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Lived Experience Engagement in Service Design and Improvement: Investigating Meaning and Impact
Yuk Ying Sophia Wong1, Carolynne White2, Aislinn Lalor1
1Monash University, Frankston, Victoria, Australia.
OTJR : Occupation, Participation and Health
|December 13, 2025
Summary
Engaging consumers and carers in mental health services offers personal growth and connection. Valuing their input and providing support creates meaningful participation opportunities.
Area of Science:
- Mental Health Services Research
- Consumer and Carer Engagement
- Qualitative Research Methods
Background:
- Involving individuals with lived experience is crucial for effective mental health service design, development, and research.
- Understanding the personal meaning and impact of these participation opportunities for consumers and carers is essential.
Purpose of the Study:
- To explore the personal meaning and impact of participating in lived experience opportunities for consumers and carers.
- To identify key themes related to consumer and carer involvement in mental health services.
Main Methods:
- Six semi-structured interviews were conducted with consumer and carer volunteers at an Australian community mental health service.
- Interpretative phenomenological analysis was used to analyze the interview data.
- A steering group of staff with lived expertise guided the research process.
Main Results:
- Five key themes emerged: transforming negative experiences into positive contributions, self-growth, building connections and support, considerations for team integration, and setting up voluntary roles.
- Lived experience engagement was found to be highly meaningful for both consumers and carers.
- Creating safe and supportive environments is vital for effective participation.
Conclusions:
- Lived experience participation significantly benefits consumers and carers, fostering personal growth and connection.
- Effective engagement requires valuing diverse opinions, supportive facilitation, and acknowledging the demands of sharing experiences.
- Considerations for remuneration and creating safe environments are crucial for successful lived experience roles.
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