Introduction

Collaboration with people who have lived experience of a health condition is essential for user-centric, experience based co-design processes such as those integral to the Ophelia (Optimising Health Literacy and Access) process. For people with lived experience of mental health issues, participation in co-design to improve services requires careful consideration to create an environment that encourages, values and prioritises their voices, particularly given that previous encounters may have been negative, disempowering and stigmatising. Participation processes were developed within an Ophelia-based project to provide a voice and listen to people with lived experience of mental health issues to inform the development of education, training and resources to support mental health literacy responsiveness.

Methods

People who may be experiencing vulnerability, and thus be more likely to experience health inequity and fewer opportunities to participate in formal collaborations, were identified as a priority for recruitment. With the assistance of priority group coordinators, people with lived experience of mental health issues were recruited from these communities: culturally and linguistically diverse; LGBTIQ; rural and remote; carers; Pacific Islander; and people living with disability. They were invited to complete a survey about their health literacy with the option of participating in an online workshop.

Optimal participation and the psychological safety of participants was achieved in an online workshop environment through:

• Small groups (6-10 participants);
• Plain language explanations;

• Using an anonymous polling function to consent for recording; and to choose the vignettes (short stories) to be discussed;
• Research team being off camera during discussion (except for the facilitators);
• Participants opting to leave their camera off and/or use a pseudonym;
• Psychologist attendance; and the creation of a private breakout room for participants to access this support if necessary; and
• Utilising the chat platform to share information with everyone or privately; and
• Skilful facilitation to create a safe and enabling group process.

Impact

Ensuring the psychological safety of participants enabled them to make informed decisions about their participation without the need to disclose sensitive information.

Lessons learned

Intently listening to voices of people with lived experience yielded rich ideas to co-design strategies to improve mental health literacy responsiveness.