Lived Experience Engagement in Service Design and Improvement: Investigating Meaning and Impact

Involving people with lived experience is important to mental health service design, development, and research. This study explored the personal meaning and impact of participating in lived experience opportunities for consumers and carers. Six semi-structured interviews with consumer and carer volunteers at an Australian community mental health service were analyzed through an interpretative phenomenological lens. A steering group, formed by staff with lived expertise, guided the research. Five themes were identified: "Transforming negative experiences into positive contributions," "Self-growth through lived experience participation," "Connections and support through lived experience participation," "Considerations for supporting consumers and carers in a team," and "Considerations for setting up voluntary lived experience participation roles." Lived experience engagement is meaningful to consumers and carers. Creating safe-enough environments that support participation in decision-making requires valuing diverse opinions, having supportive facilitators, acknowledging demands of sharing lived experiences, and paid remuneration.