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.

Partnering with Aboriginal and Torres Strait Islander Peoples: An Evaluation Study Protocol to Strengthen a Comprehensive Multi-Scale Evaluation Framework for Participatory Systems Modelling through Indigenous Paradigms and Methodologies.

The social and emotional wellbeing of young Aboriginal and Torres Strait Islander peoples should be supported through an Indigenous-led and community empowering approach. Applying systems thinking via participatory approaches is aligned with Aboriginal and Torres Strait Islander research paradigms and can be an effective method to deliver a decision support tool for mental health systems planning for Indigenous communities. Evaluations are necessary to understand the effectiveness and value of such methods, uncover protective and healing factors of social and emotional wellbeing, as well as to promote Aboriginal and Torres Strait Islander self-determination over allocation of funding and resources. This paper presents modifications to a published evaluation protocol for participatory systems modelling to align with critical Aboriginal and Torres Strait Islander guidelines and recommendations to support the social and emotional wellbeing of young people. This paper also presents a culturally relevant participatory systems modelling evaluation framework. Recognizing the reciprocity, strengths, and expertise Aboriginal and Torres Strait Islander methodologies can offer to broader research and evaluation practices, the amended framework presented in this paper facilitates empowering evaluation practices that should be adopted when working with Aboriginal and Torres Strait Islander peoples as well as when working with other diverse, non-Indigenous communities.