Barriers to Meaningful Participatory Mental Health Services Research and Priority Next Steps: Findings From a National Survey
Abstract
Objective:
A growing consensus has emerged regarding the importance of stakeholder involvement in mental health services research. To identify barriers to and the extent of stakeholder involvement in participatory research, the authors undertook a mixed-methods study of researchers and community members who reported participation in such research.
Methods:
Eight consultative focus groups were conducted with diverse groups of stakeholders in mental health services research (N=51 unique participants, mostly service users), followed by a survey of service users, family members, community providers, and researchers (N=98) with participatory research experience. Focus groups helped identify facilitators and barriers to meaningful research collaboration, which were operationalized in the national survey. Participants were also asked about high-priority next steps.
Results:
The barrier most strongly endorsed as a large or very large problem in the field was lack of funding for stakeholder-led mental health services research (76%), followed by lack of researcher training in participatory methods (74%) and insufficiently diverse backgrounds among stakeholders (69%). The two most frequently identified high-priority next steps were ensuring training and continuing education for researchers and stakeholders (33%) and authentically centering lived experience and reducing tokenism in research (26%).
Conclusions:
These findings suggest a need for increased attention to and investment in the development, implementation, and sustainment of participatory methods that prioritize collaboration with direct stakeholders, particularly service users, in U.S. mental health services research. The findings also underscore the presence and potentially important role of researchers who dually identify as service users and actively contribute a broader orientation from the service user–survivor movement.
HIGHLIGHTS
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A survey of individuals involved in participatory mental health services research in the United States found substantive stakeholder concerns with the quality of participatory efforts and the current level of institutional and funder support for such projects.
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Areas of particular concern included inadequate funding for service user involvement and leadership and lack of adequate researcher preparation and training in participatory methods.
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Participants reported concerns that tokenistic forms of involvement are widespread and noted that service users and other direct stakeholders must have sufficient power to meaningfully influence or colead decisions involved in project design, analysis, and interpretation.
Over the past decade, involvement of direct stakeholders (defined here as service users, family members and caregivers, and community-based nonacademic providers) in mental health services research has increasingly been recognized as best practice, for both instrumental and ethical reasons. Funders such as the United Kingdom’s National Institute of Health Research and Wellcome Trust now require patient involvement in all funded health research, and the Patient-Centered Outcomes Research Institute requires some level of stakeholder involvement. Given gaps in documentation of the landscape of participatory mental health services research in the United States and limited understanding of multistakeholder views regarding barriers, we conducted a multiphase project focused on understanding the barriers to more meaningful direct stakeholder involvement.
Range of Involvement in Participatory Methods
In the broadest sense, the term “involvement” can include everything from periodic consultation (meeting with an advisory board a few times a year over a grant’s life cycle) to formal partnerships with community groups and coleadership by members of the affected community (1–3). As stakeholder involvement has increased, particularly in countries with higher levels of investment in service user participation (e.g., United Kingdom, Canada, Australia, and Israel), critics have also emerged. In the United Kingdom, for example, the user-survivor–led research movement developed at least in part in response to perceptions of tokenism and lack of meaningful control in early “patient involvement” schemes (4–6). In more recent years, a growing number of researchers, including those who identify as psychiatric service users–survivors, have also studied the risks and complexities of service user involvement in research. This critically oriented work has been heavily concentrated in the United Kingdom, Canada, Australia, and Israel, rather than in the United States (7–24)—although some U.S. exceptions exist (3, 23, 24).
Prevalence of Participatory Mental Health Services Research
Several systematic reviews have focused on the use of participatory methods both internationally and in the United States. A 2018 systematic review (25) focused on patient involvement in setting health care priorities identified 70 publications but only one mental health study that had been conducted in the United States. Meanwhile, a 2021 systematic review of the global “community based participatory research” literature (also spanning all areas of health) (26) found that only 9% (N=178 of 1,912) of studies that met inclusion criteria had an explicit focus on mental and behavioral health. A U.S. survey of primary investigators funded by the NIH (27) found that only 11% (N=13 of 122) of these investigators reported any integration of an “advisory board, group or committee of community representatives,” and of those who responded no to inclusion of a board or committee, only an additional 7% (N=8 of 122) reported any other form of “community input.” Participatory methods are certainly used in mental health services research in the United States, but to our knowledge, no U.S.-focused systematic review has been published.
U.S.-Based Concerns Regarding Tokenism in Involvement
Although concerns specifically focused on research inclusion are less prevalent in the United States than in other countries with more developed involvement infrastructure, activists and critical scholars who are focused on stakeholder inclusion in policy, planning, and service implementation domains have repeatedly expressed worries regarding tokenism and a dearth of leadership roles for direct stakeholders (23, 24, 28–35). From the late 1970s through the present, for example, activists have voiced strong concerns about the co-optation (and depoliticization) of originally antiestablishmentarian terms, programs, and frameworks, including “recovery,” trauma-informed care, and shared decision making (28–32). Numerous commentators in the United States have also specifically raised concerns regarding the mainstreaming of peer support along these lines, underscoring disjunctures between a rhetoric of empowerment of peer specialists and notoriously low wages of these workers, lack of opportunities for leadership or advancement, and the siloing of peer specialists within the broader landscape of care (22, 29).
Service User Research Roles in the United States
We are unaware of any dedicated research positions for service users within the United States, such as those existing in Europe, Australia, and Israel (i.e., positions specifically titled with reference to lived experience, such as “service user lecturer” or “consumer academic”). However, a handful of senior researchers in the United States have publicly disclosed psychiatric disabilities, ranging from depression to eating disorders to schizophrenia (36–39), as well as those with disclosed family experience of mental illness (39). Some of these individuals have identified their work explicitly as experience informed, whereas others have not. Overall, the relationship between research led by one or more stakeholder researchers, including service users–survivors, and research employing broader community involvement strategies remains undertheorized in the literature. Similarly, the importance of a match between lived experience and population or intervention is often not substantively discussed—for example, whether it matters that a service user–researcher working on a study of involuntary hospitalization or psychosis has personal experience of these events and conditions (vs. outpatient treatment only or anxiety rather than psychosis).
Institutional Support for Participatory Research
Systematic knowledge regarding the landscape of institutional support for participatory research in the United States is also lacking. Compared with more conventional research methods, participatory approaches appear to be less widely taught in graduate and postdoctoral fellowship programs (40–43). A survey of faculty at three research-intensive institutions with a Clinical Translational Science Award program found that only 36% of participants agreed that community-engaged research was valued in tenure and promotions (44, 45). This lack of support likely reflects, at least in part, the focus of research institutions on faculty “productivity,” understood primarily as a high volume of peer-reviewed publications and federal research awards (45–48). As has been frequently noted, participatory and community-engaged projects often move more slowly, may not result in as many “high-impact” outputs, and may take researchers in less fundable directions, to the extent that they honor the priorities of communities and stakeholders, which may not align with a funder’s favored topics or methods (49–51).
Given these gaps in knowledge and understanding, we endeavored to better understand the range of concerns and perceived barriers to collaboration between community-based stakeholders and academic researchers involved in participatory mental health services research in the United States and to map out stakeholder priorities for improving and expanding participatory mental health services research. In this article, we report mixed-methods findings from a stakeholder survey of researchers and community members with experience of involvement in participatory mental health services research.
Methods
Overview
This mixed-methods study included two phases. In phase 1 (July–August 2020), we recruited multistakeholder consultants from across the United States to participate in a series of virtual consultative focus groups: one for individual service users and family members, two for researchers, one for representatives of advocacy organizations, one for provider agency representatives, two for racially and ethnically diverse stakeholders, and one for youths and young adults (N=61 total participants; N=51 unique participants because of participation in multiple groups). Focus group conversations yielded identification of 17 facilitators and barriers to meaningful participatory research on mental health and behavioral health, which were used to generate domains for phase 2 of the study. Participants included a variety of individuals who had participated in or led community-engaged or participatory research projects; they represented 15 different U.S. states, distributed across the West Coast, East Coast, Midwest, and South. Each group was facilitated by one of the core investigators, facilitator A1 (N.J.) and facilitator A2 (L.C.). Detailed notes were taken collaboratively in a shared-screen document during the focus groups. Participant-consultants were compensated $90 for their time, with each group lasting 1.5 to 2 hours.
In phase 2, we (N.J. and L.C.) synthesized domains from the focus groups along with an additional researcher who was introduced to the project through the consultation process. The team then designed a series of survey questions intended to capture participants’ backgrounds and experiences with participatory methods. The preliminary survey was piloted with a small number of stakeholders, refined, and then administered online. All survey respondents were eligible to request $20 as compensation.
Survey flyers were broadly disseminated, with the following strategies: targeted e-mails to contact authors of articles about U.S-based participatory mental health research, which were identified by systematic journal searches; e-mails to researchers known to the project team (or suggested by consultants); recruitment messages disseminated via social media and Listservs for people with lived experience, including the National Coalition for Mental Health Recovery, National Mental Health Consumers’ Self-Help Clearinghouse, and the Transform Mental Health Research user-survivor researcher group.
Project Leadership and Coauthor Positionality
The two coleaders of the project (N.J., L.C.) conceptualized the project. Facilitator A1 identifies as a White service user–survivor researcher, with both personal and family experience of schizophrenia and public-sector mental health programs, disability benefit schemes, subsidized housing, and voluntary and involuntary services. Facilitator A2 (L.C.) identifies as a Latina and as a Latina first-generation scholar, with family experiences of psychiatric conditions and navigation of public mental health services, including crisis services and inpatient hospitalization. Coauthors (many of whom were involved as stakeholder-consultants in the focus groups for this project) included a mix of researchers and students, both with and without personal experience of mental health challenges or family experience. All authors have direct experience with participatory research projects.
Survey and Interview Instruments
The final version of the survey included 17 items that were grouped by domain (community relationships and understanding, direct involvement of stakeholders, structural barriers, and lack of sensitivity on the part of researchers) and converted to close-ended survey items (Q2.2–Q9.5 in the survey included in the online supplement to this article). Items were scored on a 5-point scale, with anchors 1, not a problem, and 5, very large problem. The survey also included two open-ended questions. The first solicited information on additional barriers that respondents wanted to emphasize beyond those listed, and the second solicited priority next steps for the field. Respondents could provide additional information regarding their research and psychiatric lived experiences in free text.
Survey Administration
The final survey was reviewed by the University of South Florida Institutional Review Board, which determined that it was exempt from continuing review. The online survey was open to participants from September 2020 to June 2021.
Results
Sample
Demographic characteristics, research-related roles, and psychiatric lived experiences are reported for the full survey sample in Table 1, along with those details for the subset of respondents who also provided open-ended responses. Relative to the U.S. population, minority ethnoracial groups were underrepresented in the survey. In the full sample, the number of participants who reported roles of researcher only, stakeholder only, and dual researcher-stakeholder were relatively similar (40, 33, and 25, respectively). Most participants indicated a lifetime psychiatric diagnosis (N=81), although only about a third (30%) said that they consistently disclosed their diagnosis in the context of research. A few researchers who opted not to disclose provided some context of their decisions. For example, one noted, “I am a clinician and researcher as well as a person with lived experience of mental illness. BUT I am not open about my lived experience in my professional life—due to perceived and internalized stigma and worries about how it will affect my professional advancement.”
| Full survey (N=98) | Open-ended items (N=78) | |||
|---|---|---|---|---|
| Characteristic | N | % | N | % |
| Race-ethnicity | ||||
| White | 73 | 74 | 60 | 77 |
| Black | 11 | 11 | 7 | 9 |
| Hispanic-Latinx | 4 | 4 | 2 | 3 |
| Asian | 7 | 7 | 6 | 8 |
| Native American or American Indian | 2 | 2 | 2 | 3 |
| Middle Eastern | 1 | 1 | 1 | 1 |
| Gender | ||||
| Cisgender woman | 62 | 63 | 51 | 65 |
| Cisgender man | 12 | 12 | 10 | 13 |
| Nonbinary | 5 | 5 | 5 | 6 |
| Two spiriteda | 2 | 2 | 1 | 1 |
| Other | 1 | 1 | 6 | 8 |
| Missing | 16 | 16 | 5 | 6 |
| Education | ||||
| High school or some college | 12 | 12 | 11 | 14 |
| Bachelor’s degree | 9 | 9 | 8 | 10 |
| Master’s degree | 21 | 21 | 20 | 26 |
| Current doctoral student | 5 | 5 | 5 | 5 |
| Ph.D. or M.D. | 26 | 27 | 24 | 31 |
| Missing | 25 | 26 | 10 | 13 |
| Role in participatory projects | ||||
| Stakeholder only | 40 | 41 | 27 | 35 |
| Researcher only | 33 | 34 | 30 | 38 |
| Both researcher and stakeholder experience | 25 | 26 | 21 | 27 |
| Type of stakeholder experienceb | ||||
| Service user only | 20 | 32 | 13 | 28 |
| Family only | 6 | 10 | 6 | 13 |
| Service user plus family | 2 | 3 | 1 | 2 |
| Family plus provider | 1 | 2 | 1 | 2 |
| Service user plus provider | 23 | 37 | 18 | 39 |
| Provider only | 1 | 2 | 1 | 2 |
| Service user plus family plus provider | 9 | 14 | 5 | 11 |
| Other | 1 | 2 | 1 | 2 |
| Psychiatric experiencec | ||||
| Psychiatric diagnosis (any lifetime) | 81 | 83 | 66 | 85 |
| Never disclosed in a research context | 19 | 19 | 16 | 21 |
| Disclosed in some but not all projects | 33 | 34 | 26 | 33 |
| Disclosed in all research projects | 29 | 30 | 23 | 29 |
| Disclosure data missing | 0 | — | 1 | 1 |
| Psychosis diagnosis | 8 | 8 | 8 | 10 |
| Involuntary hospitalization | 18 | 18 | 13 | 17 |
| Voluntary hospitalization | 27 | 28 | 22 | 28 |
| Homelessness | 18 | 18 | 15 | 19 |
| Arrest | 19 | 19 | 17 | 22 |
| Family or caregiver experience | 36 | 37 | 26 | 33 |
a
Native American third gender for people who can be male, female, and sometimes intersexed individuals, combining activities of both men and women.
b
Stakeholder roles explicitly and publicly drawn on in research among those involved as stakeholders. N=63 for full survey sample and N=46 for open‐ended question survey sample because only a subset of participants identified as stakeholders.
c
Not all respondents had a psychiatric experience.
Just over a quarter of respondents (28%) had been voluntarily hospitalized for mental health reasons, and 18% were hospitalized involuntarily. Moreover, 18% had experienced at least one period of homelessness, and 19% had been arrested. Among survey respondents who indicated having been involved as a direct stakeholder representative in research (service user, family, or community provider), most checked two or more categories, such as service user, family support, and provider (Table 1). Multiple responses to related open-ended items spoke to the complexity and fluidity of these roles. For example, one respondent wrote, “I’m not sure when I’ve been a stakeholder or researcher all the time. For instance, in one project, I was a volunteer for an organization that had a subgrant on a project. As a volunteer and directly affected community member, I organized a focus group with stakeholder participants that informed the research and constituted the basis of the research. But I wasn’t paid and wasn’t involved in the decisions overall about the project. So was I a stakeholder? Or a researcher?”
Perceived Barriers: Close-Ended Items
Participants were surveyed about 17 specific barriers. All barriers were rated on average between 3.4 (moderate problem) and 4.0 (large problem), and 14 were identified by most participants as large or very large (rating of 4 or 5) problems in the field (Table 2). Of these, the six barriers identified by most respondents were lack of dedicated funding for stakeholder-led research (76%), lack of training in participatory methods (for students and researchers) (74%), lack of diversity among stakeholders involved (69%), lack of support for compensating stakeholder involvement in grant writing or preparatory activities (68%), researchers undermining or underestimating the contributions that nonresearchers can make (64%), and lack of opportunities for stakeholder leadership (63%).
| Problem score (M±SD) | Perceiving barrier as large or very large problem | ||
|---|---|---|---|
| Barrier | N | % | |
| Related to community relationships and understanding | |||
| Community members not seeing research as a priority | 3.4±1.1 | 43 of 90 | 48 |
| Community members having low levels of trust in researchers | 3.5±1.2 | 43 of 90 | 48 |
| Projects failing to benefit the community in a meaningful way | 3.6±1.2 | 56 of 91 | 62 |
| Basic research goals being met, but the project does not result in meaningful output (e.g., the project did not benefit the community or bring about community change) | 3.8±1.2 | 56 of 90 | 62 |
| Related to direct stakeholder involvement | |||
| Research teams involving stakeholders primarily to check a box, rather than being genuinely invested in the priorities of these stakeholders and what they have to say | 3.6±1.3 | 53 of 91 | 58 |
| Administrative policies limiting the extent to which nonuniversity affiliates can be involved in the research process (e.g., institutional review boards limiting access to data) | 3.7±1.2 | 52 of 85 | 61 |
| Researchers undermining or underestimating the contributions that nonresearchers can make to the research project | 3.7±1.3 | 58 of 91 | 64 |
| Not including stakeholders or stakeholder communities that come from diverse backgrounds | 3.8±1.3 | 62 of 90 | 69 |
| Lack of opportunities for stakeholder leadership (e.g., leading analyses, being lead author of manuscripts) | 3.8±1.1 | 55 of 88 | 63 |
| Structural | |||
| Lack of program or university support for the additional effort and time involved in participatory research | 3.6±1.3 | 45 of 83 | 54 |
| Lack of explicit support or encouragement for stakeholder involvement from major research funding entities | 3.6±1.3 | 52 of 87 | 60 |
| Lack of support for compensating stakeholder involvement in grant writing or preparatory activities | 3.9±1.1 | 58 of 85 | 68 |
| Lack of training in participatory methods, particularly among graduate students, fellows, and trainees | 3.9±1.2 | 63 of 85 | 74 |
| Lack of dedicated funding for stakeholder-led research projects (including service user stakeholders) | 4.0±1.1 | 65 of 86 | 76 |
| Lack of sensitivity on the part of researchers | |||
| Conducting research in ways that unintentionally harm or retraumatize stakeholders who have lived experience with the research topic | 3.4±1.3 | 46 of 92 | 50 |
| Researchers using language that stakeholders might disagree with or find offensive | 3.4±1.2 | 50 of 91 | 55 |
| Using medical, clinical, or academic terms that are hard for nonresearchers to understand | 3.5±1.1 | 51 of 92 | 55 |
a
Items were scored on a 5-point scale: 1, not a problem, and 5, very large problem (large or very large problem, 4 or 5). Respondents who noted that they did not know enough to respond were excluded from the denominator.
Additional Barriers: Open-Ended Items
Coding of open-ended questions regarding additional barriers not covered in the survey yielded three additional concerns: inadequate stakeholder compensation or barriers to compensating stakeholders, needed research training for stakeholders, and research projects and priorities rarely stemming from or identified by direct stakeholders. These responses provided specific examples of how barriers to equitable stakeholder participation in research are enacted. Regarding stakeholder compensation, multiple participants noted barriers at the institutional level. For example, one respondent noted, “HR policies at universities frequently discourage participation of stakeholders as equal participants in the research process. Pay equity issues…; if stakeholders don’t have formal education degrees, it makes it more difficult to hire them.”
Others emphasized a lack of funder support for stakeholder-led research or collaborative leadership of studies. As one respondent wrote, “There is a lack of resources to support true involvement of stakeholders—funding institutions need to prioritize this.”
Respondents who identified as researchers expressed concern that stakeholders often lack adequate training in research methods and concepts: “Community members (lack) access to trainings/education to build skills and confidence to engage in research.” Conversely, nonacademic stakeholders expressed difficulties navigating jargon, following what researchers were saying, or communicating their own ideas in ways that researchers would understand. One respondent wrote, “The main barrier I personally came across was terminology and my inability to define many words, phrases, and clinical or psychiatric language or comprehend initially that I was discussing the same issues as others, just used different wording.”
Finally, multiple participants expressed concerns tied to conventional hierarchies involved in the identification of research priorities or design of studies. That is, they were concerned about researchers pursuing trajectories and topics (with funder support) that do not necessarily reflect stakeholder priorities. “Researchers have preconceived ideas of what they want to study and do not want [to] change what they are studying,” one respondent noted. “They are deaf (sic) to experiential knowledge of stakeholders, in terms of mental health and community response to what they are doing.”
Most Important Next Steps for the Field: Open-Ended Items
Seventy-eight participants (80% of the total sample) provided responses to our open-ended question regarding the most important next steps to advance participatory mental health services research in the United States. We did not code responses that did not offer further action. Table 3 presents the six thematic groups identified, frequency of responses, and example quotations. The two most prevalent thematic groups were “ensure training and continuing education for researchers and stakeholders” (33%) and “center lived experience and reduce tokenism in research” (26%). Other thematic categories involved calls to establish processes or mandates for the following: increasing outreach to community stakeholders (23%), increasing accountability to community stakeholders (21%), increasing funding investments and stakeholder compensation (21%), and increasing structural incentives or requirements for stakeholder inclusion in research (17%).
| Theme | N | % | Example quotations |
|---|---|---|---|
| Authentically center lived experience and reduce tokenism in research | 20 | 26 | For the most part, I see researchers engaging in participatory research in very superficial ways, and it’s rare to see anything like true leadership except when the lead researcher . . . has lived experience. [Practice] deep listening by all and centering those with lived experience more than those who are researchers only. |
| Increase accountability to community stakeholders | 16 | 21 | Stakeholders must be involved from the start. People must feel invested in the process. . . . Also, results should bring changes that are sustainable. Prioritize beneficial outcomes for individuals and the community. |
| Increase structural incentives or requirements for stakeholder inclusion in research | 13 | 17 | Universities need to reward researchers (through hiring, promotion, etc.) who involve community partners, because the process may take longer than traditional research. Consider changes to institutional review boards to eliminate policy-based barriers to thoughtfully engaging external stakeholders in the research process. |
| Increase investment by funding entities and facilitating compensation for community researchers | 16 | 21 | There needs to be commitment from major funders, such as the NIH. Researchers should be expected to involve stakeholders in the majority of health services research. Funding agencies [need to] prioritize nonacademic stakeholder participation in CBPR [community-based participatory research] by providing sufficient funding and training. Federal funding grants [should] require stakeholder participation, training, and [compensation for] involvement. |
| Ensure training and continuing education for researchers and stakeholders | 25 | 33 | [Provide] education for stakeholders on research; vice versa, [offer] education on best practices for engaging stakeholders with lived experience. [There should be] more widely available training in best practices for participatory research. All disciplines would benefit from being more thoughtful and critical in their epistemological training, their training in the history of science, and knowledge production and knowledge exclusion and from engaging in a lot of self-reflection about their own power and exclusionary practices. |
| Increase outreach to stakeholder communities | 17 | 23 | Better outreach so that there are more opportunities and awareness of opportunities for stakeholders to become involved. More promotion in diverse communities and efforts to ensure that those with lived experience are the ones front and center in said promotions. |
Discussion
We report results from what is to our knowledge the first U.S.-based study aimed at capturing multiple stakeholder perspectives on the landscape of participatory mental health services research in the United States, with a focus on barriers to meaningful participation and high-priority next steps for the field. Consultative focus groups and survey findings identified consistent concerns within our sample regarding the extent of structural, institutional, and team-level barriers to meaningful research participation. Structural concerns were particularly prominent, with three-quarters of the sample endorsing lack of funding for stakeholder-led research as a major problem, followed by lack of researcher and student training and preparation in participatory methods and lack of funding for stakeholder involvement in grant writing and early-phase planning. Insufficient diversity related to stakeholder backgrounds was also endorsed by nearly 70% of the sample (the survey did not define diversity, and thus this response might reflect a lack of ethnoracial and sociostructural diversity, diversity of experiences and perspectives, or both). In the initial consultative focus groups, on the other hand, multiple forms of problematic homogeneity were mentioned: overrepresentation of stakeholders with college degrees, exclusion of stakeholders with enough knowledge of research methods and analytics to critique the work being conducted, lack of ethnoracial diversity, and failure to include individuals with perspectives critical of the research lead’s focus or approach.
Implications
Stakeholder (service user–survivor, family, and nonacademic provider) involvement in mental health services research remains markedly underdeveloped in the United States. Other countries have developed formal guidance on required levels of service user involvement and minimum compensation standards and have directly invested in capacity building for participatory methods (52). However, no equivalent federal action or policy currently exists in the United States. Also, no research centers are currently explicitly focused on best practices in service user involvement or leadership in research, apart from unfunded grassroots coalitions (for example, the coalition Transform Research [transformmhresearch.org]). Our findings strongly suggest that explicit national leadership in the United States, particularly from federal funders, could substantially strengthen the uptake and resourcing of participatory mental health services research. Training of researchers at various career stages via national professional associations (psychiatry, psychology, and social work) could also help promote participatory curricula and encourage academic departments and research centers to incentivize stakeholder involvement in all aspects of research.
Our work also speaks to the need to better delineate diverse perspectives on potentially fuzzy constructs such as “lived experience,” “stakeholder,” and “community.” In the broadest sense, the term “lived experience” might include every adult in the United States, especially if mild depression or having ever received a prescription for an antidepressant or anxiolytic is included. Greater clarity regarding who needs to be integrated into a given project and transparency as to whether this has happened seem fundamental to ensuring that stakeholders with the most pressing needs are involved in research as key contributors to study design, data collection, interpretation of results, and dissemination of findings (3). A further set of issues that appears underdeveloped involves the different contributions and needs of persons with lived experience and family stakeholders with advanced degrees or academic appointments versus those without formal research training (Box 1), as well as considerations tied to other “multiple role” configurations (such as personal lived experience plus family experience).
BOX 1. Recommendations for policy and practice to strengthen uptake of participatory mental health services research in the United States, by stakeholder or entity
Funders
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Mandate or concretely incentivize stakeholder involvement in services research.
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Sponsor a formal report on current practices and strategic areas for growth and strengthening of service user involvement in mental health research.
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Issue a statement affirming the importance of service user and family involvement in mental health services research and endorsing best practice guidance.
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Instruct reviewers to look for and comment on service user involvement plans and to look for explicit service user involvement as part of the core team (i.e., listed as key personnel vs. consultants or advisory group members only).
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Issue guidance for authentic stakeholder involvement, including best practices in collaborative and participatory methods, engagement of historically underrepresented communities, linguistic and cognitive accessibility, and expectations for minimum compensation.
Professional Associations
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Develop and promote model guidance on participatory methods training and promote integration into all accredited doctoral training programs.
•
Issue policy statements advocating for use of participatory methods.
Universities and Research Centers
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Develop tenure and promotion guidelines that incentivize meaningful participatory methods and adjust for often expanded project timelines.
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Invest in participatory methods courses and training institutes.
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Streamline processes to ensure that community members working on participatory projects have access to university resources (e.g., paywalled journals) and can be included on university institutional review boards.
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Streamline processes to ensure timely and equitable financial compensation.
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Meaningfully include consideration of psychiatric disabilities in diversity, equity, and inclusion initiatives as well as admissions and faculty hiring schemes.
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Address discrimination against persons living with and stigma of mental illness in programs and research centers, with the understanding that many researchers do not disclose because of credible risks or threats of prejudice and discrimination.
Researchers and Research Groups
•
Seek out and participate in available training and continuing education focused on participatory methods.
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Commit to building out roles and involvement mechanisms that are nontokenistic and that equitably share decision making with directly affected service users and family members.
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Explicitly engage in collective discussion of diverse roles and identities, including team members who occupy multiple roles.
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Dedicate careful thought and attention to the diversity of the stakeholders including race-ethnicity, socioeconomic status and background, LGBTQ+ identities, disability, experience of the mental health and associated systems (incarceration, child welfare), and diversity of perspectives (critical-affirmative) on focus topics.
•
Invest in a lived experience research pipeline, beginning with undergraduates and extending through to senior research roles.
•
Build in accountability mechanisms, potentially including third-party evaluations, opportunities for anonymous feedback, and project audits that carefully track project changes made in direct response to stakeholder concerns or priorities.
Finally, this preliminary work points to a need for more concerted attention to the ethics of participatory mental health research and of representation in such research in a democracy (53,54). For example, do government funders and publicly supported institutions have an ethical obligation to stakeholders, both with respect to inclusion and support for research capacity building, inclusive of leadership roles? And what does it truly mean to undertake ethically sound participatory research—for example, does it include work in which the financial and professional rewards of studies are truly equitably distributed?
Limitations
Because no established directory or community of individuals engaged in participatory mental health services research was available, we undertook a purposive sampling strategy rather than nonprobability sampling. We cannot make any claims regarding the generalizability of this project’s findings. Nevertheless, given our multiphase participatory research process, our findings provide credible insight into and clear examples of barriers likely affecting stakeholder involvement in the United States. Additionally, participants from ethnoracial minority groups constituted only about 25% of the survey sample, although representation was much more substantial in our consultative focus groups. This imbalance may reflect underrepresentation of these groups in participatory research or underrepresentation within the survey sample. The involvement of stakeholders reflecting intersectional diversity should be a high priority for the field.
Conclusions
The United States lags many other high-income countries in adequately resourcing participatory work. The findings reported here help identify potential targets for action and underscore the need for increased funding, funder support, training opportunities, and capacity building to stimulate participatory mental health services research.
Acknowledgments
The authors acknowledge the involvement of the many participants involved in both phases of the project and Leigh Smith for help with survey design and programming.
Supplementary Material
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Information & Authors
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Published In
History
Received: 6 October 2022
Revision received: 13 December 2022
Revision received: 23 December 2022
Accepted: 4 January 2023
Published online: 20 March 2023
Published in print: September 01, 2023
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Author Contributions
Drs. Jones and Callejas contributed equally to the project and to this article.
Competing Interests
The authors report no financial relationships with commercial interests.
Funding Information
This study was funded through a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) (10252-USF; principal investigator, Dr. Jones).The views in this article represent the opinions of the authors and are not necessarily those of PCORI.
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