Appendix 1 Language used in the guide
Language used in the guide
The area of lived experience engagement includes many diverse terms and phrases that refer to people, roles and processes (see Appendix 5 for additional terms).
This guide recognises that your preferred terminology in mental health may vary from both the terms in policy documents and the terms other people prefer. We use the following terms throughout the document.
Consumers are people who identify as having a living or lived experience of mental illness, irrespective of whether they have a formal diagnosis, have accessed services and/or have received treatment. Consumers include people who describe themselves as a ‘peer’, ‘survivor’ or ‘expert by experience’.27
Carers are people, often family members and/or families of choice (including children and young people), who have a lived experience of providing, or have provided in the past, ongoing personal care, support, advocacy and/or assistance for a person with mental illness. Carers include people in the consumer’s extended family, or families of choice and support networks, who play a meaningful support role. This role differs from the role of a paid carer, who is a person employed to care for someone.
Co-production is an approach to developing, implementing and evaluating policy, programs and services in which consumers, carers and health professionals work together as equal participants and partners. The approach is guided by awareness of, and actions towards, shared power and leadership in decision-making, and an understanding that the products (policies, programs and services) must effectively respond to consumer and carer experience and interests.
Engagement has a similar meaning to involvement and participation. Engagement refers to the methods, practices and actions that enable people to become involved in organisational planning and decision-making. This includes consumers, carers and other community members.
Kinship group is a term that refers to the relationships, roles, responsibilities and obligations of many Aboriginal and Torres Strait Islander people. Kinship relations and culture need to be described by local Aboriginal and Torres Strait Islander people, and are not easily understood in terms of relationships in the Western definition of family.28 An important aspect of kinship care and responsibility concerns which people can be involved in a person’s care, and the people who can play leadership roles in the community.
Lived experience is a broad term that refers to the personal perspectives on, and experiences of, being a consumer or carer, and how this becomes awareness and knowledge that can be communicated to others. The term covers people’s core experiences around mental health challenges and service use that may have occurred in the past or may be ongoing (sometimes called living experience).
Lived experience advisers are people who are active in the following roles:
Consumer adviser: A consumer with expertise in this area who participates in consultation or decision-making groups, and speaks and acts from a collective consumer perspective. A consumer adviser works to ensure that the rights, interests and needs of consumers are heard, recognised and responded to. A consumer adviser can be independent, or they can act on behalf of a consumer organisation. Sometimes they are called consumer advocates.
Carer adviser: A carer adviser plays a very similar role to that of a consumer adviser in contributing to decision- making groups, but speaks and acts from a carer perspective. Carer advisers work to ensure that the rights, interests and needs of carers are heard, recognised and responded to. Experienced carers understand the need to recognise consumer voices rather than speaking for them.
We acknowledge that lived experience roles are still developing in the health contexts of culturally and linguistically diverse communities, and Aboriginal and Torres Strait Islander peoples. The definition of lived experience is being considered in light of perspectives on cultural experience, preferences, and the social and emotional wellbeing framework.
Lived experience leader: This is an umbrella term that includes people with lived experience who are recognised as leaders within the consumer and carer community in actively promoting consumer or carer perspectives, sharing with others and seeking change.
These roles include people who are active as advisers, consultants, representatives, community and peer educators, peer workers, advocates and activists. Leaders can be volunteers (e.g. representatives, some peer educators and other educators, advocates) or they can hold paid positions (e.g. peer workers, researchers, consumer or carer consultants and representatives, educators, advocates).
Recovery: Recovery is a personally defined process. A common definition is “being able to create and live a meaningful and contributing life in a community of choice with or without the presence of mental health issues.29 Values associated with recovery are hope, personal choice and self-determination, empowerment, transformation, discovery, connection, dignity and justice. Increasingly, recovery is seen not only as a psychological process but also as a social and relational process. This development recognises that change occurs through relationships and opportunities that consumers want, and that result in healing and empowering experiences. Recovery is about transforming relationships in community life, especially around employment, education and other areas of social participation. This requires action on the social determinants of mental health and upholding human rights to promote understanding, acceptance and inclusion.30
Safety and quality is about having a carer consultant at the Emergency Dept, to help us to understand what is going on with our son’s care.