Meaningful Participatory Research in a Multistakeholder Collaboration on Youth Pathways to Care: Implementation and Reflections

As noted in a Psychiatric Services Open Forum published in the May 2021 issue (1), meaningful engagement with communities in mental health services research is needed (1–3). Participatory approaches to research with people experiencing what is conventionally called “serious mental illness,” their family members, and other stakeholders remain rare in practice (4), particularly approaches that seek to intentionally engage members of intersecting minoritized communities (5). In the United States, major health funders (i.e., the National Institutes of Health) have made relatively little investment in participatory approaches compared with the United Kingdom and Canada. Community involvement in mental health research in the United States often narrowly focuses on obtaining one-directional feedback from individuals with lived experience or social groups that contend with persistent mental health disparities, typically for projects initiated and led by academic researchers (6–8). We therefore reiterate that researchers must do more to ensure that individuals and communities participate as central research decision makers in order to effect substantive and transformative changes in research practice (1). Seeking to contribute to knowledge on collaborative engagement, we established a network of local stakeholders who worked as equal partners in mental health services for youths and young adults. We designed this Patient-Centered Outcomes Research Institute (PCORI)–funded collaborative to build research capacity and prepare partners to conduct their own research projects. Network partners included young adult peers with lived experience, other community providers, and legal advocates seeking to answer questions relevant to their individual or community perspectives. PCORI funding provided an opportunity to convene regularly over approximately 2 years in order to identify key priorities and opportunities for collaboration among partners and participate in capacity-building training sessions. It also enabled network members to codevelop and lead potentially high-impact projects aimed at addressing critically important but underresearched challenges associated with local pathways to mental health care for youths and young adults.

Context: Establishing Need for a Local Collaborative

At the outset of the project, the escalating use of involuntary psychiatric holds in Florida was a topic of regular news reporting across the state. “I got to see them carry my handcuffed child into a facility,” one parent reported to journalists. “He’s [now] traumatized and afraid of everyone” (9). Another headline read, “Handcuffs and a Psych Exam for a 7-Year-Old? Schools Do That Too Often, Parents Say” (10). Meanwhile, the local university-community landscape included few community-engaged efforts to bring together key mental health stakeholders—young adults, advocates, families, and youth-serving organizations—and researchers. Further, local research on serious mental illness had diminished over the previous decade, and area organizations and advocacy leaders conveyed that they did not view the university as a source of meaningful partnership, but rather as an institution promoting extractive or tokenistic relationships. Some paraphrased concerns included, “The university works with us when they’re paid to, and they’re paid a lot with all those indirects. They don’t work with us beyond that,” and “We don’t see the university collaborating with family or people with lived experience except in really limited ways . . . it’s hard to feel like our perspective matters.”

Given these early opportunities and barriers, the university-based team, in dialogue with prospective collaborative members open to the idea of a different kind of research partnership, brainstormed a set of linked but also distinct project activities: gaining a deeper and more collaborative understanding of community distrust (including distrust both of the university and of research more generally), building research capacity that would more directly empower key stakeholders, and facilitating small-scale research projects selected and designed by community partners rather than by university researchers.

Engaging Partners and Taking Stock of Community Concerns

Initial collaborative development efforts cast a wide net to include a maximum number of local agencies and organizations serving youths with significant mental health challenges, including psychosis. This phase of partner engagement involved meetings with representatives from the following local organizations: hospitals serving youths and young adults experiencing mental health crises, the crisis coordination center providing triage across the county, and coordinated specialty care for first-episode psychosis and healthy transitions programs. The meetings also included the county public defender’s office, whose youth diversion programs disproportionately include Black youths with comorbid and severe mental illnesses; the regional Youth MOVE (advocacy) chapter; and the regional agency focused on providing general support and advocacy for Latinx communities, who compose nearly a quarter of the population in the Tampa Bay area and have no organizations focused specifically on meeting their mental health needs.

Monthly meetings were convened in the first 6 months of the project, when lead authors facilitated and encouraged discussion of key issues related to university-community collaboration, youth and young adult mental health, and opportunities for cross-partner collaboration. In tandem, the research team conducted focus groups and interviews with broader constituents employed by our partners, including youth and young adult peer specialists, crisis workers, Spanish-speaking community health workers, and other clinicians. The data collected in these meetings and focus groups supported our initial impressions that many stakeholders viewed research and university-initiated efforts with skepticism and that some providers experienced the push for evidence-based practice (EBP) implementation as imposed and counterproductive. In several focus groups, EBPs were invoked synonymously with “research.” “It’s top down,” one social worker explained, “and if it were really in the best interest of our clients that would be one thing, but often it’s not. The young people we work with know what they want, and [what they want often is] not the supposedly evidence-based things forced on them and us. It’s not meds [they want], it’s not narrow clinical therapies.” One quality improvement director further explained that if governmental funders and insurers would invest “in more meaningful quality improvement,” they would incorporate more robust youth-centered research methods in organizational practice. “Of course we’d love to be interviewing our clients and asking deeper questions . . . but we can’t when the expectations for performance and outcomes reporting don’t map onto this at all. When that’s not what we’re asked or funded to do.” Others asked us to prove to them that research and, specifically, community involvement in research would lead to tangible service improvements. “Give us examples,” they said; “demonstrate that our involvement will in fact make a difference.”

As early meetings continued, two of our largest partners—major hospital and health care systems—bowed out of the collaboration. For these institutions, the issue was not distrust of research per se, but uncertainty about the benefits of their involvement, given their internal research and data-analytic systems, their own research agendas, and lack of either time for or sustained interest in efforts to directly involve other kinds of staff (i.e., clinicians or care managers without a research background) or service recipients. Our remaining partners included three community-based organizations (youth advocacy, youth services, and regional crisis services), the public defender’s office, and the regional family advocacy organization. The numbers of staff involved varied across partners—a single point person in some cases, and a varying range of four to eight attendees for others. Most partners were direct service providers or directors of relatively small nonprofits. The group included multiple peer specialists and several stakeholders with multiple identities: family members, individuals with direct experience, racial-ethnic community members, and clinicians or advocates.

Supporting the Development of Stakeholder-Led Research

Once our collaboration was firmly established, we set a bimonthly schedule of team meetings to discuss and generate feedback on possible ideas for small-scale research projects (or “mini-projects”) that would be designed and co-led by each stakeholder partner or by a team of partners. Partners were encouraged to identify ongoing questions or concerns in service delivery areas so that they could obtain more in-depth information about needed improvements to care pathways, crisis diversion strategies employed with underserved groups, or support after emergency department or other service visits.

In total, one joint-partner and three single-partner projects were developed: a youth peer–led qualitative study of young adult peer workers across the United States, focused on their roles in crisis response and broader perceptions of the unique value of age-matched young adult peer workers in mental health and substance use settings; a joint project involving the public defender’s office and early psychosis program focused on youths involved in the local mental health court and their referral and service engagement pathways, with a focus on entry into specialized early psychosis services; a mixed-methods survey project led by the regional crisis coordination center to understand perceived benefits of crisis triage services and outcomes at follow-up (i.e., to investigate what ended up happening to callers and whether their problems were resolved or addressed); and a community needs assessment designed by the Latinx advocacy agency to identify mental health, social, and structural needs within the community during the COVID-19 pandemic.

Most projects included multisession, hands-on research skill–building training sessions designed to build capacity specific to each project. For example, youth partners learned interviewing methods and coding and qualitative analysis, and crisis center staff gained preparatory experiences in survey methods, design, and analysis. For the juvenile mental health court project, capacity building was more direct and hands on, consisting of collaborative discussion of existing administrative data and evaluation of what information could be used and extracted from diverse court sources.

Implementation Challenges and Successes

As with any participatory project conducted in a complex clinical and social environment, we encountered numerous challenges, were forced to pivot and adapt, and repeatedly faced difficulties attempting to align participatory research ideals with the priorities and constraints of funders, university policies, and researchers. Below, we highlight some challenges that we contend are less frequently discussed in the extant participatory research literature.

Roles, Identities, and Their Complications

Although it is known that most individuals hold multiple identities, the complexities arising from these diverse identities strike us as often undertheorized in the literature. For example, simplistic designations such as “community” versus “university” representatives, as well as cultural, clinical, disability, family, and service user identities were undercut at every turn. At least half of the collaborative partners (cutting across other designated positionalities such as researchers, providers, or administrative leadership) had experienced significant trauma or psychiatric disabilities. Many were family members of people with lived experience. Simultaneously, these dual or multiple identities—and related questions of authenticity—were also at times sources of subtle tension. Both authors identify with marginalized groups (serious mental illness, class, and racial-ethnic minority), and although partners expressed concern about parachute researchers (i.e., researchers who briefly work in a community only to acquire data and then leave to analyze their data without further engagement with the community), we were both in soft-money roles and therefore no less subject than our partners to the precarities of time-limited grant-funded projects, with the constant anxiety such precarity brings. Despite this precarity, we continued to work with several partners in order to finalize mini-projects, continue skill-building sessions, and disseminate findings in the months after funding ended. We have done so because we recognized that participatory research requires a genuine commitment to established community relationships—despite the lack of recognition of the importance of such commitment in academic circles.

Projects With So Much and So Little Future

The research team was deeply inspired and gratified by project successes but also frustrated by underlying structural challenges. On one hand, there was the satisfaction of leveraging a small 2-year grant (with a $250,000 total budget) to enable community partners to identify, design, and carry out important projects in deeply neglected research areas (including the experiences and roles of young adult peer specialists and pathways to care via juvenile mental health courts). On the other, difficulties arose in identifying avenues for continuing these projects in the spirit in which they had been undertaken—as community-led or co-led projects that were animated not by technological bells and whistles, sophisticated statistical modeling, or “clean and controlled” intervention designs but by the experiential wisdom, grit, and commitment of frontline advocates and providers working within severely underresourced systems. This challenge was compounded by the bottom-up priorities of our partners, including a desire for locally meaningful projects that likely would not involve use of EBPs or lend themselves to randomized trials prioritized by major funders such as PCORI and the National Institutes of Health. To address these limitations, we have leveraged available discretionary research funds to support completion of the mini-projects.

Hierarchies Within Teams

It was only at the end of the project, during final debriefing interviews, that we fully realized the extent to which some partners had experienced their involvement as limited not by the university or research team, but by their own supervisors or administrative leadership. Final interviews included some difficult conversations about how we, as researchers, might have better navigated our own complex positionalities in cultivating relationships with organizational leadership, while also empowering staff at the bottom of hierarchies.

Conclusion and Implications

Overall, we completed this project with a deep appreciation for the potential of participatory research truly centering the priorities of community stakeholders, rather than imposing a university-focused agenda. This sense of the huge potential and largely untapped insight of direct stakeholders was nevertheless tempered by a lack of funding and absence of institutional appreciation for our partners’ research priorities. We present key takeaways for researchers undertaking such work in Table 1. Above all, we concluded our work recognizing the need for the field—funders, policy makers, and researchers—to deeply reconsider the politics of knowledge production. We came to appreciate that supporting local stakeholder–led research, even if not performed at a large scale, randomized, or helmed by highly funded researchers, is worthwhile. It is just and necessary and genuinely contributes to transforming and democratizing public mental health services in the United States.