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

Abstract 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.


| INTRODUCTION
Health researchers face persistent challenges translating key findings into real-world settings, limiting the impact of their research and more critically, its ability to improve the health outcomes of patients. 1 For this reason, leaders in health service delivery have endorsed the Nothing About Us Without Us principle 2 to ensure that the values and preferences of key stakeholders, particularly people with lived experience, are incorporated in the design and implementation of programmes and services that impact their everyday lives, improving the translatability of health policies and research. 3,4 Participatory approaches may be particularly valuable in youth mental health research, where 'youth' may broadly be defined between 12 and 30 years old, as low rates of help-seeking and high drop-out rates indicate a strong impetus to improve the acceptability of evidencebased treatments for this population. [4][5][6][7] Despite this, genuine partnerships with young people with lived experience of mental ill-health continue to be limited in academic research. [6][7][8][9] Reviews of the field have continuously pointed to a lack of transparency from research teams regarding the processes and protocols that are used to engage consumers as research partners, coupled with limited evaluative research that can guide participatory research efforts. [10][11][12] Given the unique challenges that exist when working with youth populations, particularly those with mental illhealth, it is important that clear guidelines and protocols are provided for youth mental health research. Barriers include young people mistrusting researchers due to a belief that lived experience expertise will be devalued in favour of academic expertise, and power imbalances between academic staff and lived experience staff that are further heightened when academics are working with young people. [13][14][15][16] On the other hand, research partnerships can help young people to feel empowered and have positive benefits for their wellbeing. [10][11][12]17 Moreover, researchers report that these partnerships improve the quality and translatability of their research. 12,18,19 It is therefore incumbent upon academics to provide greater transparency regarding participatory research processes to ensure that their methods are optimally designed to empower young people and to ensure that all types of knowledge, including 'lived experience' and 'academic', are equally valued. 9,20 1.1 | The Brain and Mind Centre's Youth Lived Experience Working Group (LEWG)

| Overview and theoretical framework
The Youth Mental Health and Technology (YMH) team at The University of Sydney's Brain and Mind Centre established the LEWG in February 2021. This presented a valuable opportunity to design and evaluate a LEWG protocol (i.e., the standard operating procedure for involving young people with lived experience of mental ill-health in projects conducted by the YMH team; see Supplementary Material 1). The LEWG aims to embed young people with lived and/or living experience in all aspects of the research cycle from the design through to dissemination across every research stream (or sub-team) within the YMH team. 21 The nature of LEWG involvement in research projects can involve consultation (e.g., academic researchers seeking feedback on various aspects of their project from youth partners during monthly meetings), partnership (e.g., academic researchers, lived experience researchers, and LEWG members co-author academic outputs and co-design LEWG protocols), and citizen control (e.g., LEWG members and lived experience researchers produce their own podcasts, webinars and articles). 22 A pilot study was conducted to evaluate the LEWG's protocol against guidelines for lived experience partnerships from the perspectives of both young people and academic researchers ahead of a longitudinal evaluation study of the impact of the LEWG on the YMH team's research projects and outputs.
In designing our own protocol, we sought processes that aligned with existing frameworks for participatory involvement but also suited the needs and values of our group members. For example, whilst Arnstein's seminal ladder of participation conceptualises 'citizen-control' as the highest rung of participation, young people often prefer to move dynamically between different levels of participation based on their levels of interest, experience, and comfort over time. 23 Thus, according to Arunkumar and colleagues, it is important that researchers enable young people to choose and change their depth of involvement, increase the capacity for young people to be involved in decision-making when problems arise, and ensure accountability between researchers and young people. 24,25 Likewise, Kirwan and colleagues have recommended that researchers follow 'basic principles' rather than prescriptive frameworks when designing participatory methods, given that the nature and goals of consumer research participation may greatly differ between research projects and real-world settings. 26 These principles include supportive institutional policies, supportive attitudes that ensure strong communication and shared goals, mutual respect, addressing training needs, providing resources and advanced planning, and recognising the value of research partnerships across all stages of research from conceptualisation through the dissemination of findings. 26 In collaboration with our lived experience researchers, we sought to ensure that these principles recommended by Arunkumar   perspectives of young people with living experience of mental illhealth. As part of the planning group, they were involved in managing the LEWG, recruiting new members, contributing to ethics applications including the design of evaluation tools to ensure that they were acceptable to young people, and co-authoring academic papers.
G. Y. L and Y. J. C. S. were also involved in organising and running LEWG and provided academic mentorship regarding ethical research guidelines and existing recommendations from past research regarding frameworks of engagement.

| Overview of LEWG processes
The first LEWG meeting was held in April 2021, and the working group continues to meet monthly for at least three hours. Youth partners of the LEWG are reimbursed for their time in line with the National Paid Participation Policy ($52.25 AUD per hour) 27 to foster a more equal working relationship. 28,29 Throughout the first year since establishing the LEWG, youth partners engaged with and provided monthly expert feedback to academic researchers from the YMH team, excluding external collaborators, who attended LEWG meetings to embed youth partners' expertise in their research.

| Objectives
Our objective was to refine the LEWG protocol based on the results of two studies. Study one consisted of a pilot evaluation of the extent to which youth partners felt empowered to contribute to research through the LEWG and to qualitatively explore how our processes could be improved. Study two assessed whether our processes and proposed improvements were acceptable and feasible from the perspective of academic researchers.

| Ethics and governance
The pilot evaluation study was approved by The University of Sydney's Human Research Ethics Committee (2020/786). Our study has also been approved by and reflects the concepts and priorities of our youth partners and lived experience researchers.

| Study #1
Passive sampling (e.g., researchers at an arms-length) was adopted to recruit young people with lived and/or living experience of mental illhealth to join the LEWG (16-30 years old) via online advertisements and referrals. Youth partners from the LEWG were invited to participate in a baseline survey. The results of this survey were then shared during two meetings. These meetings were audio-recoded and qualitatively analysed.

| Study #2
Academic researchers (≥18 years old) from the YMH team, including external collaborators of the YMH team from various international universities were also invited to participate in a baseline survey. As snowball recruitment was adopted to recruit academic researchers, it is possible that both academic researchers (i.e., researchers without lived mental health experience) and lived experience researchers (i.e., researchers with lived mental health experience) completed the survey. Researchers who administered the survey (i.e., LEWG planning group) did not complete the survey.
To avoid any perceived coercion, all recruitment remained passive (e.g., via online advertisements) to ensure that youth partners and academic researchers had control over their decision to participate.

| Design
This project was informed by principles of participatory action research and empowerment evaluation. Participatory action research seeks to involve stakeholders, in this case, lived experience researchers and youth partners, as both subjects and coresearchers. 30 This approach assumes that causal inferences made about research findings are likely to be more valid when they are informed with and by stakeholders most directly impacted by research outcomes. 30 Empowerment evaluation approaches have a similar focus, but additionally seek to improve the self-determination of these populations; in other words, to upskill stakeholders to make positive changes for their community through evaluation. 31

| Data collection and analysis
Quantitative data was collected through online surveys administered to youth partners (study #1) and to academic researchers (study #2) via Qualtrics. Youth partners were asked to complete a baseline survey in July 2021, after the third LEWG meeting, to allow time to build trust and rapport between youth partners and the LEWG Our qualitative data analysis followed constructivist grounded theory that assumes all knowledge is constructed by the meanings that individuals bring to data analysis. 44 Our research team had existing sensitivities that influenced the organisation of data into themes. Academic researchers were more inclined to analyse data through the lens of theoretical frameworks for participatory research.
In contrast, lived experience researchers were informed by their experience of mental ill-health and of being part of an academic team, thus grounding proposed themes in the values, needs, and expectations of our youth partners.

| RESULTS
3.1 | Study #1: Youth partners' perspectives on the acceptability of the LEWG protocol Baseline surveys were administered to 11 youth partners in July 2021, including two who withdrew from the LEWG. An 82% response rate was achieved (n = 9), including two culturally and linguistically diverse respondents, two identifying with the LGBTQIA+ community, and one Aboriginal and/or Torres Strait Islander youth partner respondent. As presented in Table 1, survey results suggested that the key motivations and goals for youth partners in the LEWG were 'to make sure others can access better care' (n = 8), 'to help others' (n = 7), and 'to understand latest research evidence' (n = 6).

| Implement clear processes for both youth partners and academic researchers
Whilst LEWG processes (such as the format and frequency of meetings, study design, and recruitment of participants) were initially co-designed with lived experience researchers, more practical details, including how information was communicated were left to the discretion of academic researchers. This led to inconsistencies in how academic researchers included youth partners in their research. For instance, one academic researcher focused on presenting their research to youth partners with little opportunity for collaboration and open discussion to deliver feedback. LEWG members reported being "scared" that this academic would believe they had engaged in "ethical consultation" and believed they could "continue on with their work" when youth partners themselves believed that the academic researcher had "lectured" them instead. As a lived experience researcher expressed, "The purpose of this working group is not for [academic researchers] to give you a lecture. That was never the memo". Accordingly, youth partners identified the need to have more capacity to choose the meetings they  dissemination outputs, "…like podcasts and just doing more awareness, advocacy, and all that sort of stuff", which was expressed by young people as a priority for more effective partnerships.
Additionally, more formal pre-briefing and de-briefing sessions for both youth partners and academic researchers were identified by youth partners as an effective mitigation strategy. The aim of the pre-briefing process (i.e., before academic researchers engage with youth partners via LEWG meetings) is to provide the opportunity for the LEWG planning  The pre-briefing process also ensures academic researchers prepare an agenda and a one-page summary of their research topic to circulate to youth partners at least one week before the LEWG meeting. To respond to feedback received by youth partners, both the agenda and summary documents are reviewed by the LEWG planning group before circulation to ensure that language is accessible. As expressed by one youth partner, "the language used by researchers needs to be heavily considered … [to be] less clinical, more conversational, empathetic, and informed".
Reviewing the agenda and one-page summary also ensures that youth partners receive an appropriate 'content warning' statement. This was identified as important by youth partners as demonstrated by the following comment, "…what I would like in a pre-brief is a heads up on controversial triggering topics that might come up". As part of the prebriefing process, the first 30 min of each LEWG meeting is spent with youth partners and the LEWG planning group-where trust had already been built-to review the one-page researcher summary to jointly discuss potential feedback points and questions to the researcher(s). As discussed in this paper, young people can find themselves particularly marginalised in academic research settings. Although consumers are increasingly granted participation rights in individual treatment, and as lived experience advisors in research and policy development, power imbalances which favour psychiatric 'expertise' and marginalise the knowledge of consumers still exist. I hope co-design practices will evolve in the future, allowing lived experience terminology and theory to be equally regarded as health professional and academic knowledge. This should hopefully be matched with adequate resources and infrastructure for designated peer-led organisations and spaces, reflecting authentic consumer values at their core.
Though the bureaucratic system of academia will always present challenges, engaging in a co-design process where our feedback was validated and implemented seamlessly drastically improved the processes of our working group.
Having witnessed this process in action gives me renewed hope in bridging the gap between the highly regarded practices of academic research and the unique knowledge of lived experience. Though many gaps in mental health care still exist in Australia, being involved in this research initiative is a crucial step forward to recognise barriers and more importantly, to collectivelywith academic researchers and youth partners equallyfind ways forward to standardise genuine inclusion of youth lived experience voices in mental health research.'  Other: Funding available but not for young people 1 4 Research stage(s) youth partners are/were included in research (N = 25) Managing the research project (e.g., steering/advisory group) 14 56 Designing the research project 13 52 Conducting the research 12 48 Dissemination (e.g., co-publishing) 8 32 Identifying the research topic 7 28 Evaluation 7 2 8 Analysing and interpreting findings 6 24 Acting on the findings 4 1 6 Seeking funding 0 0 Extent youth partners are/were included in research (N = 25)

Provide(d) consultation on specific project components 18 72
Are/were partners on projects designed and developed by researchers 11 44 Are/were included, but their contributions are/were minimal 8 32 Lead/led projects and initiate(d) project action 6 24 Informed but do/did not contribute to its design/operationalisation 5 20 Equally share(d) decision-making responsibilities 3 12 How researchers can improve experiences of youth partners (N = 42) Inclusion of youth partners from the design stage of research planning 30 71 Clear communication how contributions led to outcomes 30 71 Inclusion of young partners from diverse backgrounds 27 64 Better organisation of research activities 21 50 None of the above projects, whilst also providing insightful feedback from youth partners and academic researchers on the acceptability and feasibility on this LEWG protocol. There is a dearth of long-term evaluative work in this field, partly due to a lack of transparency from research teams regarding their protocols and because of limited opportunities for long-term collaborations, particularly with vulnerable populations. 9,11,12 Although the findings presented in this paper are preliminary, they provide important learnings regarding the complexity of creating research processes that are fully inclusive and supportive of young people. In line with existing frameworks that have advocated for a flexible and inclusive approach to participatory research, 22

DATA AVAILABILITY STATEMENT
The data sets used and/or analysed during the current study are available from the corresponding author upon reasonable request.