Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study.

BACKGROUND: Despite increasing support for stakeholder inclusion in research, there is limited evaluative research to guide safe (i.e., youth-friendly) and meaningful (i.e., non-tokenistic) partnerships with young people with lived experience of mental ill-health in research. This paper describes a pilot evaluation and iterative design of a Youth Lived Experience Working Group (LEWG) protocol that was established by the Youth Mental Health and Technology team at The University of Sydney's Brain and Mind Centre, based on the results of two studies. METHODS: Study one consisted of a pilot evaluation of the extent to which youth partners felt empowered to contribute, to qualitatively explore how LEWG processes could be improved. Youth partners completed online surveys, and results were shared over two LEWG meetings in 2021 to empower youth partners to collectively identify actions of positive change regarding LEWG processes. These meetings were audio-recorded and transcripts were subsequently coded using thematic analysis. Study two assessed whether LEWG processes and proposed improvements were acceptable and feasible from the perspective of academic researchers via an online survey in 2022. RESULTS: Quantitative and qualitative data collected from nine youth partners and 42 academic researchers uncovered initial learnings regarding facilitators, motivators, and barriers to partnering with young people with lived experience in research. Implementing clear processes for youth partners and academic researchers on effective partnership strategies, providing training opportunities for youth partners to develop research skills, and providing regular updates on how youth partner contributions led to research outcomes were identified as key facilitators. CONCLUSIONS: This pilot study provides insight into a growing international field on how to optimise participatory processes so that researchers and young people with lived experience can be better supported and engaged to make meaningful contributions to mental health research. We argue that more transparency is needed around participatory research processes so that partnerships with young people with lived experience are not merely tokenistic. CONSUMER CONTRIBUTIONS: Our study has also been approved by and reflects the concepts and priorities of our youth lived experience partners and lived experience researchers, all of whom are authors of this paper.

Learning from consumers: An eDelphi study of Australian mental health consumers' priorities for recovery-oriented curricula.

BACKGROUND/AIM: Mental health reform in Australia emphasises recovery, partnership working and prioritises consumers' needs over professionals'. Occupational therapy students must develop capabilities for working in this way. Learning from consumers' lived experience of mental illness and recovery is considered critical to developing such capabilities and aligns with occupational therapy programme accreditation for consumer involvement in designing, delivering and evaluating curricula. No definitive capability standards exist to inform curricula and little is known about Australian mental health consumers' preferred modes of involvement in health professional education. This study sought to identify consumers' priorities for curricula, and ways in which they would like to participate in entry-level student education. METHODS: An eDelphi study utilising the Policy Delphi approach was employed. Consensus by 70% of participants was set as the standard for item inclusion. The first round asked open questions about participants' priorities for recovery-oriented curricula, their experiences with mental health workers and asked participants to identify their preferred methods of participating in education. Items generated were rated in subsequent rounds until consensus was reached in round three. RESULTS: Twenty-eight participants completed round one, 18 completed round two and 14 completed round three. Five core values and 171 curriculum priorities, forming 12 capability domains, reached consensus. Each capability domain comprised knowledge and understanding; skills and abilities; and behaviours and actions. Ten ways of participating in mental health curricula in entry-level occupational therapy programmes were identified, with an emphasis on active participation in design, delivery and review of curricula. CONCLUSION: These findings highlight important capabilities from consumers' perspectives, suggesting key content for curricula. Active roles in designing, delivering and evaluating curricula were preferred, providing some guidance for educators seeking to involve consumers. Further research is required to refine these priorities, and to evaluate acceptability, feasibility and efficacy of varying modes of consumer involvement.