Perspectives on lived experience leadership; values, qualities and skills for effective leaders of systems change: participatory action research

doi:10.21203/rs.3.rs-3226155/v1

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Research Article

Perspectives on lived experience leadership; values, qualities and skills for effective leaders of systems change: participatory action research

https://doi.org/10.21203/rs.3.rs-3226155/v1

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Background:

The aim of this study was to identify and explore the values, qualities and skills that constitute mental health lived experience leadership, from the perspectives of emerging and accomplished lived experience leaders and allies.

Methods:

As a part of a larger lived experience led participatory action research project, multiple qualitative methods were used. These included focus group discussions and an online forum with 31 diverse lived experience leader participants, and a separate online qualitative survey, which was completed by 48 respondents from various urban, regional and rural settings. Participants included consumer and carer leaders. All data was collected in 2020, coded and thematically analysed.

Results:

The analysis of data showed the complexity of activity and accompanying values, qualities and skills that are perceived to be important features of lived experience leadership.

These features are described via six themes: 1) stands up and speaks out, 2) lived experience lens and positioning, 3) champions justice, 4) creates and nurtures safe and connected spaces, 5) leads and inspires change, and 6) being strategic in mobilising.

Conclusion:

This study extends understandings of lived experience leadership by emphasising its importance in guiding the development of the peer workforce, systems advocacy and community-based mental health initiatives. Defining the key elements of lived experience leadership contributes to training and reflective learning for emerging leaders and creating shared understanding and recognition for other service and sector leaders across the broader mental health ecosystem.

Lived experience leadership

transformational leadership

lived experience

systems change

peer workforce

consumer leadership

Lived experience leadership in mental health is an umbrella term used to describe the leadership of consumers and carers, who seek change and reform within, and across the sector. It reflects the growing movement of lived experience activism and workforce in Australia, which is made up of consumers or carers working in designated peer support, team leader, project officer, policy consultant or academic roles, or consumers and carers operating in voluntary advisory roles within service decision making, service governance, or policy forums (Byrne et al., 2019). While some leaders hold designated lived experience roles, others may work as allies supporting the lived experience movement and workforce. Lived experience leadership is also a feature of the suicide prevention area, where a growing range of peer led supports (Schlichthorst et al., 2020) are available, as well as significant efforts in advocacy and community awareness raising (National Action Alliance for Suicide Prevention: Suicide Attempt Survivors Task Force, 2014).

While the broader lived experience term is inclusive of carers and family perspectives, much of the activity and intellectual basis of lived experience is grounded in consumer/user/survivor perspective. As such, there are writers and advocates who prefer that lived experience leadership is recognised as either consumer or carer leadership, so that the perspectives of each group are distinct and represent specific interests. It’s also to prevent governments from assuming that one voice will speak for the other and conflating interests and representation (National Consumer and Carer Forum 2004). For clarity, we will use published authors terms for leadership when referring to academic writings below, but will use the broader term, lived experience leadership when referring to the present study.

To date, most of the literature in the lived experience leadership area is framed as consumer leadership (Scholz, Gordon & Happell 2017), and is written referring to the psychiatric survivors and consumer movements. One important observation is that concerns about psychiatric power, experience of oppression and injustice, and of trauma are anchored as critical analysis within consumer perspectives, and a fundamental aspect of seeking change (Byrne & Wykes 2020). Naming the organised activity of consumers as ‘leadership’ is an important paradigm shift as Sarah Gordon (2005) has argued. This recasts the positioning of consumers from being service users within a context of engagement and participation, to leaders who are recognised as being able to lead and manage organisations and services. Mary O'Hagan (2009) also worked from this perspective in her model of user/survivor leadership, noting that user/survivor leadership can be personal, for one’s own health, can be community focused for building networks and local service development, or it can be systems change focused. This model also outlined important qualities and competencies that are seen to constitute consumer leadership.

The broad scope of consumer leadership was clearly articulated within a review by Scholz, Gordon and Happell (2017). Here, described themes of consumer leadership were reflected in activities in the USA context where many consumer run organisations provide peer support, community education, and systems advocacy services. Consumer leadership was described in relation to the cultural values and organisation of the peer movement; organisational leaders who can act on values of mutuality, empowerment and nurturing of members, by building participatory organisations and volunteer pathways to enable members to become active in peer support, administration or governance.

In Australia, Stewart et al. (2019) qualitative study highlights that consumer leadership has yet to be fully defined and argue that it is commonly referenced in respect to 1) common consumer roles (peer support, advocate, educator, researcher etc), 2) requirements to be a leader (lived experience and leadership capability), 3) purpose in enacting change, increasing influence and growth of the movement and 4) process, applying lived experience, building relationship and strengthening peer culture. In a more recent qualitative analysis, Stewart et al. (2023) developed a detailed analysis of consumer leadership which focused on analysis of power, self and lived experience identity. In their analysis, leadership occurs through leader’s own power of self, which emerges through personal lived experience, rejection of coercion and ‘power over others’ dynamics, awareness of systemic issues and collective knowledge of the movement. Consumer leadership can harness institutional power but occurs independently of this. Consumer leadership occurs via a unique power of self that provides authority of knowledge, provides influence and direction, motivation to act, and forms alliances through mutual recognition.

These studies provide important theorisation of roles and social processes that improve understanding of consumer leadership and its positioning for change. Stewart et al. (2023) note that consumer leadership occurs informally and inside and outside of organisations making up the mental health sector, highlighting its independence in the services context. This last point reflects that consumer leadership born from personal health experience, and which challenges professional paradiagms and practices, needs to be understood as social movement leadership (Campbell 2020; removed for blind review): one which is based in collective knowledge and values of consumer perspective and operates at systems levels. Seeing consumer and carer leadership from the Australian context of public mental health services can be limiting, as it may exclude a wider view, where leadership occurs in less formal, peer to peer relationships; in local groups and networks and advocacy efforts. It can also limit awareness of systems level action, where leaders can establish jurisdictional peak bodies, prompt peer service funding streams and set up stand alone peer organisations.

The rationale for this project is to address the lack of recognition of lived experience leadership skills and what leaders can bring to policy development, organisational governance and service management. The study also seeks to provide a point of reference and reflection for lived experience leaders about the values, qualities and skills evident in leadership, and possibilities for growth.

The ALEL study

The present study occurred within the South Australian Activating Lived Experience Leadership Project (ALEL). This was a participatory action research (PAR) project undertaken by the South Australian Lived Experience Leadership and Advocacy Network (LELAN) and the Mental Health and Suicide Prevention Research and Education Group (MHSPRE) at the University of South Australia. Funding was provided by the Fay Fuller Foundation. The role of the project was to prompt systems change in the way that lived experience leadership is recognised, valued and embedded across mental health and social sectors. A central feature of this work was working with existing lived experience leaders to define how lived experience is understood and enacted, so that a shared understanding of expectations could be included by other sector leaders and funders, as well as shared internally across the peer community. Interviews with sector leaders and service managers also occurred, which combined to generate a subset of data and analysis on the industry level (removed for blind review). This was eventually developed via PAR into a model of lived experience leadership (removed for blind review).

Study aim

To identify and explore the values, qualities and skills that define lived experience leadership, from the perspective of emerging and experience lived experience leaders.

This study focuses on the qualitative analysis of the views of lived experience leaders on defining lived experience leadership, which were generated for the ALEL project. While this analysis was completed as part of the above project and reported, it is yet to be published in detailed, peer reviewed context. To assist, the Consolidated Criteria for Reporting Qualitative Research (COREQ) framework has been used to report the methods and results of this study (Tong, Sainsbury & Craig 2007).

Approach

It is important to clarify that we are writing and exploring about lived experience leadership as a means of promoting shared knowledge for, with and by the lived experience community. We believe that researching and conceptualising lived experience leadership is important for shared learning and recognition, so we can use the knowledge internally for training and reflection, and for promoting awareness by other mental health leaders, policy makers, politicians and the wider community. Taking a wider social movement approach provides a powerful perspective for seeing lived experience leadership across private and public spaces, beyond as well as within formal organisational roles. However, we are careful to avoid a distancing, sociological gaze on what leaders do and how they see themselves; rather it is about producing concepts and insights that point to a collective experience of leadership and how it might be understood and enacted. We were aware that lived experience leadership can be defined in many ways, including as the literature above indicates, via roles, activities, purpose, and processes. As a collective project, the author group and ALEL Advisory Group decided to frame the key questions as focusing on values, qualities and skills of effective lived experience leadership, and staying strong in this context.

Research approach and design:

The project was conceived as a lived experience led PAR study with both Project (EH) and Research Leads (ML) being in designated lived experience positions. PAR was chosen due to its alignment with peer values as a potentially emancipatory approach to knowledge development and action benefiting people most affected by the problems being studied (Cordeiro & Soares 2018; Schneider 2012). It was also chosen because of project aims, which were to prompt awareness and change among sector leaders, and encourage leaders to work together for collective impact. PAR would enable both community level research and sector development actions, where leaders could reflect and act on research findings on the systems level. Participatory aspects of the research occurred via several processes within the methodology. Prior to the focus groups being conducted expressions of interest were sought for a lived experience/sector level Project Advisory Group (PAG) to engage with the research team as co-researchers for the duration of the project. 12 people were selected to join the PAG and those who were not doing so as part of their work role were reimbursed for their time and expertise. The study design, recruitment materials and focus group processes and discussion questions were designed via the PAG. The group featured seven lived experience leaders and five mental health policy and sector leaders. The PAG then guided the implementation and reach of the project, including promoting recruitment, and engaging in contextual analysis of emerging focus group findings.

Focus group and online discussion forum

Focus group discussions were used to engage lived experience leaders in discussion about the projects aims and questions. This involved an initial round of organised online focus group interviews (via a video conferencing platform), with participants choosing groups based on dates, or focus, specifically, rural SA and LGBTIQ+. Focus groups were semi-structured and were guided by a focus group protocol developed with the PAG and research team. FGs were conducted by authors A and B. The discussion topics included areas such as participants experiences of lived experience advocacy, involvement, leadership, qualities, and values. Participants were asked to comment on challenges in the lived experience leadership area as well as positive experiences. 31 participants were involved in seven first round focus groups, with 25 people identifying as consumer leaders and six identifying from a family/carer perspective. Following the first online focus group an anonymous online forum (participants were double blinded) using the Vbulletin platform was then established to enable sharing of emerging themes, reflection and extension by participants across all focus groups and the research team1. A second round of online focus groups was then held to deepen discussions and consider further aspects of network development and learning. The focus groups were attended by participants and researchers only; researchers took field notes during the focus groups to supplement the audio-recorded-data and document nonverbal observations.

Anonymous online survey

To augment the focus groups data (and interview data that is reported elsewhere) the research team added a national online survey data generation strategy to the project. This was created to enable participation from lived experience leaders from other states and territories and broaden the range of data available to the study. The survey was developed on the platform SurveyMonkey and based on existing focus group questions; seeking text-based responses to questions on definitions of lived experience leadership, and skills and qualities required across peer support and advocacy contexts. The survey also included six descriptive questions about demographics and the length of time active in lived experience leadership. The qualitative approach to the survey was preferred as it enabled leaders to respond in their preferred language. Respondents did not have to answer questions to move through the survey, and thus response numbers for each question varied. The survey was piloted by members of the PAG and then open for responses for six weeks in late 2020. 48 responses were received in this time.

Comparison demographics between focus group and survey participants can be seen in Tables 1.

Table 1

Focus group and survey participants demographics
Age	FG	Survey
18–24	2	1
25–34	9
35–44	4
45–54	11
55–64	1
25–64 *		45
65+		2
Gender
Nonbinary or prefer to self-describe	3	3
Female	19	36
Male	5	4
Identify as member of LGBTIQ + community	12	6
Cultural background
First nations person	1	3
Culturally and linguistically diverse background person	2	3
Do you consider yourself to live with a disability or impairment?
Yes	13
No	14
Reside in
Metro SA area	23	38
Regional or rural	4	10
SA		24
NSW		7
ACT		6
VIC, QLD and WA		9
Lived experience
I have personal lived experience.	25	44
I care for, love and/or support someone who experiences mental health issues.	13	16
I am a lived experience advocate or representative on committee/s and project/s.	19
I am a lived experience community speaker or peer educator.	10
I am in a paid lived experience role.	15
I am a clinician, practitioner or community worker.	4
I am a service leader who enables lived experience engagement and partnership (please list professional background)	4
What is the length of time you have been active as a peer, representative, advocate or community educator?
under 1 year	2	4
1–2 years	3	5
3–4 years	9	6
5–9 years	8	15
10–14 years	2	11
15–19	1	2
20+	2	5
*The online survey (n = 48) participants ages were captured from a broad range rather than a more nuanced age range.

Participants and recruitment

All research processes were approved by the University of South Australia Human Research Ethics Committee: Project no 202513. The recruitment strategy for focus group participants sought to engage a diverse group of leaders, aged 15 + to the project. This includes people active in public mental health and suicide prevention, and within community networks. Advertisements through websites, social media and email invited people active as advocates, advisors, educators, peer support workers or project officers, in rural and metropolitan contexts. Participants were given extensive information about the research and the researchers involved (including their status as lived experience) and their qualifications and reasons for conducting the research. The project chose to work under the broader concept of lived experience, and thus people identifying as consumers, or carers could participate. This decision reflected the close working relationship between consumer and carers within SA’s lived experience workforce movement, and within advisory structures (Mental Health Coalition of SA, 2021). A deliberately broad definition of lived experience was also used to engage people active in LGBTIQ and disability contexts, whose work focused on both community issues and mental health and wellbeing. Phone based conversations with potential participants were used to clarify that participants were active in meaningful lived experience leadership capacities. Demographic information about the participants is included in Table 1.

Recruiting for the research occurred by advertisement through various information networks and e newsletters, and through social media. A purposive snowballing approach enabled participants and PAG members to promote the opportunities among peers. The survey was provided via similar channels in South Australia and via numerous consumer and carer peak bodies in other States and Territories. Permission to promote the focus groups and survey was sought from each NGO in respect to promoting through their membership networks.

Data collection for focus groups

Focus groups were held online during April to October 2020, in the context of the COVID 19 Pandemic. These used the Zoom platform and were co-facilitated by EH and ML. Each group was 90 minutes long, and participant numbers ranged from 2 to 7. The groups were facilitated in acknowledgment of key values of the peer movement and lived experience perspective. Reflective summaries were offered at the end of each session (EH). All focus group conversations were audio recorded and transcribed by a professional transcription service which were required to sign a confidentiality agreement. Privacy and anonymity requirements were in place which guided focus group selection for some participants. As focus groups were completed and transcripts analysed, emerging findings were posted onto the online forum, with the respective participants invited to review findings, offer reflections, and ask further questions. The forum achieved modest engagement over a 2-month period and added important insights to the project. All participants remained engaged with the project and did not withdraw. Researchers agreed that data saturation had been met after seven first round focus groups followed by the online forum and four second round focus groups. See Fig. 1 for Code table.

Data analysis for all qualitative data

Data from focus groups transcriptions and online forum posts were coded and analysed in a separate data set than survey responses. Each data set was coded by ML within NVIVO software. A higher integrative analysis was then used to develop themes (from the data) and align coding topics from each source, strengthening the overall analysis and depth of saturation reached. Having a richer range of data enabled the significance and prevalence of ideas to stand out within the overall analysis, which then were summarised as themes for further sharing and reflection within the advisory group. The development of leading codes used phrases and language of participants, which signified key meanings about lived experience leadership values, qualities and skills.

Given that sample groups had low numbers of identified carers (FG n = 6 and SR n = 4) the researchers did not proceed with a separate analysis for carer data. Rather, the perspectives that carers contributed were integrated across themes, with the researchers mindful of checking if any themes related to carers only. This was not apparent in the analysis and overall, carer perspectives contributed across the subthemes.

Being a PAR based project, the analysis was grounded in shared meanings of lived experience, rather than in sociological analysis or within health discipline perspectives. As insider focused research (Russo 2012), the meanings shared by participants and respondents were interpreted from the basis of consumer perspective, as a collective knowledge and values base. This included the researchers’ own personal/professional experience of seeking or leading change processes in mental health. Further guidance was provided by systems change approach (Kania, Kramer & Senge 2018), with a focus on cultural, structural and relational aspects of the system in which lived experience leadership takes place.

In terms of demographic details, focus group participants were all from South Australia, whereas survey participants came from a national pool. Most participants for both groups were female (FG: 19/31; S:36/48) with three in each group reporting as non-binary. LGBTIQ + community members were more prevalent in the focus group, than survey groups (FG: 12/31; S: 6/48). Most participants from the focus groups and surveys reported having personal lived experience and about a third of participants reported caring for or supporting someone with lived experience. The period reported with each group for being active in lived experience leadership varied from under one year to 20 + years with the majority being between three and 10 + years.

[place Table 1 here]

[1] Vbulletin was recommended by the University of South Australia cybersecurity officer.

The work of analysing and summarising the rich range of participant data into main themes was challenging given the breadth of named values, qualities and skills. Subthemes were grouped where there was a meaningful connection between related characteristics and qualities of what was said to be important in lived experience leadership. Key phrases made by participants were used as titles of most themes (in italics). Summarised into six themes; the complexity of what leaders do, how they do it and what skills and qualities they bring to this work, is evident across each of the themes.

The six themes are: 1) stands up and speaks out, 2) lived experience lens and positioning, 3) champions justice, 4) creates and nurtures safe and connected spaces, 5) leads and inspires change, and 6) strategic in mobilising. We use quotes to illustrate meanings, identifying contributions from focus group participants, survey respondents, and online forum participants.

[place Fig. 1 here]

Stands up and speaks out

The first theme resulting from our interpretive analysis is stands up and speaks out. This theme reflects that participants saw meaningful lived experience leadership as standing up to seek change, where leaders share experience and name critical issues from a consumer or carer perspective. Participants saw the role of standing up and speaking out as driven by a clear purpose for change, often in the context of recovery principles.

As I am passionate about having meaning and purpose in my life. it is important to be able to lead by example. (Respondent 82)

And I know there’s risk of burnout and all that, when you keep doing things, but I guess some things, you are passionate about. And you’ve been hurt by the system, you’ve been let down, so you want to make that change and at all costs. (Participant 20)

Putting your hand up - stepping forward and finding the courage to say what needs to be said. (Respondent 1)

Often, participants described lived experience leadership as being tied to effective uses of personal stories and naming issues, but in terms of speaking roles that connect with collective experience of recovery and service use. As many participants came to lived experience roles through public speaking and awareness raising roles, the speaking out role intrinsically reveals aspects of self and service use, recovery, or other social issues, requiring leaders to ‘stand tall’ in terms of other’s perceptions.

And, I think, you need to have that if…you are going to be a leader in a lived experience [role], I think, you need to own it and just be proud and stand tall. Yeah. (Participant 13)

Participants identified passion and conviction as a driving force for what they do:

You know, for me, yeah, it’s someone that’s passionate about this particular area and is willing to speak up for them people that have the same sort of stories or similar stories to yourself that just maybe are experiencing some of the same struggles that you did with getting the right supports (Participant 13)

Passion. I don't think I would have gone into this if I didn't really care about the people that we work with and that sharing of experience is such a powerful thing. (Participant 15)

Stands up and speaks out also reflects, that the contexts of raising difficult experiences, challenging discrimination, or having critical points to say, is not easy and often takes place in contexts of possible stigma, such as speaking to a sports club about suicide, or in unequal power relations, such as raising concerns on a mental health committee, or to your employer. This raises the last point; lived experience leadership requires great courage, persistence and determination.

…it really relies very heavily on individuals to have the courage and the strength and the power themselves to be able to push for these changes. (Participant 31)

But advocacy also requires extra courage to stand up and argue the toss, sometimes when you're the only one in the room thinking the way you do. (Respondent 18)

Lived experience lens and positioning

Participants saw lived experience leadership as action which ‘centres lived experience.’ This was a key theme as the involvement and impact of leaders was seen as driven not only by the personal story, but by collective experience and issues of injustice. The importance of the work of leaders being expressed and articulated through a lived experience lens occurs via several qualities: bringing unique and different perspectives, being authentic and accountable, staying true to peer values, appreciating strength in vulnerability and works across diverse groups to promote intersectionality and inclusion.

All these aspects also reflect shared experience and layers of insight into the impacts of the mental health system as service users, of being ‘othered’, and of the recovery movement

…it’s giving us another lens…It has a whole other lens that we didn’t even know that we didn’t have and now we can see things in a whole different way…I’m not disregarding the accumulated knowledge that people can get from doing degrees and from studying, but the lens that you can get from living it, is a…another way of looking at how to support these people… (Participant 13)

Using your personal experiences in a way that influences everything you do at work and in the community. Putting on that lens in decision making, working with clients and advocating. (Respondent 40)

Being guided by and accountable to peer values, and seeing leaders display authenticity and accountability - stay true to peer values was a feature of centring a lived experience perspective for many participants:

LE leadership needs to stay true to peer values of openness, mutuality, kindness and compassion…LE leadership in name only can go wrong when people in roles do not act with kindness (Participant 7).

So, they’re the things that for me, maintaining that integrity, that openness and honesty but in a purposeful way, has been the way that I like to get the message across. (Participant 2)

Part of this is about accountability to recovery principles,

And, I think, as well is what a value this would be but walking the talk…so if I’m going to be advocating for something, I’ve got to damn well be trying to live that in my own life like, you know, I think that needs to coincide with each other. (Participant 13)

But, as some participants highlighted, staying true to peer values is ensuring that leaders’ messages and actions are anchored in the knowledge and themes of the lived experience community movement, and not being diluted or co-opted by dominant biomedical perspectives.

Participants point out that the uniqueness of a lived experience lens related to strength in vulnerability. They saw this as shared experience within personal recovery, in terms of acceptance and struggle, and in watching how leaders engaged with others or put themselves out there to convey key messages for change.

And so, I was seeing that as a common denominator when I was doing my little skating around meeting people and that I was able to be vulnerable, that I could be vulnerable and say, “That's my reality too” …and to talk about the grief process and how I’ve processed that and how sad that is but that’s the reality so…(Participant 8)

…if we have a leader who is stuck in their ways, who is refusing to be vulnerable, who is not engaging with us in a present, vulnerable way, then how can we effectively support ourselves and support other people to be engaging. (Participant 3)

Many participants spoke that works across diverse groups was a feature of their work, most notable for people working in LGBTIQ + advocacy and peer spaces, or people active in multicultural community networks. This reflected values and aspirations of promoting intersectionality and inclusion, but also sparked conversations about the challenges involved, and allyship:

…we’re really conscious with our staff not to replicate what we speak against with tokenism, so not having one sole space for any other intersection of identity and experience, because we hate when we’re the token, type thing. (Participant 23)

...it’s interesting; from an advocacy perspective I wonder whether even calling myself a lived experience advocate is accurate because often the issues I’m advocating about are things that I don’t have lived experience of myself, for example, advocating for the trans and gender diverse community, that’s certainly not my lived experience; so I certainly fall into that category of being an ally rather than a lived experience advocate in those sorts of spaces. (Participant 23)

Lived experience leadership needs to reflect an authentic standpoint and maintain consumer or carer perspectives as well as intersectional experiences relating to mental health, culture, gender, sexuality, disability and geographic area. There were perspectives offered which saw the lived experience movement as anchored in social justice, which consolidated views around challenging marginalization, existing power relations and under recognition of identity. This was especially prominent for leaders acting across the intersections of LGBTIQ + community experience, and mental health but also evident across the participant group.

The first follower is the most important part of creating a movement, and lived experience work/advocacy IS a movement - a social justice one. (Respondent 17)

Champions justice

In exploring peoples’ motivations, stories, and perspectives on lived experience leadership, the theme of championing justice was clear. This was about the reasons for getting involved, as well as the work and goals of lived experience leadership activity. Our interpretation included the sub themes of, challenging stigma and discrimination, fighting for rights and justice, working to rebalance power and advocate for involvement, coproduction and lived experience leadership in policy and services. All of these relate to describing and responding to situations seen as unfair and harmful and formulating positions on what action should occur:

...you also mentioned unjust and that strikes a chord with me. I’ve always felt the need to fight when I feel something is unjust…seeing, as you said, the policies not being followed or there is actually no accountability whatsoever. And then you go, “Holy shit,” and that really spikes that passion and that drive for you to fight. (Participant 3)

Leadership [needs to be] underpinned by principles such as collectivism and epistemic justice, informed by experiences of distress and mental health challenges and experiences of treatment and care within mental health services. (Respondent 16)

Working to rebalance power and advocate for involvement, coproduction and leadership in decision making was clear across the key messages that leaders reported using, alongside rationales about the purpose of lived experience leadership. Rebalancing power occurs through promoting involvement, coproduction or consumer led action:

It's only co-production if the person/people with lived experience say(s), so let's dismantle the power imbalances in this space. (Respondent 26)

Social and systemic change will be led by lived experience advocates. (Respondent 2)

Nothing about us, without us - from the disability movement; and leadership is the gateway to understanding this from the outset. (Respondent 48)

Creates and nurtures safe and connected spaces

Standout themes from the data were that lived experience leaders foster empathy and connection, share experience and recognise others, create safe spaces to talk and promote empowering and healing spaces. These qualities and actions were grounded in leaders’ recognition and expression of shared experience, which then offered others connection and reflection about their own lives and what they had been through. Many participants talked about this as the heart of peer connectedness, as a basis of peer support work, sharing on hope and recovery, and as the catalyst for creating shared awareness during community conversations. Empathy and connection are also enabled due to leaders having fewer formal boundaries or power hierarchies in relating to other consumers or carers. This especially occurs where conversations take place on informal levels. Mutually to share experiences and recognise others allows people to form a trusting connection; people new to the space can form a connection and understand that they are not isolated in their pain, shame or self-blame, but have similar experience. These conversations can bring connection and validation.

Empathy through shared experience. A greater level of social engagement because there is less division between worker/participant. By bonding over shared experiences, we are more capable of advocating for change. (Respondent 3)

So in terms of how would [I] define a lived experience leader, I think genuine is a really key word to it; it’s someone who’s willing to share their experience, what they’ve been through and is able to be empathetic and genuine with the person or with the community who they’re working with, and I think the comment was made that ‘you get it’, ‘you understand it because you’re a peer’. I think that for me is really at the heart of it. (Participant 23)

Many participants related empathy and connection with the work of nurturing and creating safe spaces to talk. These occur on one-to-one levels in terms of creating space for sharing with other consumers, or colleagues, in supportive conversations, and in group and organisational levels. Creating and holding peer spaces enables consumers and carers to speak about experience beyond the usual language and understandings of mental health services, where people can explore experience in non-diagnostic or stereotypical terms, question their experience, and converse in non-formal settings. Creating and holding space for voices to be heard also occurs during committee meetings, in policy development or in community conversations about suicide prevention; voices that ‘say what needs to be said’ to challenge, prompt change, and offer a more hopeful future. Creating safe enough spaces to talk also encourages empowering spaces for others to develop their own voice and perspective.

Lived experience leadership is creating opportunities for others to share their lived experience. It can involve working within a system to create opportunities... (Respondent 14)

Creates safe spaces to talk is a part of promotes empowering and healing spaces. This means using influence to establish conditions and expectations which value lived experience and supports people to gain confidence and develop their own power and influence.

A lived experience leader is someone that changes and shapes culture, a culture that supports best practice and puts Lived Experience at the forefront of practice. (Online forum participant 1)

Leads and inspires change

So, leadership for me is…about still trying to inspire that vision for the team to follow or to lead from behind, depending on what the scenario reaches for. (Participant 5)

This theme expresses key meanings associated with the way that leaders prompt, enable and influence change. Leaders can communicate and inspires hope and vision to create purpose and lift awareness from current ways of thinking, and current circumstances towards standards and values that need upholding, including types of supports and services that are/should be available. Leaders are able to communicate a vision shared by local consumers within the community around recovery, rights and citizenship.

In this sense a leader formulates ideas and solutions for issues and service problems that reflect lived experience expertise and respond to shared interests and concerns. This occurs in informal peer networks, in peer work service contexts, in local service design and in policy, systems and legislation. Advocacy occurs across all these spaces where solutions need to be negotiated with service leaders or other decision makers, as above, leaders work with allies and mobilise groups, networks, and other leaders to support the change process.

A part of leading change is the skill of communicating with influence across these settings:

Communication is a vital leadership skill, yet what is perceived as effective communication changes within the diverse contexts within which we operate as "leaders". (It’s) not always a work-related or paid role. There is much unsung, implicit, unacknowledged leadership/role modelling going on in private spheres too. (Online forum participant 2)

[Leaders] They’re influential people. They influence lives and they’re not doing it for financial gain. They’re doing it for our wellbeing, their wellbeing, for quality of life, and a basic human right, again, that we all deserve. (Participant 20)

In formulating ideas and solutions, and having influence, leaders are seen as needing skills to think deeply and reflect on learning. This is tied to listening and learning from situations, dealing with dilemmas, and sitting with discomfort.

I need to feel with a leader that I’m safe to come to them with the faults of the system with the challenges and the pressures that we’re under and to have them be able to reflect on the system, reflect on the organisation, reflect on themselves…as well as supporting me to reflect on myself and all those things. (Participant 3)

I think we all know that good leaders never stop learning. (Online forum participant 3)

Strategic in mobilising

Lived experience leadership in the area of mental health has the skills to mobilise community consciousness and demand a fair go for others and is able to advocate in micro and macro-organisations and institutions. (Respondent 36)

And I think that leadership is that person who brings all of the different parts of lived experience together, who builds those networks, and I also think it’s about who is strategic and thoughtful in how we can mobilise. (Participant 1)

This theme captures the actions of leaders which mobilise communities for change, seeking to create critical mass, strengthen influence and centre power. Effective leaders are seen to build, and support, lived experience networks, and activate and organise for collective responses to common issues. As suggested, this can occur locally in specific services, more regionally, or on state, national, or international levels. It can relate to specific areas of lived experience and intersectionality. Mobilisation can occur for setting up supports and recovery spaces, and for creating change in local/regional services. Many participants raised that lived experience leadership is systems level active and connects consumers/carers to policy, funding and planning levels of decision making. Leaders mobilise via communication channels, information networks, events and advocacy initiatives, via roles as activist, systems advocate, policy leader, peer leader or community educator. Peak body activity and working with allies is also a part of mobilising.

The skill in ‘being strategic’ occurs in planning and mobilising and was a part of subtheme about working for big picture and long-term change. This reflected the strategic thinking required for influence as well as shaping the responses of other mental health leaders, managers, or committees.

Sort of like the waves having to wear away at the big cliff over many years and sometimes you can just feel [like] one voice, but you know that you're contributing to a much larger group of many voices. And we're slowly trying to erode these highly medicalised clinical environments and disrupting wherever we can as we go. But it's such a long game. (Participant 30)

The other aspect of being strategic was working with the very significant complexities most often involved in lived experience leadership activities. Leaders navigate personal and public spaces, using personal experience on public levels, and often operating in unpaid voluntary peer or activist spaces. Setting up Facebook support groups, communication networks, or arranging local support meetings means that leaders work in informal ways and often see this capacity as a strength. Leaders are also active in public spaces, in suicide prevention networks and activities, on policy committees, or employed in designated positions. Working in defined lived experience roles and making strategic decisions within these is a constant navigation of personal/public boundaries, processing ways to work through barriers, and planning to negotiate change. The work is multifaceted, and points to ‘the calling’ that many leaders experience and to the burden of responsibility that comes with it.

Yes, lived experience is 24/7 unfortunately. In my work I’m only contracted for 12 hours a week, but I actually put my work hat – my work hat is actually on by default 24/7 because everybody knows me, everybody knows who I work for. (Participant 18).

[2] Focus group participants are referred to as ‘participants’; Survey respondents are referred to as ‘respondents’; Online forum participants are referred to as ‘online forum participants’.

This study is a valuable contribution to defining lived experience leadership as it draws solely on lived experience perspectives in articulating the central values, qualities and skills of effective lived experience leadership. It is also somewhat unique in that the framing of the study design and analysis has been guided by insider perspectives. This means that the directions of data generation, and analysis have been guided by the lived experience perspective, rather than being expressed via sociological, or clinical set of interests (Jones & Brown 2013). The intent of the study has been to define lived experience leadership from this perspective so that it can be better recognised, valued and embedded across mental health and social sectors. A focus on systems change and social movement analysis has been used to guide the conception and the analysis of data in the research and contributes to the following discussion.

The six themes of the findings; 1) stands up and speaks out, 2) lived experience lens and positioning, 3) champions justice, 4) creates and nurtures safe and connected spaces, 5) leads and inspires change and 6) strategic in mobilising, reflect important interconnected dimensions of effective lived experience leadership and can contribute significantly to a clear definition in the literature and in communities. Gaining clarity of expectations is important, as Stewart et al. (2019) have observed. Diffuse and contradictory expectations on lived experience leadership across mental health sector/services, creates tensions between leadership and consumer involvement concepts, representation of others and whether lived experience leaders need to have direct influence over institutional power.

Our analysis hasn’t explored these tensions directly but does highlight critical characteristics of lived experience leadership that are noted in recent literature. These include leadership which is active across informal, community and formal organisational settings (Waddingham 2021), and the internal calling, passion and personal power, grounded in lived experience lens and critical insight, that drive lived experience leadership. This relates to what Stewart et al. (2023) describe as the ‘power of self’ as the grounding the authority and direction of lived experience leadership.

Our emphasis in the research project was to be able to describe the values, qualities, and skills so that emerging leaders can have clear expectations for their focus and development. This has led to the themes being used to develop a model of lived experience leadership, and subsequent training activities and workshops (removed for blind review). It was also completed to enable better recognition and understanding on the part of other leaders in mental health and social sectors. This as, other researchers and writers have discussed, is critical for enabling supportive understandings on the advocacy work that leaders provide, including the strong sense of purpose for change and fighting injustice (O'Hagan 2009), and the efforts to mobilise with diverse groups and work collectively (Campbell 2020; Kalathil 2013). These aspects draw attention to the paradigm conflicts that occur in mental health systems, services and research (Beresford 2020; Jones & Brown 2013), where lived experience leaders are seeking to voice concerns, create space for others to engage in decision making, and offer solutions for service change. Depending on their clarity of expectations, other sector leaders may, or may not be prepared for the perspectives that lived experience will bring to the table (Scholz, Bocking & Happell 2017; Stewart et al., 2019). Clarity of expectations also enables sector leaders to create settings which are better aligned to, and responsive to the dynamics of lived experience leadership (Stewart et al., 2023). Better understanding and listening can also be the basis of allyship from sector and service leaders (Happell & Scholz 2018).

The findings on the strategic and mobilising aspects of lived experience leadership are important to discuss in the context of systems level transformative change. Through exploring lived experience leadership, we also heard about the significant work of using critical mass to shape change (VMIAC 2022). Leaders mobilise others to join campaigns or generate similar action in their own local areas/networks. Generating local action can mean working to raise awareness and creating support groups or other supportive spaces for confronting and sensitive conversations, as was occurring in suicide prevention and efforts to end stigma. A further aspect of mobilising networks, which was also a part of a leader’s lens and positionality, was intersectionality. This occurred in the way some leaders worked in networks featuring diverse lived experience and identity, and where allyship was an important stance in supporting the specific change agendas of allied groups. Part of this work was creating conditions of cultural and identity safety, which supported the involvement, relationship and action of peers who experience overlapping forms of marginalisation or injustice. The networking and relationship building skills were notable for rural and regional based leaders, who often operated in contexts with limited mental health services. These qualities are seen in other reported rural mental health projects where lived experience can lead successful support groups, and community projects, and draw in community resources and stakeholder recognition (e.g., Taylor et al. 2010).

Locally, as well as more globally, efforts in mobilising and collective action are about a transformation of mental health systems and stigmatising culture (Byrne et al., 2018). The potential for change is tremendous. This includes the growing employment of peer practitioners and leaders within existing services (Byrne et al., 2021), the creation of new organisations and programs that are co-produced or lived experience led (Grey & O’Hagan 2015), leading media work that shifts enduring community narratives about people living with mental health issues (Mind and Rethink MI 2022), and human rights advocacy on mental health legislation (Katterl & Maylea 2021).

A focus on social movement leadership highlights that the many barriers and stresses that occur for lived experience leaders in mental health settings, are an expression of the ‘tectonic’ paradigm conflicts that are occurring between the recovery/disability rights movements and biomedical paternal culture (Byrne, Happell & Reid-Searl 2016; Mahomed, Stein & Patel 2018). We found that many participants were working through the tensions and dynamics involved in seeking change, with these often creating a heavy burden of emotion and expectation for them, that can build over time. Examples included experiences of stigma from managers, not being heard around the table, being expected to represent multiple constituencies, the slow progress of change, or having recommendations rejected by management (removed for blind review). The feature of leading change; that leaders are reflective learners and deep thinkers, encourages skills and qualities for understanding the big picture, the need for a long game, and for processing these tensions and experience with others, rather than struggling in isolation. These are important reflexive aspects of lived experience leadership that can be better acknowledged, shared and developed through training.

Strengths and limitations of the study

The study’s strengths in being led by lived experienced researchers within a PAR approach are multiple. These include the proximity of lead researcher personal experience with the study themes, and the processes of design and review of data via lived experience leaders on the Advisory Group as well as consultations with participants. Strengths in design can also be seen in a combined analysis of focus group, online forum and survey responses. These processes improve the validity of thematic analysis from a lived experience lens, but they could also be questioned in terms of ideological influences on analysis stemming from the projects interests in advancing lived experience leader action. Similarly, previous sector level relationships between both lead researchers and some focus group participants may have also shaped data sharing and themes of discussion.

The representativeness of the two samples are broad and diverse. There may be limitations in representativeness of findings to specific settings, given that participants were operating in diverse roles, settings and spaces. In this light the findings should be interpreted in terms of how lived experience leadership is currently framed in specific cultural communities, carer specific groups, disability groups or LGBTIQ + groups. We argue however that the findings do have a significant level of generalizability due to the diverse samples, and layered reflection processes, and scope of the questions.

This article has reported on the qualitative research activities focused on defining lived experience leadership which were a part of a South Australian PAR project. The work of inviting a diverse group of established and emerging lived experience leaders to discuss the values, qualities and skills of lived experience leadership has resulted in a broad analysis of six key themes and associated sub themes which have significant value for progressing our recognition and understanding. The findings are that effective mental health lived experience leaders stand up and speak out, centres lived experience lens and positioning, champion justice and fight for rights, creates and nurtures safe and connected spaces, leads and inspires change, and are strategic in mobilising. The findings can help to shape thinking, expectations and action both internally for the consumer and carer movements in mental health and social sectors, as well as externally for other mental health sector and service leaders. The findings have value for informing training and education, transforming systems, as well as coproduction work and policy development.

Acknowledgements

The South Australia Lived Experience Leadership and Advocacy Network (LELAN) and UniSA’s Mental Health and Suicide Prevention Research and Education Group (MHSPREG) offer thanks and recognition to the Fay Fuller Foundation for the significant support and funding of the Activating Lived Experience Leadership (ALEL) Project.

We acknowledge and value the wisdom, knowledge and skills that people have shared with this project as advisers, research participants, members of the lived experience community, sector leaders and allies. Thank you for sharing your passion, knowledge and commitment in continuing to shape the key directions and substance of the project.

Project Advisory Group: Anne Barbara, Brooke Bickley, Geoff Harris, Jill Chapman, Julia McMillan, Lee Martinez, Leticia Albrecht, Lisa Huber, Richard, Sean, Tania Smith, Tayla Reynolds

Author contributions

ML, EH, NP led the design of the study. AB, LM, LA, BB and LH as members of the advisory group developed recruitment strategies, focus group questions, reflected on findings and reviewed and commented on the manuscript.

EH and ML conducted the focus groups

ML, EH, HM designed and conducted the online forum

ML conducted the thematic analysis, and led refining of themes with EH, HM, NP and Advisory Group members.

ML and HM wrote the initial draft of the manuscript and all authors contributed to the final manuscript. All authors read and approve the final manuscript.

Funding:

This project was funded by the Fay Fuller Foundation.

Ethics approval and consent to participate

Ethics approval was granted by the University of South Australia Human Research and Ethics committee. Reference: 202513

All participants signed consent forms.

Consent for publication:

All participants signed consent forms that included this statement:

I understand direct quotes from the focus group/online forum of statements I make could be used in publishing responses in a report or a journal article. The responses are made under a pseudonym to minimise risk to being identified.

Availability of data and materials:

Due to ethics restrictions qualitative data will not be available.

Competing interests:

There are no competing interests.

Ethics Declaration statement:

This research was carried out in accordance with the Declaration of Helsinki and was approved by the University of South Australia Human Research Ethics Committee (ID: 202513).

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No competing interests reported.

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Perspectives on lived experience leadership; values, qualities and skills for effective leaders of systems change: participatory action research

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Abstract

Figures

Introduction

The ALEL study

Methods

Study aim

Approach

Research approach and design:

Focus group and online discussion forum

Anonymous online survey

Participants and recruitment

Data collection for focus groups

Data analysis for all qualitative data

Results

Stands up and speaks out

Lived experience lens and positioning

Champions justice

Social and systemic change will be led by lived experience advocates. (Respondent 2)

Creates and nurtures safe and connected spaces

Leads and inspires change

I think we all know that good leaders never stop learning. (Online forum participant 3)

Strategic in mobilising

Discussion

Strengths and limitations of the study

Conclusion

Declarations

References

Additional Declarations

Supplementary Files

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