The suicide prevention sector recognises that including people with lived experience (personal experience of suicide) is important for better tailoring suicide prevention work through research, policy and program design, and delivery. Organisations within the suicide prevention specific sector, and mental health care generally, engage people with lived experience across a wide variety of roles and in a variety of ways. Engagement can be through formalised employment (part- and full-time or project-based) or informal engagement and can be paid or unpaid. The reality of what people with lived experience truly need in participating in suicide prevention is yet to be fully understood within the scientific literature.
This PhD research explores how people with lived experience of suicide participate in suicide prevention work in Australia and is conducted by a person with lived experience of suicide. The research is grounded in critical suicidology, considering the social and environmental contexts in which experiences are produced, as well as the internal lifeworld of the person whose experiences match the area of interest. Three bodies of work make up the research: (1) scoping review of the peer-reviewed literature, (2) descriptive phenomenological study, and (3) critical reflection study.
The scoping review identified the key areas that are underexplored within research and highlighted that there is much that is undocumented about how people with lived experience participate in suicide prevention work. The descriptive phenomenological study sought to fill these gaps through in-depth interviews with 18 people with lived experience (partners) who do suicide prevention work in Australia. The study identified five meaning units describing how people with lived experience undertake suicide prevention work in Australia: (1) action, (2) relationships, (3) qualification, (4) personal investment, and (5) boundaries. Spanning the meaning units are the themes of (1) lift and (2) load that illuminate the meaning units and describe how the work of partners is constrained or enabled. The study also identified that there is great variability in the context in which people with lived experience do their suicide prevention work, but also in the function and form of their work.
In keeping with the research philosophy and aims, my own experience as a person with lived experience, conducting suicide prevention research was critically appraised. My experience, both as a researcher and in my broader suicide prevention work, was mapped against the structure identified in this research. The impact of my insider status was also examined with key reflections on how people with lived experience can undertake research within their own community.
The research findings can be understood through the divisions of individual, interpersonal, and sector realms, with each segment offering different insights. Individually, the experience of partners relates to motivation from lived experience and the need to create change. This is driven by self-awareness and enabled by maintaining self through emotionally activating work. Interpersonally, lived experience related suicide prevention work is understood as deeply relational, with interactions with others not only providing lift through belonging, community, and relational resilience but also load through stigmatised beliefs and attitudes transformed into behaviour. Within the sector, structures constrain the work of people with lived experience through definitions of lived experience, gatekeeping access, payment structures, allocation of power and control, and a culture of risk aversion.
Recommendations are made to rethink the way lived experience is viewed within suicide prevention work, acknowledging the strengths of people with lived experience and the skills and knowledge they possess that contribute to effective suicide support.