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.

Presenting a comprehensive multi-scale evaluation framework for participatory modelling programs: A scoping review.

INTRODUCTION: Systems modelling and simulation can improve understanding of complex systems to support decision making, better managing system challenges. Advances in technology have facilitated accessibility of modelling by diverse stakeholders, allowing them to engage with and contribute to the development of systems models (participatory modelling). However, despite its increasing applications across a range of disciplines, there is a growing need to improve evaluation efforts to effectively report on the quality, importance, and value of participatory modelling. This paper aims to identify and assess evaluation frameworks, criteria, and/or processes, as well as to synthesize the findings into a comprehensive multi-scale framework for participatory modelling programs. MATERIALS AND METHODS: A scoping review approach was utilized, which involved a systematic literature search via Scopus in consultation with experts to identify and appraise records that described an evaluation framework, criteria, and/or process in the context of participatory modelling. This scoping review is registered with the Open Science Framework. RESULTS: The review identified 11 studies, which varied in evaluation purposes, terminologies, levels of examination, and time points. The review of studies highlighted areas of overlap and opportunities for further development, which prompted the development of a comprehensive multi-scale evaluation framework to assess participatory modelling programs across disciplines and systems modelling methods. The framework consists of four categories (Feasibility, Value, Change/Action, Sustainability) with 30 evaluation criteria, broken down across project-, individual-, group- and system-level impacts. DISCUSSION & CONCLUSION: The presented novel framework brings together a significant knowledge base into a flexible, cross-sectoral evaluation effort that considers the whole participatory modelling process. Developed through the rigorous synthesis of multidisciplinary expertise from existing studies, the application of the framework can provide the opportunity to understand practical future implications such as which aspects are particularly important for policy decisions, community learning, and the ongoing improvement of participatory modelling methods.

Participatory Systems Modelling for Youth Mental Health: An Evaluation Study Applying a Comprehensive Multi-Scale Framework.

The youth mental health sector is persistently challenged by issues such as service fragmentation and inefficient resource allocation. Systems modelling and simulation, particularly utilizing participatory approaches, is offering promise in supporting evidence-informed decision making with limited resources by testing alternative strategies in safe virtual environments before implementing them in the real world. However, improved evaluation efforts are needed to understand the critical elements involved in and to improve methods for implementing participatory modelling for youth mental health system and service delivery. An evaluation protocol is described to evaluate the feasibility, value, impact, and sustainability of participatory systems modelling in delivering advanced decision support capabilities for youth mental health. This study applies a comprehensive multi-scale evaluation framework, drawing on participatory action research principles as well as formative, summative, process, and outcome evaluation techniques. Novel data collection procedures are presented, including online surveys that incorporate gamification to enable social network analysis and patient journey mapping. The evaluation approach also explores the experiences of diverse stakeholders, including young people with lived (or living) experience of mental illness. Social and technical opportunities will be uncovered, as well as challenges implementing these interdisciplinary methods in complex settings to improve youth mental health policy, planning, and outcomes. This study protocol can also be adapted for broader international applications, disciplines, and contexts.

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.

Hyperscanning and avoidance in social anxiety disorder: the visual scanpath during public speaking.

Social anxiety disorder (SAD) is a debilitating mental illness which is thought to be maintained in part by the aberrant attentional processing of socially relevant information. Critically however, research has not assessed whether such aberrant attentional processing occurs during social-evaluative contexts characteristically feared in SAD. The current study presents a novel approach for the assessment of the visuocognitive biases operating in SAD during a social-evaluative stressor. For this task, clinically socially anxious participants and controls were required to give a brief impromptu speech in front of a pre-recorded audience who intermittently displayed socially positive or threatening gestures. Participant gaze at the audience display was recorded throughout the speech. Socially anxious participants exhibited a significantly longer visual scanpath, relative to controls. In addition, socially anxious participants spent relatively longer time fixating at the non-social regions in between and around the confederates. The findings of the present study suggest that SAD is associated with hyperscanning and the attentional avoidance of social stimuli.

The role of glia in late-life depression.

Late-life depression (LLD) has a complex and multifactoral etiology. There is growing interest in elucidating how glia, acting alone or as part of a glial-neuronal network, may contribute to the pathophysiology of depression. In this paper, we explore results from neuroimaging studies showing gray-matter volume loss in key frontal and subcortical structures implicated in LLD, and present the few histological studies that have examined neuronal and glial densities in these regions. Compared to results in younger people with depression, there appear to be age-dependent differences in neuronal pathology but the changes in glial pathology may be more subtle, perhaps reflecting a longer-term compensatory gliosis to earlier damage. We then consider the mechanisms by which both astrocytes and microglia may mediate and modulate neuronal dysfunction and possible degeneration in depression. These include a critical role in the response to peripheral inflammation and central microglial activation, as well as a key role in glutamate metabolism. Advances in our understanding of glia are highlighted, including the role of microglia as "electricians" of the brain and astrocytes as key communicating cells, an integral part of the tripartite synapse. Finally, implications for clinicians are discussed, including the consideration of glia as biomarkers for LLD and incorporation of glia into future therapeutic strategies.