Talking about Lived Experience: language and definitions

Defining the Lived Experience workforce

Members of the Lived Experience workforce in Australia are employed in a range of positions across various settings. The Lived Experience workforce includes but is not limited to: Consumer Consultants; Carer Consultants; Peer support workers; family/carer peer support workers; specialist peer workers; and various designated Lived Experience roles in executive governance; paid board and committee representation; education; training; research; consultancy; policy design; and systemic advocacy across various service settings.

Designated Lived Experience roles include all positions that require lived experience as key criteria, regardless of position type or setting. Key to qualification for Lived Experience roles, is that the experiences were so significant they caused the individual to reassess and often change their lives, their future plans, and their view of themselves.

Designated roles have two distinct perspectives and ways of working and are informed by either: 1. Personal experience of mental health challenges, service use, periods of healing/personal recovery; or 2. Experience of supporting someone through mental health challenges, service use, periods of healing / personal recovery

Multiple perspectives and language choices of the National Development Guidelines

A variety of terms and titles are used across different settings, roles, and jurisdictions. Since there is such diversity in the language used nationally, the National Development Guidelines engagement activities – particularly the survey – sought majority preference on several key terms for use within the documents.

The terms and titles chosen all had a majority preference from people working in both designated Lived Experience and non-designated roles. A tenet of Lived Experience work is the ability to hold space for and respect different views, allowing for multiple perspectives. This also reflects a core principle of personal recovery: that each person’s experience will be individual and different from that of others.

With this in mind, the National Development Guidelines do not intend to dictate the terms and concepts used for and with the Lived Experience workforce, rather common language needed to be employed and these were the preferences of participants. The language of Lived Experience work will undoubtedly continue to be diverse and it is recommended stakeholders discuss which terms are most appropriate within their own context.

Title to describe the collective workforces

The National Development Guidelines include both the personal lived experience (consumer) and family/carer workforces, collectively referred to in the National Development Guidelines as the ‘Lived Experience workforce’. However it is recognised that these are separate workforces and the role types have distinct ways of working, informed by different types of understanding/experience and with differences in the way values are applied.

In the National Survey, to describe the workforces collectively, the majority of participants supported the use of ‘Lived Experience’ workforce or roles. Survey respondents preferred ‘lived experience’ as the overarching or umbrella title because it was perceived as inclusive of both personal (consumer) and family/carer roles. Additionally, many respondents said the common alternate title – ‘peer workforce’ – is often misunderstood as referring only to direct peer support work (individual peer-to-peer or group-based support) and was not commonly understood as inclusive of other types of designated work (e.g. positions focused on policy, education, strategy, or research).

The term ‘Lived Experience’ when referring to roles or the workforce, is capitalised to distinguish the professional from the personal, i.e. working in a Lived Experience role as opposed to ‘having a lived experience’.

Term to describe direct experience/‘consumer’ roles

The term ‘Lived Experience’ was the most popular term to describe what are sometimes called consumer or peer roles, with ‘personal experience’ a close second. Because ‘Lived Experience’ was also preferred for the overall workforce title, the National Development Guidelines use ‘personal Lived Experience’ to describe consumer perspective roles. As with all terms, it is acknowledged that in different states and settings other terminology is favoured.

Term to describe support experience/‘carer’ roles

‘Family/carer’ was the majority preference to describe roles informed by supporting another person experiencing mental health challenges.

Need for culturally appropriate and inclusive terminology and concepts

The National Development Guidelines acknowledge the criticality of culturally appropriate terminology and language in the mental health and suicide prevention sectors. The Survey results and cultural engagements reinforce the need for a term that acknowledges the complexity of people’s experiences. They recognise that Aboriginal and Torres Strait Islander Peoples, as well as many people from non-western cultures, have differing concepts of mental health from the mainstream service system and may place greater significance on the role of kinship, interconnectedness and spirituality. These differences are often demonstrated by the use of alternate terms, including ‘spiritual imbalance’ and ‘strong spirit’ in understanding experiences.

Concepts of mental health also need to consider the impact of wide scale inequality in social determinants of health, including the impacts of racism and discrimination, child removals and trauma, and denial of access to traditional lands and language, as well as lack of access to housing, employment, education, services and socioeconomic status. These disparities in social and economic conditions disproportionately effect marginalised communities, including the social and emotional wellbeing of Aboriginal and Torres Strait Islander Peoples. This is especially true for people in remote communities.

Term to describe the ‘experience’ by which designated roles are informed

In relation to the ‘experience’ designated roles draw upon and are informed by, the majority preference was ‘challenges with social and emotional wellbeing’. The second preference was ‘trauma’, followed by ‘mental health challenges’. Similar results were found in a 2019 survey conducted by the Victorian consumer peak body (VMIAC).⁵

Although Survey respondents preferred ‘social and emotional wellbeing’, this term has not been used in the National Development Guidelines due to the specific cultural, spiritual, and social meaning and significance of the term to Aboriginal and Torres Strait Islander communities. Additionally, it was outside the scope of this project to undertake in-depth wider engagement with Aboriginal and Torres Strait Islander leaders, organisations and communities on the appropriateness of using this language in a mainstream document and context. However, there is an urgent need for this engagement to occur, to progress use of more relevant and culturally appropriate language which is guided by communities.

While the term ‘trauma’ was nominated as the second preference, experiences of trauma are not universally identified by all people with lived experience. For these reasons, the third preference ‘mental health challenges’ has been used within the National Development Guidelines.

Alternative terms to describe ‘stigma’ and ‘anti-stigma interventions’

The term ‘stigma’ is often considered unhelpful and inaccurate by members of the Lived Experience workforce. For this reason, the Stages of Development do not talk about ‘anti-stigma interventions’. What is commonly referred to as ‘stigma’ is the result of discriminatory and/or prejudicial beliefs, attitudes and assumptions. Workplace culture encompasses and is formed by the attitudes and beliefs of workers. In the Stages of Development, significant attention is given to workplace culture strategies/actions, as well as training and development (anti-stigma interventions), that improve the attitudes of the wider workforce, challenging discriminatory or prejudicial beliefs and creating more accepting and inclusive workplaces.

‘Stigma’ as a term, also lacks relevance for different cultures. For example, for Aboriginal and Torres Strait Islander Peoples, stigma is not seen as culturally appropriate. Instead the term ‘shame’ is accepted as culturally significant, important and different from stigma.

People employed in non-designated roles

All positions that are not designated Lived Experience roles are referred to within the National Development Guidelines as ‘non-designated’. Many people in non-designated roles may identify privately or publicly as having a lived experience. Their lived experience insight is acknowledged as valuable, and the Stages of Development address strategies for increasing the acceptance and valuing of these perspectives within the workplace. However, people in these roles are not employed specifically to work from the perspective of their lived experience. Instead, their positions are informed by different priorities and/or disciplines, and as a result, are not part of the designated Lived Experience workforce.

Importantly, while the lived experience perspectives of people in non-designated roles add value to the workplace, their role should not be considered as a substitute for designated roles. Designated positions are firmly focused on, and informed by, lived experience priorities and perspectives and therefore have a unique role to play.