Lived Experience Engagement in Service Design and Improvement: Investigating Meaning and Impact.
Yuk Ying Sophia Wong, Carolynne White, Aislinn Lalor and 2 others
Consumers and carers in voluntary advisory roles described their engagement as giving them structure, redefining past negative experiences, and connecting them with others who understood.
Supportive facilitators who respected boundaries and checked in regularly were central to making participation feel safe.
Key findings
1Participants described their engagement as providing routine and structure, helping them reframe negative experiences as positive contributions, and connecting them with others who shared similar lived experiences.
2Facilitators who were approachable, respected participants' boundaries when they chose not to share, and checked in regularly were identified as essential to creating a safe-enough environment for sharing.
3Sharing lived experience could be emotionally costly; one carer described feeling 'shocking for days' after reliving traumatic moments and said there should have been more support.
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What it does not show
Six participants from a single community mental health service in Australia; findings describe one group's experience and cannot be generalised to other settings or populations. Self-selection: participants were current LEAT members who chose to take part, so those with negative or ambivalent experiences of lived engagement are likely underrepresented. Specific details of participation opportunities were omitted to protect confidentiality, so the relationship between experiences and particular types of engagement cannot be examined. All participants reported predominantly positive experiences; no one who had left the team or had a negative experience was included.
Declared interests
The authors received no financial support and declared no conflicts of interest.
The easy way to misread this
Do not read these themes as evidence that lived experience engagement is beneficial or that it improves mental health outcomes. Six people in one advisory team described their own experience in their own words. The sample was self-selected from people who were already in the role and chose to be interviewed, so those for whom the experience was unhelpful or who left are absent. What the paper offers is a description of what these six people found meaningful and what they needed from facilitators, not a demonstration that the engagement itself produced a positive effect.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →