What is it about?
We’ve entered a time where mental health research and services are more focused on involving people with lived experience. This is great because it means their insights are valued. However, we’re worried that just focusing on participation might keep these individuals out of key decision-making roles, ignore the history of their advocacy, and misuse their expertise.
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Perspectives
To make sure the participatory era in mental health goes beyond token gestures and truly values people with lived experience, we recommend the following actions: 1. Be Honest and Transparent: Clearly communicate how much power is shared in projects or initiatives. 2. Report Power Imbalances: Provide detailed accounts of how power imbalances are addressed and negotiated. 3. Engage Collaboratively: Ensure all collaborators, including those with lived experience, actively work to identify and address power imbalances. 4. Participatory Reporting: Use participatory methods to report on participatory approaches. 5. Go Beyond Tokenism: Show genuine excitement and commitment to meaningful engagement.
Mr. Aron Harold Pamoso
Australian National University
Read the Original
This page is a summary of: The importance of going beyond consumer or patient involvement to lived experience leadership, International Journal of Mental Health Nursing, December 2023, Wiley,
DOI: 10.1111/inm.13282.
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