental illness, and to more clearly distinguish this from higher prevalent and more common mental illness. However, it is important to recognise that many people with lived experience prefer not to use diagnostic or biomedical labels, particularly in relation to complex mental illness such as schizophrenia (Angermeyer & Matschinger, 2003). In saying this, while biomedical terms were used to recruit for and introduce the study, participants were able to choose the language they used in the interviews, with this respected and mirrored by the interviewing researcher.

The lead researcher (AR, female) conducted the interviews. The interviewer remained neutral and non-judgemental and was curious to learn about the participants’ media experiences, including both the positive and negative elements of these. The interviewer prompted participants for more detailed responses when an experience was unclear (for example, prompts like ‘What did the journalist do that made you feel comfortable?' were asked when a participant described ‘They made me feel comfortable' after being asked about their positive media engagement experiences). This was to ensure a more thorough understanding of their media experiences, as well as support and training needs, to ensure that future initiatives can be tailored to best address these needs. The interviewer also validated participant experiences and provided feedback based on participant responses from earlier interviews (for example, by informing the participant when other participants had also described similar experiences in prior interviews). Participants who were interviewed later in the study were likely to have received more of this feedback. The researchers are confident that data saturation was reached, with themes consolidated in the final two interviews.

Data analysis

The interviews were audio recorded and transcribed using online transcription software, Otter AI. The transcripts were then analysed using thematic analysis (Braun & Clarke, 2006; Braun & Clarke, 2019) with a theoretical basis in constructionist Grounded Theory (Charmaz, 2017; Charmaz & Thornberg, 2020), due to the novel nature of this research, to explore the experiences of lived experience advocates with media engagements. This methodological approach also acknowledges the shaping of the data by the researchers’ interactions with the participant, as well as their interpretations of the interview data. The interview questions were designed to be objective, and the researcher is confident that a neutral stance was maintained throughout the interviews. Furthermore, the prompts used in the interviews were designed to encourage elaboration, asking participants to explore their experiences and support needs in additional detail, rather than influencing their responses.

Participants were informed prior to their participation that this study was a collaboration between the research team from The Centre for Mental Health and SANE, and that the findings would be reported to SANE to inform initiatives to support future media engagements. The research team all have formal qualifications in mental health research, and are highly-experienced researchers in the field of stigma towards people with mental illness. This prior experience includes a specific focus in conducting research on media portrayals of people with complex mental illness and how these portrayals influence public stigma, which naturally influenced the researchers’ interest and motivation in undertaking the current study. While the researchers’ motivations and specific research interests were not explicitly made clear to participants prior to their participation, the interviewer made clear that they personally believed that media portrayals of lived experiences were important, and an important reason for undertaking this study was to support and improve these experiences. None of the research team had lived experience of, or someone close to them affected by, complex mental illness.

Following transcription processes, the transcripts were checked for accuracy by the interviewing researcher and revised where necessary to correct any errors. The transcripts were then imported into NVivo (version 12) and were analysed thematically as outlined by Braun and Clarke (Braun & Clarke, 2006; Braun & Clarke, 2019). Data were inductively coded, with initial codes identified from the data. Patterns within the codes were then identified, with codes collapsed accordingly to generate overarching themes. The themes were reviewed and refined by the interviewing researcher, with the research team contributing to refinement of the themes. A random sample of 10% of the transcripts (n = 1) was double coded by a second researcher (KD) to determine intercoder reliability (O’Connor & Joffe, 2020). This was determined to be acceptable, with moderate to strong agreement (McHugh, 2012) (Kappa values: 0.63, 0.72, 0.80, 0.93, 1.0). Discrepancies in coding between researchers were discussed until a consensus was reached. All researchers reviewed and agreed on the final coding framework. A summary of the findings was emailed to participants for their review, with participant feedback incorporated into the findings where relevant.

Results

Overview of Peer Ambassadors’ media engagements

Collectively, participants described taking part in a broad range of media engagements, including interviews for print/online media, magazines, radio and podcasts, and slightly less commonly, TV programs. They also described experiences of sharing their lived experiences for advocacy resources, including campaign videos and writing blog posts. Participants had varied experience in participating in media interviews, with some participants relatively new to this process in the past 3–4 years (n = 4), while others had 7–30 years of experience (n = 6).

Overview of themes identified through thematic analysis

Three main themes were identified across the interviews, comprising a total of five sub-themes relating to factors that motivate and influence media engagement experiences, and the support and training needs surrounding these. Themes and sub-themes are outlined in Table 2 and are explored in detail in the following sections.

Table 2. Themes identified from interviews with Peer Ambassadors about their media engagement experiences.

Key theme	Thematic content
Empowerment as motivation to share lived experiences in the media	Media engagements provide a platform that empowers people with lived experience of complex mental illness.
Openness, flexibility and transparency is needed from journalists to positively influence media engagement experiences	Journalist understanding of and openness towards lived experiences of complex mental illness contributes to positive media experiences. Journalists need to offer flexibility in their processes where possible. Transparency from journalists around media processes and story angle is important.
Preparation and support for lived experience advocates surrounding media engagements is essential	Media training is essential in preparing lived experience advocates for media engagements. Lived experience advocates need to be supported throughout the media engagement process. Further opportunities for media engagements need to be created to ensure diverse representation of lived experience in the media.

Themes of topics discussed by experienced and inexperienced participants did not substantially differ. Participants with less media engagement experience spoke about the support they would like based on their experiences, where more experienced participants spoke about what they have found helpful in the past and what additional supports they think would be helpful.

Empowerment as motivation to share lived experiences in the media

Media engagements provide a platform that empowers people with lived experience of complex mental illness

It was widely acknowledged by participants that the media provides an important platform to represent mental health advocacy organisations (including SANE) and share their experiences to improve community understanding of complex mental illness. While feeling a sense of responsibility to ‘represent well' (meaning to do a good job with the media interview) so as to portray their advocacy organisation and people with lived experience in the best possible light, media engagements were described as highly valued opportunities to reach and engage with large public audiences.

Because you want to represent especially, one for SANE Australia, but also to get a good message across on a particular topic or theme that you're covering. You want to give it all you’ve got, because you might not get that opportunity again. – Lived experience advocate 10

What I say and how it's reported will shine a light on people with schizophrenia. … I'm mindful that I have to present as well as I can and do the best job I can … . I'm not giving them a chance to demonize people with this label. – Lived experience advocate 2

Some participants acknowledged that media engagements were daunting at first, but also found that their confidence in participating in media interviews grew with positive experiences.

For me, when I took that like little leap and was like, Oh, what if leaning into like, my courage and my bravery … this can actually have a really positive impact. And, you know, it's not as scary or as daunting as we can make it out to be sometimes. – Lived experience advocate 3

Openness, flexibility and transparency needed from journalists to positively influence media engagement experiences

Journalist understanding of and openness towards lived experiences of complex mental illness contributes to positive media experiences

Overall, participants described having had mostly positive media experiences, with journalist attributes described as largely contributing to this experience. They widely described the importance of journalists and other media professionals having an informed understanding of complex mental illness, as this informs relevant and insightful questions which then forms a strong basis of a strong story. Having this understanding also allows journalists to sensitively engage with the sharing of lived experiences throughout the interview process.

It was important for them to have a good sense of knowledge to be able to ask the right questions. They need to research this area that they're going to explore. And they need to ask the right questions as well to probe the conversation to come into a dialogue. – Lived experience advocate 7

Conversely, a lack of understanding was noted by some participants to have contributed to negative and even stigmatising experiences with media engagements. This includes media engagement processes that were not supportive, invitations to be involved with media engagements that had the potential to contribute to stigma, and a lack of understanding of the emotional cost of sharing lived experiences of complex mental illness.

We're telling the personal stuff, we're really baring our souls, and there's a cost of baring. And the media don't understand, the journo doesn't understand the cost of baring your soul. And that's the problem because they expect you to bare your soul … And then they write this story, and you never see them again. There's no follow up, there's nothing. – Peer Ambassador 2

Journalists need to offer flexibility in their processes where possible

Participants also appreciated when journalists supported their preparation, for example, by providing a copy of the interview questions and any other relevant materials (such as examples of the TV segment) in advance, and allowing sufficient time to consider their responses prior to the interview taking place.

The thing that's really, really helpful is like being able to see the questions in advance and being able to prepare, like, it takes me a while to prepare … And like I write a bunch of responses, I'll practice saying them out loud. – Lived experience advocate 3

Media engagements that were organised ‘at the last minute’ and had a tight turnaround to meet media deadlines were often described as contributing to more negative experiences.

There was one that I did where it was one of the last-minute ones … And I made a few mistakes, because you know, when you when you're doing it on the fly … I didn't stick the landing on it … and there was just nothing [I could] do. – Lived experience advocate 1

To improve on these experiences, participants suggested that flexibility with media processes be offered where possible. This includes flexibility in scheduling the interview, including a time outside of usual work hours, a convenient location, having support people present, and having the option to reschedule if feeling unwell. This also includes taking a flexible approach to conducting the interview, such as moving on to the next question to allow more thinking time before coming back to a question.

And you know, there were a few times where I would start talking and just have a blank, and just say, ‘Oh, my God, I forgot what I was gonna say’. It was like, ‘That's okay, just keep talking’. Or like ask, you know, for the journalists to ask another question, just to get my brain going again. And like, it ended up being really good. And I really appreciated that. – Lived experience advocate 4

Participants also requested that journalists be flexible in their approach to the interview, being open to the interview itself and the resulting story to take a new direction as the lived experience story unfolds, as well as being flexible with the angle of the story to ensure it is representative of lived experience perspectives. Participants believed that such flexibility contributes to the best possible story being produced.

When we did that, with [radio station], oh it was it was amazing. That was like that type of journalism, where it's responsive and reflexive and reactive. And it was dealt with in a very, just curious way … going ‘wow, tell me more about that!’ – Lived experience advocate 8

… the media, it gives us an opportunity to voice what we want the community to hear. So they've got to respect that. So what we say is what we want the community to hear. So it's important that what they put out in the community is what we say, and not what they want to say. – Lived experience advocate 7

Transparency around media processes and story angle is important

The importance of transparency about media processes and the resulting media story was emphasised by participants. They described appreciating when journalists provided such transparency, usually in a briefing prior to the interview taking place, where they outlined the interview process and provided background information on their motivations for writing the story and their desired angle for the resulting piece.

So what she did, she told me a lot about the process of filming, I got sent other segments that other Peer Ambassadors have done … And she kind of ran through, like, the questions that she will be doing. And then she told me the whole process of like, what happens and how long it takes and the turnaround to get it from like film into being on TV. And it was all really exciting. – Lived experience advocate 4

Participants also noted that the opportunity to review and provide feedback on a draft version of the story before it was published was rare, and requested for this to happen more often as a standard process.

They should run it past us, because sometimes they do focus on the sensational part of the story. And not the nitty gritty. And that's problematic, too, because they might have an angle they want to explore. And sometimes that angle isn't necessarily aligned with what I'm saying. And you need to know whether they're going to misquote … because something could go wrong. – Lived experience advocate 2

Transparency about publication processes and platforms where the story is likely to be published (including online platforms such as social media sites) was also requested, as well as updates about the publication status of the story following the interview and providing a copy of the final published version.

And I think just, you know, that reassurance as well of knowing what's going to be shared, and knowing that you're happy with that, I imagine would alleviate any anxiety around what it's going to look like, in the end. – Lived experience advocate 7

Preparation and support for lived experience advocates surrounding media engagements is essential

Participants reported that they highly value and appreciate the support provided by the advocacy organisations they are involved with. This includes their support in screening and matching processes for media requests, and preparing for and attending media interviews.

SANE have a few more checks and balances on journalists. … Their duty of care for the person is probably really good. And it does probably filter out some of the less reputable people, or magazines or papers or wherever they are, on TV channels, radio stations … And of course SANE does its own follow-up with people which is really good. – Peer Ambassador 2

They also valued having a sense of community with peers who are also in advocacy roles in undertaking media engagements. It was highlighted that advocacy training that had been delivered in the years prior, as well as the accompanying resources, were helpful in crafting the narrative to their lived experience story for publicly sharing this.

One of the really great things we did through the training was telling us like writing down and telling our story to each other. So one of the hardest things to do in recovery or in treatment is to weave in a cohesive narrative through your story. And so the process of doing that was incredibly helpful. – Peer Ambassador 3

Media training is essential in preparing lived experience advocates for media engagements

Participants also noted that undergoing specific media training as part of their advocacy training would help to ensure they are better equipped to undertake media engagements. They also described that providing media training would encourage more lived experience advocates to become involved with media engagements due to feeling better prepared to take on these opportunities.

I don't know if there's like a more intensive media training you can do … And I think maybe if the option was there for someone to give you a one on one on how to do engagements with journalists and the broader news media, I would be confident enough to give that a go … Because like, if you don't feel prepared, you don't feel like you know how to do it, why would I put my hand up to do it? – Lived experience advocate 3

Participants described the topics that they would find most useful and relevant for media training to cover. This included:

• Guidance on how to prepare for media interviews, including interview preparation techniques and tips.I think a bigger focus, you know, whether it's half day or something around typical media engagements, and, you know, some of these tips and some of the people that have done before, share some how they felt. – Lived experience advocate 5

• Information about media processes for the different media formats, and their rights when engaging in these (for example, requesting to review the story before it is published, requesting to reschedule an interview if unwell). Maybe a bit of an overview on how it works, and what your options are, you know, if you're not well, or even the timing of when it's done, like, what, what are your sort of rights or power in that process? Do you have to just go along with what they say? – Lived experience advocate 5

• Self-care and setting boundaries around what parts of lived experience are comfortable to share.In order to empower me to feel comfortable being like ‘this is something that I feel comfortable doing, and this is not something I feel comfortable doing’. That would be able to set those boundaries and knowing that I can do that in the context of a media engagement would be incredibly helpful. – Lived experience advocate 3

• What to expect after going public with their lived experience story, including anticipating reactions from friends, family, colleagues/employers.I think it's really important to make people anticipate different scenarios, like, how are you going to feel if you know, this person hears the news, or in my case, as a [professional]? You know, no one really helps how you're going to tackle it if [someone] Google's you and finds out your story and approaches you. – Lived experience advocate 6

• The brief nature of the media relationship and the power imbalance within this.When people are first starting out as doing media work, you need to warn them about the idea that the media will be all over you like a rash and then spit you out … And people have to be prepared for that; to be prepared to have their ego puffed up and then it's puffed down. – Lived experience advocate 2

• Opportunities to learn from peers who have substantial media experience. This might be through a range of formats, such as mock interviews, informal presentations and mentoring, for example.Because then that peer to peer, and you're empowering those other people to, to share that knowledge with the other people. And like passing the baton sort of thing … But because that person's been in that space before that, and they know what it's like. – Lived experience advocate 10

• Opportunities to practice through mock interviews.There could be it could be a bit of a mock interview done by SANE staff too. Because if you've practiced going through that, after you've done your preparation, I think that would be useful. – Lived experience advocate 10

Lived experience advocates need to be supported throughout the media engagement process

Participants highly valued the support provided to them through their advocacy organisations throughout the media engagement process. This included pre-screening media requests to help match media requests to a ‘the right person’, assistance to organise and preparing for the media interview, and checking in throughout the media engagement process.

SANE has always been good. Like they’ll say ‘Okay, how did you go with it?’, speaking to journalists. When it comes out, ‘oh, what you think?’. They keep in touch. – Peer Ambassador 5

Participants acknowledged the emotional impact of reconnecting with personal experiences and sharing these publicly. They described that having someone from their advocacy organisation contact them afterwards to provide the opportunity to debrief, and options for who they can debrief with, is essential.

There needs to be mandatory follow up … And there should be an option. Do you want to talk to a peer worker, you want to talk to a psychologist? … That's something that I think is important, because you might, when you step off that stage … one of the things that we forget, you know, is that it's all well and good until it hits. – Lived experience advocate 8

Further opportunities for media engagements need to be created to ensure diverse representation of lived experience in the media

Participants welcomed additional opportunities to share their lived experience through media engagements to increase the reach and impact they can generate through sharing their story.

We need news to reach more media outlets to get our stories out there more … I think it's important that SANE, or an organisation like SANE, to be able to approach the media, rather than me individually approach to media. It has more impact when it's coming from [them]. – Lived experience advocate 7

Participants also noted the importance of increasing diversity in lived experience voices by sharing a broader range of experiences of living with complex mental illnesses, including the ongoing challenges that people face.

It needs to be balanced. Let's tell some not-so-great stories about [lived experiences] … If you're going to have a narrative, then the narrative needs to be true. [The media] don't talk about the things that we don't want to hear. And that's the thing. It's a very one-sided conversation … we do have to tell a lot of narratives. – Lived experience advocate 8

The need to share lived experiences from a broader range of cultural perspectives was also highlighted, and participants noted that more advocates from culturally diverse backgrounds are also needed. Participants suggested that partnering with multicultural mental health organisations, or other mental health organisations that also focus on complex mental illness, may help to increase this diversity.

… There's not enough ethnic [lived experience advocates] to start off with. In any program that commences in mental health, the ethnic communities are not drawn into it as much as it would impact on them in a positive way … [these organisations] can be linked to get these ethnic conversations happening through the media. – Lived experience advocate 7

Discussion

Overview of key findings

The feedback provided by lived experience advocates demonstrates that media engagements are valued opportunities to engage with large audiences to share their experiences and improve community understanding of complex mental illness. Despite feeling a responsibility to ‘represent well', advocates described these opportunities as empowering, with media engagements mostly described as positive experiences, which in turn grew confidence for undertaking future media opportunities. Similar benefits in sharing lived experience narratives have also been reported in other studies, including by young people with lived experience of mental illness, and also in a sample of speakers with lived experience of suicide (Lindstrom et al., 2021; Wayland et al., 2020). The benefits reported in these prior studies included greater self-awareness and confidence, an increased ability to safely talk about their experiences, and an awareness of helping others who are struggling with mental health issues. However, in recognising these benefits, participants involved in the present study also described an ‘emotional toll' to sharing their lived experiences. They also highlighted the importance of subsequent support being provided to help manage this, including opportunities to debrief following media interviews and further follow up after their story is published. This finding is also consistent with past research where people with lived experience of suicide described how speaking about their experiences could be ‘emotionally draining' and that support afterwards to manage this, as well as in managing audience reactions to hearing their experiences, would be useful (Wayland et al., 2020).

Lived experience advocates described the importance of journalists having a thorough understanding of complex mental illness prior to setting up an interview, to ensure sensitive engagement with their lived experience and the best possible story as the outcome. They also requested some flexibility with media processes including the opportunity to review the story prior to publication, to make the media engagement a more positive experience. Furthermore, transparency around media processes and story angle were also described as contributing to more positive media engagement experiences and ‘better stories', with a lack of transparency found to negatively influence media experiences.

Advocates also requested media training to increase their understanding of media processes across different formats (including TV, radio, online/print) and helpful ways in which they can prepare for these, as well as to prepare for reactions from friends, family and colleagues after going public with their lived experience story. As part of the media training, advocates described opportunities for peer learning from those who have substantial media experience to also be helpful. The importance of providing appropriate training and support to people in sharing their lived experience story is consistent with the existing (albeit limited) research literature. Other studies with lived experience speakers have similarly highlighted the importance of providing ongoing training to support people with lived experience in their advocacy roles (Wayland et al., 2020). Past research has also highlighted the importance of training in developing and safely sharing lived experience narratives (Lindstrom et al., 2021; Wayland et al., 2020). This finding is consistent with the present study, where participants noted that prior training on this topic was useful. However, within such training, it is also important to recognise the co-produced nature of the lived experience narratives, where lived experience stories are edited to fit a recovery narrative or align with anti-stigma goals (Kaiser et al., 2020). The co-production process needs to consider the safety of the audience and the goal of sharing the lived experience narrative while also allowing the lived experience advocate to remain genuine in sharing their narrative. This will also encourage diversity in the lived experience narratives being shared, which was also highlighted by participants in the current study as being needed to increase public exposure to a wider range of lived experiences to improve their understanding of experiencing complex mental illness.

In facilitating the sharing of lived experience, the constraints of media processes also need to be acknowledged and operated within by mental health advocacy organisations and people with lived experience who are undertaking media engagements. These might include tight deadlines, which limit the flexibility that can be offered in scheduling interviews, or do not allow for opportunities to review the story prior to publication. However, there needs to be a balance in ensuring that lived experience advocates feel supported throughout the media engagement and are not being ‘used' for a story, and also in working with the media to facilitate timely publication. Finding this middle-ground has potential to strengthen collaborations between mental health organisations and the media, and facilitates future media engagements to share stories featuring lived experiences. Providing support and training to advocates around media processes may help in striking this balance to ensure that their needs and the needs of journalists are both being met.

While this study focused on supporting media engagements from the perspective of a mental health advocacy organisation, interventions targeting journalists are also needed (Ross et al., 2022). Given the power differential in media engagements between a journalist and a lived experience advocate, this may undermine positive media experiences for advocates. Therefore, interventions should also educate journalists about the appropriate approach to take when working with people with lived experience of complex mental illness. This should include how to take the open, flexible and transparent approach that lived experience advocates have highlighted in this study. Some guidance on this topic is already provided by Mindframe in their guidelines for Communicating about a Person with Lived Experience (Everymind, 2022). However, this guidance is brief and does not provide the details of additional considerations desired by people with lived experience of complex mental illness as expressed in this study. More detailed guidelines should be developed for this purpose and shared with journalists by mental health organisations upon media requests.

Strengths and limitations

A key strength of this study is that, to the best of the researchers’ knowledge, it is the first to explore media engagement experiences from the perspective of people with lived experience of complex mental illness. This study also adds to the limited research on the experiences of people in sharing their lived experiences of complex mental illness in a public domain, and the findings can be implemented to support these experiences into the future. It is also important to note in interpreting these findings that the perspectives shared by the lived experience advocates who were interviewed in this study are not necessarily representative of all experiences or views held by people with lived experience of complex mental illness who are in advocacy roles.

Implications for preparing and supporting lived experience advocates in media engagements

These findings have informed the following recommendations for how advocacy organisations can prepare and support advocates with lived experience of mental illness in undertaking media engagements.

Implement media training that is co-designed and tailored to the needs of advocates with lived experience

The media training should be co-designed and co-delivered with lived experience advocates to ensure it best addresses their learning needs and follows best practice to involve end-users in development processes (Esmail et al., 2015). The expertise of advocates who have significant media engagement experience should be drawn upon in co-delivery of media training and also in peer mentoring. Additionally, offering ongoing professional development opportunities can be expected to increase engagement and the sense of community within the advocacy group and encourage informal peer support among advocates around undertaking media engagements.

Implement interventions targeting media professionals for engaging with people with lived experience of complex mental illness

Existing guidelines for media professionals on interviewing people with lived experience of mental illness (Everymind, 2023) should be updated to include the open, flexible and transparent approach requested by lived experience advocates in this study. These guidelines could then be distributed by mental health advocacy organisations to media professionals upon request to interview a lived experience advocate. Such an approach would help mental health advocacy organisations to encourage these supportive practices by communicating expectations to journalists to sensitively and transparently engage with lived experience advocates prior to undertaking the media engagement.

Support advocates with lived experience in undertaking media engagements

Based on the findings in this study, support from advocacy organisations should include:

1. Routinely contacting lived experience advocates following their participation in a media interview and the publication of resulting news piece to provide an opportunity to debrief and to connect with professional mental health support if this is indicated.

2. Providing assistance in communicating with journalists throughout the media engagement to ensure there is transparency around media processes, including setting up the interview, understanding the reasons for doing the story and the intended story angle, and following up about publication status.

3. Directly communicating with media professionals about how they can best support lived experience advocates in their preparation for and undertaking the media interview, including any flexibility they can provide to foster a more supportive experience for lived experience advocates.

4. Screening of media requests to ensure these are a good fit with the advocacy aims, and also match the advocates’ experiences and perspectives.

5. Offering support to lived experience advocates in undertaking TV and radio interviews by having a support person from the advocacy organisation present, and as agreed by the advocate.

6. Ensuring diversity among lived experience advocates who are offered the opportunity to share their lived experiences through media engagements.

Implications for future research

Following the development and implementation of media training for lived experience advocates, it should be evaluated to determine if it is addressing their needs. Obtaining feedback about the training is also important to ensure that it evolves to continue meeting the changing needs of lived experience advocates in preparing for media engagements.

In encouraging flexibility and transparency from journalists in conducting media engagements with lived experience advocates, it is also important to understand journalists’ perspectives on how feasible this might be to accommodate. Future research should explore how journalists sensitively engage with people with lived experience, and the constraints they need to work within to publish these stories.

Prior research has also noted that feedback about the impact of sharing lived experience stories is often not obtained, and the person sharing their experience does not receive any direct feedback about the impact generated by their advocacy work (Wayland et al., 2020). Future research should investigate the impact of lived experience advocates’ media stories on public understanding and attitudes towards people with complex mental illness. Doing so would allow advocates to receive feedback regarding their impact, and could also help to determine the elements of lived experience stories more broadly that more strongly influence public attitudes.

Conclusions

Advocacy roles can empower people with lived experience of complex mental illness to share their experiences and perspectives to increase community understanding and challenge public stigma. Media engagements provide a platform that empowers people with lived experience, and provides a highly valued opportunity to reach large audiences and generate a widespread impact on awareness and public stigma. Journalist understanding of mental illness, as well as their openness, flexibility and transparency in media processes and motivations for undertaking the interview all contribute to positive media engagement experiences. Advocacy organisations can encourage these supportive practices by communicating expectations to journalists to sensitively and transparently engage with lived experience advocates. Preparation and support for lived experience advocates surrounding media engagements is essential. This should include providing media training that is co-designed and tailored to the advocates’ needs, and providing support throughout and following the media engagement process.

Improved practices should focus on increasing the support and training provided to lived experience advocates to best equip them for undertaking media engagements. Proactively creating additional media opportunities can be expected to increase the reach and impact, as well as the diversity, of lived experience stories being shared. Future research should evaluate media training to ensure it addresses the needs of lived experience advocates, monitor trends in their media participation, and evaluate the impact of lived experience stories on community understanding of and attitudes towards people with complex mental illness.

Acknowledgements

The researchers wish to thank Kara Dickson for her assistance with double-coding of transcripts.

Disclosure statement

Nicola J. Reavley is affiliated with SANE through the Anne Deveson Research Centre; however, she is not an employee of SANE and does not receive any potential financial benefit from the research. To remove any potential conflict of interest, data analysis was overseen by Anna M. Ross and Amy J. Morgan.

Additional information

Funding

This research was supported and funded by SANE StigmaWatch, with partial funding provided by Mindframe, an Everymind program.

Appendix: interview guide for exploring Peer Ambassadors’ experiences with media engagement

Semi-structured interview questions

1. Can you describe your experiences of talking with journalists about your lived experience?

   1. Prompts: Roughly how many interviews have you been involved with?

   2. Who were they with?

   3. Did you receive support from SANE to prepare for and during these media engagements? Can you give me some details?

   4. Did the journalist/s discuss your experiences respectfully and appropriately?

   5. What did you think of the resulting media piece?

   6. Were you asked to provide feedback on a draft before the final copy was published?

2. Reflecting on these past media engagement experiences:

   1. What stands out as being ‘good practice’ in these experiences, and something you would like to keep happening for future media engagements?

   2. Is there anything that stands out as something you didn’t like or could be improved for future media engagements?

3. Reflecting on the SANE media training and support for your media engagements:

   1. How did this prepare you for your media engagements?

      1. Prompts: Did you feel well prepared? Under prepared?

   2. How else would you like to be prepared for future media engagements?

      1. Prompts: Is there anything that should be covered in the media training that wasn’t covered?